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

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

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:

"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

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.

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

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

Monday, October 20, 2008

Good Morning Monday

Another weekend passed here at the hotel. My sister Mary Ann came to visit. I haven't seen her since before I went into the hospital. She made a wonderful dinner Saturday night - chicken picata, roasted potatoes, green beans and a green salad. We had a short visit but it was wonderful. Matt and Mark drove up from Los Angeles and of course the boys made it just in time for dinner. They ate and visited for a short time and left. Matt took me for a long walk and kept saying how fast I was walking. He made a funny remark that I looked like a lost puppy who wanted to go for a walk. I did! I felt good seeing him because Matt left the hospital after my surgery because he didn't want to see me with all the tubes and such. So it's been three weeks since I have seen him. It was so nice!

Nana and I spent Sunday afternoon doing laundry, watching movies, resting and napping. It was a quiet day. Today I want to go to Wal Mart and Target. I just finished redecorating Max's room and need curtains and two end tables for lamps. It looks so pretty. Can't wait to go home and see it finished and enjoy the room.

This is the start of our 3rd week here at the hotel. I'm hoping they will release me to go home on the 4th of November. As long as my heart biopsy come out ok, I think that will be the day. Keep praying for good test results. At this time, I'm not ready to be away from the hospital but by then I feel things will be under control as for my drugs etc and I will be fine to go home.

Tomorrow is big day for tests. Right heart cath will be done again to be sure no damage caused to my beautiful new heart after last week's rejection. 3rd heart biopsy to determine rejection this week, lab work and chest x rays. It should not be a long day so I will be able to go back to the hotel and rest alittle. I will let everyone know the results on Wednesday. Keep those prayers coming!

I appreciate all the comments everyone has left on my blogsite. It's fun reading them. If you don't know how to do it - just click on the "comments" and it will take you to the area to type in your comments. You don't have to register, just sign in as "anonymous" and click post comment.
I hope everyone is enjoying the blog site it is the best way for me to communicate what is happening with tests results, doctor appointments and my daily routine. Enjoy!

Have a wonderful day and enjoy this moment in time!

love,
debbie

Friday, October 17, 2008

Sunshine

Got to go grocery shopping this morning with Mom. What a beautiful day! I walked slowly and we took our time shopping. It felt so good. The hotel personnel here are so helpful. They carried all the groceries into the room, which was such a big help. Mom and I are going to go for our walks, watch movies and just relax. I had the best nap ever yesterday, an hour in a half. It felt so good. My body feels great and I still have not had many side effects from the increase of drugs. This weekend as I said is going to be very quiet. I want to prepare my body for next Tuesday's tests. Oh, the doctor said before Tuesday and on Monday night I'm allowed a very salty meal. So Mom and I decided Monday night dinners are going to be either pizza, Mexican or Chinese. So this Monday, we found a Panda Express and will go for take out. I told her let's get all different kinds of Chinese foods. Yummmmm! Hopefully, the salty meal the night before will help pump up my vein in my neck so the heart biopsy will go smooth. I miss everyone and can't wait to see you! For now this is where I have to be and I accept that. You never realize how much just going out shopping can make you feel normal. But it did!

Have a wonderful weekend and enjoy each and every moment in time.

love,
Debbie

Thursday, October 16, 2008

My Sister Debbie

Well first off I want to say sissy, I love you...

You are my insperation, my mentor, my heart and my big sissy. Growing up I have always been closest to you maybe because you took me over when I was a baby, My Kathleena.

No one in this world can ever compare to you, That song "Wind Beneath my Wings" that has and always will be my song to you. Your strength, your love is one that I wish everyone can experience. I know we have had our ups and downs but hey were sisters. I know in my heart you are going to get through all this, with your attitude, and willing to be #1 that is why I know this is just a Moment in Time. See that is why also Mommy had you FIRST (HAHA) you always been that way.Sissy

I love you and remember those baby steps you did when you were young, well this is that too, baby steps to a healthy happy life.Who ever this little girl is who gave me my sister her life I thank you and pray for you every night and your family, God Bless you..

I love you sissyyour little Sis
KATHIE
Appointment with Sue, Nurse Practitioner

Met with Sue this morning instead of tomorrow because of the results last night. Not that she was concerned about anything but for my peace of mind. She said that if it was serious she would have me admitted to the hospital last night. This is just "a moment in time" and that everyone rejects this way. I had a moderate rejection and is treatable with the increase of the drugs. Also, on Tuesday I received through infusion another very powerful immuno suppressant that I received the day of transplant. So with the combination of that drug and the increase of my other drugs should knock this out. I do have another heart biopsy on Tuesday along with a right heart cath. They are going to do the right heart cath to be sure no damage was caused to my beautiful new heart. If so, again it is treated with more medicine. No permanent damage to the heart will result from this rejection. Thank god! They are also going to do a biopsy on my heart for Amyloidosis. Ironically, Dr. Kevin and I both had the same results and as you know he has Amyloidosis. So they are thinking that they should check us sooner than later for Amyloidosis in our new hearts. I am feeling great and that is why it was such a "shock" to hear I was rejecting. But as I have said before, sometimes there are no symptoms. Mom and I are going to rest, relax, go for walks and watch movies this whole weekend. I'm hoping to gain more strength before next Tuesday.

Have a wonderful day and enjoy this moment in time.
love,
Debbie
Second Biopsy Results

Well I don't know where to begin but I had my first setback. My second biopsy results came back rejection 2A-3R stable but moderate rejection. But that's ok because so far I have had good amazing results and this has put me in my place. My lab work came back fine, the infection is no longer a issue. Sue, nurse practioner, increased my daily dose of prednisone from 45mg to 100mg. I was just starting to level off on the prednisone but it is an important anti rejection drug, so therefore the increase is needed. Poor Mom she will have to deal with my moods and emotions and I say right now "I'm sorry for anything I say or do". She also increased my Gengraff dose to 175mg twice a day. Sue said the heart is strong but that next week they will want to perform another right heart carth just to measure the pressures of my beautiful new heart. So next Tuesday, will again, be a stressful day with many, many tests. This news was very disappointing but as I said before, "It's not if you reject, it's when you reject". I immediately called Dr. Kevin Anderson, my friend and buddy, who also informed me that he received the exact same results. So we both decided that our bodies are telling us to slow down, rest, relax and rid stress. So this weekend we are going to be "couch potatoes". I have asked friends and family not to visit this weekend, so I may be able to gain the rest I need before Tuesday tests. I feel great which makes things harder because I want to do more but realize I can't. I am still very positive and expect to be back on track again. This happens to many heart transplant patients. My good friend Tippy, throughout these last 6 weeks since her heart transplant has never received an NER (No evidence of rejection) until yesterday. She got the wonderful news of her first "NER". We are so proud of her! The support group helps with the ups and downs of tests and I enjoy talking to others who have been through this. They are a great source of strength.

In closing for today, I appreciate the love and support of my family and friends and we will get through this together. Keep your prayers coming!

Love,
Debbie

Wednesday, October 15, 2008

Cousin Georgine

Wish I had a picture of her. If you notice the beautiful blanket in my blog with the two connecting hearts, cousin Georgine gave that to me. It is so beautiful. Cousin Georgine spent the whole day yesterday with me and Mom. I can't tell you how much that meant to me to have her so close to us. As I was growing up, her family always lived so close by and we spent many days playing with all of our cousins. As moments in time go, we have families and lives that keep us busy and don't seem to find time to spend with eachother. I am thankful for yesterday to spend those moments with her and will always cherish the love I have for her. Mom and I thank you for being there but we really would have been happy if you would have eaten something. Love you much!

Tuesday, October 14, 2008

WHAT A LONG DAY!!!!!

Just got home from being at the hospital all day since 7:00AM. I am soooo tired. Our day started at 7:00AM with my second heart biospy. Of course, by the time it was my turn it was 10:00AM. The biospy went smooth this time. Then it was off to clinic to meet with doctor to go over medicines, do echo and examination. Everything is perfect!! I got to see my new heart beating on the echo. It is such a strong heart! After clinic, Mom and I went to the heart transplant support group. I just walked in when they were talking about me. It was so great having Mark, Erin, Gary and Debbie there with me and Mom. Erin loved the support group. I'm hoping Markie will come next month. After support group, I had to go to the infusion center for my second dose of Daclizumab, which is a immuno suppresant drug. I have 3 more to get. That took 2 hours and then we were off to the pharmacy to pick up more drugs. Lastly, chest X rays which took another hour. I spent a total of 11 hours at the hospital today.

Mom and I are now back at the hotel. We are going to fix dinner, watch Dancing with the Stars and go to bed!!

I will let you know results of biopsy tomorrow.

Have a wonderful evening and enjoy this moment in time.

Love,
Debbie

Monday, October 13, 2008

Second Week at the Hotel

Spent a nice weekend with family. Mark, Markie and Erin came down Saturday for a visit. They went to the Sharks game that night and yes my sharks won!

My good friend, Susan who happens to do my nails came all the way from Santa Rosa to do - here's the list:
nails, dye my hair, pedicure, manicue, hair cut and waxing. Mom got the same. We had so much fun! I thank Susan for taking the time to drive here and do that. It made me feel so good!!

Sunday was spent just relaxing and my family left early to go home. Debbie and Gary drove 3 hours last night to come and visit. I felt so bad it took them so long, but enjoyed their visit. It's so sad to see everyone leave. I'm still too afraid to leave this little hotel room next to the hospital. I want to stay here until the doctors say I'm ok to leave. I miss my home and my family and friends but I know how important this next 30 days is.

I'm feeling wonderful and starting to gain strenght. I have been walking 8-12 laps each day around the hotel complex or about 30-45 minutes of walking. It feels wonderful. I'm not short of breath anymore and can really feel my new heart pumping so strong. God bless my donor!

Today, I had a very nice visit with Ross Hawkins and his girlfriend Cynthia. They surprised me which was so nice. Mom fixed lunch, oh forgot to say. I haven't had meatloaf in about ten years and Mom made a big meatloaf, mash potatoes and green beans last night. So for lunch today we had meatloaf sandwiches YUMMMM! I'm getting spoiled. I gained a pound which I need since I have lost weight. So Nana's good cooking is starting to work! ha ha

Tomorrow is another big day. I have to be at the hospital at 7:00Am for heart biospy, chest x rays, lab work and clinic visit. Then I'm so excited because Mark, Erin, Gary and Debbie are coming to the heart transplant support group meeting with me. This is such an important part of my recovery to see my fellow transplant recipients and talk to them. Kevin and Barbie, John and Cheryl, Tippy and Scott, Ken and Wendy, Matt and his parents will all be there. It is going to be a happy reunion because everyone gets to see me and Matt after our heart transplants. I haven't mentioned Matt before but Matt was my next door neighbor at Kaiser hospital for those first 4 days. He was #1 on the heart transplant list for the next heart and had been in the hospital for over 6 weeks. My call came first which was sad for Matt but God his ways and Matt received a new heart 8 hours after me. He is so sweet and looks terrific! Again, a moment in time - why?

I will report on the results of my heart biospy when they call on Wednesday afternoon. I'm hoping for another NER (no evidence of rejection). Bear in mind, if a rejection does occur the doctors switch or up my medicine to fight the rejection. Everyone has rejection. It's normal for our bodies to rejection a foreign object (new heart) in our body. The saying is not "if" but "when" your body starts to reject. My prayers are for another NER!

Have a wonderful evening and enjoy this moment in time!

love,
debbie

Sunday, October 12, 2008

Maxwell and hockey friends shopping at a market in Innsifil. Maxwell is second from the right. Check out the hair cut. Rookies had to cut their hair short. Isn't he cute!

Saturday, October 11, 2008

Friday, October 10, 2008

Two weeks Today - The most important moment in my life - my new shared heart!

Mom and I went to the hospital today for my weekly RN visit with Sue. These appointments are for a quick checkup of BP, HR, temperature, discussing medicines and lab work and overall health questions and concerns.

Sue said my lab work showed some slight changes to my overall body health. Nothing to do with the heart. My lab worked showed somekind of infection brewing and they are a little concern. She remove the stitches from the chest tube incusion, which feels good. She said it could be anything from those incusions to the surgery itself. Anyway, today is going to be a very restful day and hope this infection doesn't get worse. They will do lab work again on Tuesday to check the blood again. Also, the way my body cloths is a problem too. She asked me to increase my daily dose of aspirin to two. I feel great and will just watch for any signs of infection.

Kind of makes sense now, yesterday was a "lazy day". Mom and and I walked 30 minutes around the hotel complex. We watched "Bridges over Madison County" in the afternoon, had lunch and I took a long nap. I guess after hearing all about the lab work, it makes sense my body wants to rest and heal. So today, that's exactly what I plan to do. We watched my most favorite movie last night "Under the Tuscan Sun"! I can't WAIT to go back to Italy. I'm giving myself two years to return to Portoverniere. This time I would love to stay a few days there to really experience the people and culture. It would be a dream come true!

Oh, if you have been wondering I'm still learning "italiano". I have been listening to my Rosetta Stone tapes and Mom has helped alot. We sometimes speak little words together to help. She is learning too because she only knows Sicilian. It's alot of fun!

Have a wonderful weekend. Enjoy every moment in time!

love,

Debbie

Thursday, October 9, 2008

A special gift from cousin Mary Ann Smiley that cheers us up each morning! Thank you for being so thoughtful!
Love,
Debbie
Mark and Me!
Nana cooking! Making me fat!



My little sister
Kathy
Well here it is the famous "MASK". I have to wear this mask whenever I am outside in the fresh air, hospital or large crowds. This mask protects me from germs and a certain virus that is in the air for the next 30-60 days. Isn't is lovely?
Just a sample of the pills I have to take each day to protect my new heart. At this time, there are approximately 19 in the morning; 2 at noon and 16 at night. I will do anything to protect my new heart and honor the second chance at life my donor has given me. Another moment in time!
A SPECIAL MESSAGE TO LIVE EACH MOMENT IN TIME:


LEARN FROM YESTERDAY

LIVE FOR TODAY

HOPE FOR TOMORROW
Love,
Debbie

Wednesday, October 8, 2008

First Heart Biospy Results

Just received the call from Sue at the Santa Clara Heart Transplant Center regarding my test results from the first heart biospy.

NO EVIDENCE OF REJECTION (NER)

I am so happy and know I have a perfect heart. God bless my donor.

I realize I still have many more heart biospies to come, but this is a happy moment in time.

Love,
Debbie
Heart Transplant Friends

The word "why". What does it mean when a moment in time brings so many beautiful people together.

On August 12, 2008, I walked into a small conference room at Santa Clara Heart Transplant Center to attend a support meeting. I was scared. Gary, Debbie, Mom and I did not know what would happen next.

We were among 10-15 recently heart transplants patients who ranged in age and years being tranplanted. They all welcomed us and made us feel loved just like "family".

I came there that day to especially meet Dr. Kevin Anderson. I know I have mentioned his name before throughout this blog. Kevin and I have the same type of Amyloidosis and we were digonased two weeks apart from eachother. Why?

Kevin was happy to meet me and I can't tell you how happy I was to meet him. He is a doctor. His life has been devoted treating and caring for his patients. I told him that day, he can take good care of me and he has. Through these last months of ups and downs, whenever I got scared or felt down, I would call him. He always picked up my spirits so I could keep going on.
Why has life brought us together in this moment. Only one person knows. I am very grateful for the love and support Kevin and Barbie have given me.

Also, that day I noticed a beautiful young mother. Kids and husband close by to support her. I didn't know her story or why she was there, but why did this moment bring us together?

I met Tippy and she is such an inspiration to me. Tippy has a disease called "FA" which had damaged her heart. She received a new heart on August 28th and is doing great. She was with me everyday before my heart transplant and I will always be grateful for our wonderful friendship.

She's my wild little girl and I can't wait till we are both well and can do a "girl's day out".

The support group is very important to all of us and many thanks go out to Janet Stevenson who has worked very hard supporting us.

I thank God for the many blessing I have received throughout these moments in time, but the people I have met will always hold a special place in my heart.

Debbie
First Biospy on my new Heart

Yesterday was a very busy day, althrough I already knew what was in stored because Kevin and Tippy have kept me informed.

Mom and I got up at 5:00AM, had breakfast and went to the hospital by 7:00AM for my first heart biospy, lab work, right heart cath, x rays and clinic visit. Every Tuesday morning this month I will be at the hospital for these and other additional tests, such as echo and infusions of immo suppress drugs.

I did have a heart biospy in July to determine that my heart was damaged and I did have the disease Amyloidosis. Yesterday did not go so smooth. My body they said was "dry". This means they had a hard time entering the vein in my neck to do the biospy and heart cath. It took forever and of course last night I was so sore. I have not taken any pain medicine since last week and last night I had to. Then as things will go the machine that caluculates pressure on my new heart BROKE, right in the middle of all of this. So this was to take a half hour in and out, took over an hour. Needless to say, Mom was upset. I keep saying this is just my moment in time and it is VERY important to take these tests.

The tests will determine the level of rejection my new heart is currently in. Remember I am taking (haven't taken a picture yet of the medicine) 19 pills in the morning; 2 noon and 16 in the evening to help my body not reject my new heart.

The level of rejection is broken down into various levels such as 1A, 1B, 2A and the one we want the most is NER (no evidence of rejection). The doctors states it is not if but when your body will start rejecting the new heart. They treat the rejection with of course, more pills and different drugs. These drugs are what will keep me alive for the rest of my life. I will always have to take the drugs to prevent rejection.

I will know this afternoon the results of my first heart biospy and lab work. The right heart cath pressures of my new heart were excellent from what Dr. Park stated. The heart is very strong and everything looks great. Thank God! I am so blessed.

Have a wonderful moment in time.
Debbie

Tuesday, October 7, 2008

A SPECIAL THANKS:

My little sister Kathy deserves a GREAT BIG THANK YOU. This blog site is all because of her. She spent all weekend setting it up, posting my comments and taking pictures. I will always be grateful to her. She is spending the weekends with us helping Mom take care of me. Thank you sissy. I love you so very much!!

Monday, October 6, 2008

Sunday afternoon was great. I had a lot of visitors and it felt good to spend time with them. My cousins Mike, Bob, Vincie, Sandy, Angie and Donna all came to visit. We laugh so much about the fun times we had growing up. I know they were so happy to finally see me. It's been a long 6 months of waiting for this to come. I know they were scared, I could especially see it in my cousin Angie's face, but I think yesterday helped relieve her tensions. See the cute picture of all of them with me. Mark, Erin and Markie left at 1:30PM to go back to Santa Rosa. They have work today and Big Mark of course had to see his Pittsburg Steelers win last night. We had a nice weekend. They spent the night at Grandma Ruby's (Erin's grandma who is 91 years young)house in San Jose. They came yesterday and Markie spent the morning setting up my lap top with all the special stuff for me to communicate while staying at the hotel. Everything is running great! Sissy Kathy brought her Wii system and I never laughed so hard watching Erin playing boxing (pictures to come). Big Mark brought Mom and I a new DVD player because the hotel room did not have one. Nana brought all the old movies and I want to watch movies at night, except for Monday and Tuesday when "Dancing with the Stars" is on. Gary and Debbie along with Susan and Doug Provencher came by after their trip to Los Angeles. I think Gary and Debbie feel comfortable knowing where I'm at and that the hotel room is nice. I did have to say its not "The Peninsula Beverly Hills" but it will do for now. Can't wait to go back to The Peninsula soon. They brought me a beautiful robe and slippers from the Montage Laguna Niguel. It is sooooo warm!!! Ross Hawkins and his girlfriend Cynthia and girls came to visit too. It was nice seeing him. He is one of my special clients and certainly a true friend. The evening was quiet. Sissy made a beautiful dinner with chicken tortellini, meatball and of course Nana's frittata. I was sooo full! We watched a movie and tried to stay up till 10:00PM. Night time is hard because I don't sleep good. I wake up several times and have a hard time going back to sleep. I'm sure it is the drugs! Oh by the way, everything I do or say that might be bad, I'm blaming on the drugs (steroids). It will only be this month for the worst part and this week they say will be the WORST. I have apologized to Mom before and hope I don't hurt her feelings. She understands. Today is going to be very quiet. No visitors scheduled and I will do my walking (at least 30 minutes per day) and rest. Tomorrow is going to be hectic. I have to be at the hospital at 7:00AM for my first heart biopsy, echo, EKG, x rays, lab and clinic. Tuesdays are big days for me this next month, so I want to rest today. Keep praying for me especially when I have a heart biopsy and my new chant each week will be "NER", which means "NO EVIDENCE REJECTION". I realize the first few biopsy will have some small form of rejection, it is just normal. I'm hoping for NER as the weeks go by. Keep praying!!! I can feel all your love and support!!

Sunday, October 5, 2008

The happiness day of my life!
I have a beautiful daughter!
My beautiful daughter, Erin and my son Mark on their wedding day August 19, 2006.
COUSINS:

Spent Sunday afternoon with my cousins. Top row: Bob, Vincie and Mike. Next row: Sandy, me, Angie and Donna. What a great time talking over our childhood and the many things we enjoyed doing as families. This is family and what is keeping me strong to continue my recovery and the fight I have ahead. I could not do it without their love and support!
A beautiful gift from consin Georgine and Ray. A red and black blanket with two large red hearts inerwined together. This is a beautiful symbol of the shared heart in my body that will ever be cherished forever !!!

Third Moment in Time....

I was released from Stanford Hospital on Thursday October 2nd. My doctors have been so amazed as to how well and fast I have recovered. I kept telling them it was the doctors and nurses at Stanford Medical Center who treated me. They were all wonderful, Christine, Dr. Toby, Dr. Oyer, Iris, Kate, Melissa, Noel (aka) Joel, and all the ones from Kaiser Hospital.

Mom, Auntie Mary Joan and her friend Don came to the hospital to pick me up on Thursday. It took forever, of course but we had to go to Kaiser in Santa Clara clinic to be checked out. I took more lab tests and picked up my very expensive medicines (picture to come). We then left for the hotel where Mom and I will live for the next 30 days, close to the hospital. Auntie and Mom went grocery shopping and we cooked dinner and went to bed EXHAUSTED but VERY GRATEFUL!!!

The next day, Friday was a busy day and more tests. I had a echo, EKG and chest x rays. The echo showed a little fluid on the heart but Sue was not concerned. She wanted me to add Lastix to my pills on Saturday and watch the weight. I have lost twelve pounds since this started but I can tell you Mom will fatten me up quick. I get to have all of her special home cooked meals such as frittata (which she is making right now). My sissy Kathy came down today and is staying with us till Monday. She is also a great cook and such a big help. She removed all my acrylic nails (doctors do not want those on cause they can get fungus). She is treating me so special and I am taking it all in. I'm so lucky to have such a wonderful family and all my friends.

At this time, let me say a special thanks to all of you who have sent cards, flowers, telephone calls and of course your prayers and love during this time. Thanks to my special friends at home in the neighbor who have kept Mark feed and watch over the house. Thanks to Scott and Linda Ford for your strength you give me each day. I could not have done this without each and every one of you.

Yesterday Mark, Markie and Erin came down and visited with us. We had a wonderful time and I am waiting for them to return this morning. Markie fixed my lap top and brought me things to help speed up the internet. Mark noticed Mom and I did not have a DVD player in the room and went and brought one. Mom brought a lot of her old DVD movies to watch.

The rule while staying in the hotel these next 30 days is that I stay inside. If I have to go out I must wear a protective mask from the outside air. I cannot be around anyone who is sick or who has been in contact with someone sick. My immuno system is being brought down to nothing so that my body does not reject the new heart. It is very cruical I don't get sick. When friends and family come to visit they have to "gel up and gel out" before coming in to see me. I do ask that everyone let me know when they would like to visit because I still need naps during the day.

Today is Sunday and the sun is shining! What a beautiful day! I can't wait to see Mark, Markie and Erin. Gary and Debbie Looney and Doug and Susan Provencher are coming this afternoon upon arriving from Los Angeles. They were at the Breast Cancer Walk in Long Beach for my dearest friend, Kathy Conley. I was disappointed I couldn't be there but Kathy said they listed my name on their back and walked for me too. Last year I walked the whole 6 miles with no stress and next year I will be running the 6 miles Ha Ha! They had a wonderful time and I miss them all.

Saturday, October 4, 2008

Another Moment in Time Came!

On Thursday, September 25th at 8:45pm I was on the phone with Mark saying goodnight. My hospital room phone kept ringing. I told Mark to hold on because someone really wants to talk. I picked up the phone and it was Dr. Dana Weisshaar. She asked how I was feeling and I told her great! She then said in a special way "Well how would you feel if I take you off dopomine"? I started to get concerned but asked her why take me off now.

The Moment was Here:

She said because "I have the most beautiful perfect heart for you waiting at Stanford". The ambulance will be there at 11:30 pm to get you.

I couldn't believe a new heart came to me in 4 days. God bless my donor and the family.

Mark was so excited. You'll have to ask him about what happen next.

I quickly called my cousin Maria Bartlett who came down to the hospital to pack up my suitcases and away I went at midnight to Stanford Medical Center.

The next 19 hours we sat in limbo waiting for the decision to go.

My donor, what I have been told, was a Male 19 yrs old from Vacaville. I don't know how he passed but these details and my desire to meet his family will be another moment in time.

My donor was a multiple donor which can create problems when harvesting several organs. Each transplant team wants the organs as quickly as possible. My heart surgeon said it is very difficult keeping a donor on life support and maintain good function to all organs. That is what was happening during these long 19 hours. The heart functions was not acceptable and they did not want to accept unless it was "Perfect". He said we have to wait! ! I was so afraid that they would say no and go back to the hospital after going so far but if that was God's wish then I would accept it.

At 4:00 pm the phone in ICU rang and my nurse Iris answered to hear "It was a go for 6:30 PM". My dearest family and friends were all there to support me.

I want at this special moment in time to express my deepest love and appreciation to Gary & Debbie Looney. They provided hotel rooms, food, and love and support to Mark, Mom and my family. I can never find the most appropriate words to let them know how much I love and care for them.

The time passed and I kept praying "I'm not afraid" "I want this". At 8:00pm I was taken to the operating room for surgery. I remember only a few minutes talking to Dr. Toby before the mask came down and I was asleep.

I was still asleep but family and friends said I was out at 3:00am. Of course I spent the hour slowly waking up from the operation. I don't remember much, only what everyone is telling me.
I have quickly recovered and feel great!!

My room


Second Moment

On September 5th 2008 I received a call from my Dr. Dana Weisshaar letting me know Stanford accepted me as a heart transplant candidate category 2 at home.

This was exciting and what I had been praying for the last five months. On the other side, Dr. Dana said it would be months possibly a year before I would received a new heart waiting at home. I was very concerned but decided to continue my normal daily activities including walking and exercising.

The following week was very stressful for me. I had a lot going on at work and home. I notice a big change happening quickly. My body was breaking down. I wasn't able to sleep for months at night, so fatigued couldn't walk across the street to get my mail without being short of breath and in pain. I had developed a very nagging cough which later I found was due to congested heart failure.

On September 19th I was busy at work and received a call from my Dr. Dana Weisshaar. I was kind of surprise to hear from her. She was asking very directly my symptoms and how I was feeling, I told her I was failing and that my symptoms were increasing quickly.

I call Dr. Dana my "little bulldog" she is the kind of doctor who will not give up on her patients. The heart transplant team she has formed call the "Family" and it is true. We are one big special "Family" Dr. Dana was quite upset with me why I did not go to her on the support group meeting day, Sept 9th to tell her I wanted to be admitted to the hospital as a category 1B. The heart transplant list is broken down by category 1A is those who will live for one week, 1B is those who have 30 days and 2 is up to one year.

She kept asking "Debbie why are you denying this? You are sick what are you afraid of?" As I listen to her words I realized she was right, I was sick.

So that moment in time I told Dr. Dana I was ready to be put in the hospital as a category 1B on dopomine (a heart medicine which helps the heart function better). She asked me, why not come today. Immediately I told her "Oh No" I have so much to do to get ready". She said OK you are coming into clinic on Monday Sept 22nd and do not plan to go home after. I said yes.

On Monday September 22nd I went into the hospital at Santa Clara Heart Transplant Center. At approximately 4:30pm the first drops of dopomine was intravenously injected into my body. A Stanford Cardiologist was standing by with the phone to inform Stanford that dopomine was going and to elevate my status from category 2 to category 1B.

And that is when "The Moment in Time" began

For the next four days, I rested in the hospital in a beautiful room ( if you can believe it). I had a small sitting area overlooking a garden where I read each day. My main door into my room looked out to the outside where I could see the sun shining, trees and flowers. It was relaxing and I resorted to the fact I would be there for at least 30-60 days.
Tuesday, September 30, 2008

Update on Mom!!
Well its a nice Wednesday night, and just got off the phone with my mom. She at the hospital in her own room tonight. Doctors are saying shes doing very well, and could possibly be released to go home Thursday. (Home we mean hotel room). My mom will need to stay at a hotel room, close to the hospital for the next 4 to 6 weeks. This making sure once the heart goes into rejection they will be prepared. So my mom is doing great, and thanks to everyone for helping us out the last week. It has been the most incredible week of my life seeing my mom practically reborn and full of joy.We'll post an update again in a day or so once she talks to the doctors.

Love you mom,
Markie & Erin
Matthew and all the guys hanging out!!!
Spanish cathedral in Spain.
Seabourn Legend sitting in the harbour in the Spanish Isles. Can't wait to go back on the ship to Italy.
As usual Mark and his boyes fight over who is taller. I think Max won!!!
On vacation this year in June in Spain. Had a wonderful time!!!!!
Mark and I spent the weekend this April with Maxwell in Las Vegas. We had a wonderful weekend watching him play hockey. I enjoyed our time with Max since he lives so far away.




FIRST MOMENT IN TIME

How did the Moment in Time Start?
I have always been healthy strong and positive, and aware of my body. As you all know I love to exercise which included a personal trainer 2x a week with Tim Rogers at Break Through fitness; Jazzersize, and Pilate training with Carrie Stillman. Last year in March, I went on a beautiful cruise to the Caribbean with my dear friends Gary and Debbie Looney, Scott and Linda Ford, and Bob and Cindy Keyes and Mark and I. We had a beautiful time. I was able to do many activities with no stress to my body.Until that "Moment in Time" late May 2007 .I was camping and hiking at the KOA in Cloverdale one weekend. All the girls decided to go for a long hike, I did fine until I had to walk back up a big hill. I could not make it! Realizing something was wrong, my good friend Linda came back over and said to me "What is wrong with you?" You exercise so much and you can't climb this hill.Deep in the back of my mind, I thought what could be wrong? I was exercising and eating right, why? Why was I feeling this way.So as we all tend to do I let it go until this year. My company moved into a new building and I found again I could not climb the flight of stairs. This began to bother me. I called my family Doctor, Dr. Kevin Costello at Kaiser who immediately set up an EKG, ECHO and Stress Test. I did these tests in March. I received a call a few days later from Dr. Costello who informed me that I had Restrictive Cardio Myopathy or Congested Heart Failure...I was Shocked!Dr. Costello referred me to Cardiology for further test. I met with Dr. Warren, Cardiologist at Kaiser. Dr. Warren explained that restrictive cardio myopathy is caused by certain diseases. One disease is called Amyloidosis. (Please see information at the bottom of my Blog). Dr. Warren decided I needed to have a heart biopsy and a anagram done to determine what has caused the damage to my heart. Restrictive Cardio Myopathy causes the heart walls to stiffen and not pump enough blood to the organs and cause many symptoms which I have experienced in these last seven months. They are shortness of breath, water retention, fatigue, fullness when eating due to liver being enlarged and one symptom was the red purpura on my eyes also a form of "Raccoon eyes" .Dr. Warren referred me to the Santa Clara Heart Transplant Center to be evaluated by their director, Dr. Dana Wiesshaar.As Moments in Time go, I had a very special cruise to the Spanish Isles planned for June. Dr. Warren said it was not a problem to wait on getting the Heart Biopsy and anagram done until I returned in July.Mark and I spent a beautiful weekend in half in France and Spain. I did have some difficulties and tried not to think about what was happening to my body.We returned for my first Dr. appointment with Dr. Dana Weisshaar on July 8th. She took 4 1/2 hours explaining what was happening to my heart and what could cause it. The only way to be sure was the Heart Biopsy. On July 16th I had a heart biospy and angiogram. One week later I received the results which was that Amyloidosis was damaging my heart and that I would need a Heart Transplant.This is where the Moments in Time began to feel like a roller coaster ride with many ups and downs.When a patient is diagnosed with this very rare disease the Mayo Clinic in Rochester Minn handles the treatment. I was referred to the Mayo Clinic and put through a protocol of test to determine whether I was a transplant candidate. This took the next two and a half months, these test include simple blood test draws (31 in one day), bone marrow biopsy, rectum biopsy, chest x rays, upper GI scope, all to determine the progression of the disease.Bear in mind that the Mayo Clinic was the only hospital doing heart transplant on Amyloidosis patients. This they say can take up to one year to receive a new heart there at the Mayo Clinic. Dr. Dana Weisshaar told me I didn't have one year but only 6-9 months.So, the moment began that we needed to look at other options. As you have read the information about Amyloidosis was provided by Dr. Kevin Anderson. Kevin was diagnosed one week before me at the Mayo Clinic, they put him on the transplant list for a new heart. Dr. Brooke Edwards from the Mayo Clinic called the heart transplant team at Stanford University and told them to also put Kevin on their list. One big problem, Stanford has never done a heart transplant on an Amyloidosis patient until Kevin received his new shared heart on August 15, 2008. This moment in time opened the door for Stanford to look at me.Stanford is looking at Me!

Matthew


Matthew
Matthew is living in Orange County working as an administrative medical assistant for a othropedic doctor. He is currently enrolled and will graduate in December to become a radiology technician. Matt enjoys and has lots of friends like laura above who he has lived with for several years. Matt and his close friend Mark, Eian, Laura and baby puppy Cassie all live together now.Mark and I had a wonderful weekend a few months ago with them. I spent all weekend cooking Matt's favorite foods. I miss cooking for him. We talk everyday and I love him so much. I'm especially proud of the way he lives his life and that he has become a self-sufficient individual.

My Very First Moment in Time When it Began

First Moment
A moment of time. What is it? I never thought in my wildest dreams that I would worry about a "moment in time" Until now!As all my friends and family know I have been diagnosed with a rare bone marrow disease called Amyloidosis. It is a very rare disease that effects 1 in 8 million people and can be fatal. for more info about Amyliodosis please see my good friend Dr. Kevin Anderson's post at www.kevinandbarbie.com I have included on my blog.

Maxwell


Maxwell

Maxwell is playing ice hockey in Innisfil Canada for the Innisfil lakers. He lives with his second family Shane Hicke. Maxwell has been playing Tier and Junior Level hockey for many years. His teams have won many state and regional championships. Max will be 18 in March and is a senior in high schoool. I love him so much and miss having him near me. Mark and I understand this is for his future and the future does look very promising. I hold many thanks to the Hicke family for taking my young son at the age of 13 to live with them. They have loved and guided him through his young adult life. I will always be grateful!

Amyloidosis

Amyloidosis
The following information about the disease, Amyloidosis is provided by my good friendDr. Kevin Anderson from Lincoln CA who was diagnosed with the same disease 1 week before me in July 2008.I feel the explanation Kevin gives here will help you understand what the disease is about and the treatment the both of us will have to endure for example Chemo.AmyloidosisI have found a way to get Internet access in my room. I feel like I can step outside now, at least into the virtual world. I am feeling well. The medication, dopamine, has really improved my heart function. The loss of of that extra fluid has greatly improved my lungs and my abdominal organs. I actually feel quite normal. Many of the symptoms that concerned me as possibly secondary to amyloidosis were actually due to fluid retention.Amyloidosis is a strange disease. It begins in plasma cells. They originate in the bone marrow and circulate through the body. They sense foreign proteins, (such as viruses and bacteria) and produce specific antibodies to fight off infection. Amyloidosis begins when a renegade plasma cell begins producing a faulty antibody protein that does not break down. I guess you could call these cells 'crazy' as it is referred to as a plasma-cell dyscrasia. It is not a cancer because the abnormality is not in the 'immortality" of the cell but rather the cell product. These proteins don't form or fold correctly and pile up in the body. They then get stuck in tissues in various locations; in my case the heart muscle.This makes my heart muscle stiff and the heart then cannot relax well in between beats. The end result is that there is little time to fill up the heart ventricles so less blood is pumped per beat. What I feel is that any attempt to do any activity requiring greater blood flow is met with an immediate sensation of no energy. It feels like the battery died. Running, walking up stairs, bending over to pick something up all result in immediate fatigue and dizziness. The technical term for this is restrictive cardiomyopathy. My heart pumps about half of the volume that it should in one minute.Amyloid can go all over the body and effect the gut, liver, kidneys, salivary glands, lungs etc... I had an extensive work-up at the Mayo Clinic and it appears that while other organs are involved, the most significant is my heart. Normally amyloid patients are not treated with heart transplants because they are either too sick with multiple organ involvement or there is a concern that the new heart will fail if the amyloid continues unchecked. The Mayo Clinic is one of the few places willing to combine heart transplant with amyloidosis treatment such as a bone marrow transplant.However, because I am relatively healthy, and my other organs are not significantly involved, Stanford has agreed to accept me to their transplant list. I will be only the 2nd transplant at Stanford with amyloidodsis and the 1st with AL Amyloidosis.Once I have a new heart, then I can receive treatment for the amyloidosis. Since this is a rare presentation of a rare disease there is no absolute right protocol for me. As it stands now, I will either get chemotherapy with Melphalan, Steroids and Revlamid or a stem cell tranplant. They will follow a relatively new blood marker (Kappa light chain levels) to ascertain my clinical response.I thought this brief summary of my condition might be helpful to some of those following my progress.