December 9, 2010 - The Cold and The Bitchy

Ahem...that would be "The Bold and the Beautiful," of course. So I e-mailed Dr. New Hepatologist about the whole MELD thing. In fact, here is what I wrote:

There is something I don't quite understand about my MELD score of 22. When I met with you and your colleagues, I was told that I would likely be listed with a MELD of 25. At USU, my base MELD was 7 and my transplant surgeon requested exception points which brought me up to 22. I believe that you receive 3 additional points for every 3 months you spend on the list. I am guessing that you were thinking of listing me at 25 for these reasons.

My base MELD is now 13 or 14, which shows that my condition has worsened, yet you only asked for exception points to get me up to 22...not even 25. Every day I look in the mirror and I can literally see more and more jaundice and more obvious signs of the wasting that is taking place in my body, especially in the past 3 months. The fact that my base MELD is now 13 or 14 shows that I'm heading toward End Stage Liver Disease, and I'm not just at risk for rupturing an adenoma or developing malignant tumors as before.

My concern is not, "What MELD score is good enough to get me a liver sooner rather than later?", it's "What is my MELD score based on my actual circumstances?" I feel that having a MELD score that is exactly the same as my MELD in April does not reflect my current physical condition since my condition has worsened considerably since then.

Please let me know your thoughts.

So yesterday, I received the following response:

Mrs. Gras, you are the top AB on the liver list so it does not matter if you have 22 or 25 or more points. You are at the top of the list. You may list at other centers to increase your chance of receiving an offer for a liver as you would increase the pool of donors.

Wow! So who skipped her bedside manner class? And I thought it was cold OUTSIDE. Ha!

So something dawned on me earlier today. When I went to a transplant conference in June (for current and future patients, donors, families, etc.) I met a man named Brad. His appearance really shocked me. He was quite gaunt and he was rather yellow. It's just an awful thing to "see" how sick someone is. He was the person who inspired me to "come out" to everyone on FB about my medical woes and to call attention to organ and blood donation. I thought it was just awful that he was on the wait list for a whole year and had to go around looking and feeling that awful. Well how ironic that I have followed in his footsteps. At the time, I never thought my health would "tank" the way it has; I always had the risks of rupturing adenomas or having one become malignant, of course, but at that point in time, I NEVER thought I would resemble Brad in any way. Shows you what I knew, right?