There is a lot to consider when you are a liver donor…… December 1999 out of the blue my sister found out that she had cancer. Liver Cancer!
January 2000 my Mother, sister and I traveled to Stanford Hospital in Palo Alto, California to get my sister on the transplant waiting list. While going through the interviews, physicals, consultations and group meetings (we were there for three days) with my sister, I was asked what I was doing there. I told the Social Worker that I would like to pursue being the Liver Donor for my sister. No one took me seriously. I returned home and started to pursue the possibility of being her donor. First I confirmed my blood type to confirm we were a match. Then I had to go through a battery of physical and psychiatric tests at Stanford. This required that I travel 1000 miles round trip each time for each appointment as I am a resident of Southern California. The interview process and travel were grueling. Not only was I away from my own family (my husband and 4 year old son) I was also away from my job.
By April 2000 we had the surgery scheduled for 6:00 a.m. on May 17, 2000. (As I write this, yesterday was two years since we had our surgery.) I checked out of the hospital five days later. I stayed in a hotel for four days and flew home on the 10th day after the surgery. Before I left the hospital my other sister who was my care giver until I returned home pointed out to the intern (on day 9 after the surgery) who was removing most of my staples that the site on my left side was red. The intern did nothing. The following week, day 15 after the surgery, I went to my own primary care doctor who was mortified to find my left side infected. To make a long story short, I had to have packing put into the wound, which they had to open to clean. This lasted for more than a week. I wish the intern that was responsible for taking out my staples was more receptive to the redness on the site when she examined me. Stanford may not have (should not have) let me go home so quickly.
When I returned home my recovery was slow at first. I was scared, weak, tired, and emotional. I really believe the one thing that made me get up and move was my husband and young son. I quickly realized that I needed to get on my feet for everyone’s sake. Despite the generosity, patience, understanding and support of my husband it was clear that after a month he was also physically and mentally spent. Trying to take care of me, our son, work, household chores, etc., he was exhausted! I am lucky that I had the support of my family. My husband and I were extremely grateful that we had many people (family and friends) that gave us financial support either out of there own pockets or by doing bake sales and fund raisers.
One thing that every living donor needs to know is that there is a huge financial responsibility that the donor must/may bear. For example although my sisters and her health insurance paid all of my medical expenses I still forked out thousands of dollars before the surgery for automobile gas, time away from work, airfare, hotels, food while I was away for all of the screening at Stanford. I have to admit I was very lucky that I was financially able to do these things. My sister was not able to pay these expenses. I also have to admit that now that it is two years later I have not been able to recover financially despite the generosity of others. I know in time we will get back on track and I can’t think of a better way to spend your savings, I cannot put a price on my sister’s life. I have no regrets. If you are considering being a liver donor please make sure you and your family are mentally and financially prepared! Since the surgery has so many risks of death (this is real, you need to know how experienced your surgeons and the hospital are in this procedure- very important, check it out) it is of the utmost importance to make sure you have a will, trust or whatever legal documents your family will need if you pass away or need to retrain for another profession if you can not return to your previously physical job due to complications. This was time well spent for me and my family’s peace of mind.
I recently ran across an article on USA Today’s web site that said “Washington (AP) Hoping to encourage living Americans to donate a kidney or even a liver, the House voted unanimously on Wednesday to help pay donors’ expenses. The legislation authorizes $5 million per year for grants to states and organ banks to reimburse travel and other expenses for certain living donors. It also allows for $15 million for grants that would help states develop registries of people who wish to donate and for public education about donation. That money still must be appropriated through the Health and Human Services Secretary Tommy Thompson, who has promised to offer his own program promoting organ donations, said in a letter to the Bush administration supports the legislation.” I just hope that in the future people who are considering being a donor do not get into this surgery just for grant money. You will not get rich! But on the other hand if you are going to be a donor for someone who is terminally ill and this surgery may save their lives, in the absence of a cadaver donor, that government money be made available to help with the expenses of the donor. Great concept. One can only hope that if government programs are available that someone is fairly administering the funds. How they will do that seems not to be clarified yet.
I was off work for three months to recover. Upon my return to work I was feeling really good. I did not miss a day of work because of anything related to my recovery of the surgery until December 2001. Since the surgery I have had stomach problems that have not to this day been accounted for. I had sourness on the spot of my breast bone (I am pretty thin so I am able to feel the bone quite well), I also wake up every day to cold sweats, dizziness, major arm pit sweats and hours of diarrhea. (Almost the same symptoms one gets with morning sickness during pregnancy.) I usually feel better later in the day. First I went to my doctor. I had an upper GI. I had an outpatient scope down my throat to my stomach to check for an ulcer. No ulcer, no pollups, nothing except a mild case of gastroesophagitis which was treated with Nexium. I changed doctors this year. My new physician has put me on 40 mg of Floxitine (Prozac) which is used for depression, stress, OCD, eating disorders! …….. My diarrhea is getting better, the pain on my breast bone is better I feel much better emotionally. But the sad part of this story is I do not feel as well as I should. I still have diarrhea every day (not as bad as before, since I started taking Floxitine). I am really disappointed that Stanford has no protocol to follow up on living donors. Once I was let out of the hospital I was on my own.
When are the hospitals that are doing living liver donor transplants going to add follow up for the donors? As a donor having problems it is a constant frustration as to why I have these stomach/diarrhea problems. My doctor suspects that it may have to do with the fact that the surgery requires the team to remove your gallbladder. I am not sure if that is valid or not but his only recommendation is to take some Kaopectate every night before I go to bed. I am saddened that I have had to trade a normal physical existence for these physical problems due to the surgery. Again I have no regrets and I am dealing with my symptoms (that are not debilitating) but I am frustrated that there are only a few hospitals doing anything to collect data on donors.
There is nothing glorious about the surgery for the donor. You are going to be in a lot of pain. You need to know this going to get better with time. Everyone’s experience is different. Every donor is taking a chance that they will have a fair experience. If someone is sugar coating the idea of you giving your liver just make sure you are physically, emotional and financially able to fulfill your responsibilities. And if you have a family you better make sure that they are willing to participate and support the surgery but more importantly your recovery. It’s not easy for anyone and you must have a support system, family, friends, money and GOD/RELIGION.
I am now 41 years old. My sister has lived for two additional years that she may not have had with her husband and two children. Her experience and story as a transplant recipient is completely different from mine. She has had every complication that is explained prior to the surgery. At one point Stanford was considering the possibility that she might need another transplant. This was unbelievably emotional for my entire family considering what we had all been through to give her my liver.
There is a lot to consider. Do your homework. Knowledge is power. Most important know your transplant team and the protocol that they are using. Your healthy life and future is in their hands.
Pamela (Daughter, Sister, Wife, Mother)