Life with a Permanent Guest

Surviving a transplant is more than just science and technology. Your attitude has a profound effect on your recovery. Be sure to include the mental and emotional aspects of the healing process in your planning.

It can be pretty scary when you are lying in your hospital bed wondering if your body is going to reject that newly transplanted organ. The first few days or weeks can be touch-and-go, and your blood lab numbers can jump all over the place as you and your guest organ become acquainted. Anxiety can be your biggest enemy. If you are planning to have a transplant, I think it is really important to come to terms emotionally with the reality of having a piece of someone else's body permanently inside of your body. If you get started on this physical/mental/emotional/spiritual adjustment before your transplant, you will be better prepared for the emotional roller-coaster ride you may experience in the hospital.

I wish I had known what it was going to be like those first few days in the hospital. Then maybe I could have developed some better coping strategies before the transplant. But when your life is at stake, you do what you have to do, and you find a way! However, it doesn't need to be a fight. Things would have been much easier for me if I had not struggled so hard. It took me a couple of days to figure out that all I had to do was let go and trust that everything would be for the best. I sincerely hope that you can avoid the stress that I put myself and my wife through needlessly those first couple of days.

So let me tell you what worked for me, and maybe it will help to make the post-op adjustment easier for you. First of all, it is really important that you sleep. If you stay awake worrying every moment of every day and night, you'll drive yourself crazy and make yourself sick. If you need a sleeping pill, insist on it. Don't be afraid to sleep. Nobody is going to hurt you or neglect you while you sleep. Everybody is there to help you. Trust them.

There may be times when you become depressed. Don't try to convince yourself that you are going to die. Just remember that moods are cyclical -- give it a little time, and soon you will be back on top again. You may even laugh at yourself later. And no matter how hard it seems, never give up. What if you were adrift in the ocean, clinging to a piece of flotsam, and your arms were getting colder and more tired and you had no idea how long you would have to hang on? Well, as long as you hang on, you have a chance. Take responsibility for your recovery.

And by all means take advantage of your friends. Why do you think all those people are there? Trust your nurses. Trust your doctor. Trust your friends, your spouse, your children, your parents, your clergy. They all want you to live. Let them share their love and their strength with you. Tell them you care about them, too, and it will make them very happy. An on-line support group such as LIVERSUPPORT@AOL.COM can also be a source of great comfort.

I also encourage you to accept the fact that there are some things that are simply out of your hands. You may not realize it, but you don't have to try to be totally in control of everything all of the time. Whatever your religious preference happens to be, why not trust in God to show you the way? All you have to do is ask. Later you may wonder why you didn't think of that sooner. The doctrine of immanence means that God is within you, that you are a part of God and always have been. Maybe we look for solutions "out there somewhere" when all along the answers have been right in our own backyards, as they say.

Regarding the spiritual aspects of transplantation, let's not forget that the donor wants you to live. The donor is going to give you a second chance, and will be sending you light and love every moment of every day from somewhere outside of time as we perceive it here. Wherever they are then (call it Eternity, Heaven, the Universe, or whatever you like), there's a lot of good stuff they'll be sending your way. All you have to do is relax and be quiet and let it heal you. A form of prayer, if you will.

I think it is really, really important that you initially view the donor organ as a guest, and not as an intruder. You know, it may sound silly, but you could talk to the donor, and say "Thanks for the second chance, let's be friends." And why not say to the organ "make yourself at home, take whatever you need, I'm sure we'll get along just fine." It worked for me, and I was home after just six days in the hospital. So whatever it takes for you to view yourself as whole and new and alive is okay.

I guess what I'm trying to say is that having someone else's organ permanently transplanted into your body is a very intimate act. The physical adaptation is just one part of the story. You can't afford to ignore the emotional and mental and spiritual implications. Sooner or later you will have to deal with them. The healing isn't done as soon as the staples come out, you know? But I'm not saying you will need to start psycho-therapy, either. All you really need to do is explore your feelings with a close friend. Try it, you'll like it.

By the time you have your transplant, the question of organ rejection may be something from the dark ages of medicine, anyway. There is a new monoclonal antibody procedure being developed at the University of Western Ontario that trains the immune system to accept a specific foreign tissue. So immuno-suppressants and organ rejection may become a thing of the past. Something to look forward to!