Post Transplant Challenges

My father had a transplant 8 months ago and has had a variety of complications - infection, gout then kidney failure, b;ood clots in his lungs, low blood pressure, diabetes, and probably a bunch of other stuff he hasn't shared with me - oh, his taste buds have actually fallen off sections of his tongue! It doesn't seem like the new liver is functioning any better than his natural liver. I'm so confused by the medical goobly-goop and let my step-mother and step-sister (a nurse) deal with him and the hard core day to day care.

We live nearby but he has always shielded me from his real struggles. I've had severe depression and have just started back to work after 3 years being home bound.

I call him several times a week. My step mother has asked that I focus on what is happening with my day to day life and what my kids are doing so he has something to think about beside all the medical stuff. He still is able to get up and dressed and walk around outside on occasion - without oxygen even, but he has terrible diarrhea and constantly pees.

When I go to see him, he cries and is despondent about the shape of his body, pain, energy level, the side effects of the drugs, and his general lack of interest in life. I saw him this weekend for the first time in three months. He said it took him several hours to get up and dressed. He showed me his stomach it was positively, well, words don't describe, maybe terrifying.... He's gotta be in pain being that bloated.

He never says anything more specific than "the numbers look good". He's doing parasentis (sp) TWICE A WEEK and has since the transplant. The doctor told him today that this is as good as we can expect it to get. I worry that he won't lucid for much longer and that is situation is dire.

I don't know what to do - push to be more involved with his day to day care as much as I can emotionally tolerate, or continue to be a life line to normal life. Any advice or insight would be so very much appreciated.

Hello Garden and welcome to HealingWell. I am sorry that your dad is having so many issues after transplant. Will your stepsister tell you anything? I'm sure that David and RC will jump on when they can to assist you.

Only you know how much you can take......but I do know that grandkids usually have a way of making a sick grandparent feel better. They did for my husband. Maybe if you took them to see him for short periods of time a few days a week. As hard as it is to see your dad ill, you need to be strong, for you, for him and for your kids........Have you heard the old saying.......Fake it to you make it? Sometimes a person can surprise themselves .......didn't think they were strong enough...and found out that they were........I think all of us caregivers and former caregivers can testify to that. Hang in there sweetie.

Thoughts and prayers........

Hi GV,
I'm sorry to hear of your fathers problems. Not knowing what his problems were, previous to the transplant, it's hard to know why or how this is happening. Many people receiving a transplant are so close to the end, that the trauma of such a major surgery takes a while to recover from. Was the liver from a deceased donor, or live one. Some livers are in better shape than others and when a patient has hours to live, it's not uncommon for surgeons to use a marginal organ rather than allow the patient to die. Transplant patients have a 10% chance of death in the first year, 10% have no problems and 80% have minor to major problems. You mention that he's having paracentisis and needs oxygen. That doesn't bode well. It sounds as if his new liver isn't working as it should. How old is your father and why did he need a transplant? You need to find out if his new liver is being rejected. You mentioned that you don't understand medical terms. Ask if his liver is failing and why it's happening and what might be done to alleviate his suffering. Straight answers to those simple questions are what you need right now. Be well.

My husband, Ron, received a transplant February 3, 2011.  His first two weeks were horrific - besides his physical problems due to surgery - he had adverse reactions to his anti-rejection drugs (Prograf and Cyclosporine)......because of the medication he acted child like, throwing fits, telling me he didn't believe they put in a new liver - and if they did - and he was feeling so badly - he wanted them to take it out.  It was a difficult two weeks - I couldn't leave him alone. 

Once the physcians agreed the problems were because of his medication - they changed his anti-rejection drugs to Rapamune.......oh my goodness.....how different he is - a new man.

Have you given the thought some of his problems could be due to adverse reactions to medications.  I understand he has some medical conditions - but if the drugs aren't right - the adverse reactions can make it so much worse.

Please keep us updated!  I'm sorry you are going through this.

Pam (RcMoonpie)