Wishing everyone a blessed 2009! Tonight Nana and I are spending the new year together. Mark went to the casino in Lakeport with our neighbors for the evening. I can't go to casinos anymore because of the smoke, the risk of getting sick and the air flow in those places. So Nana and I just got home from having a beautiful dinner at Rivera. Rivera is a small Italian restaurant owned by Lucia and Rita. They called me almost everyday when I lived at the hotel worrying about me after the heart transplant. So when I called them to let them know I was coming they were so excited. They gave me a beautiful orchid plant and Lucia cooked a fabulous dinner.
Nana and I had a wonderful moment in time. Gary and Debbie, after I paid, had already paid for our dinner. Rita came running out to tell me it was already taken care of. How many thank yous can I say to Gary and Debbie. They have been my angels and I love them both so much. So now we are relaxing in our reclining chairs watching a movie called "Almost Famous" with Kate Hudson. Nana and I are not too expressed. It's not Sex in the City, that's for sure! I watch one of the series to Sex and the City each day I ride my bike for 45 minutes. My heart is pumping and I don't think its the bike ride. HA HA!
Today I met with Dr. Acktar, Chemo Doctor from Kaiser. He went over the formal report from Stanford with Mark and I. Nothing I don't already know. I will have more blood work done on Friday to determine the Amyloidosis count to start a baseline. My last count was done on 11-14-08 and was 206. The normal range is 19. I have a long way to go but they feel confident with the second chemo drug Valcade, and what I'm taking now Decadron, that the disease will be put in remission. I will start Valcade next week and I am ready to get going to put this disease in remission. 2009 will be a good year! I will be healthy and enjoy every moment!
I hope everyone has a safe and joyous New Year! Please say a prayer for my donor family giving them strength in their time of sorrow. My love and gratitude goes out to them tonight. I want them to know they are always in my prayers and that Jazmin is with them always!
love,
Debbie
Wednesday, December 31, 2008
Monday, December 29, 2008
The New Year
2009
What does it mean? For me it means second chances, time to reflect on the year past and just how grateful I am to be sitting here writing this post.
I also have mixed feelings. I hope everyone read my last post on December 24th, honoring my angel, Jazmin Iris Mitchell. I have so much to be grateful for and to look forward to in the new year but my feelings deep inside are hurting for my donor family. How can I be so happy when they are faced with so much sorrow. That's when I ask for help from God and my angel. I hope my donor family knows each day doesn't go by without them on my mind. I pray for them and can't wait until the day I can show them my love and gratitude.
So, 2009 I plan to spend it fighting this disease and being healthy. I want to do the things I have put off for so long. First on my list is to continue my lessons in Italian, finish my photo album from my trip to Italy in 2005 and start my other albums, exercising and eating right and enjoying every moment and I mean every moment!
Today was really FUN! I got to drive for the first time in almost 4 months. It felt so good to get my little red car out on the road, turn the music up really loud and just drive. It would have been really fun going topless (the car not me, HA HA). I felt free!! I really thought about taking a drive to Palm Springs. Wow wouldn't that be fun! I love the hot weather, water and just relaxing. Well, I can dream! Reality sets in and I realize I can't go that far right now but soon! It's amazing how much better you feel being able to do things on your own. It's very liberating!
Christmas was wonderful except I was really sick that day. I'm not sure yet if it was a flu bug or spicy Italian food I ate the night before, but I was really sick. I couldn't take my meds and Dr. Dana was threatening to put me in the hospital to infuse meds. So she gave me time to get them down and keep them down. It took until 3:00PM just to get the morning ones in and then I started all over again at 6:00PM. I felt better but a little wiped out the next day. Maxwell left for Canada on Friday. Matt and I drove to the airport to drop him off and it was very sad. I miss him so much. He stayed by my side the whole time he was here. We had so much fun. He is such a great son and I'm so proud of him. He's back in Innisfil playing hockey. The airline lost his new sticks so he's not happy right now. Hopefully, they find them soon! Matthew left on Sunday with Cassie, his little dog. Grandma (me) babysit Cassie the whole time she was here. She slept on my lap in the chair all day and all night. She is so loveable. I know she misses me now. It was great having all three of my boys here and of course my beautiful daughter (I hate the word daughter in law, and Erin knows it). You forget all the funny things they say and do when they are together. Why do they have to wrestle with each other or their dad?
Wednesday I have my first appointment with Dr. Atktar who is the chemo doctor here in Santa Rosa. He will be treating me and prescribing the chemo drug Valcade. I should start that next week. Hopefully, not too many more side effects from the ones I have already. I will take Valcade once a week for 4 weeks and then have 2 weeks off and then back on. As I said before, Stanford wants me to do this for 4-6 months and if my count for Amyloidosis is not decreasing then I have to consider the stem cell transplant. It's going to work!
Need to close for now have to go back to Kaiser to pick up my refill of meds. Have a wonderful evening. I posted this saying a while ago and wanted to post it again. Markie and Erin gave me a beautiful silver heart and this is inscribe on it:
LEARN FROM YESTERDAY
LIVE FOR TODAY
HOPE FOR TOMORROW
Love,
Debbie
Wednesday, December 24, 2008
Jamae Domonique Mitchell and Jazmin Iris MitchellTwins for Life
Jazmin Iris MitchellMY ANGEL
Jazmin Iris Mitchell was a beautiful 18 year old woman. She was loved by her family. I am told she loved the color purple, dreamed of traveling, becoming a veterinarian, was engaged to be married to Marco, honest, loving, strong, compassionate, accomplished artist and is my angel!
She is my donor and I will always be grateful for the gift that she and her family gave to me on the night of September 26, 2008. I want my friends and family to read and see what a beautiful woman she was.
How do you say thank you to a family who is still grieving the lost of a child. I have lost two children myself, my twins Joseph and George. Tragically, my donor family has also lost two children, twin daughters Jamae on December 2, 2006 and now Jazmin on September 22, 2008. My twins were babies and yes the hurt never goes away but nothing compares to the lost of two daughters at the prime of their lives. I want so much to hug their Mom Evelyn with my shared heart, her daughter Jazmin’s heart. I want her to feel Jazmin beating inside me. Evelyn has said after the holidays that we will meet and I will hold her so tight, because I know that is what Jazmin would want me to do. I can’t wait for that moment in time. It will definitely take my breath away!
I look and talk to Jazmin each morning. I thank her and tell her we have a full life to live. She wanted to travel and I promised her good friend Sonia that I would take her traveling and see the world. I plan to go back to Italy in two years when the doctors give me the ok to travel. I want to see Paris, Ireland, Greece and even places in the United States like Washington DC, Niagara Falls, The Liberty Bell, Lincoln Memorial, Yosemite, Vietnam War Memorial, and Arlington Cemetery. She will be with me sharing these moments.
Jazmin saved many lives that night and is truly a HERO! Her life will always live on in all of us who received life saving organs from this beautiful woman. I know I will always cherish my shared heart. I speak of our heart as “shared” because my good friend Doctor Kevin Anderson, who received a heart transplant on August 15, 2008, first spoke of his donor’s heart as shared. I thought that was very interesting to call our new hearts “shared” but he is right. Jazmin lived for 18 years with the heart that is now beating inside me and I will live the rest of my life with her heart, so we are sharing this beautiful strong heart.
So my wish is to honor this beautiful woman and her loving family. I hope my family and friends will welcome them into our lives and pray for them in their time of sorrow.
Love to My Donor Family,
Debbie
Debbie
MILLION DOLLAR GIRLS
Tippi and me waiting to go in for our heart biopsy yesterday at the heart transplant center. Tippi received her heart transplant on 8-28-08. I met Tippi at my first heart transplant support group on 8-12-08. That was the day she was admitted to the hospital to wait for her heart. I knew the first moment we met that we would be friends for life. Not a moment in my day goes by where we don't text, talk on the phone or the computer. She is a sister to me! We have lots to do yet in our lives and I want to share moments with her. She has a beautiful family that supports her - husband Scott, son Rob and daughter Bri along with Mom, Dad and sister Lisa.
Today is Wednesday (day after biopsy) and we both are waiting for the phone call from the doctor about our heart biopsy results. I will post the results as soon as I get my call. All lab work looked fine to me when I checked it last night but still need to talk to the doctors. Look for my special posting tonight also. Merry Christmas!
love,
Debbie
BIOPSY RESULTS
What a Christmas this will be! Just received the call from the nurse at the heart transplant center regarding my heart biopsy results. I got an NER - no evidence of rejection!! That is GREAT!! The best result was no evidence of Amyloidosis in my new shared heart. I am so happy because I want to protect my new heart. I get to decrease my presidone to 5mg per day but that won't make too much of a difference since I took 40mg of Decadron today. Oh well what ever it takes to put the disease to rest so I can live a healthy life.
I have a very special post after this one. It means so much to me because I believe my angel, Jazmin is watching over me. She won't let anything happen and that's the reason why I am doing so well! Her family did say she was very loving and caring. I believe them! May you have a blessed Christmas and please say an extra prayer for my donor family.
Love, Debbie
Monday, December 22, 2008
It's late and I should be fast asleep but went to bed too early so now I'm up. I laid in bed thinking I should go back to sleep and then decided to get up and write this posting.
I spent the weekend enjoying new traditions and spending time with my boys. Saturday didn't start out very well. Saturday was my day to crash from the drug Decadron. They say on the third or fourth day is when it hits you and side effects can be different. That is true. Some days I'm fine and others I'm not. Well Saturday was about the worse! I felt extremely fatigue and out of it. We were planning to go to San Jose to spend Saturday with Erin's family celebrating Christmas. I knew how important it was to Grandma Ruby to see me, so I decided to go.
We had a few stops to make before - Hockey Xsport in Oakland. Maxwell needed two new hockey sticks and blades. I haven't been there for years when the boys were little and both in hockey together. It brought back lots of memories driving them everywhere to pick up hockey gear. I know at the time it was a pain but I would give anything to have those days back again!
We arrived at Grandma Ruby's house and everyone was there. Uncle Bob, Aunt Barb, Andrea, Michael, Martie, Jeff and Grandma Ruby. Grandma Ruby will be 91 years old in January and is so full of life. I watched her enjoying every moment in time spent with her family that day. We had a wonderful dinner prepared by Aunt Barb and Jeff and during dinner Grandma Ruby surprised all of us. She had written a paper about her life and wanted her family to know everything about her. She read a three or four page story of her life and as she read the story I found myself thinking she is a remarkable person. At 91 years old she wanted her family to know the accomplishments she achieved in her life such as owning her own business in the 1960s called "Martha Lee Designs" in which she employed 30 employees making small doll clothes for the then famous "Barbie" dolls. She went on to received several degrees at San Jose State University before retiring. She and her husband after retirement enjoyed traveling every where including Europe and the far east. She was so proud to share this moment in time with her family and I was happy to be there.
After dinner Mark, Markie and Maxwell left for the Sharks game. Grandma Ruby loves ice hockey and especially the Sharks. She knows everything about the team and the players. Grandma Ruby spends lots of time on her computer looking at the team stats and standings. She emails Markie all the time about current Shark events and he enjoys talking to her about the team. Her favorite player is Johnathan Chechoo #14. Grandma Ruby loves her Sharks!
This was my first time at Grandma Ruby's house for Christmas. I was so lucky to be included in their family tradition of gift giving and enjoying each other's company. Uncle Bob took the role of Santa wearing a special Santa hat that I assumed he wore each year. Each gift was given out in a precise order and was opened by the receiver before the next one was given out. Uncle Bob made sure that the person had plenty of time to open and thank whoever gave the gift to them. It was not a rushed event! Unlike, my childhood memories of Christmas gift giving where the hour spent was so rushed no one could remember who gave what! This was different. We spent time talking and enjoying the moment with each other. I kept looking at Grandma Ruby and thinking how wonderful it was to have her there sharing this moment. I told Martie it was a special time for me and it took my breath away. I'm so happy I made the trip even though I wasn't feeling well. I slowly became tired and fell asleep as they finished opening their gifts. Jeff was so kind to take Erin and I back to the hotel and you guess it I feel fast asleep.
Sunday, I spent the whole day home just relaxing and really doing nothing at all. Today is Monday and Mark and I will leave for San Jose around 2:00PM. We are staying at a hotel and I have my routine heart biopsy on Tuesday at Kaiser Heart Transplant Center at seven in the morning. Its been a month since the last heart biopsy and I'm really nervous. Tippi feels the same. I know it will be fine but its the unknown and the wait for results that always makes me crazy. This is something I will have for the rest of my life. I will have heart biopsy every month for the first year and then I believe it drops to one every three months and then one every six months. This next one will included the congo red test for Amyloidosis in which they will take a few extra pieces of the heart to test for Amyloidosis. My last test was negative and I hope this one will be too!
Today before I leave Mom and I will go grocery shopping for Christmas dinner. Maxwell asked for my homemade lasagna on Christmas Eve with Italian sausage. I have enjoyed preparing all of his favorite meals. The other night it was great smelling hot brownies cooking in the oven. It brought back memories of waking up at midnight smelling brownies cooking in the oven. Maxwell would cook brownies and eat only the middle of the pan. I'd wake up the next morning to find a pan of brownies with the middle gone. I would give anything for those moments again!
I have a special posting this week I'm working on. It means so much to me and I want it to be right. It definitely takes my breath away and I'm sure it will you!
It's almost two in the morning and I better get some sleep. I will post results on Wednesday of heart biopsy and of course my special Christmas posting.
Enjoy those moments in time that take your breath away!!
love,
Debbie
I spent the weekend enjoying new traditions and spending time with my boys. Saturday didn't start out very well. Saturday was my day to crash from the drug Decadron. They say on the third or fourth day is when it hits you and side effects can be different. That is true. Some days I'm fine and others I'm not. Well Saturday was about the worse! I felt extremely fatigue and out of it. We were planning to go to San Jose to spend Saturday with Erin's family celebrating Christmas. I knew how important it was to Grandma Ruby to see me, so I decided to go.
We had a few stops to make before - Hockey Xsport in Oakland. Maxwell needed two new hockey sticks and blades. I haven't been there for years when the boys were little and both in hockey together. It brought back lots of memories driving them everywhere to pick up hockey gear. I know at the time it was a pain but I would give anything to have those days back again!
We arrived at Grandma Ruby's house and everyone was there. Uncle Bob, Aunt Barb, Andrea, Michael, Martie, Jeff and Grandma Ruby. Grandma Ruby will be 91 years old in January and is so full of life. I watched her enjoying every moment in time spent with her family that day. We had a wonderful dinner prepared by Aunt Barb and Jeff and during dinner Grandma Ruby surprised all of us. She had written a paper about her life and wanted her family to know everything about her. She read a three or four page story of her life and as she read the story I found myself thinking she is a remarkable person. At 91 years old she wanted her family to know the accomplishments she achieved in her life such as owning her own business in the 1960s called "Martha Lee Designs" in which she employed 30 employees making small doll clothes for the then famous "Barbie" dolls. She went on to received several degrees at San Jose State University before retiring. She and her husband after retirement enjoyed traveling every where including Europe and the far east. She was so proud to share this moment in time with her family and I was happy to be there.
After dinner Mark, Markie and Maxwell left for the Sharks game. Grandma Ruby loves ice hockey and especially the Sharks. She knows everything about the team and the players. Grandma Ruby spends lots of time on her computer looking at the team stats and standings. She emails Markie all the time about current Shark events and he enjoys talking to her about the team. Her favorite player is Johnathan Chechoo #14. Grandma Ruby loves her Sharks!
This was my first time at Grandma Ruby's house for Christmas. I was so lucky to be included in their family tradition of gift giving and enjoying each other's company. Uncle Bob took the role of Santa wearing a special Santa hat that I assumed he wore each year. Each gift was given out in a precise order and was opened by the receiver before the next one was given out. Uncle Bob made sure that the person had plenty of time to open and thank whoever gave the gift to them. It was not a rushed event! Unlike, my childhood memories of Christmas gift giving where the hour spent was so rushed no one could remember who gave what! This was different. We spent time talking and enjoying the moment with each other. I kept looking at Grandma Ruby and thinking how wonderful it was to have her there sharing this moment. I told Martie it was a special time for me and it took my breath away. I'm so happy I made the trip even though I wasn't feeling well. I slowly became tired and fell asleep as they finished opening their gifts. Jeff was so kind to take Erin and I back to the hotel and you guess it I feel fast asleep.
Sunday, I spent the whole day home just relaxing and really doing nothing at all. Today is Monday and Mark and I will leave for San Jose around 2:00PM. We are staying at a hotel and I have my routine heart biopsy on Tuesday at Kaiser Heart Transplant Center at seven in the morning. Its been a month since the last heart biopsy and I'm really nervous. Tippi feels the same. I know it will be fine but its the unknown and the wait for results that always makes me crazy. This is something I will have for the rest of my life. I will have heart biopsy every month for the first year and then I believe it drops to one every three months and then one every six months. This next one will included the congo red test for Amyloidosis in which they will take a few extra pieces of the heart to test for Amyloidosis. My last test was negative and I hope this one will be too!
Today before I leave Mom and I will go grocery shopping for Christmas dinner. Maxwell asked for my homemade lasagna on Christmas Eve with Italian sausage. I have enjoyed preparing all of his favorite meals. The other night it was great smelling hot brownies cooking in the oven. It brought back memories of waking up at midnight smelling brownies cooking in the oven. Maxwell would cook brownies and eat only the middle of the pan. I'd wake up the next morning to find a pan of brownies with the middle gone. I would give anything for those moments again!
I have a special posting this week I'm working on. It means so much to me and I want it to be right. It definitely takes my breath away and I'm sure it will you!
It's almost two in the morning and I better get some sleep. I will post results on Wednesday of heart biopsy and of course my special Christmas posting.
Enjoy those moments in time that take your breath away!!
love,
Debbie
Thursday, December 18, 2008
Me and Maxwell 
Nana and MaxwellMaxwell came home last night from Canada for Christmas. He has been gone since July and I have missed him so much. Maxwell plays ice hockey for a Junior A team in Innisfil, Canada. Mom is bragging but he is one of the youngest players on the team and this week made the top 10 list for GMHL league. Maxwell will be 18 in March and has been playing hockey since he was four years old. Markie would dress him in goalie gear and shoot pucks at him when he was four. Half the time Max wouldn't even have all the protective gear on - that's brothers! Maxwell will graduate next year and our hopes are that the scouts, who are looking at him now, will consider a college scholarship or semi-pro. Mark and I have sacrifice raising our son so he could pursue his dream of playing hockey in college, semi-pro or the ultimate NHL. We are very proud of our son! He has become a determined, honest, hard working young man.
Wednesday, December 17, 2008
BIGGER THINGS TO WORRY ABOUT
Well today didn't go the way I thought but there are bigger things to worry about. Maxwell missed his flight in Toronto, Canada this morning because someone did not get him to the airport on time. We learn a lesson and that will not happen again. So the poor kid has been flying all over Canada to get home tonight. I'm so disappointed because I want to see him so bad. He has not seen me since my heart transplant and I know he is worried. I also made him his favorite dinner ham and scalloped potatoes and corn. Markie is coming over at ten o'clock to see his little brother and have dinner after pick up hockey. Maxwell wanted to play hockey tonight with all the big boys with Markie. He lands in San Francisco at 8:00PM and my dear friends Debbie and Gary are picking him up at the airport, so I don't have to drive down there. They are coming back from Los Angeles and will wait to pick up Maxwell. I was afraid I would miss taking my drugs till late and not have dinner, so they offered. That's what I'm talking about - there are bigger things to worry about. I am so lucky to have friends - no they were never friends - I have known them since I was 17 years old. Mark was in their wedding and Gary was in ours. I have worked for them for the past eleven years - so they are family!!!!!
I talked with Tippi today and she is going in for lab work tonight before we have our biopsy on the 23rd. She is anxious just like me. It is so hard when the time comes for heart biopsy because you don't want to reject. Its been a month since last biopsy for me and her, so we are really anxious. I did my lab work last week and all labs were great, including my cyclosporine court (stayed the same at 200). I took Decadron today and will be up all night - wires me. I feel pretty good right now, just cold. I'm sure its really cold outside but the drugs give me chills. So I have the fireplace going and sit under my electric blanket to keep warm. I'm watching my San Jose Sharks play and they just lost.
Tomorrow I'm going to the nail salon for manicure and hair waxing. I hate the waxing and I really hate the increase of hair growth - EVERYWHERE! Mom is taking me to Sally Hansen's on Friday to see if they have a face cream to use instead of wax cause the wax is peeling my face skin. It hurts! I asked Tippi to ask the lady who had her heart transplant two years ago what she uses for the hair growth. Like I said, there are bigger things to worry about.
I watch one of the talk shows today. I haven't done that in years. I listen to something that really meant something. Today with the world economy as it is, we are all suffering one way or another. Maybe losing our job, home, life savings. The woman said she did not have enough money to spend to buy gifts and decided to write letters to everyone for Christmas. She used beautiful stationary and envelopes to express what the season meant to her. I think that is a wonderful thing to do. I never cared for Christmas and one reason is the expense, stress, buying unnecessary gifts and so on. What a wonderful idea to express how one feels for the person receiving the letter. I'm sure it relieves stress on the receiver also not to have to buy a gift and spend money they don't have. Just a suggestion.
Mark took me to Kohl's last night to buy small things for the boys and Erin. It was crowded and the lines were all the way down the aisles. Of course, I had my mask on and a kind old lady asked if I was contagious. I said no and that I had a heart transplant almost 3 months ago. You should have seen the heads of everyone turn to look at me. They all said they have never known anyone who had a heart transplant and I said me either. Now I know lots! They kindly asked about my beautiful donor, in which, I told them her name is Jazmin and she is 18 years old. I told them to pray for her family and give them strength during this holiday season. I look at Jazmin's pictures all day and I know she is with me. My friend Karen told me yesterday and that's all I will say because alot of you know Karen is a medium, my very dear friend. She helped me to understand a very important issue that happened after my twin boys died. I carried something inside of me for the last 26 years and she got the answer from them. You have to believe and I do! Thank you Karen.
Well I guess I'm just rambling on but like my friend Suzann at work said, its good to journal to get things out. She's right it feels great.
Have a wonderful evening. I'm counting the moments until Maxwell comes home.
love,
Debbie
Saturday, December 13, 2008
It's Saturday and where's the rain. The forecasters said we were going to get soaked with the big storm. It was such a beautiful day. The air was cool but the sun would pop out of the black clouds every so often. I didn't go out but watch the clouds roll by. The wind was strong and the leaves are everywhere. My Italian and Sicilian flags are blowing in the strong wind. It's that time of the year.
I put up a Christmas tree this week. Alot of you know that the Douglas Family always seems to find the biggest tree possible and gather all the neighbors to help bring it in. Not this year! This year is different. The heart transplant doctors felt a real tree inside would not be best for me. They felt the possibility of fungus or mold would not be good for the heart. So this year, my good friends Jane and Steve Bjork gave us one of their extra artificial trees. It is so cute. It is on a rotating stand and was so easy to decorate. I just stood there as it went around and decorated. Oh, and no outside lights this year either. Mark just felt this year we would take a break and enjoy the holiday without worrying about the lights going out. There's always next year! A lot of traditions kind of went sideways this year! I wasn't able to do my Gingerbread house or make cookies. There's always next year! This year will be different but I am blessed. I'm here!
Maxwell is coming home this Wednesday. We haven't seen him since July. I'm so excited to see him. Uncle Joey and I will pick him up at the airport. He's already asked for his favorite foods -lasagna and split pea soup. So I will be cooking lots while he is at home. We are going to Grandma Ruby's house for early Christmas dinner and the boys are going to the Shark game next Saturday. I'm so happy to spend time with Maxwell while he is at home. He can drive me around and I'll be able to get out a little. Markie's birthday is Wednesday and we will be celebrating his birthday on Friday. He wanted a little get together in the bar room for his birthday. It will be so great to have all my boys home together.
Mark went to the trailer today. We haven't been there since September. I hope it's still there! HAHA! The doctors will not let me go to the lake until Summer because of the trees, dirt, fungus and mold. Our trailer has a propane heater and doctors feel it's not healthy for me. So Mark and Scottie went up today and closed both trailers for the winter. We will be back before the Summer enjoying the lake, boating, visiting with our friends and just relaxing. I love my little trailer.
We are going to Scott and Carol Dolinsek's open house tonight. Scott and Carol were so kind while I was living at the hotel to feed Mark every Thursday night at their house. I haven't seen them since I've been home so I'm excited to see them tonight. I'm feeling just a little tired and weak today. I watched the movie Sisterhood of the Traveling Pants 2. What a cute movie! Find the meaning to the movie - it's amazing.
Tomorrow Mark is taking me to Costco. We need to stock up on meat. Then its Sunday football. Scott and Linda are staying for dinner and I'm making leg of lamb, roasted potatoes and carrots with Bearnaise sauce. YUM! Maybe the rain will come tomorrow. I'm looking forward to the rain. We need it.
My wish for all is to not stress during this holiday season. Think about what is important in your life. What do you value in your life. Spend time with family and friends making moments that take your breath away!
love,
Debbie
Tuesday, December 9, 2008
ONE WORD DESCRIBES THIS DAY - GRATEFUL
What does it feel like to be in a room with 30 heart transplant recipients ranging from transplant date of 1987 to October 31, 2008. One word - Grateful!!!
The word has such a strong meaning to me now. I am so grateful for the life I have been given to live and grateful to a beautiful family who gave me life.
What I saw today was people living their lives to the fullest. Each knows how close death was and realize how valuable life is. I can see it in the faces of each and every one of them. That is how I will live my life - to the fullest.
My dreams and goals for the future include more traveling. I want to go back to Sicily and knock on the family's door and speak italiano (parlare italiano). I want to sleep in a little village there and wake up the next morning and go to a small cafe and have caffe with the villagers. I want to see Washington DC, Yosemite, the liberty bell, The Lincoln Memorial, and Niagara Falls. I want to go to Toronto Canada to the Hockey Hall of Fame and then to Innisfil to see Maxwell play hockey. I want to see my first grandchild born and enjoy being a grandma.
When you are faced with a sudden illness, you begin to think about what is important. I now realize what is important - health, happiness and life. What is important in your life and what are you grateful for? Don't let a day go by wasted. Enjoy every moment in time!
Today was alot of fun! I saw Tippi, Kevin, John, Matt and Michael. All my heart transplant friends. We were treated to a catered lunch. Dr. Dana did the introductions and each of us were called one by one and presented with T-shirts from the heart transplant center. We took pictures with the heart transplant doctors and one big group picture. I was able to see Christine from Stanford, who took care of me after the heart transplant. This was the first time she had seen me since I left Stanford. It was a very happy meeting! I wish we could see our heart transplant surgeons again but what I'm told is that they are very busy. God bless them!
Dr. Dana also introduced us to two ladies from the Donor Procurement Center. I was able to talk to Lori after the meeting. She was overwhelmed by the contrast between her work with donor families and being with the heart transplant recipients. Donate Life was their message and they gave all of us wrist bands, key chains and book markers. They expressed that we are the ones who can pass the word to others about donation. Tell our stories and ask everyone to become a donor.
Every moment I spend with my heart transplant friends, the heart transplant doctors and nurses warms my new shared heart. They are miracle workers and God bless them.
Have a wonderful evening and enjoy every moment in time!
love,
debbie
Sunday, December 7, 2008
WHAT A BUSY WEEKEND
My busy weekend started on Thursday night. I had a wonderful dinner with Gary, Debbie and Kathy Conley at John Ash. It was so great to see Kathy. Chef Tom came out and said hi. He was so concerned that I eat good things for my heart. He made sure my steak and everything I ate had little or no salt. It was a very nice evening.
Friday was a very special day. I was able to attend the client appreciation lunch at Tommy Toys. This is a very special day for my clients and alot of them take the entire day off to enjoy the seven course meal. Tommy Toys is a very famous San Francisco restaurant. Alot of you don't know what kind of work I do. I work for a commercial collection agency. I don't collect on medical or dental bills but for commercial accounts like food, beverage, radio, TV etc. My clients are mostly commercial large accounts such as San Francisco Chronicle, Youngs Market, Sysco Foodservice, US Foodservice and many more. The luncheon on Friday is for our clients to say thank you for the business during the year and for a holiday celebration. The meal is seven courses of Chinese French. I couldn't have alot of the courses because I can't have shell fish anymore. So I changed the menu. It was so good. I had five courses. My clients could not believe I was there and I knew how important it was to be there. I'm glad I went. I came home and crashed. I slept until 7:30PM and then Mark woke me up because I had to start dinner and take all my medicines. I slept really good last night too!
Today as usual I got up at 5:00AM and read the newspaper with Mark. I started my spaghetti sauce. Cousin Maria called and said her and Mike were coming up to visit. We had so much fun. Mike watched football with Mark in the bar room with the guys and Maria and I watched - Guess what! Sex in the City. They stayed for dinner and then had to leave. The weather was really bad outside - the fog was terrible. I was tired and went to bed so early and now its 1:00AM and I'm wide awake. I have a lot of trouble sleeping and going to bed so early didn't help. I'll play with my new lap top and hopefully get tired and go to sleep. I think I'll do some of my Italian lessons to pass the time.
I have asked my donor family if it would be ok to post a blog about Jazmin including pictures of her and her family. I want my family and friends to meet my angel. I'm writing a draft because I feel it is so important to be sure it is thoughtful and considerate of my donor family's feelings. So I don't want to rush. I'm so happy to have them in my life and can't wait to meet them personally.
I read Kevin's blog and he started the second chemo drug Valcade. Kevin received his heart transplant on 8-15-08, just about 6 weeks ahead of me. Therefore, starting the second chemo drug will be ok. I will talk to him today to see how it is going. I know the drug is given by infusion at least twice weekly, so I'll find out how he feels and what other side effects there are. I can not believe the side effects these drugs including all the heart medicines have. I had my face waxed entirely on Saturday to remove all the hair growth. It would be nice if the hair grew on your head and not on your face. HAHA! Well this is a small price to pay to have this second chance at life.
Well I think I'll play with my Italian tapes for a while and hopefully start to get sleepy. This week, I'll be going to the heart center on Tuesday for the support group meeting. I'm excited to see my heart transplant friends, doctors and nurses. It will be a big day!
Make moments in time that take your breath away! Give to others during this holiday season. Make a special moment in someone else's life. I have so many special moments to be thankful for and pray to God each day for the gifts I have in my life.
love,
debbie
Thursday, December 4, 2008
WHAT'S BEEN GOING ON
Not much has been going on this week. Just trying to rest. On Sunday and Monday I felt some weird feelings in my legs and arms from the Decadron. Oh its on the list of side effects along with weight gain, mood swings, hair growth, soreness, swollen joints, headaches etc. I have them all! I spoke with Dr. Dana's nurse coordinator Sue yesterday and Dr. Dana has decided to wait until my next heart biopsy on December 23rd before starting the second chemo drug Valcade. I agree. I want my new shared heart to recover and that will be approximately 13 weeks out from transplant. Originally they said I would not start chemo for 3 months, so this will be perfect. I'm feeling great as for the heart. The side effects I'm feeling are from the drug Decadron (steroid). It is a terrible drug with so many side effects (as I listed above). I rode my stationary bike yesterday 45 minutes and did ball squats for 2 minutes. I'm hoping to increase the bike to 1 hour a day and the ball squats to 4 minutes. I felt great after exercising except I had a bad headache all day. Today it seems fine but I have been up since 3:30AM. The Decadron also wires you up - so not much sleep for the first few days after taking it.
Tonight I am having dinner with Gary, Debbie and Kathy Conley from Youngs Market. She is flying here from Los Angeles to visit me. We will have dinner at John Ash & Company. I called and asked Chef Tom to fix a special dinner for me (no salt) and also to be sitted away from the main dining room so I don't have to wear my mask all night through dinner. It will be the first time out for dinner. I will take pictures tonight and tomorrow at Tommy Toys in San Francisco. I am really looking forward to seeing all my clients tomorrow. It is a special day for them to acknowledge their continued business with Creditor's Trade Association and I do appreciate their business. Although it will be a long day, I am excited!
I also have something to share with everyone. My sister Kathy, as many of you have suggested I do, looked up on the Internet and found information about my donor and her family. I have known about them for weeks but felt out of respect and to be sure of the information I would wait until they contacted me. I did receive a call from the Donor Center who said someone from the family did call and received my letter but that they understandably are in deep mourning at this time but will contact me at a later time. I respect their wishes and it made me feel good to know they accepted my letter and know my feelings of gratitude. Since then Kathy has communicated with a friend of my donor. My donor's name is Jazmin. She is a beautiful 18 year. I have pictures of her and hope someday with the family's approval I would love to share her with all my friends and family. At this time, I want to respect their wishes and give them time to grieve. I promise I will honor Jazmin on this blog when the time is right. For now, please pray for my donor family and ask God to give them his blessings.
I don't have much going on except caring for myself and my new shared heart. I have a Heart Transplant Support Group Meeting in Santa Clara on December 9th. Gary, Debbie, Mom and I will be going. It is a BIG party celebrating everyone who has received a heart transplant and there will be about 250 people. They will present everyone by the number of days and years out from transplant to the group. So I will stand up when 11 weeks is called out. I will be able to see Kevin, Tippi, Phil, John, and all my other transplant friends who have helped me get through these last 4 months. It has been the most wonderful moments in time.
Have a wonderful day and enjoy each moment in time! I will post pictures this weekend of my party at Tommy Toys and dinner tonight at John Ash.
love,
debbie
Tonight I am having dinner with Gary, Debbie and Kathy Conley from Youngs Market. She is flying here from Los Angeles to visit me. We will have dinner at John Ash & Company. I called and asked Chef Tom to fix a special dinner for me (no salt) and also to be sitted away from the main dining room so I don't have to wear my mask all night through dinner. It will be the first time out for dinner. I will take pictures tonight and tomorrow at Tommy Toys in San Francisco. I am really looking forward to seeing all my clients tomorrow. It is a special day for them to acknowledge their continued business with Creditor's Trade Association and I do appreciate their business. Although it will be a long day, I am excited!
I also have something to share with everyone. My sister Kathy, as many of you have suggested I do, looked up on the Internet and found information about my donor and her family. I have known about them for weeks but felt out of respect and to be sure of the information I would wait until they contacted me. I did receive a call from the Donor Center who said someone from the family did call and received my letter but that they understandably are in deep mourning at this time but will contact me at a later time. I respect their wishes and it made me feel good to know they accepted my letter and know my feelings of gratitude. Since then Kathy has communicated with a friend of my donor. My donor's name is Jazmin. She is a beautiful 18 year. I have pictures of her and hope someday with the family's approval I would love to share her with all my friends and family. At this time, I want to respect their wishes and give them time to grieve. I promise I will honor Jazmin on this blog when the time is right. For now, please pray for my donor family and ask God to give them his blessings.
I don't have much going on except caring for myself and my new shared heart. I have a Heart Transplant Support Group Meeting in Santa Clara on December 9th. Gary, Debbie, Mom and I will be going. It is a BIG party celebrating everyone who has received a heart transplant and there will be about 250 people. They will present everyone by the number of days and years out from transplant to the group. So I will stand up when 11 weeks is called out. I will be able to see Kevin, Tippi, Phil, John, and all my other transplant friends who have helped me get through these last 4 months. It has been the most wonderful moments in time.
Have a wonderful day and enjoy each moment in time! I will post pictures this weekend of my party at Tommy Toys and dinner tonight at John Ash.
love,
debbie
Sunday, November 30, 2008
GIVING THANKS
I hope everyone had a wonderful Thanksgiving. I spent the day with my family and thought about all the things we are grateful for. My cousins, Mike & Donna Salvato, Sandy and Bob Kent and Angie called to wish me thanksgiving. They talked about how thankful they are this year for everything in their lives. I hope everyone feels the same. I sometimes wonder why I'm on this road and why my life took this course. I know I have given some thought to alot of people just what is important in their life. Is it money, cars, things or is it family, children, good friends? I can tell you nothing compares to the love and support of my family and friends. I would not have a positive attitude and the ability to fight this disease if it was not for the support of my family and friends. I am so grateful!
This week is going to be festive. On Thursday, Kathy Conley from Youngs Market Company is coming to visit. We are going out to dinner to John Ash & Company on Thursday night. My first dinner out in 3 months. Then on Friday I will go to San Francisco to Tommy Toys for our client appreciation lunch. I will wear my mask and see all my clients. I'm so excited! It will be a very long day but it will feel good to see everyone. On Saturday, is our company party but I will see how my body feels after the long day on Friday. It might be too much!
I don't have a biopsy until December 23rd. That will give my neck a rest! Wow does it need it! I'm feeling good but sometimes a little shaky which is normal for the Decadron drug I'm taking for the Amyloidosis. I plan to hear something this week regarding the chemo drug Valcade and when I will be starting that treatment. I'm hoping I will be able to do the infusion here in Santa Rosa instead of Stanford. I want to get going on the treatment for Amyloidosis but do not want anything to hurt my new shared heart. I continue to exercise on my bike which feels great! If anyone needs movie reviews just call. I think I have seen every movie out there at least 2 times. Markie has a big selection of movies and he brings me new ones every week. Matthew took me to Michael's the other day and I brought all kinds of cute stuff for my photo albums. I have been working on the Italy trip from 3 years ago, so hopefully I will be able to finish that album soon. I have been back to Italy twice since then and still have the other vacations to Spain and the Cari bean to do. Well can't say I don't have anything to do!
Have a wonderful week and enjoy each moment in time! I plan to enjoy the moments I have with my clients this week. I especially look forward to my time with Kathy. She has been such a support to me. Kathy is a cancer survivor and when I get scared she is always there. I'm grateful for her friendship.
Giving thanks this Thanksgiving means more to me than ever before. I am most thankful to my donor family and hope God gives them strength and courage. Please say an extra prayer for them.
Love,
debbie
I hope everyone had a wonderful Thanksgiving. I spent the day with my family and thought about all the things we are grateful for. My cousins, Mike & Donna Salvato, Sandy and Bob Kent and Angie called to wish me thanksgiving. They talked about how thankful they are this year for everything in their lives. I hope everyone feels the same. I sometimes wonder why I'm on this road and why my life took this course. I know I have given some thought to alot of people just what is important in their life. Is it money, cars, things or is it family, children, good friends? I can tell you nothing compares to the love and support of my family and friends. I would not have a positive attitude and the ability to fight this disease if it was not for the support of my family and friends. I am so grateful!
This week is going to be festive. On Thursday, Kathy Conley from Youngs Market Company is coming to visit. We are going out to dinner to John Ash & Company on Thursday night. My first dinner out in 3 months. Then on Friday I will go to San Francisco to Tommy Toys for our client appreciation lunch. I will wear my mask and see all my clients. I'm so excited! It will be a very long day but it will feel good to see everyone. On Saturday, is our company party but I will see how my body feels after the long day on Friday. It might be too much!
I don't have a biopsy until December 23rd. That will give my neck a rest! Wow does it need it! I'm feeling good but sometimes a little shaky which is normal for the Decadron drug I'm taking for the Amyloidosis. I plan to hear something this week regarding the chemo drug Valcade and when I will be starting that treatment. I'm hoping I will be able to do the infusion here in Santa Rosa instead of Stanford. I want to get going on the treatment for Amyloidosis but do not want anything to hurt my new shared heart. I continue to exercise on my bike which feels great! If anyone needs movie reviews just call. I think I have seen every movie out there at least 2 times. Markie has a big selection of movies and he brings me new ones every week. Matthew took me to Michael's the other day and I brought all kinds of cute stuff for my photo albums. I have been working on the Italy trip from 3 years ago, so hopefully I will be able to finish that album soon. I have been back to Italy twice since then and still have the other vacations to Spain and the Cari bean to do. Well can't say I don't have anything to do!
Have a wonderful week and enjoy each moment in time! I plan to enjoy the moments I have with my clients this week. I especially look forward to my time with Kathy. She has been such a support to me. Kathy is a cancer survivor and when I get scared she is always there. I'm grateful for her friendship.
Giving thanks this Thanksgiving means more to me than ever before. I am most thankful to my donor family and hope God gives them strength and courage. Please say an extra prayer for them.
Love,
debbie
Wednesday, November 26, 2008
A DAY TO BE THANKFUL
This Thanksgiving we have alot to be thankful for. I just received my call from the Heart Transplant Center letting me know the results of the biopsy. It was a 1R/1A which means slight rejection. No change in medicines and everything is ok. I feel wonderful except for the fourth day after taking Decadron and my body starts to ache and feel sore. If that's all I have to deal with I will take it. I have been riding my stationary bike 30 minutes each day and would like to start some ball squats. So my energy level on some days is high and others after I take the Decadron is low. I took the drug today so I expect to start feeling crummy on Saturday and Sunday.
I also met with Dr. Shrier at Stanford yesterday. My Lamba Light Chain for Amyloid was high at 206. That was a little disappointing but he felt confident that the second chemo drug Valcade will work to lower the count. This drug is administered by infusion and to be honest I didn't hear how many times a week because I want to do the treatment at Kaiser in Santa Rosa. I also do not want to do anything that will hurt my shared heart without the direction of the Heart Transplant Team at Kaiser. So when they called today I told them that Stanford wants me to start Valcade now. The coordinator said she would pass the message on to Dr. Dana and they (Stanford & Kaiser) will talk and let me know. I was thinking I would start in January but he thinks because the count is so high - why wait. I agree but only if it will not cause problems with my new shared heart. So I will wait for further instructions from Kaiser.
Tomorrow I will spend the day with my family - Mark, Matthew, Markie, Erin, my Mom and Sissy Mary and Britney. We have planned a wonderful dinner. Thanksgiving has always been my most favorite holiday. I don't really care much for Christmas. Too much about buying and not spending quality time with the ones we love. I feel this year that will change. Maxwell will be coming home (finally) on December 17th until the 26th. I'm so excited to see him and spend time with him. So for us Christmas will be different this year!!!
Take a moment today and ask yourself this question - What am I thankful for in my life today? For me it was that moment in time on September 26, 2008, sometime in the middle of the night, when my diseased heart was removed from my body and my new healthy shared heart starting beating inside me. That is what I am thankful for!! I am grateful to a beautiful family, somewhere out there, who gave me a second chance to live. My thoughts and prayers are with them each and everyday. I pray God gives them strength and hope someday I can tell them personally how grateful I am.
Have wonderful Thanksgiving!
love,
Debbie
I also met with Dr. Shrier at Stanford yesterday. My Lamba Light Chain for Amyloid was high at 206. That was a little disappointing but he felt confident that the second chemo drug Valcade will work to lower the count. This drug is administered by infusion and to be honest I didn't hear how many times a week because I want to do the treatment at Kaiser in Santa Rosa. I also do not want to do anything that will hurt my shared heart without the direction of the Heart Transplant Team at Kaiser. So when they called today I told them that Stanford wants me to start Valcade now. The coordinator said she would pass the message on to Dr. Dana and they (Stanford & Kaiser) will talk and let me know. I was thinking I would start in January but he thinks because the count is so high - why wait. I agree but only if it will not cause problems with my new shared heart. So I will wait for further instructions from Kaiser.
Tomorrow I will spend the day with my family - Mark, Matthew, Markie, Erin, my Mom and Sissy Mary and Britney. We have planned a wonderful dinner. Thanksgiving has always been my most favorite holiday. I don't really care much for Christmas. Too much about buying and not spending quality time with the ones we love. I feel this year that will change. Maxwell will be coming home (finally) on December 17th until the 26th. I'm so excited to see him and spend time with him. So for us Christmas will be different this year!!!
Take a moment today and ask yourself this question - What am I thankful for in my life today? For me it was that moment in time on September 26, 2008, sometime in the middle of the night, when my diseased heart was removed from my body and my new healthy shared heart starting beating inside me. That is what I am thankful for!! I am grateful to a beautiful family, somewhere out there, who gave me a second chance to live. My thoughts and prayers are with them each and everyday. I pray God gives them strength and hope someday I can tell them personally how grateful I am.
Have wonderful Thanksgiving!
love,
Debbie
Monday, November 24, 2008
BIG DAY TOMORROW
Mark and I leave tonight to spend the night in Santa Clara. I have to be at the Heart Transplant Center at 7:00AM in the morning for heart biopsy, lab, echo, chest x rays, clinic and two hour infusion. Then at 2:20PM we have an appointment at Stanford to meet with the specialist for Amyloidosis Dr. Shrier to discuss further treatment of the Amyloidosis. It is going to be a very busy day. I get so anxious the day before biopsy. The stress of waiting for lab results is awful. I wish there was a better way. I get to see Tippi (Tippi is one of my heart transplant friends who received a new heart on 8-28-08) tomorrow. We talk every day all day long. I love talking to her. She makes me feel so comfortable and we have a lot in common. I wish we lived closer. We could recover together. She is such a dear friend!
I will let everyone know results on Wednesday. Please pray for me and Tippi that we get an NER (no evidence of rejection) or 1R (slight rejection). Thank you for all your prayers and thoughts.
love,
debbie
Mark and I leave tonight to spend the night in Santa Clara. I have to be at the Heart Transplant Center at 7:00AM in the morning for heart biopsy, lab, echo, chest x rays, clinic and two hour infusion. Then at 2:20PM we have an appointment at Stanford to meet with the specialist for Amyloidosis Dr. Shrier to discuss further treatment of the Amyloidosis. It is going to be a very busy day. I get so anxious the day before biopsy. The stress of waiting for lab results is awful. I wish there was a better way. I get to see Tippi (Tippi is one of my heart transplant friends who received a new heart on 8-28-08) tomorrow. We talk every day all day long. I love talking to her. She makes me feel so comfortable and we have a lot in common. I wish we lived closer. We could recover together. She is such a dear friend!
I will let everyone know results on Wednesday. Please pray for me and Tippi that we get an NER (no evidence of rejection) or 1R (slight rejection). Thank you for all your prayers and thoughts.
love,
debbie
Saturday, November 22, 2008
HAPPY BIRTHDAY TO ME!!!
Today is my 51st birthday! Wow six months ago I didn't think I would be celebrating and feeling so good. I'm back exercising and riding the stationary bike 30 minutes a day, which feels great. I hope to begin some lower body weight training soon, if the doctors say its ok. The drug Decadron kind of kick me in the butt today, just feeling a little sore and swollen under the neck but nothing that will keep me down. Scott and Linda Ford are coming tonight to cook me dinner and celebrate my birthday. Scott's birthday is Monday, so we will share a birthday cake tonight. I plan to rest and relax today and enjoy my evening. The Sharks play at 7:30PM, so I will watch the game. Mark and Erin went to Grandma Ruby's to celebrate Thanksgiving with Erin's family and they will be with us on Thanksgiving Day. Matt is coming up from Los Angeles. He sent me the most beautiful flower arrangement and a beautiful card. It made me cry the things he said. We have a lot to be thankful for this year!
This Thanksgiving a special prayer will be sent to my donor family for the blessings they have given me. My thoughts are with them each day. I am so grateful!
love,
debbie
Today is my 51st birthday! Wow six months ago I didn't think I would be celebrating and feeling so good. I'm back exercising and riding the stationary bike 30 minutes a day, which feels great. I hope to begin some lower body weight training soon, if the doctors say its ok. The drug Decadron kind of kick me in the butt today, just feeling a little sore and swollen under the neck but nothing that will keep me down. Scott and Linda Ford are coming tonight to cook me dinner and celebrate my birthday. Scott's birthday is Monday, so we will share a birthday cake tonight. I plan to rest and relax today and enjoy my evening. The Sharks play at 7:30PM, so I will watch the game. Mark and Erin went to Grandma Ruby's to celebrate Thanksgiving with Erin's family and they will be with us on Thanksgiving Day. Matt is coming up from Los Angeles. He sent me the most beautiful flower arrangement and a beautiful card. It made me cry the things he said. We have a lot to be thankful for this year!
This Thanksgiving a special prayer will be sent to my donor family for the blessings they have given me. My thoughts are with them each day. I am so grateful!
love,
debbie
Friday, November 21, 2008
Wednesday, November 19, 2008
STORY TELLING
i was thinking about Italy, actually Sicily today, and my conversation last weekend with
Kathy Dolinsek.
Kathy and her mom just spent 12 days in Sicily. She and her mom did not do the typical tourist thing, they immerse in the culture. Spent time with the people in the little cafes in the villages all through Sicily. It was interesting to hear her talk about the country and how it has not become commericalized like Roma and Florence. They enjoyed their time together and I'm sure there were many, many moments in time that took their breaths away.
That happen to me 3 years old when I had the opportunity to visit Sicily and a little fishing village called Santa Elia where my dad's mom was raised. But before I talk about my trip, how did this come to past?
It started in 1913, when my great grandfather and his brothers were fishing on the San Francisco bay (this is what movies are made of). As they were fishing, a fish and game warden, came aboard their boat and accused them of using illegal nets to fish with. A fight broke out and one brother was killed, the other was shot in the hand and my great grandfather struck the fish and game warden with an oar and knocked him into the bay. He died. My great grandfather fled back to Sicily. The one brother served time in San Quentein. And the story goes!
My great grandfather came back to Sicily and married a 15 year old girl and had six children with her. My grandmother and her sister were old enough to be left with family in the United States and he began a new life in Sicily (my greatgrandmother died in the 1906 earthquake). Yes, from time to time he would sneak back to the US (the interrupter we hired thought maybe there was some Mafia stuff going on, HAHA) and attend one daughter's wedding and avoid being arrested.
Several years ago, some of my consins decided to research Nana Salvato's family and could not figure out what happen to her dad. Well, as the story goes, they found a whole family living in Santa Elia, Sicily. Consin Mike Salvato and Donna visited first and three years ago, Debbie, Gary, Mark and I went to Sicily. I was able to meet three of the six children. I was in the house my grandmother was born in. The feeling is unspeakable. Let me tell you how many moments that took my breath away that day. I cried, they cried, we all cried. Family - Una Familgia. On my slide show are the pictures of the family. Please see them. I promised the granddaughter that when I came back to Sicily I would "parlare italiano" (speak Italian). That is my goal!
Although I have to tell you at 51 years old learning a second language is tuff, but my passion is to speak. I hope to visit in 2 years and speak fluently to my family. This was a moment in time that I will never forget!
A special thanks to Kathy also. While staying in Sicily she purchased a charm, which I am wearing ever since. The charm is the "3 legged women" Sicily's mascot on the flag. It represent the three regions of Sicily. It is called the "trinacria". The special part of all of this is that Kathy waiting 2 hours at the Vatican in Roma for the Pope to bless my charm. I will always cherish it. Another moment that took my breath away when she told me. As I watched her eyes and mine fill up with tears, I realized how that moment took her breath away too!
In closing, I have lots of time to think about things and one thing I want each of you to ask yourself "what do you value in your life"? I'm realizing what matters to me. It's how many moments I can have that take my breath away! It's dreaming about going back to Sicily, going to Paris, to Washington D.C., seeing my first grandchild be born, spending time watching the Shark game with my son Mark each week since I have been home, and many, many more things. Don't want to be sentimental but when an illness strikes so suddenly, we are lucky to have these moments to reflect. I'm grateful I have this moment. God bless my donor and her family for giving me this moment in time.
Love,
debbie
i was thinking about Italy, actually Sicily today, and my conversation last weekend with
Kathy Dolinsek.
Kathy and her mom just spent 12 days in Sicily. She and her mom did not do the typical tourist thing, they immerse in the culture. Spent time with the people in the little cafes in the villages all through Sicily. It was interesting to hear her talk about the country and how it has not become commericalized like Roma and Florence. They enjoyed their time together and I'm sure there were many, many moments in time that took their breaths away.
That happen to me 3 years old when I had the opportunity to visit Sicily and a little fishing village called Santa Elia where my dad's mom was raised. But before I talk about my trip, how did this come to past?
It started in 1913, when my great grandfather and his brothers were fishing on the San Francisco bay (this is what movies are made of). As they were fishing, a fish and game warden, came aboard their boat and accused them of using illegal nets to fish with. A fight broke out and one brother was killed, the other was shot in the hand and my great grandfather struck the fish and game warden with an oar and knocked him into the bay. He died. My great grandfather fled back to Sicily. The one brother served time in San Quentein. And the story goes!
My great grandfather came back to Sicily and married a 15 year old girl and had six children with her. My grandmother and her sister were old enough to be left with family in the United States and he began a new life in Sicily (my greatgrandmother died in the 1906 earthquake). Yes, from time to time he would sneak back to the US (the interrupter we hired thought maybe there was some Mafia stuff going on, HAHA) and attend one daughter's wedding and avoid being arrested.
Several years ago, some of my consins decided to research Nana Salvato's family and could not figure out what happen to her dad. Well, as the story goes, they found a whole family living in Santa Elia, Sicily. Consin Mike Salvato and Donna visited first and three years ago, Debbie, Gary, Mark and I went to Sicily. I was able to meet three of the six children. I was in the house my grandmother was born in. The feeling is unspeakable. Let me tell you how many moments that took my breath away that day. I cried, they cried, we all cried. Family - Una Familgia. On my slide show are the pictures of the family. Please see them. I promised the granddaughter that when I came back to Sicily I would "parlare italiano" (speak Italian). That is my goal!
Although I have to tell you at 51 years old learning a second language is tuff, but my passion is to speak. I hope to visit in 2 years and speak fluently to my family. This was a moment in time that I will never forget!
A special thanks to Kathy also. While staying in Sicily she purchased a charm, which I am wearing ever since. The charm is the "3 legged women" Sicily's mascot on the flag. It represent the three regions of Sicily. It is called the "trinacria". The special part of all of this is that Kathy waiting 2 hours at the Vatican in Roma for the Pope to bless my charm. I will always cherish it. Another moment that took my breath away when she told me. As I watched her eyes and mine fill up with tears, I realized how that moment took her breath away too!
In closing, I have lots of time to think about things and one thing I want each of you to ask yourself "what do you value in your life"? I'm realizing what matters to me. It's how many moments I can have that take my breath away! It's dreaming about going back to Sicily, going to Paris, to Washington D.C., seeing my first grandchild be born, spending time watching the Shark game with my son Mark each week since I have been home, and many, many more things. Don't want to be sentimental but when an illness strikes so suddenly, we are lucky to have these moments to reflect. I'm grateful I have this moment. God bless my donor and her family for giving me this moment in time.
Love,
debbie
Monday, November 17, 2008
Another Beautiful Day
Today is Monday and what a beautiful day! I want to say "Happy Birthday" to my little sister Kathie who turned ???? yesterday (won't give her age, HA HA). I hope you and Ed had a wonderful time at Bodega Bay. The weather must have been perfect!
Today Mom and I went to Kohl's and I brought some shirts. I can't lift my arms over my head so I need shirts that button up in the front or are lose to get over my head. Of course, I found lots!!
I have been using my slow cooker alot lately and found this chili recipe. It smells so good and was so easy to make. I need things that are easy and quick.
Mark brought home the exercise bike and it is terrific. The doctors want me to do at least 30 minutes of exercise each day. It has been hard finding someone to take me for a walk, although Gary and Debbie Looney have been taking me on walks and to the gym. I thought once the weather changes I will be able to do my exercising here at home. So starting tomorrow I plan to ride the bike at least 20 minutes working up to 30 minutes a day or more. Any type of exercise will help with my recovery. I was in such good shape before the transplant and I really think that has helped in how fast I have recovered. I strongly urge everyone to exercise each day, eat well and reduce stress. Remember to enjoy the moments that take your breath away!
This week will be a week to rest and relax. I have heart biopsy next Tuesday along with the normal labs, clinic and infusion. So this week, I will just rest up. This week the chemo drug Decadron didn't effect me too bad! Just a little soreness in the upper body, but it is bearable. I cleaned and organized the craft room so I can start doing my photo albums from my Italy vacations. I have not had the time to finish them. It's so fun looking back at all the pictures and remembering the wonderful time I had. I can't wait to go back!
This weekend I turn 51. I can't believe how my life has changed since last year when I had my beautiful birthday party. My illness hit so fast! But look at where I am today! I have a second chance to live a healthy happy life. I plan to spend every moment enjoying the time I have! I pray for my donor and her family and hope someday I will be able to tell them personally how much I am grateful to them. I cherish my shared heart and will always honor my donor and her family for the decision they made that night to save my life. I hope to have many, many more birthdays and hopefully soon, as most of you know, "I want to be a grandmother". Hint: Markie and Erin. HA HA! I will be in trouble for that one!
Have a wonderful evening! Hopefully my chili is good! Remember to enjoy each moment in time because we just don't know how many more moments we have!
love,
debbie
Today is Monday and what a beautiful day! I want to say "Happy Birthday" to my little sister Kathie who turned ???? yesterday (won't give her age, HA HA). I hope you and Ed had a wonderful time at Bodega Bay. The weather must have been perfect!
Today Mom and I went to Kohl's and I brought some shirts. I can't lift my arms over my head so I need shirts that button up in the front or are lose to get over my head. Of course, I found lots!!
I have been using my slow cooker alot lately and found this chili recipe. It smells so good and was so easy to make. I need things that are easy and quick.
Mark brought home the exercise bike and it is terrific. The doctors want me to do at least 30 minutes of exercise each day. It has been hard finding someone to take me for a walk, although Gary and Debbie Looney have been taking me on walks and to the gym. I thought once the weather changes I will be able to do my exercising here at home. So starting tomorrow I plan to ride the bike at least 20 minutes working up to 30 minutes a day or more. Any type of exercise will help with my recovery. I was in such good shape before the transplant and I really think that has helped in how fast I have recovered. I strongly urge everyone to exercise each day, eat well and reduce stress. Remember to enjoy the moments that take your breath away!
This week will be a week to rest and relax. I have heart biopsy next Tuesday along with the normal labs, clinic and infusion. So this week, I will just rest up. This week the chemo drug Decadron didn't effect me too bad! Just a little soreness in the upper body, but it is bearable. I cleaned and organized the craft room so I can start doing my photo albums from my Italy vacations. I have not had the time to finish them. It's so fun looking back at all the pictures and remembering the wonderful time I had. I can't wait to go back!
This weekend I turn 51. I can't believe how my life has changed since last year when I had my beautiful birthday party. My illness hit so fast! But look at where I am today! I have a second chance to live a healthy happy life. I plan to spend every moment enjoying the time I have! I pray for my donor and her family and hope someday I will be able to tell them personally how much I am grateful to them. I cherish my shared heart and will always honor my donor and her family for the decision they made that night to save my life. I hope to have many, many more birthdays and hopefully soon, as most of you know, "I want to be a grandmother". Hint: Markie and Erin. HA HA! I will be in trouble for that one!
Have a wonderful evening! Hopefully my chili is good! Remember to enjoy each moment in time because we just don't know how many more moments we have!
love,
debbie
Friday, November 14, 2008
It's a Beautiful Day!
It's Friday and Mom is coming to get me to take me out for awhile. I'm going to the office to visit everyone. I haven't seen anyone for over 2 months and I'm excited to see them. I'm getting bored sitting in the house watching movies, reading books and playing on the computer. As alot of you know, that's not Debbie. I need to be doing things but I know I can't right now. So I sit here thinking of things to do later or who I could find to do them for me now (like Sissy Mary). HA HA Sissy! I'm full of gratitude that I'm here today being bored and not sitting in the hospital waiting. I am blessed each day I wake up and feel so much happiness that I have been given another chance at life.
Tomorrow Mom will take me grocery shopping for the week and I plan to make a big pot of my homemade spaghetti sauce on Sunday. YUM! Scott and Linda are coming over and cooking dinner on Saturday. I love spending time with Linda she keeps me positive and always eases my mind. I think I might get Scott to do one more "honey do" and that is to put up a new shower head in our master bathroom. I hate the one we have.
This weekend will be a relaxing and restful weekend, no big plans. I can't go anywhere anyway but looks like the weather will be beautiful! Doesn't matter what I do, I will enjoy each and every moment in time and I hope you will too!
love,
debbie
It's Friday and Mom is coming to get me to take me out for awhile. I'm going to the office to visit everyone. I haven't seen anyone for over 2 months and I'm excited to see them. I'm getting bored sitting in the house watching movies, reading books and playing on the computer. As alot of you know, that's not Debbie. I need to be doing things but I know I can't right now. So I sit here thinking of things to do later or who I could find to do them for me now (like Sissy Mary). HA HA Sissy! I'm full of gratitude that I'm here today being bored and not sitting in the hospital waiting. I am blessed each day I wake up and feel so much happiness that I have been given another chance at life.
Tomorrow Mom will take me grocery shopping for the week and I plan to make a big pot of my homemade spaghetti sauce on Sunday. YUM! Scott and Linda are coming over and cooking dinner on Saturday. I love spending time with Linda she keeps me positive and always eases my mind. I think I might get Scott to do one more "honey do" and that is to put up a new shower head in our master bathroom. I hate the one we have.
This weekend will be a relaxing and restful weekend, no big plans. I can't go anywhere anyway but looks like the weather will be beautiful! Doesn't matter what I do, I will enjoy each and every moment in time and I hope you will too!
love,
debbie
Wednesday, November 12, 2008
GOOD NEWS!!!
Sue called from the Heart Transplant Center with my heart biopsy results. I have a 1R rejection which is slight rejection. I want NER (no evidence of rejection) but I realize my count was low so I knew it might be a 1R. That's ok. Just a change of drugs. So starting tonight I have to take 125mg gengraf in the morning and increase to 150mg at night. My count has to be between 200 and 250 and yesterday it was at 197. So this should do it. I go again on November 25th for heart biopsy, labs and everything else. All my lab work she said was perfect. I'm feeling great and so happy my beautiful shared heart is so strong and that I'm taking care of myself and my new heart. I always want to be sure that I say each and every time how grateful I am to my donor and her family. God bless them each day. I pray each day for them that God will help them through these days and give them strength. They will always be in my thoughts and prayers. I want all my friends and family to say prayers for them too!
I spent the afternoon resting. I watched the movie P. S., I Love You that Sissy Mary brought for me. What a great movie! Love story with some very cute Irish men. Those Irish men are pretty close to the Italian men in Italy, WOW!
I took my second dose of Decadron today, so tonight I probably will be up all night wired. Last Wednesday night I never went to sleep until 4:00AM. That was fun! The drug started showing side effects on Saturday night and all day Sunday, so we shall see what happens this week.
Tomorrow is Thursday and Mark and Markie are going to the Sharks game in San Jose. Wish I could go see my Sharks play, but that is going to be a long time before I'm able to go out like that again. Mom is coming over to cook me dinner. She made salmon one night at the hotel and it was so good. So she will spend the evening with me cooking salmon for dinner. I gained so much weight, some of it was the drugs and some was her great cooking. I needed to gain weight since I have lost so much muscle tone. All that working out I have done for the past 6 years is gone, but Tim Rogers said it will come back when I'm able to start super slow again. No big deal I have a second chance of life and I'm not taking it for granted.
I plan to take some current pictures this weekend of me and some friends. I realize my profile picture is awful. That was 2 weeks after transplant and I look terrible. I have puffy checks now which looks like I have no wrinkles (which I don't for almost 51 years old) HA HA, from the steroids.
Sissy Mary came over tonight and cleaned out my linen closet and Mark's closet. I have been wanting to do that for months. I can't do anything upper body so I sat there and told her what to throw away. Everything looks great! She is going to do my china closet next and Maxwell's closet after that. Maxwell left for Canada and a closet full of his junk. He doesn't know it yet but I repainted his room and brought all new bedding and it is beautiful!! He will be home in December, won't he be surprised!
Have a wonderful evening! I'm enjoying this moment in time! I received good news about my heart biopsy and that was a wonderful moment!
love,
debbie
Sue called from the Heart Transplant Center with my heart biopsy results. I have a 1R rejection which is slight rejection. I want NER (no evidence of rejection) but I realize my count was low so I knew it might be a 1R. That's ok. Just a change of drugs. So starting tonight I have to take 125mg gengraf in the morning and increase to 150mg at night. My count has to be between 200 and 250 and yesterday it was at 197. So this should do it. I go again on November 25th for heart biopsy, labs and everything else. All my lab work she said was perfect. I'm feeling great and so happy my beautiful shared heart is so strong and that I'm taking care of myself and my new heart. I always want to be sure that I say each and every time how grateful I am to my donor and her family. God bless them each day. I pray each day for them that God will help them through these days and give them strength. They will always be in my thoughts and prayers. I want all my friends and family to say prayers for them too!
I spent the afternoon resting. I watched the movie P. S., I Love You that Sissy Mary brought for me. What a great movie! Love story with some very cute Irish men. Those Irish men are pretty close to the Italian men in Italy, WOW!
I took my second dose of Decadron today, so tonight I probably will be up all night wired. Last Wednesday night I never went to sleep until 4:00AM. That was fun! The drug started showing side effects on Saturday night and all day Sunday, so we shall see what happens this week.
Tomorrow is Thursday and Mark and Markie are going to the Sharks game in San Jose. Wish I could go see my Sharks play, but that is going to be a long time before I'm able to go out like that again. Mom is coming over to cook me dinner. She made salmon one night at the hotel and it was so good. So she will spend the evening with me cooking salmon for dinner. I gained so much weight, some of it was the drugs and some was her great cooking. I needed to gain weight since I have lost so much muscle tone. All that working out I have done for the past 6 years is gone, but Tim Rogers said it will come back when I'm able to start super slow again. No big deal I have a second chance of life and I'm not taking it for granted.
I plan to take some current pictures this weekend of me and some friends. I realize my profile picture is awful. That was 2 weeks after transplant and I look terrible. I have puffy checks now which looks like I have no wrinkles (which I don't for almost 51 years old) HA HA, from the steroids.
Sissy Mary came over tonight and cleaned out my linen closet and Mark's closet. I have been wanting to do that for months. I can't do anything upper body so I sat there and told her what to throw away. Everything looks great! She is going to do my china closet next and Maxwell's closet after that. Maxwell left for Canada and a closet full of his junk. He doesn't know it yet but I repainted his room and brought all new bedding and it is beautiful!! He will be home in December, won't he be surprised!
Have a wonderful evening! I'm enjoying this moment in time! I received good news about my heart biopsy and that was a wonderful moment!
love,
debbie
Tuesday, November 11, 2008
Good Day Today
Just got home! I am so tired. Spent all day at the heart transplant center doing heart biopsy, chest x rays, lab, clinic and two hour infusion. Another long day but the heart biopsy this time went quick. A new doctor they call "JoJo" a fellow from Stanford did mine. He was great. In and out so fast. I get so anxious when its time for the heart biopsy. Now I sit and wait for results. I've already checked on line for other lab results and everything so far looks great! My cyclosporine count is not on line yet and that's the one I really want to see. It will tell me whether the level is too low and I might have a rejection. I'll report that as soon as its available.
I don't have another biopsy until November 25th, so I get another two week break. My neck gets a rest too! I also have an appointment at Stanford that day regarding my chemo treatment for Amyloidosis which I think will begin with the second drug at the first of the year. Tomorrow I take Decadron again. The doctor said the soreness and swelling I had over the weekend was from the chemo drug Decadron. So I will see what side effects I have this week. Doctors are very pleased with my recovery and everything so far is perfect.
Tomorrow is a rest day and I plan to watch the movie "P. S., I Love You". I started watching it yesterday, but had to leave to go to Santa Clara. So tomorrow I will watch the movie from start to finish. A really cute movie! I'm getting bored watching movies all day, so Friday Debbie Looney is taking me to Break Through Fitness to ride the stationary bike and maybe do some wall squats. I'm excited to be able to do some exercise. I haven't been able to walk because there is no one here who can walk with me. It's not very safe on the road I live on to walk by yourself.
Time to say goodnight. My San Jose Sharks are playing and my favorite TV show "Dancing with the Stars" is on. So I will be flipping the channels to watch both.
Enjoy your evening and this moment in time!
love,
debbie
Just got home! I am so tired. Spent all day at the heart transplant center doing heart biopsy, chest x rays, lab, clinic and two hour infusion. Another long day but the heart biopsy this time went quick. A new doctor they call "JoJo" a fellow from Stanford did mine. He was great. In and out so fast. I get so anxious when its time for the heart biopsy. Now I sit and wait for results. I've already checked on line for other lab results and everything so far looks great! My cyclosporine count is not on line yet and that's the one I really want to see. It will tell me whether the level is too low and I might have a rejection. I'll report that as soon as its available.
I don't have another biopsy until November 25th, so I get another two week break. My neck gets a rest too! I also have an appointment at Stanford that day regarding my chemo treatment for Amyloidosis which I think will begin with the second drug at the first of the year. Tomorrow I take Decadron again. The doctor said the soreness and swelling I had over the weekend was from the chemo drug Decadron. So I will see what side effects I have this week. Doctors are very pleased with my recovery and everything so far is perfect.
Tomorrow is a rest day and I plan to watch the movie "P. S., I Love You". I started watching it yesterday, but had to leave to go to Santa Clara. So tomorrow I will watch the movie from start to finish. A really cute movie! I'm getting bored watching movies all day, so Friday Debbie Looney is taking me to Break Through Fitness to ride the stationary bike and maybe do some wall squats. I'm excited to be able to do some exercise. I haven't been able to walk because there is no one here who can walk with me. It's not very safe on the road I live on to walk by yourself.
Time to say goodnight. My San Jose Sharks are playing and my favorite TV show "Dancing with the Stars" is on. So I will be flipping the channels to watch both.
Enjoy your evening and this moment in time!
love,
debbie
Monday, November 10, 2008
Words of Encouragement
I received a comment this morning from Jan in Indianapolis (see comments). Thank you so much Jan for the words of encouragement. I want to be able to talk more with you about the disease and especially the treatments (stem cell transplant and chemos). You can reach me at my email address which is mythreesons02@aol.com. I have so many questions regarding the disease and you are the first person I have heard of who is in remission. Please contact me when its convenient. Thank you.
I received a comment this morning from Jan in Indianapolis (see comments). Thank you so much Jan for the words of encouragement. I want to be able to talk more with you about the disease and especially the treatments (stem cell transplant and chemos). You can reach me at my email address which is mythreesons02@aol.com. I have so many questions regarding the disease and you are the first person I have heard of who is in remission. Please contact me when its convenient. Thank you.
Sunday, November 9, 2008
AMYLOIDOSIS
I wish I never heard this word!! As most of you know, this is the disease I have that caused the damage to my old heart. Yesterday, Markie, Erin and I went to a support group meeting in Walnut Creek for Amyloidosis patients. I have to say it was nothing like my support group for heart transplant patients.
The mood was very grime and hard core. The members do not hold anything back and are very clear about their disease, treatment and life expectancy. Up until now I have chosen to stay in a denial state about my disease because managing the recovery of my heart transplant has been overwhelming. Knowing which drugs to take, the side effects and getting plenty of rest has been a full time job. Now I'm faced with dealing with the disease that has caused all of this.
I have started the chemo drug Decadron last Wednesday and today I'm feeling the side effects from it. It started last night with swelling around the neck and some soreness on the shoulders and back. Dr. Kevin said it usually happens on the third day but mine chose the fourth day, I guess. I hope this is from the chemo drug and not anything with the heart. I have no pain with the heart just this soreness in those areas. I did have a busy two days going shopping on Friday and the support group meeting yesterday. So today and Monday I need to get plenty of rest before heart biopsy on Tuesday.
Dr. Kevin was at the meeting yesterday and said that Kaiser, Stanford and the Mayo Clinic have all confirmed a treatment plan for us. I guess we will know on Tuesday at clinic what the treatment plan will be and when it will start. Dr. Kevin has made the choice to follow the chemo plan for 3 months and will undergo a stem cell transplant next year. I am very scared of the stem cell transplant. To me that is scary! It involves 2-4 weeks in the hospital, hotel stay (again) after transplant and still there is no guarantee that it will put the disease in remission. Most of the patients yesterday had stem cell transplants and are not in remission. They are still on very high doses of chemo fighting this horrible disease. I know I have to fight and its hard keeping up the positive attitude when everything looks so bad. But I have made a promise to my donor, her family and of course to my family and friends that I will fight this. I will! So sometime in the near future I will have the stem cell transplant if the chemo drugs do not work. On November 25th I have an appointment at Stanford to discuss my complete workup of how much Amyloid is in my body and what my prognosis is. Until then, I have to continue recovery and managing my beautiful new heart. I could not have a stem cell transplant without a new heart. My old heart would not have made it. This is alot to think about and I need to come out of my denial and face the facts. I have a fatal rare disease that needs to be treated now!
One thing that came out of the meeting yesterday from each and every patient. I have tried to stress this in my blog every time I sign on. That is to enjoy every moment! We don't know how many moments we have left and each is special. Please take this to heart and enjoy life and the moments we are given. Don't measure the number of breaths we have but the moments that take our breaths away. I want lots more moments where it takes my breath away. Like the first time I saw my beautiful children being born, going to Italy, watching Mark and Erin get married. These are the moments that take our breath away and I plan to have many more!
Enjoy this beautiful Sunday and especially enjoy each and every moment it brings!
love,
debbie
I wish I never heard this word!! As most of you know, this is the disease I have that caused the damage to my old heart. Yesterday, Markie, Erin and I went to a support group meeting in Walnut Creek for Amyloidosis patients. I have to say it was nothing like my support group for heart transplant patients.
The mood was very grime and hard core. The members do not hold anything back and are very clear about their disease, treatment and life expectancy. Up until now I have chosen to stay in a denial state about my disease because managing the recovery of my heart transplant has been overwhelming. Knowing which drugs to take, the side effects and getting plenty of rest has been a full time job. Now I'm faced with dealing with the disease that has caused all of this.
I have started the chemo drug Decadron last Wednesday and today I'm feeling the side effects from it. It started last night with swelling around the neck and some soreness on the shoulders and back. Dr. Kevin said it usually happens on the third day but mine chose the fourth day, I guess. I hope this is from the chemo drug and not anything with the heart. I have no pain with the heart just this soreness in those areas. I did have a busy two days going shopping on Friday and the support group meeting yesterday. So today and Monday I need to get plenty of rest before heart biopsy on Tuesday.
Dr. Kevin was at the meeting yesterday and said that Kaiser, Stanford and the Mayo Clinic have all confirmed a treatment plan for us. I guess we will know on Tuesday at clinic what the treatment plan will be and when it will start. Dr. Kevin has made the choice to follow the chemo plan for 3 months and will undergo a stem cell transplant next year. I am very scared of the stem cell transplant. To me that is scary! It involves 2-4 weeks in the hospital, hotel stay (again) after transplant and still there is no guarantee that it will put the disease in remission. Most of the patients yesterday had stem cell transplants and are not in remission. They are still on very high doses of chemo fighting this horrible disease. I know I have to fight and its hard keeping up the positive attitude when everything looks so bad. But I have made a promise to my donor, her family and of course to my family and friends that I will fight this. I will! So sometime in the near future I will have the stem cell transplant if the chemo drugs do not work. On November 25th I have an appointment at Stanford to discuss my complete workup of how much Amyloid is in my body and what my prognosis is. Until then, I have to continue recovery and managing my beautiful new heart. I could not have a stem cell transplant without a new heart. My old heart would not have made it. This is alot to think about and I need to come out of my denial and face the facts. I have a fatal rare disease that needs to be treated now!
One thing that came out of the meeting yesterday from each and every patient. I have tried to stress this in my blog every time I sign on. That is to enjoy every moment! We don't know how many moments we have left and each is special. Please take this to heart and enjoy life and the moments we are given. Don't measure the number of breaths we have but the moments that take our breaths away. I want lots more moments where it takes my breath away. Like the first time I saw my beautiful children being born, going to Italy, watching Mark and Erin get married. These are the moments that take our breath away and I plan to have many more!
Enjoy this beautiful Sunday and especially enjoy each and every moment it brings!
love,
debbie
Friday, November 7, 2008
DONOR INFORMATION
Dear Friends and Family, I have included in my blog site information from the DMV to register as an organ donor. Also, a poem from Robert Test that tells it all. I hope you will click on the sites and read the information and poem below under Dr. Kevin's blog site.
I can't tell you how important it is to become a donor. Please take the time to make an informed decision to become a donor.
My donor family made the ultimate decision to donate their beautiful child's organs which saved many lives that day. They gave me a second chance at life and I am so grateful for their decision. I will alway honor and cherish the shared heart I have beating inside me. My donor lived 18 years with this beautiful heart and I will live the rest of mine with her heart beating inside me. I will never take this for granted.
Please tell everyone you know to become a donor. Become a HERO and donate!
love,
debbie
Dear Friends and Family, I have included in my blog site information from the DMV to register as an organ donor. Also, a poem from Robert Test that tells it all. I hope you will click on the sites and read the information and poem below under Dr. Kevin's blog site.
I can't tell you how important it is to become a donor. Please take the time to make an informed decision to become a donor.
My donor family made the ultimate decision to donate their beautiful child's organs which saved many lives that day. They gave me a second chance at life and I am so grateful for their decision. I will alway honor and cherish the shared heart I have beating inside me. My donor lived 18 years with this beautiful heart and I will live the rest of mine with her heart beating inside me. I will never take this for granted.
Please tell everyone you know to become a donor. Become a HERO and donate!
love,
debbie
Thursday, November 6, 2008
LAB RESULTS
Just spoke with Sue, Nurse at Santa Clara Heart Transplant Center. My cyclosoporine count was 237, which is within the range of 200 to 250. They did not change any medicines at this time. Will look after next week's biopsy. The chemo drug Decadron she said is equivalent to 200mg a day of Prednisone. Now that makes me really happy. She said the side effects is being wired and the usual puffy cheeks (more than I have now) weight gain and staying up all night. I take the drug once a week, so she said it is slow acting. She did say that Dr. Dana has talked to the Mayo Clinic, Dr. Brooke Edwards and Stanford to discuss further treatment for Dr. Kevin and me. I will know something next week. I am feeling terrific except for no sleep last night. I plan to take a little nap now and one later this afternoon. The other lab tests for the disease Amyloidosis have not come in yet, should know something next week.
I hope you enjoy the poem "Life". I will post these words from time to time, I think it is important for us to live our lives each day "not by the breaths we take but by the moments that take our breath away". On September 26, 2008, a moment took my breath away, was the moment my new shared heart starting beating inside me. I bless my donor and her family for the blessing I receive that night. I feel deep gratitude for the decision they made to save my life. I have not spoke too much about my donor and my donor family. I don't know much except she was 18 years old from a local community. I wrote my letter to the donor family telling them my deepest gratitude for the gift of life and hope someday they will contact me.
Have a wonderful day. The sun is shining and it is beautiful outside.
love,
debbie
Just spoke with Sue, Nurse at Santa Clara Heart Transplant Center. My cyclosoporine count was 237, which is within the range of 200 to 250. They did not change any medicines at this time. Will look after next week's biopsy. The chemo drug Decadron she said is equivalent to 200mg a day of Prednisone. Now that makes me really happy. She said the side effects is being wired and the usual puffy cheeks (more than I have now) weight gain and staying up all night. I take the drug once a week, so she said it is slow acting. She did say that Dr. Dana has talked to the Mayo Clinic, Dr. Brooke Edwards and Stanford to discuss further treatment for Dr. Kevin and me. I will know something next week. I am feeling terrific except for no sleep last night. I plan to take a little nap now and one later this afternoon. The other lab tests for the disease Amyloidosis have not come in yet, should know something next week.
I hope you enjoy the poem "Life". I will post these words from time to time, I think it is important for us to live our lives each day "not by the breaths we take but by the moments that take our breath away". On September 26, 2008, a moment took my breath away, was the moment my new shared heart starting beating inside me. I bless my donor and her family for the blessing I receive that night. I feel deep gratitude for the decision they made to save my life. I have not spoke too much about my donor and my donor family. I don't know much except she was 18 years old from a local community. I wrote my letter to the donor family telling them my deepest gratitude for the gift of life and hope someday they will contact me.
Have a wonderful day. The sun is shining and it is beautiful outside.
love,
debbie
Wednesday, November 5, 2008
Tuesday, November 4, 2008
DOCTORS APPOINTMENT TODAY
Just got home from Santa Clara and meeting with Jackie, nurse at the Heart Transplant Center. I have been having problems with evaluated blood pressure and headaches since I came home last Thursday. On Friday, I finally called and told them what was going on. Sue changed the dosage of the drug Gengraf and added another pill (that makes me happy) Dilacor twice a day for high blood pressure. Today, my blood pressure at the Heart Center was 122/87, which is great. Pulse is high at 107 but they are not concerned because I'm a recent transplant patient. So my visit was great! No problems at all! Tonight Mark will bring me to Kaiser Santa Rosa so I can have my lab work done to check the Cyclosporine count before next Tuesday's biopsy. This level is what tells them whether a rejection could be possible next week. I have to be at 200-250. My level was very high at 311 last week and that was the reason for high blood pressure and the headaches. So hopefully, tomorrow I can check on line and see what my count is. Again, if it's high or low, they will adjust the dosage of Gengraf before next Tuesday.
Dr. Dana has been talking directly with the Mayo Clinic regarding the chemo treatment for both me and Dr. Kevin. The Mayo Clinic decided that I will begin the chemo drug Decadron tomorrow. It is an oral drug taken once a week. The mg are 4mg in which I have to take 10 at a time. That makes me even happier (more pills). Oh well, whatever it takes to fight the disease and protect my beautiful new heart I will do. Dr. Kevin is feeling terrific. I talked to him last night when I was having all these problems. He reassured me and said everything will be ok.
On Saturday, Markie, Erin and me are attending an Amyloidosis support meeting at Kaiser in Walnut Creek. Dr. Kevin will be there also. This is the Northern California support group for those who are suffering from the disease. I very nervous because I'm sure there will be both happy and sad stories to tell. I hope it will be just as wonderful as the heart transplant support group I belong to in Santa Clara. I have so many friends (Dr. Kevin and Barbie, Tippy and many more) who gives me courage during the hard times. I'm glad Dr. Kevin will be there too!
Tomorrow and Thursday I plan to rest and relax. I want to be rested before next Tuesday's biopsy. Mark, Markie, Erin and me are staying the night in Sunnyvale because I have to be at the hospital at 7:00AM for heart biopsy, chest x rays, lab, clinic, support group and then 2 hour infusion. Another 10 hour day! On Friday, Mom and I get to go to our friend Susan for manicure, pedicure and waxing. Mom is finally getting her hair cut, just like Victoria Beckman's new style. She is going to look HOT! We then will go to Walmart because I need some green plants for my new guest bedroom (Maxwell's old room - won't he be surprised when he comes home in December) and a chair for my computer.
I'm off to Kaiser now. Have a wonderful evening, it's going to be cold. Always enjoy this moment in time!
Love,
debbie
Just got home from Santa Clara and meeting with Jackie, nurse at the Heart Transplant Center. I have been having problems with evaluated blood pressure and headaches since I came home last Thursday. On Friday, I finally called and told them what was going on. Sue changed the dosage of the drug Gengraf and added another pill (that makes me happy) Dilacor twice a day for high blood pressure. Today, my blood pressure at the Heart Center was 122/87, which is great. Pulse is high at 107 but they are not concerned because I'm a recent transplant patient. So my visit was great! No problems at all! Tonight Mark will bring me to Kaiser Santa Rosa so I can have my lab work done to check the Cyclosporine count before next Tuesday's biopsy. This level is what tells them whether a rejection could be possible next week. I have to be at 200-250. My level was very high at 311 last week and that was the reason for high blood pressure and the headaches. So hopefully, tomorrow I can check on line and see what my count is. Again, if it's high or low, they will adjust the dosage of Gengraf before next Tuesday.
Dr. Dana has been talking directly with the Mayo Clinic regarding the chemo treatment for both me and Dr. Kevin. The Mayo Clinic decided that I will begin the chemo drug Decadron tomorrow. It is an oral drug taken once a week. The mg are 4mg in which I have to take 10 at a time. That makes me even happier (more pills). Oh well, whatever it takes to fight the disease and protect my beautiful new heart I will do. Dr. Kevin is feeling terrific. I talked to him last night when I was having all these problems. He reassured me and said everything will be ok.
On Saturday, Markie, Erin and me are attending an Amyloidosis support meeting at Kaiser in Walnut Creek. Dr. Kevin will be there also. This is the Northern California support group for those who are suffering from the disease. I very nervous because I'm sure there will be both happy and sad stories to tell. I hope it will be just as wonderful as the heart transplant support group I belong to in Santa Clara. I have so many friends (Dr. Kevin and Barbie, Tippy and many more) who gives me courage during the hard times. I'm glad Dr. Kevin will be there too!
Tomorrow and Thursday I plan to rest and relax. I want to be rested before next Tuesday's biopsy. Mark, Markie, Erin and me are staying the night in Sunnyvale because I have to be at the hospital at 7:00AM for heart biopsy, chest x rays, lab, clinic, support group and then 2 hour infusion. Another 10 hour day! On Friday, Mom and I get to go to our friend Susan for manicure, pedicure and waxing. Mom is finally getting her hair cut, just like Victoria Beckman's new style. She is going to look HOT! We then will go to Walmart because I need some green plants for my new guest bedroom (Maxwell's old room - won't he be surprised when he comes home in December) and a chair for my computer.
I'm off to Kaiser now. Have a wonderful evening, it's going to be cold. Always enjoy this moment in time!
Love,
debbie
Sunday, November 2, 2008
A BEAUTIFUL SUNDAY
What a beautiful day today is. The sun is shining with broken clouds. Thought it would rain but no rain in sight.
Woke up this morning very early because of the time change. Wrote thank you notes and study Italian lessons. Eat a big breakfast and fell back to sleep for an hour nap. Did that feel great!
Markie came to visit and wash clothes. He is so helpful with my computer problems and of course my computer skills. He is teaching me so many cool things about the computer. I am so blessed to have such a wonderful son. Not to forget Matthew and Maxwell, who both bring me so much love and happiness. I thank God each day for blessing me as a mother. There is no other job in the world that compares to being a "MOM".
Anita Rackerby came by the other day and dropped off a special silver bracelet she got for me in Mexico. The words inscribed on the bracelet read: Family - Hope - Trust - Joy -Truth -Charity -and Love. These are very important words in all of our lives. I thank her for the special gift. I will treasure it forever!
My Auntie Bev sent me a special Italian CD called Il Divo "Ancora". The singers are Italian - very nice looking Italian men and can they sing. There are several songs with Celine Dion. I play it really loud, I'm sure the neighbors can hear it! It reminds me of Italy and my hope (there is one of the words) to go back in two years. What a beautiful country with beautiful people.
Tomorrow is Monday and Mark will be going back to work. I plan to rest because Mom and I have to go to Santa Clara for my doctor's appointment on Tuesday. No heart biopsy this week, thank God, my neck is soooo sore! I have a big day on November 11th, so I get to rest this week. I plan to watch movies, Legally Blonde 1 & 2 and maybe Sex in the City for the 5th time. Funny movie!! I guess from now until the first of the year this will be my routine each day. I was thinking this morning that I need to continue my daily activities just like before such as getting up taking a shower and putting on makeup etc. I think it will be good for the mind, soul and body. I'm frustrated about exercising, but Debbie Looney thinks we can work that out. Possibly take me to Break Through Fitness (my Gym) and work out on the stationary bike while she works out with Tim Rogers, our personal trainer. Wow do I miss super slow!!! Doctor said I can do lower body but no upper body what so ever! Maybe at the first of the year I can start doing lower body super slow with Tim. I know my body needs to recover and heal. Believe me I do whatever the doctors say. I do not take any chances. I have been given a second chance at life and I will not take it for granted. That is a promise I have made to my donor and my donor's family.
It's about 4:30PM and it's starting to get dark. I love this time of year.
Have a wonderful Sunday evening and enjoy this moment in time!
love,
debbie
What a beautiful day today is. The sun is shining with broken clouds. Thought it would rain but no rain in sight.
Woke up this morning very early because of the time change. Wrote thank you notes and study Italian lessons. Eat a big breakfast and fell back to sleep for an hour nap. Did that feel great!
Markie came to visit and wash clothes. He is so helpful with my computer problems and of course my computer skills. He is teaching me so many cool things about the computer. I am so blessed to have such a wonderful son. Not to forget Matthew and Maxwell, who both bring me so much love and happiness. I thank God each day for blessing me as a mother. There is no other job in the world that compares to being a "MOM".
Anita Rackerby came by the other day and dropped off a special silver bracelet she got for me in Mexico. The words inscribed on the bracelet read: Family - Hope - Trust - Joy -Truth -Charity -and Love. These are very important words in all of our lives. I thank her for the special gift. I will treasure it forever!
My Auntie Bev sent me a special Italian CD called Il Divo "Ancora". The singers are Italian - very nice looking Italian men and can they sing. There are several songs with Celine Dion. I play it really loud, I'm sure the neighbors can hear it! It reminds me of Italy and my hope (there is one of the words) to go back in two years. What a beautiful country with beautiful people.
Tomorrow is Monday and Mark will be going back to work. I plan to rest because Mom and I have to go to Santa Clara for my doctor's appointment on Tuesday. No heart biopsy this week, thank God, my neck is soooo sore! I have a big day on November 11th, so I get to rest this week. I plan to watch movies, Legally Blonde 1 & 2 and maybe Sex in the City for the 5th time. Funny movie!! I guess from now until the first of the year this will be my routine each day. I was thinking this morning that I need to continue my daily activities just like before such as getting up taking a shower and putting on makeup etc. I think it will be good for the mind, soul and body. I'm frustrated about exercising, but Debbie Looney thinks we can work that out. Possibly take me to Break Through Fitness (my Gym) and work out on the stationary bike while she works out with Tim Rogers, our personal trainer. Wow do I miss super slow!!! Doctor said I can do lower body but no upper body what so ever! Maybe at the first of the year I can start doing lower body super slow with Tim. I know my body needs to recover and heal. Believe me I do whatever the doctors say. I do not take any chances. I have been given a second chance at life and I will not take it for granted. That is a promise I have made to my donor and my donor's family.
It's about 4:30PM and it's starting to get dark. I love this time of year.
Have a wonderful Sunday evening and enjoy this moment in time!
love,
debbie
Thursday, October 30, 2008
HOME AT LAST!!!
Mom and I came home today at noon. What a moment in time!! I can't believe how it feels to walk around my beautiful home and see everything that is familiar to me. Our little studio was so small and the four walls finally was getting to me and Mom. There's only one thing sad about coming home and that is Mom is not here. I'm really going to miss our time together and all the late night talks (when the drugs were really kicking in) and of course, the early 5:00AM wake up talks. I don't know how I would have made it these last 30 days without her. She has always been and always will be my very best friend and I love her so very much!!
Tomorrow Mark and I will go to Costco and shopping before the rain starts (I hope). I want the house stocked with meat and food so I don't have to run to the store each day. I won't be able to go because I can't drive for 12-16 weeks anyway. This weekend the weather calls for rain, so I plan to watch movies, rest and relax.
Tonight is Hockey Night! My San Jose Sharks are playing the Detroit Red Wings and this will be my first hockey game I get to watch. Markie and Erin and here with us watching the game. Home feels GREAT!!!
Mark surprised me and painted my living room and hallway before I came home. It looks so beautiful!
Have a wonderful weekend and enjoy each moment in time. I know I will definitely enjoy the first moment in time I walked into my beautiful home.
love,
debbie
Mom and I came home today at noon. What a moment in time!! I can't believe how it feels to walk around my beautiful home and see everything that is familiar to me. Our little studio was so small and the four walls finally was getting to me and Mom. There's only one thing sad about coming home and that is Mom is not here. I'm really going to miss our time together and all the late night talks (when the drugs were really kicking in) and of course, the early 5:00AM wake up talks. I don't know how I would have made it these last 30 days without her. She has always been and always will be my very best friend and I love her so very much!!
Tomorrow Mark and I will go to Costco and shopping before the rain starts (I hope). I want the house stocked with meat and food so I don't have to run to the store each day. I won't be able to go because I can't drive for 12-16 weeks anyway. This weekend the weather calls for rain, so I plan to watch movies, rest and relax.
Tonight is Hockey Night! My San Jose Sharks are playing the Detroit Red Wings and this will be my first hockey game I get to watch. Markie and Erin and here with us watching the game. Home feels GREAT!!!
Mark surprised me and painted my living room and hallway before I came home. It looks so beautiful!
Have a wonderful weekend and enjoy each moment in time. I know I will definitely enjoy the first moment in time I walked into my beautiful home.
love,
debbie
Wednesday, October 29, 2008
GOING HOME
Good news! Going home tomorrow! Met with Sue at the Heart Transplant Center and my biopsy was a 1R (slight rejection). I was hoping for an NER but I'll take a lR. She asked the doctors if it was ok for me to go home and they said "yes". So Mom and I are packing our stuff and will be leaving in the morning. I'm so excited to be in my own home. It's been so long! Oh, Mom is excited to be in her house too! Especially, when I have her up at 5:00AM. Ha Ha
I want everyone to know how much I appreciate all the cards, flowers, prayers and kind thoughts you have sent to me. The support has helped me through my recovery and I could not have done this without my family and friends. I still have a long road to travel but the comfort I feel knowing I have a strong support group keeps me going.
Sue also said that the heart transplant doctors do not want me to begin the drug I mentioned yesterday in my blog. They are concerned with the dosage and what it will do to my bones. They are checking with the Mayo Clinic and Stanford before any chemo is started. So for now, I will wait for their direction.
The next few days will be busy grocery shopping, unpacking and settling into my home. I will update tomorrow night after I'm home.
I will definitely enjoy this moment in time!!!
love,
debbie
Tuesday, October 28, 2008
FOURTH HEART BIOPSY TODAY
Wow what a day! It began at 6:30AM this morning. Checked into the heart carth lab for my fourth heart biopsy. Finally at 9:00am they brought me in for the biopsy. Of course, I was dry today and they had a hard time getting into my vein, which took a little longer. I don't know where the happy medium is when it comes to being too wet or too dry. After heart biopsy I went to get chest x rays, lab and then off to clinic to see the doctor. Dr. Neisme did a echo cardiogram and my ejection fraction on my heart was 65. This is great! No fluid on the heart and she was so happy how well the heart is functioning. After clinic, I went to infusion for two hours for the very strong rejection drug called Daclizumab. Then it was off to Stanford to meet with Dr. Shrier, Stanford Amyloidosis doctor who will be treating me for the disease.
Dr. Shrier was very nice and held my hand the whole time he discussed treatment for the Amyloidosis. The bottom line, is if the chemo does not work, which he says they have had much success, then I will be faced with the decision to have a bone marrow transplant. This is way down the road and a decision I will have to make later. He is starting me on the chemo drug
Dexamethazone now and the other drugs in a month. He said it is too soon and I need to recover from the heart transplant first. I need to do more test, of course, so he can decide the full treatment plan. I know this is not going to be easy but I have no choice. I must put the disease in remission.
My wish tonight is for everyone to please say your prayers for a good biopsy result (NER or even a 1R). Doctor said I will be able to go home on Thursday, October 30th, if the result is good. That will be wonderful! I 'm really looking forward to going home. So, I will let you know tomorrow once the results are in.
I know it doesn't need to be mentioned, but when I do come home, I will need to get plenty of rest. Also, I am still very fragile and cannot be around alot of people because of the risk of getting sick. So, I want everyone to know that I love and miss them this past month but please call first and if I'm not up to visitors don't be upset. I have been given a second chance of life and I will be here for a long long time.
Have a wonderful evening and say a little prayer for good results.
love,
debbie
Wow what a day! It began at 6:30AM this morning. Checked into the heart carth lab for my fourth heart biopsy. Finally at 9:00am they brought me in for the biopsy. Of course, I was dry today and they had a hard time getting into my vein, which took a little longer. I don't know where the happy medium is when it comes to being too wet or too dry. After heart biopsy I went to get chest x rays, lab and then off to clinic to see the doctor. Dr. Neisme did a echo cardiogram and my ejection fraction on my heart was 65. This is great! No fluid on the heart and she was so happy how well the heart is functioning. After clinic, I went to infusion for two hours for the very strong rejection drug called Daclizumab. Then it was off to Stanford to meet with Dr. Shrier, Stanford Amyloidosis doctor who will be treating me for the disease.
Dr. Shrier was very nice and held my hand the whole time he discussed treatment for the Amyloidosis. The bottom line, is if the chemo does not work, which he says they have had much success, then I will be faced with the decision to have a bone marrow transplant. This is way down the road and a decision I will have to make later. He is starting me on the chemo drug
Dexamethazone now and the other drugs in a month. He said it is too soon and I need to recover from the heart transplant first. I need to do more test, of course, so he can decide the full treatment plan. I know this is not going to be easy but I have no choice. I must put the disease in remission.
My wish tonight is for everyone to please say your prayers for a good biopsy result (NER or even a 1R). Doctor said I will be able to go home on Thursday, October 30th, if the result is good. That will be wonderful! I 'm really looking forward to going home. So, I will let you know tomorrow once the results are in.
I know it doesn't need to be mentioned, but when I do come home, I will need to get plenty of rest. Also, I am still very fragile and cannot be around alot of people because of the risk of getting sick. So, I want everyone to know that I love and miss them this past month but please call first and if I'm not up to visitors don't be upset. I have been given a second chance of life and I will be here for a long long time.
Have a wonderful evening and say a little prayer for good results.
love,
debbie
Monday, October 27, 2008
Good Morning Dear Family and Friends
It's Monday morning and I've been up since 4:00AM. As many of you know I don't sleep much especially when I took a nice nap yesterday. I finished the book "Nights In Rodanthe", good book. I'll wait for the movie to come out on DVD to watch.
I had a wonderful weekend. Mark, Markie and Erin came to visit on Saturday. I made my famous spaghetti and meatball dinner. It was so good!! Markie was so happy to have Mom's spaghetti and I sent home two big containers for Mark and Markie for lunch. Matthew's doctor's wife, gave me a special gift of soft clay art and Erin and I spent the afternoon making beautiful roses and flowers with the soft clay. She had so much fun making different colors for the flowers. It was a special moment spent with her. I love it!
The boys went to see the Sharks play on TV at a sports bar (I don't have many TV stations here at the hotel) and Mom, Erin and I watched the movie "Return to Me". If you have not seen this movie, WATCH IT! It is about a girl who needs a heart transplant and receives a heart and meets and falls in love with the donor's husband. Yes it's a chick flick but you do see both sides of donor/recipient. I don't think I could have watched before my heart transplant but I have watched it 3 times now. It is a beautiful movie.
Gary and Debbie drove all the way from Santa Rosa to visit too. It was a very nice visit. They brought me newspapers from home, which makes me feel like I'm still apart of the community. Debbie brought me goodies like low sodium Canadian bacon and these wonderful chicken sausage. They are so good to me. I just don't know how I could ever repay or say how much I appreciate them. Words would never be right. Debbie just keeps saying "get well" and that is the best thank you for what they have done. She also surprised me with my "Italian flag ring" that she had done for me by Carolyn and Larry Williams. It is exactly what I wanted and is so beautiful. Thank you Carolyn and Larry. Yesterday was one month since my heart transplant and Debbie waited to give it to me. It was a special moment!
This week is going to be rather stressful. I know I'm not suppose to be stressed but I want to go home. Tuesday, I have a heart biopsy, chest x rays, lab and clinic. I want to get plenty of rest today so I have a good result this week. It is very important if I will be able to go home on Tuesday, November 4th. I will let everyone know on Wednesday when the results are in. My steroid level is down from 100mg to 20mg per day. That makes me nervous that maybe it will trigger a rejection, but my other transplant friends have been lower and Tippy got a NER this last biopsy. So I have to be positive and pray for a NER.
I heard something last night on TV I want to share with you and hope you will live your life this way:
It's Monday morning and I've been up since 4:00AM. As many of you know I don't sleep much especially when I took a nice nap yesterday. I finished the book "Nights In Rodanthe", good book. I'll wait for the movie to come out on DVD to watch.
I had a wonderful weekend. Mark, Markie and Erin came to visit on Saturday. I made my famous spaghetti and meatball dinner. It was so good!! Markie was so happy to have Mom's spaghetti and I sent home two big containers for Mark and Markie for lunch. Matthew's doctor's wife, gave me a special gift of soft clay art and Erin and I spent the afternoon making beautiful roses and flowers with the soft clay. She had so much fun making different colors for the flowers. It was a special moment spent with her. I love it!
The boys went to see the Sharks play on TV at a sports bar (I don't have many TV stations here at the hotel) and Mom, Erin and I watched the movie "Return to Me". If you have not seen this movie, WATCH IT! It is about a girl who needs a heart transplant and receives a heart and meets and falls in love with the donor's husband. Yes it's a chick flick but you do see both sides of donor/recipient. I don't think I could have watched before my heart transplant but I have watched it 3 times now. It is a beautiful movie.
Gary and Debbie drove all the way from Santa Rosa to visit too. It was a very nice visit. They brought me newspapers from home, which makes me feel like I'm still apart of the community. Debbie brought me goodies like low sodium Canadian bacon and these wonderful chicken sausage. They are so good to me. I just don't know how I could ever repay or say how much I appreciate them. Words would never be right. Debbie just keeps saying "get well" and that is the best thank you for what they have done. She also surprised me with my "Italian flag ring" that she had done for me by Carolyn and Larry Williams. It is exactly what I wanted and is so beautiful. Thank you Carolyn and Larry. Yesterday was one month since my heart transplant and Debbie waited to give it to me. It was a special moment!
This week is going to be rather stressful. I know I'm not suppose to be stressed but I want to go home. Tuesday, I have a heart biopsy, chest x rays, lab and clinic. I want to get plenty of rest today so I have a good result this week. It is very important if I will be able to go home on Tuesday, November 4th. I will let everyone know on Wednesday when the results are in. My steroid level is down from 100mg to 20mg per day. That makes me nervous that maybe it will trigger a rejection, but my other transplant friends have been lower and Tippy got a NER this last biopsy. So I have to be positive and pray for a NER.
I heard something last night on TV I want to share with you and hope you will live your life this way:
"APPRECIATE THE PRECIOUS MOMENTS THAT OTHER PEOPLE TAKE FOR GRANTED"
Enjoy this moment in time!
love,
debbie
Friday, October 24, 2008
Heart Biopsy for Amyloidosis
Jackie just called from Kaiser Santa Clara Heart Transplant Center and gave me the great news!
No Amyloid in my new heart!!! Because of the 2R rejection in which Dr. Kevin Anderson and I both had, Kaiser decided to test the new hearts for Amyloidosis now instead of December. We both are negative.
I have written about Dr. Kevin many times throughout this blog and recently linked his blog site with mine (see on the right side bottom for the link). He also has Amyloidosis and is currently being treated by Stanford on chemo. The chemo treatment has made him very sick and fatigue. Also, because of the 2R rejection for two weeks in a row, they are now saying that one of the chemo drugs might be the source of rejection. So, Stanford has suspended the one chemo drug for now until heart biopsy are clear again. Kevin is as he calls it "trailblazing" for me. He is going through all the treatments before me. What is so positive is that he is a doctor and can ask questions and get real answers. I am so lucky to have him in my life at this time. Please look at his blog site from time to time because he writes beautifully and explains the disease clearly for you to understand.
Mom and I went grocery shopping this morning. I get up so early (5:00AM) each day, that today I going to take a nap (little tired). Saturday Mark, Markie and Erin are coming for a visit. I haven't seen them for two weeks. I'm making my spaghetti and meatball dinner for them. It will be fun!
Have a wonderful weekend and enjoy this moment in time.
love,
debbie
Jackie just called from Kaiser Santa Clara Heart Transplant Center and gave me the great news!
No Amyloid in my new heart!!! Because of the 2R rejection in which Dr. Kevin Anderson and I both had, Kaiser decided to test the new hearts for Amyloidosis now instead of December. We both are negative.
I have written about Dr. Kevin many times throughout this blog and recently linked his blog site with mine (see on the right side bottom for the link). He also has Amyloidosis and is currently being treated by Stanford on chemo. The chemo treatment has made him very sick and fatigue. Also, because of the 2R rejection for two weeks in a row, they are now saying that one of the chemo drugs might be the source of rejection. So, Stanford has suspended the one chemo drug for now until heart biopsy are clear again. Kevin is as he calls it "trailblazing" for me. He is going through all the treatments before me. What is so positive is that he is a doctor and can ask questions and get real answers. I am so lucky to have him in my life at this time. Please look at his blog site from time to time because he writes beautifully and explains the disease clearly for you to understand.
Mom and I went grocery shopping this morning. I get up so early (5:00AM) each day, that today I going to take a nap (little tired). Saturday Mark, Markie and Erin are coming for a visit. I haven't seen them for two weeks. I'm making my spaghetti and meatball dinner for them. It will be fun!
Have a wonderful weekend and enjoy this moment in time.
love,
debbie
Thursday, October 23, 2008
MY THOUGHT FOR THE DAY
Life is too short to wake up with regrets. So love the people who treat you right.
Love the ones who don't just because you can. Believe everything happens for a reason.
If you get a second chance, grab it with both hands.
If it changes your life, let it.
Kiss slowly; forgive quickly.
God never said life would be easy.
He just promised it would be worth it!
How true this is for my second chance at life. Enjoy this very special moment in time.
love,
debbie
P.S. I enjoyed reading everyone's comments. If you have not posted a comment, it is very simple. Click on the comment section after one of my daily posts and it will bring you to the section to write a comment. Scroll down and click "anonymous" and publish post. It's that simple.
Life is too short to wake up with regrets. So love the people who treat you right.
Love the ones who don't just because you can. Believe everything happens for a reason.
If you get a second chance, grab it with both hands.
If it changes your life, let it.
Kiss slowly; forgive quickly.
God never said life would be easy.
He just promised it would be worth it!
How true this is for my second chance at life. Enjoy this very special moment in time.
love,
debbie
P.S. I enjoyed reading everyone's comments. If you have not posted a comment, it is very simple. Click on the comment section after one of my daily posts and it will bring you to the section to write a comment. Scroll down and click "anonymous" and publish post. It's that simple.
Wednesday, October 22, 2008
WHAT A BEAUTIFUL MOMENT IN TIME
Just received my biopsy results - NO EVIDENCE OF REJECTION!!!!
I am so happy. My beautiful strong heart is well! God bless my donor and her family!
My lab results are perfect with the cyclosporine count at 243, which is where they want it. No changes in medicines for the next week.
I will take my last biopsy for the month next Tuesday and hopefully they will release me to go home on November 4th. Everything still depends on the next biopsy but I feel confident that the medicines are finally working properly.
I received a call today from Stanford Medical Center, Dr. Shrier who is the leading Amyloidosis doctor at Stanford. I have an appointment next Tuesday at 4:00PM to discuss my chemo treatment for the Amyloidosis. I'm very anxious to start Chemo because I don't want any damage to my heart or other organs. Chemo will not be fun. Dr. Kevin Anderson is having a rough time with it. Please say your prayers for him and me. We still have a battle to fight!
Before my transplant, alot of you know, I was not able to climb a flight of stairs. As a matter of fact, two days before I went into the hospital I couldn't climb 4 stairs at Mom's house. I asked Dr. Dana yesterday if I could try. She said I could do anything with my legs and nothing with the upper body for 12-16 weeks. So today, I climbed two flights of stairs with no shortness of breathe. It felt so wonderful!!! Mom and I also found out that the hotel has an exercise room with bikes, treadmills, weights etc. So we were there this morning and I rode the bike for 15 minutes at a good pace and could feel my heart pumping. I did it and feel great!!!! I will slowly increase my time over the next few weeks. What a beautiful feeling to breathe all the way down to my stomach area with no pain and no shortness of breathe.
Thank you for all your prayers and thoughts. This day has been a wonderful moment in time.
Love,
Debbie
Just received my biopsy results - NO EVIDENCE OF REJECTION!!!!
I am so happy. My beautiful strong heart is well! God bless my donor and her family!
My lab results are perfect with the cyclosporine count at 243, which is where they want it. No changes in medicines for the next week.
I will take my last biopsy for the month next Tuesday and hopefully they will release me to go home on November 4th. Everything still depends on the next biopsy but I feel confident that the medicines are finally working properly.
I received a call today from Stanford Medical Center, Dr. Shrier who is the leading Amyloidosis doctor at Stanford. I have an appointment next Tuesday at 4:00PM to discuss my chemo treatment for the Amyloidosis. I'm very anxious to start Chemo because I don't want any damage to my heart or other organs. Chemo will not be fun. Dr. Kevin Anderson is having a rough time with it. Please say your prayers for him and me. We still have a battle to fight!
Before my transplant, alot of you know, I was not able to climb a flight of stairs. As a matter of fact, two days before I went into the hospital I couldn't climb 4 stairs at Mom's house. I asked Dr. Dana yesterday if I could try. She said I could do anything with my legs and nothing with the upper body for 12-16 weeks. So today, I climbed two flights of stairs with no shortness of breathe. It felt so wonderful!!! Mom and I also found out that the hotel has an exercise room with bikes, treadmills, weights etc. So we were there this morning and I rode the bike for 15 minutes at a good pace and could feel my heart pumping. I did it and feel great!!!! I will slowly increase my time over the next few weeks. What a beautiful feeling to breathe all the way down to my stomach area with no pain and no shortness of breathe.
Thank you for all your prayers and thoughts. This day has been a wonderful moment in time.
Love,
Debbie
Tuesday, October 21, 2008
Third Heart Biospy Today
Just got back from the hospital. Took my third heart biospy, right heart cath, lab work, Amyloidosis biospy and chest x rays. Wow, what a day!
The doctor now said I ate too much salt and that I was too WET! I can't figure out what they want. I have been so good and last night Mom and I got take out at PF Changs - YUMMMM! I pigged out! So next Monday, its either Taco Bell or Round Table Pizza.
The right heart cath revealed no damage to my beautiful heart from the rejection last week. Thank God. The pressures of the heart are perfect and they are so happy with the way the heart is so strong. My level of cyclosporine (Immuno suppression drug) they believe is still too low because I don't have any shakes or tremors. So I think the results might come back with a slight rejection tomorrow until they can get this level up. My level is at 160 and I need to be closer to 200. My body is metabolizing this drug too quickly. Dr. Dana even thinks maybe I should be on Prograf instead of Gengraf. We will see tomorrow once all the results are in.
As for the Amyloidosis biospy, I should know those results maybe next week. Because of the rejection 2R last week, they want to be sure the Amyloidosis has not started to damage my new heart. I have an appointment with Stanford Medical Center, Dr. Shrier, Cancer Oncology for November 18th. Dr. Dana was not happy that it is so far out and she was going to call to get an appointment sooner. Kaiser feels I need to get on the Chemo sooner than later.
Dr. Dana said I am doing wonderful and she is soooo pleased with my recovery. She said I can start riding a stationary bike, treadmill and guess what - climb a flight of stairs. Alot of you know that is how it all started. I could not climb a flight of stairs. I'm so excited and will try tomorrow. I know my new heart is strong because when I do my walking exercise I can breathe way down in my lungs. I have not been able to do that or feel that feeling for a long time. It feels so good!
So until tomorrow when I receive my results, have a wonderful evening. Enjoy each and every moment in time.
love,
debbie
Just got back from the hospital. Took my third heart biospy, right heart cath, lab work, Amyloidosis biospy and chest x rays. Wow, what a day!
The doctor now said I ate too much salt and that I was too WET! I can't figure out what they want. I have been so good and last night Mom and I got take out at PF Changs - YUMMMM! I pigged out! So next Monday, its either Taco Bell or Round Table Pizza.
The right heart cath revealed no damage to my beautiful heart from the rejection last week. Thank God. The pressures of the heart are perfect and they are so happy with the way the heart is so strong. My level of cyclosporine (Immuno suppression drug) they believe is still too low because I don't have any shakes or tremors. So I think the results might come back with a slight rejection tomorrow until they can get this level up. My level is at 160 and I need to be closer to 200. My body is metabolizing this drug too quickly. Dr. Dana even thinks maybe I should be on Prograf instead of Gengraf. We will see tomorrow once all the results are in.
As for the Amyloidosis biospy, I should know those results maybe next week. Because of the rejection 2R last week, they want to be sure the Amyloidosis has not started to damage my new heart. I have an appointment with Stanford Medical Center, Dr. Shrier, Cancer Oncology for November 18th. Dr. Dana was not happy that it is so far out and she was going to call to get an appointment sooner. Kaiser feels I need to get on the Chemo sooner than later.
Dr. Dana said I am doing wonderful and she is soooo pleased with my recovery. She said I can start riding a stationary bike, treadmill and guess what - climb a flight of stairs. Alot of you know that is how it all started. I could not climb a flight of stairs. I'm so excited and will try tomorrow. I know my new heart is strong because when I do my walking exercise I can breathe way down in my lungs. I have not been able to do that or feel that feeling for a long time. It feels so good!
So until tomorrow when I receive my results, have a wonderful evening. Enjoy each and every moment in time.
love,
debbie
Subscribe to:
Posts (Atom)