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
Thursday, October 30, 2008
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
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