Friday, October 17, 2008


It has been two weeks since I have started the chemotherapy for the Amyloidodsis. The Revlimid, which I take daily, does seem to have noticeable side effects. The high dose steroid does cause the usual insomnia and weird taste in food, but it also gives me intermittent hiccups. Of note, however, my heart biopsy on Tuesday did show moderate rejection (2R, on a scale of 0 through 3R)A large percentage of patients will have this in the 1st six months. This is also treated with high dose steroids, so in addition to the Decadron I take weekly for the Amyloidosis, I am now on 100 mg of Prednisone daily, but with a rapid taper. They also stopped my Cyclosporine because even a supra-therapeutic dose was clearly not protecting me. I am now on Prograf, a different anti-rejection drug. I also got a call this evening that my Cellcept levels (another anti-rejection drug) were too high, so as of this evening, I drop the dose of that drug as well. There have been lots of changes this week.
I did have symptoms associated with the rejection, low blood pressure, a fast heart rate and severe weakness, often when I would stand up I would get very light-headed. That has improved in the last two days since I have been on the high-dose steroids.

More importantly, I have recently discovered a really good pizza place here in Rocklin, Gaetano's New York Style Pizza. I went there once back in March of this year, but later that night I had a mini-stroke and couldn't see out of the right side of my visual fields, I ended up in the hospital for two days. Since the heart transplant, and now on an aspirin a day, I felt it was safe to return. It is actually fairly authentic New york style pizza and probably better than a lot of pizza you actually get in Manhattan. You have to enjoy the simple pleasures, whatever the risk.

We are so excited about the upcoming wedding next week. Rebecca and Corey are so in love. It will be a wonderful day.



Anonymous said...

Hi Kevin and Barbie, can't wait to see you tomorrow at clinic. I pray we both have good results this week. I know we will! I'm always so happy to read what you write because it helps me understand and realize what I will be going through soon once I start chemo. How lucky I am to have a special bond with you! I wish it was under different circumstances and not Amyloidosis. I just want you to know how much I am grateful to have you and Barbie in my life. I am feeling great. I do not have any noticeable side effects from any of the drugs especially this week when I went on 100mg of presindone and the increase in gengaff. I'm walking around the hotel complex 4 times in about 10-15 minutes. How far is that? Wish you and your family a blessed wedding this weekend. See you tomorrow. love, debbie douglas

2ndHeartBeat said...


Hang in there my good man. You are going through a lot, but you've got some good Dr's and a great family backing you up.

I wish you well.