Biopsy Results and Stem Cell Transplant

Monday on our way to Stanford, I got a call from Stanford Bone Marrow Transplant Team saying Doctor Sally Aeria had to cancel because she had "pink eye". A very contagious eye infection that I do not need to get. So I rescheduled the appointment for Friday, March 6th.

Mark and I then went to the Fairmont Hotel in San Jose to spend the night before biopsy the next day. We had a wonderful lunch and dinner in the hotel and I felt so relaxed. Stress is so high for me the night before biopsy. I start to think about rejection and especially this time because I was sick. So I got up early Tuesday and we went to biopsy by 7:00AM. I was second in line, Tippi was first. She took a little longer because they did a right heart cath and biopsy. I finally got in and it seem to go ok until I went to the clinic and all of a sudden my juggler view opened up and started to bleed. The juggler vein is what they use to do the biopsy. So it took over an hour before it stop. Dr. Dana finally came in and was going to stitch it up but decided to use a form of seaweed to stop the bleeding. It worked! I was so afraid to take the bandage off this morning in the shower. But it was ok. Dr. Dana thinks they might have hit a blood vessel and that is what started to bleed. My biggest fear has always been to wake up in the middle of the night with my juggler vein bleeding and I bleed to death. WOW that was scary!

The GREAT NEWS is that my biopsy results were NER - NO EVIDENCE of REJECTION! I'm so happy. My beautiful shared heart is so perfect. Evelyn, Jazmin's Mom has told me just how strong Jazmin was. I'm sure my angel is doing whatever it takes to protect me and my shared heart. I was so afraid of rejection because of being so sick this month. I am so blessed!
My labs were good except cholesterol came back high and they increase my dosage of Privcol. Next month Dr. Dana will do biopsy for Amyloid in my shared heart. Please say prayers that there is no Amyloid in my shared heart.

After biopsy, we made the trip to Stanford to see Dr. Schrier Amyloidosis specialist. I was afraid he would just say to schedule the stem cell transplant ASAP because my numbers jumped up so high. He say he is not concerned with the numbers but only one number 0 ZERO. He said these numbers go up and down and are not consistent until the factory is stop. Then you will see the numbers going consistently down but only worry about zero. Now how do we get to zero. Chemo treatments and stem cell transplant. Stem cell transplant does not guarantee that I will get to zero. After stem cell transplant I will still have to do chemo, so why rush now? He agreed and we said we would wait until April or May to make the decision to schedule the stem cell transplant. That means I will be on Decadron and Velcade for almost six months. If it has not changed by then or most importantly my new shared heart has evidence of Amyloid, that's it I will do the stem cell immediately. So for now please pray that the chemo treatments will work and we can shut down the factory and give me some time.

I realize how blessed and yes LUCKY I am. My beautiful shared heart came so quickly and I was able to recover and get a second chance at life. I thank my donor Mom, Evelyn for making the ultimate decision to donate her daughter's heart, so I had a second chance at life. I am so blessed to have her in my life.

So for the next few months I plan to go out and do the things I have put off. First, my Italian speaking lessons have been put on the back burner. No more. I have a deep passion to learn to speak and I want to fulfil that dream. If I have to find a tutor I will, but it's something I passionately want to do. I also have places to go and people to see (sounds funny, but true). I want to go to Yosemite, Carmel and Monterey, Tahoe and when the weather is nice I want to spend at least a week at my trailer in Kelseyville. Just relaxing, reading and recovering. So now that I know I have to at least May or June for the stem cell transplant I will be planning my trips. First one I have already mentioned is to the Montage at Beverly Hills. I will be going the weekend of March 20th. Dr. Dana said as long as my heart biopsy on March 17th goes good, I can go that weekend. That will be so much fun. Kathy Conley and her husband will be coming up to have dinner at the hotel restaurant Muse on Saturday night. I haven't seen Kathy since December and I miss her so much. She calls me every morning on her way to work and we get to talk. She is such a support for me since she is a breast cancer survivor. I can really talk over things with her and she helps me understand.

Well I'm sure you noticed my rambling and are wondering what in the heck is she talking about. I took Decadron today and one of the side effects is I'm wired tonight. Just got off the phone talking to Gary and Debbie and all I did was talk, talk and talk. I don't even know if they got a word in. Sorry Gary and Debbie! I will try and take my sleeping pill and hopefully I will sleep but normally it keeps me up all night. So we will see what happens tonight.

It is worth mentioning one more time. Last March I was looking forward to a beautiful cruise to the Spanish Isles in June. That month I was diagnosed with restrictive cardio myopathy. My cardiologist said I would be scheduled for further tests to rule out Amyloidosis. I went on my cruise in June and when I returned in July I was diagnosed with congested heart failure due to Amyloidosis. My life depended on receiving a heart transplant. Just three shorts months and my life changed! Can this happen to YOU! Think about what you do and say each day because you never know how much time you have with your love ones. Life is short and I realize my is. I plan to make the most and best of it! How about you!

Love,
Debbie