At first, I did not want a transplant because someone had to die for me to get one. I decided the death was going to take place anyway, why not save my life? I was acceptant of this for 3 years while on the cadaver transplant list.
Then, my surgeon said I was in the end stage oF PSC and would not live long enough to get a cadaver liver. The only option was a live donor, and once again, I did not want someone to risk their life for me. A friend insisted to be tested. He was not a match, but I learned you cannot stop someone who is motivated to be a donor and wants to save life, even if there is a risk to themselves. My struggle got worse. I objected to my daughter (a mother of an infant) when she said she was going to be tested. It was a tearful moment. How could she live with herself if I died and she knew she could save me? I had to consider that. I learned again, as much as you do not want someone to risk their life, you must accept it in order for them to feel they did all they could to save you. She was tested, and was not a match.
Her Facebook story about me caused a childhood friend to contact her and offer to be a donor. She was a perfect match, and the surgeries took place in about five weeks.
You may have a fear of surgery, or somebody told you what they went through to recover. Wash those out of your mind. Your experience is all that matters. Transplant surgery is amazingly advanced. I am glad to say you recover, and you get a little better each day. I looked in a mirror the day after the surgery and my skin color was normal. I looked healthy again. I was walking the second day. I won’t tell you it was easy, but you can do it. All it takes is the desire.
I was 65 when I got my new liver. I’m 68 now, which is very close to 69. You are not too old. I have seen many transplant recipients older than me when the got them. I followed the biblical counsel when the passage said God offered man the choices of light or darkness, blessing or cursing, life or death. “Therefore, choose life.” That was a command I felt I had to follow. It would be wrong to choose anything but life. It’s not a simple decision to make on your own. You have to consider you spouse, family and all those who see it worth a little risk of their life so that you can live and continue to be with them. You may think your life is just over, but others aren’t ready to turn loose of you, just yet. Can you think of a greater love than those who are willing to risk their lives to save you? That’s powerful and must be considered.
Take all this into consideration before you decide. I was in that final stage, sleeping all the time. You have no strength left in you. It’s a dark place, and you can think its all over. I understand. Choose life, my friend. Choose life!
Paul, I like your philosophy-choose life.
I have learned that all I need to be happy on some days is to be alive, vertical and awake.
I have also learned that any day you're not in a hospital is a damn good day. That has helped put a lot of $%#$%^@ in its proper perspective.
Thanks for all the responses, and for sharing your techniques and experiences.
mah437, your words are very wise. And, if you are new to this disease (be it UC, PSC or both) take this advice and try to emulate it. You will be happier and healthier much more than if you fall victim to the disease and give in. Mah437, I know there are days that are much more difficult than others to do what you say you do. The struggle makes them much more rewarding. You know you beat the disease at its fiercest. Great comments. We should all renew ourselves with them.
mah437 said:
I have been dealing with chronic health issues for the last 25 years. I remember about 17 years ago, My GI Dr. said that I most likely have two choices, Take the prednisone and end up not being able to walk in ten years, or suffer from one of the illnesses. Well neither one has taken me out yet. I like to think that I am content with the final outcome someday, I guess that I am not afraid to die to put it bluntly. A bunch of years ago I decided that I am not going to let my health slow me down, I am going to go about my business and push through. Yesterday I could hardly stay awake at work, I ended up sleeping for two hours when I did get home. I have realized that I am not going to try and really advance my job or career, maybe just stay current and keep going. There have been times when I could hardly walk, but I would go to work. At times I found it a bit funny that I wasn't even able to open a door, unless it had one of those handles instead of a door knob. But since then medication has brought my joints back to life and against my Dr. advice I have since run a few half marathons and various other races. I am going to just keep doing what I want till I can't anymore.
I deal with my health issues as they arise, but in the back of my mind, who knows how much time I really have. I don't stress out at work or at home, it's not worth it. I have really been wanting to do something that is more fulfilling in my like, and try and get out of the rat race. I guess it may be just something that I am realizing when I really don't know if my conditions are going to take me out sooner or later.
So every day I try to enjoy the things around me, not get worked up over little things, just slow down and not take anything for granted.
We can at least all be thankful for the advances in medicine and the people willing to provide the care. I sometimes think that If I had lived a hundred years ago that there is no way I would have ever made it out of my twenties. (and there are lots of people that didn't)
SO as for your two options, Take care of yourself now, Live life to the fullest, don't let the little things bother you and deal with the issues as they hit you. I am not going to spend my time worrying about my health, my time here is way to valuable.
sorry for the long rant, and I have probably gone so far off topic.