Re: UNOS-Letter -- TO BARB

[Guest guest]

Barb--

Here is my letter. Let me know if there is still time to mail it to you.

Laurie

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Laurie Coughennower

2085 NE 45th Court

Des Moines, IA 50317

September 17, 2000

TO: UNOS

RE: Response to Guidelines and Point System

Primary Sclerosing Cholangitis (PSC) can be a very long-standing disease before it comes to the point of reaching transplant stage according to the point system. The way the present system (and probably the new system) reads, a person with PSC does not get any "points" for the duration of time he/she has had the disease, which in my opinion, should be reviewed. My hope is that your committee will take into account the fact that longstanding liver disease (especially after cirrhosis has set in) is a forerunner to cancer and points should be allowed for longstanding liver disease when it comes time to consider a patient ready for transplant. I would much rather have undergone this surgery before cancer had a chance to set in. The whole point in a transplant is to enable the recipient to live longer as normal as possible. If a patient is not allowed to have the transplant before the possibility of cancer sets in, what has been accomplished by the transplant??

I was diagnosed with PSC officially in 1987, though my drs. told me that I probably had it when I was diagnosed with pericholangitis in the very early 1980s. I have had elevated liver function tests ever since then. I was diagnosed with Ulcerative Colitis (UC) in 1978. In 1987 after 32 biopsies were taken and dysplasia found in every one, my colon was removed and replaced with a J pouch. As the years rolled on, I expressed my concern every visit I had with my doctors both at the Mayo Clinic and at the University of Nebraska Medical Center that I was very scared that the same thing would happen to my liver--that dysplasia would set in and I was afraid I would be facing cancer unless a transplant was given sooner than later. Their response was that they couldn't do anything about that--that longstanding PSC was not a factor when determining whether a person was ready to be listed..

Unfortunately, my fear became truth and AFTER HAVING UNDERGONE TRANSPLANT SURGERY, CANCER WAS FOUND IN MY OLD LIVER AND IN THE LYMPH NODES OUTSIDE THE LIVER. Now I am taking anti-rejection drugs and neither chemo nor radiation are options. In fact, as my oncologist stated, "the anti rejec. drugs give the cancer one leg up since I am now immune compromised." Having gone through transplant surgery and now facing cancer, too, when it could have been avoided by an earlier transplant leaves me discouraged and distraught. If I can help others to avoid this, then perhaps it was worth it in the long run. Thank you for your time and attention to this matter.

Sincerely,

Laurie Coughennower

UNOS contact - Tim

Tim--

My husband defragged our computer (hope that's the right terminology) and the bottom line is I no longer have that e-mail address to send my comments re: the upcoming UNOS public forum/comments, changes, etc.. Which also means I lost the draft I had done & was mulling over before sending.

At any rate, could you please provide that again? Guess I'll have to use paper to write it on this time.

Tks.

Laurie, TX 5/5/00