Devastating hit

Hi everyone ....

Well ... yesterday at lunch time I had spoken with Joan, one of the transplant nurses. In our conversation, she stated that Debbie was still waiting on one test to return from PA, and that she didn't see any reason I couldn't start my logs to begin the final heave-ho. Well ... I was all pumped at that point, the final stretch, everything that had been done with the exception of this one test, had come back a go, and the team seemed very optimistic for my acceptance into the trial and to work with me as well. Then ... 4:15pm comes, I am in a meeting with my boss, Tina, and my cell phone begins to ring. I look at the number and immediately recognize it as Debbie's from UCSF. I told Tina, I really needed to take this call, she waits with me for a minute, then leaves the room as I believe, in hind sight, she heard my questionable tone change. Debbie stated that my PRA (Panel Reactive Antigen) had come back high, over the NIH limit. As she continued talking, I guess I was numb, as I missed some of what she said, and only upon my asking, "does this mean I am not eligible?" She responded that the cut off for this antigen regarding the trial is 50%, mine came back at 63%tile!! What did this mean? Where does this leave me? What am I to do, if all my doctors are telling me this is my only option right now, and I would be a fool not to take this chance .... what am I to do???

Well ... upon further discussion it is explained to me. PRA which is an antibody for which my only way of obtaining such a high level would have been from multiple pregnancy and miscarriage, as I have never had a blood transfusion, and this would have been my first and only transplant. The "anti-human" antibody ... Hillary explained in perfect terms to me upon my arrival home .... your body didn't want those little monsters in you, so it attacked, developing the antibody. She then proclaimed to me that she was "THE MIRACLE CHILD AHHHHHHHHHHH!!!" and I laughed through my tears. I was devastated last night, numb, exhausted from all the emotional stress of not only the transplant process, but all the family crap that has gone on in recent couple of years, since losing my mother.

What it means at this point. I was told, that although the NIH (National Institute of Health) makes the protocol guidelines and cutoff scores, this does not make me ineligible for transplant. ONLY the trial. The results of this trial may be public sooner than anyone thinks. Now, for the other depressing fact. It would appear that due to this 63% antigen factor, I will most likely wait longer for a suitable match with my donor, as well as a potential "desensitizing" treatment known as "plasmapheresis" or a treatment of cleansing my blood of the antibodies. This is something I still need to do some reading on, as it is all biology type stuff.

In a nut shell .... I am very down. This is something I guess I would rather have found out now, given the fact my health is failing, in spite of the results, I still have good kidney function, but I am uncontrollable and it gets worse with each passing week. I too, am sick, with no doubt, a strep infection, living with Hillary who had it last week, and all the stress, emotional and physical that has gone on in just the last two weeks, is catching up with me. I had to come home a couple of hours early today from work, as I couldn't swallow, couldn't keep my eyes open, hurt all over, and am just down. I would like nothing more than to curl up and be left alone.... for like 3-4 days until I could gather my strength again and come out fighting.

Suggestions were made to appeal to the NIH, but Hillary had the perfect scenario for that one. She stated that the NIH is government driven, thus our illustrious FDA. When in trials, they want the best of the best, the people that are most likely to prevail as "success" stories, not the possible rejects such as myself. (Also a risk of the elevated PRA - rejection), therefore, they make the cutoff at that 50% mark, the good 50 stay, the bad 50 go. In spite of this thought process, it is not uncommon 30-40% of all transplant patients, not just for the islets, are likely to have an elevated PRA. So ... that gives me continued hope.

I just need some time to rejuvenate my energy, my strength, my mindset. I feel like I have been beaten up and thrown out with the trash. I need to refocus and I have already started on that. I was told by Debbie, that wonderful little woman who has worked with me for the past 8 months in this process, very upset about having to make the call to me. Telling me how "excited everyone on the floor was to be working with someone like me who was driven, and 'not a whiner' ... that made me laugh!! The doctors and nurses alike all were just so optimistic that I would be a "go" and then this .... have offered up to answer any of my questions and help offer another alternative. I can't help but think that perhaps Doc Peter has eyes for an entire pancreas transplant ... lol ... I know ... I still have to wait for the most difficult of donor matches. But ... I see this as all too possible if I undergo the treatments to help cleanse my system of this antibody ... Hillary asked me this evening if that was something I was considering ... and I responded Yes ... even if it fails, I have the opportunity to gain more controllable blood sugars again, without the drastic, dangerous drops that take me down so hard I lose whole days, and often times a weekend, just coming back from one of these bad episodes. I am tired, and I am not sure how much longer I can keep up this rate of enthusiasm. I want to continue life, but I don't want to do it restricted to my home, or unable to work, and carry on with my simple pleasures of human connections.

So ... fund raising will continue for a while .... I hope to have some input from my new friends, Doc Andy, Doc Peter, (can't remember the names of the other two doctors, but they too, very personable), and of course, Debbie and Joan, who I could feel their disappointment in my being denied into the trial, would keep me in the front of the "what about" list, and hopefully, together, we will come up with a fix for me .... at this point, I would settle for just a patch!!!

Please keep the faith in my pursuit of accomplishing better health in living with this dreaded disease. I have seen the science come a long way in 37 years, as the endocrinologist in SF said, "you must remember the old days" .... LOL .... an appreciation for my long trip perhaps?? .... and the knowledge I have gained thus far. I look to learn even more, but have to admit, this biological breakdown gets mighty confusing the more in depth it gets.

Be well, please remain faithful on my behalf, as well as those kids to come after me!!

Peace and Love
(and a hug tonight too!!... as I could sure use one)
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