I received my new liver on the evening of June 7, 2017.
With a lowish meld, I had colangitis in late March, again in late April along with sepsis, and hospitalized again in early May with abdominal pain. My doc was able to get exception points approved, making my meld score a 22. With a blood type of B +, this put me at the top of the list. I have read that psc patient’s with a blood type of B+ tend to get transplanted earlier, and that was the case with me. In this I know that I was lucky. The increased exception points were due to expire in early August, and had I not received a transplant during that window, back down to a low meld and live with psc would have continued.
At noon on June 6, I received a call at work from Piedmont Hospital that they may have a liver for me. I was down there by 1:00 after making several phone calls to my wife, parents, brother and sister in law.
Was admitted and ended up in a room on the transplant floor by 2:00. This quickly became a game of hurry up and wait; the liver was not even at the hospital yet. So I was kept overnight and by Wednesday morning, I was a bit annoyed, but a nurse pointed out that the good news is that I had not been sent home; that shut me up.
By 3:00 I was in the preop prep area. By 5:30 I was wheeled to surgery-the liver was a go.
I spent about 1 1/2 days in ICU, and walked each day.
By that Friday afternoon, I was up on the Transplant Floor again. Through that following Wednesday when I was discharged. I walked every day. I had to get used to the finger sticks used to track my blood sugar, as our blood sugar tends to be high at first-they worry about diabetes setting in. Luckily, I did not have to track my blood sugar after discharge.
It seemed that I could not sleep much, either before or after discharge as my heart rate was very high, and I otherwise could not get comfortable. This has been ongoing through the date I posted this-July 5, 2017. I can sleep for maybe 1-2 hours when I first go to sleep, followed by several hours of tossing and turning, followed by another 1-2 hours of sleep.
I have had numerous days when I have a late morning nap, early afternoon nap followed by a late afternoon nap.
On the whole, my recovery has been much better than I anticipated, with no complications other than the sleep issue mentioned earlier. In this I know I am very lucky. I have read that the healthier you are pre-transplant, the better the recovery is post-transplant; this is true in my case.
The dietician is not happy with my weight. I have not gained much weight, if anything I have lost some. But I am trying to eat protein-rich food and just do not have much appetite. The appetite should return some time soon; I was told about 4 weeks from transplant.
Sorting out and taking all the medications has been relatively straightforward, again with no complications like nausea or upchucking.
I have been walking each day, and am up to a long walk just under 2 miles, and this will be increased starting tomorrow.
So all in all, I am alive and vertical. Having learned the hard way that any day you’re not in a hospital is a damn good day, I know that many things have gone right for me to get where I am today, and want to give encouragement to those who fight psc, are about to receive a transplant or have recently received one-there is hope.