Pre Transplant Workup

Yesterday I spent the day at the Outpt bone marrow transplant clinic at LDS hospital.

I met Kelli Groomer, PA. She was wonderful!! I hope I get to see her again.
She reviewed my history and physical. As with all of the other physicians she was wowed by my heart murmur. It was explained to me by my cardiologist Dr. Whisenant that my murmur is so pronounced because my left ventricle wall has become thicker due to the protein deposits. The force to push out the blood is increased. There is mild aortic stenosis so these actions plus the mild regurgitation that is present in a couple of valves makes for a dramatic sounding heart murmur.
I was told that my heart was strong making me a candidate for bone marrow transplant.

I had a bunch of blood tests done.About 25 tubes worth.

I had pulmonary function tests, which I excelled in. That is so good to know since I have had pneumonia mulitiple times over the years. She was quite that lady administrating the test. She was a real coach trying to get the very best out of you.

I had another bone marrow transplant. I had thought about having conscious sedation this time and decided against it since it required fasting. I have come to really enjoy eating, and I didn't want to get dehyrated. I am still trying to protect those poor little kidneys.
I opted to listen to some Creedence Clearwater Rival music on my little Ipod Shuffle that Jeff helped me with. Kelli,the PA was so very gentle and I feel that the whole process, which isn't fun, wasn't near as bad as my first. She put direct pressure on the site after for about 10 min and then laid me on ice for another 30 minutes. I think the huge bruising that occurred with the last one is what made it so extremely painful.

I found that my kidney function isn't as good as it was even a week ago. It is good I am heading into treatment next week. I ask that specific prayers in behalf of my kidneys are given. I feel strong in the rest of my body. That's a humorous statement. I actually told the doctor yesterday the one symptom that has persisted since Jan is the extreme weakness and fatigue....and now I am saying I am strong. Hope you get the drift.

I am continued to be amazed and humbled by the support Dave and I are receiving. I can't believe how some days my emotions are so drained that on top of feeling so weak and fatigue and having pain....it's more than I can do to get out of bed. Then that cheerful call comes, or a note in the mail and I can gather enough strength and energy to do something.

I listened to several CD's from the Amyloidosis Foundation. There were teleconferences where patiences were able to call in and ask the experts questions. They were very informative. I am determined to learn as much as I can about Amyloidosis and then be an active part in forming a support group; and doing everything I can to help educate physicians about it. My main symptoms were weight loss, severe weakness and fatigue. There are so many insignificant things which these symptoms can represent but then there is this rare disease that is also can indicate. I had such wonderful physicians trying to figure me out. I just never fit the whole picture. I never fit the flow chart. Thank goodness I had a physician who "thought outside the box" and continued looking at me.

A week from today I start my Neupegen injections in preparation for harvesting my T cells and transplant.
I have one boxing glove on but am struggling to get the other one on. I sway from determined to scared to a variety of feelings. I just need that other glove on...