Do you ever want to SCREAM??????
I know we do. For those that have never had the opportunity to encounter a transplant situation, count your blessings. It has to be one of the scariest, most frustrating, infuriating, agonizing, helpless waiting you will ever encounter.
We had a follow up appointment yesterday with the hepatologist. Hoping for some insight into new symptoms, waiting time, MELD reconfiguration blah blah blah. No real explanation for the feet swelling, no real explanation for the "burning sensation" his skin gets when he sweats, no explanation for the increased liver pains and back pains. Instead we get sent home with a pat on the back, your MELD is still 19, everything looks good we will see you in 3 months. Oh my the way your MRCP last month was inconclusive, but we think we want to go ahead and do an ERCP (obviously there is no way his current doctor could be correct in the fact that and ERCP is not an option for him).
I don't know about you, but it is really frustrating when all you feel like is a statistic, a number. Which essentially you are when waiting for a transplant. We worked, prayed so hard that he would make it to be listed, we finally made it then, it seems that every time we visit the hep doctors we get sucker punched, and any hopes that he will actually be transplanted are dashed. We were told yesterday that they will prolong transplantation as long as possible, especially since his liver was still functioning. They do offer exception points, but again, he isn't a candidate because his MELD is only 19, and his protein production is within an acceptable range. His bili is down 14.2, but they do show him as having a vitamin A & E deficiency, so they prescribed some vitamins for him.
The thing with being listed, you HAVE to do what ever the Transplant Hospital/team wants you to do. They wanted to schedule the ERCP yesterday, but I told them I would rather wait until they spoke with his doctor since he knew Big Bird's case and has been caring for him for the last decade. This hospital was suppose to be highly recommended, but I will tell you their hep doctors haven't been the greatest doctors I have ever encountered. They are suppose to be the "liver specialist" and yet, whenever we meet with them, we always feel hopeless, and that he will truly be lucky to get a transplant. We really leave there feeling like there is no hope, that transplant is a possibility but to not get our hopes up. We leave there feeling like a statistic, a number. A means of money making, because those doctors certainly lack some sort of human connection, a means of reassuring a patient and their loved ones that all is not lost. This particular doctor yesterday went as far as to tell us that transplant was not a "cure" for PSC, but rather a short reprieve, that more than likely in about 10 years he would likely experience recurrence and again be a transplant candidate. How about that loveliness, we haven't even got through this round, and we feel like we are being told to prepare for it again in 10 years.
After visits like this, you wonder (aside from the fact that he physically just can't handle it) why isn't he just going out and enjoying life to the fullest? Never mind his doctor has basically banned him from open water, no lakes, no rivers, no oceans-too many uncontrolled germs. But as far as the transplant hospital is concerned he is "fine". I beg to differ, I see him almost fall from dizzy spells. I see him want to crawl up in a fetal position almost in tears cause he is scared to death of dying, I see the fear in his eyes when his temp crawls up to a fever, then relief, cause it doesn't quite hit 100. I see the fear in his eyes every time he grasps his side, because the liver pains and back pains have increased. This is what I live with everyday, and then have to be sucker punched by a doctor who doesn't have the compassion to listen to a patient when he tells him, I don't care what my MELD is, I know my body and something isn't right, then be told OK, we will see you in 3 months.
This is our world, our frustrations, for whatever reason, the path we were set on. I don't understand it, but I have to believe Heavenly Father has put us on this path for a reason.....
This is Dustin and I on December 21, the day he was getting released from the hospital.
This was Dustin yesterday morning. It is amazing, truly amazing to watch how his color has come back. How his skin has been completely changed but this amazing new liver. We really need to name his new liver-it deserves a name (I have mentioned this before and Big Bird really wants to name it Grapefruit-since that is a big no no to transplant patients)
