I thought about sending this in a PM, but if there is a chance that anyone else here that could benefit from this information, I would rather post it in this thread.
I think it's wonderful that you want to do this for your mom, but if you do get the opportunity to go ahead with it, there are some things I’d like to tell you from our personal experience.
DH and I have been through the entire process beginning to end (DH was to be the donor for his mom), and it was such a stressful time that it almost cost us our marriage. He now talks about that time as being pretty much the worst time of his life.
Live liver donation is not like live kidney donation. It’s a much bigger deal - bigger surgery, bigger risks, longer recovery time. The chance of the donor having to be re-hospitalized due to complications can be as high as 40%, with some of these complications being potentially serious. Be sure that you are well educated about all of this before making the decision to proceed.
Live donation causes an ethical dilemma for doctors. They really don’t want to cut open a perfectly healthy individual and take out part of an organ. They want you to be absolutely sure that you want this, and they *should* put you through both physical testing and psychological counseling before approving you. This leads me to my next point.
The testing you will go through is called “hell week” at the Mayo Clinic. My husband went through a week of very long days of testing, some of it uncomfortable, and some of it flat out painful. In addition to the physical testing, you will also meet with a psychologist to determine that you are mentally stable and that your family dynamics are stable.
Regarding your family dynamics, you really have to be sure your family dynamics are stable, because while you would expect this kind of event to bring out the best in everyone, there is a very good chance it will do just the opposite. I’m really sad to say my husband was so desperate to save his mom that he lied about his family dynamics and got approved when I felt he absolutely shouldn’t. I knew things about his family that they didn’t, and of course he didn’t share those kinds of things with them. I wanted nothing more than to tell the psychologist about these things, because I knew what his family was going to do to him, but if I had taken this opportunity to save his mom away from my husband, I knew he would probably have never forgiven me when/if she died. As a result, what his family put him through during this whole ordeal was really horrible, and it tore him up. The unbelievable amount of stress that their family caused him almost tore our marriage apart, as well. He didn’t get over it for a couple years, and even now it is really hard for him to talk about.
If your hospital doesn’t put you through all this testing, I question whether I’d want them to do the procedure. We were doing it through Mayo, which is among the best there is. They were wonderful; we had no complaints at all (except that they let my husband fool them into thinking they had this wonderful family who would do anything for each other, but I suppose they can only go by what he tells them…)!
In the case of my husband and his mom, while they were doing a last minute checkup on his mom the day before the procedure was to happen, they determined that she was having some questionable heart issues so the surgery was canceled until she was healthier. About three weeks later, they had a match with a cadaver liver for her, and it turned out to be the best thing that could have happened for her, as the liver was a match to hers in almost every way, including being large enough to improve the success rate. What she would have gotten from my husband would probably have worked, but they much preferred something larger, as her own liver was quite large.
The recovery time was long, and my husband was immediately abandoned by the rest of them, left to care for her 24/7 in Rochester by himself. Sadly, I truly believe that even if he had been the donor, they would have done the same thing. Both of them would have needed round the clock care, and nobody would have stepped up to the plate (I had a young child at home and a new job with no leave available to me, so I wasn’t in a position to help much, either, although I would have had no choice but to figure out a way.) There really are some selfish, selfish people in this world.
As a follow-up to her story, she did quite well for about a year or so, but she has since become sick again. She isn’t very forthcoming with medical information, so from what we know, we believe it’s the same issues she had before, but with more complications added in. With that said, we must remember that she has been given several additional years to her life (I think it's been three or four years since the surgery), and hopefully she will have several more to come.
There is much more I could say about this subject, but this has gotten plenty long already. Let me know if you have any questions at all! Please know that I am not saying all of this to you to scare you away from doing this – it’s a beautiful gift! I’m telling you all of this because since we went through this, we have encountered many people that think it’s “not a big deal”, and “they’d do it for anyone in a heartbeat.” That couldn’t be further from the truth. It is a huge deal. The stress is high, and the recovery time is long and painful. It’s something that you think should bring your family closer together, but in reality, it could potentially tear your family apart. It won’t affect just your life, but your whole family’s lives as well (I'm talking about your husband and children here). So I guess what I am trying to tell you is if you do get the opportunity to do this, please make sure you are very well informed and have given it much thought.
I hope it all works out fine for all of you in the end..
The nutritionist is a good idea tho, I think I'll see if my doctor can recommend one.
In the past couple of months, since I've been really trying, I've lost about 13 pounds.
I can laugh at 42. I'm sure being off all weight charts and being told I was "morbidly obese" led to weight gain over the years in my youth.
I'm certainly not going to complain considering my parents both take medication for hypertension.
