Tuesday, August 11, 2009


There are days when I forget that I am ill. In that sense I am no longer ill, rather I have an illness. The tale-tale signs of illness such as my tremor, occasional hoarseness or red spots on my eyelids, since they don't really bother me, are simply part of who I am now; like having a mole on your cheek. The contrast between now and 6 weeks ago still amazes me. At that time everything went from bad to worse. Conversely, I now not only continue to improve both physically and emotionally, in addition we are finally winning in the battle against my amyloidosis.
Since the beginning I have always been fighting this on two fronts: to treat the damaged organs and to prevent further attack. The former was achieved in large part through my heart transplant one year ago. However, efforts at preventing further damage through control of the underlying amyloidosis have proved difficult. The first wave involved using Revlimid in October of last year. While this indeed lowered my light chains, simultaneously I had a severe and somewhat intransigent heart rejection. The theoretical ability of Revlimid to increase T-Cell response was thought to be the inciting factor. However, causality was never completely known. Revlimid was discontinued and I began Velcade in December 2008. The clinical response was minimal and the side-effects transformed me into a nauseous zombie. All of our hopes then rested on the definitive treatment, autologous stem-cell transplant, which had shown a 75% response in the Mayo Clinic series. I fell into the other 25%. Disappointed and unknowingly sick with cytomegalovirus (CMV), we went back to the beginning and started Revlimid again. (after my infection was diagnosed and treated) This time with Cytoxan to prevent rejection. Last week I got my kappa light chain level after the first cycle. It had dropped from 36.5 mg/dl to 18.5 mg/dl; a 50% decrease.
Barbie and I are quite happy with this result.
Yes, the pessimist might say it is too early to celebrate, but I find myself absent of any concern for the future because I am having so much fun today. I haven't felt so relaxed in years.
Work is great and I feel like I am really accomplishing something. I am a better doctor, a better department chief and, I hope, a better person. My only desire is for everyone to be happy.
I certainly am.



Patty Kuntzmann said...

Dear Kevin & Barbie -
Let me start by saying Happy Anniversary! Sorry for the lateness but we just returned from a trip to Reno this evening. I soooo wanted to take the time to stop by your house but home was calling...soon we need to get together :o)

I am so happy for you both! Kevin you look great & I so love the positive attitude thru this whole experience. You have inspired many people thru your posts.

Keep up the great work & I look forward to the next post!
Love to you both!

Kent Johnson said...

What a great outlook and a great message! Happy anniversary to you two!

Aunt Renie said...

Thank you, Jesus! We'll take what we can get.
It's like picking tomatoes in the market. In the summer, we are picky, and take the best we can get. In the winter, we are still picky, and the 'best we can get' adjusts to options available.
Suddenly 18.5 mg sounds wonderful!
love, Aunt Renie

Mindy said...

Happy heart anniversary! I say celebrate any good news. A 50% increase is outstanding. I hope you are loving San Diego. I can totally picture you at the beach and riding waves. A far cry from what you were doing one year ago. All I can say is....WOWWWWW!! I am glad you are feeling so normal.