Update

[Guest guest]

J. Matchinsky

4508 Carpenter Ave.

Des Moines, Iowa 50311

mmatchinsky@...

December 27, 2008

Dear family and friends;

As

we approach the end of another year, it seems a good time for another update,

blind-copied to many. I don’t remember who I told what, so if some

of this is redundant, please understand.

Chris

is still working as a pediatric pulmonary nurse (say that three times

real fast) and is also the Coordinator of Methodist Medical Center’s

Cystic Fibrosis clinic. Of course, she doesn’t get the time and resources

she needs to do both jobs, but she works hard to stay on top of her patients

problems. I feel terrible that I’m not able to help more around the

house.

My

liver disease is getting worse. Currently, I’m undergoing my third

round of treatment for the Hep C. This one consists of daily injections

of interferon as well as high doses of an anti-viral medication. Because

this medication kills my hemoglobin, I also take two injections a week of

Procrit. This treatment will last 72 weeks and end in August.

I’ve

been diagnosed with cirrhosis and have the beginnings of jaundice. I have

also developed hepatic encephalopathy. This is caused by the beginning of

my liver failing; it can’t clean toxins from my system as it

should. This is causing permanent neurological damage and affects my

sense of balance, my memory, speech and my ability to focus.

Funny,

but I can write/type but now I stutter and have word finding problems when I

talk. As my sense of balance is affected, I’m using a cane to walk

to help steady my gait. I suddenly go blank and forget what I’m

doing, but then again, I’m not getting any younger.

There

is good news as well. I have lost about 125 pounds since the first of

this year. The doctor had told me that a transplant was inevitable and

that at that weight, I wouldn’t be considered a candidate for the

transplant. This motivated me. Since I’ve lost the weight my

chances of sustaining a viral response if much improved. And if I am able

to achieve Sustained Viral Response (SVR) my chances of needing a transplant go

down to about 20%. I’ve always been a quick responder; just

can’t maintain the response. That’s why we’re going 72

weeks.

Last

September I was in the hospital for five days. I was scared and called

911. The doctor thinks it was an acute attack of encephalopathy, brought

on by dehydration. They kept me on IV fluids the entire time and gave me

two units of whole blood.

That’s

about it; that’s my life at this time. Currently I’m waiting

for disability. They turned me down, saying I had my arms and legs and so

could not be considered disabled. My doctors just shook their

heads. I have an attorney and we’ve appealed. I’ve also

contacted my senators and congressman, asking for help. I can’t

work; the memory and speech problems alone would make it too difficult, let

alone the lack of energy.

Chris

has been tremendously supportive. I actually am a very lucky man.

I’m also grateful that all of you are part of my extended support

system. Thank you.

J Matchinsky

J Matchinsky