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Marcia's Story
From A Speech to a Community Group
Thank you for asking me to speak today. I'm happy to be here and share with you what it was like for me to be a donor. Please forgive my reading these remarks. When I was asked to talk about this subject - the process of becoming a donor and my thoughts and feelings along the way - I decided to write down some notes in hopefully a logical and chronological manner that would be brief and make some sense. As far as I can tell so far, the absence of one of my kidneys has not affected my brain but just in case I might have a memory lapse I've decided to rely on some written notes.
My brother, Jerry , the recipient of my kidney, is 52 years old and was diagnosed with Type 1 diabetes when he was in his 20's. The diabetes that ultimately caused his kidneys to fail. Until last spring, when he became ill from complications of his diabetes, quite honestly, I never gave his illness or how it effected him another thought.
Evidently, unbeknownst to the rest of the family, his kidneys had been slowly failing for the last 10 years or so and finally last spring he had to be hospitalized, as he became ill due to lack of kidney function. They were able at that time to regulate his blood sugar and stabilize him, but it was at that point that it became clear that he would eventually need a transplant or go on dialysis. I remember talking to my sister-in-law, Larraine, on the telephone and how my stomach flip-flopped when I heard her say, "you know, he'll eventually need a transplant." Until then of course I knew my brother was a diabetic, and I sort of knew something about kidneys and organs being affected by diabetes, but it never occurred to me that my brother would some day need a kidney transplant. Maybe I was in denial about his health or it was just wishful thinking, but when I came to realize the seriousness of his condition, it became quite obvious to me that I, as a sibling and potential donor, might be an option. It was as if I knew then that I would someday be going through surgery to donate my kidney. I had no idea when or how soon it would all come to pass, I just knew that eventually it was something that I would be doing. And since that day last March there has not been a day where kidney surgery didn't occupy some of my thoughts.
I think for many donors the process of becoming a donor begins and ends right there - someone they know and care about is sick, needs a transplant, they say "take mine" and that's that. It's like it's automatic. I did kind of have a sense of it being automatic but at the same time I was very aware that I had some hurdles to get over before I could donate and some choices to consider. I did tell my brother at the very beginning that he could have my kidney if he needed it but that I wanted to make sure that was in fact the best choice. I let him know that I would be his donor only if and after every other option was considered.
Until the beginning of July, when his conditioned worsened, we kept up to date on Jerry's health and kidney function. And the conversations casually began to narrow and rule out who would be available if and when in fact his transplant would indeed take place. My mother who is 76 and my father who is 82, although both in good health, were considered too old. The upper limit to be a donor varies from transplant center to transplant center but generally the upper age is around 65. Actually, my mother was never an option because she only has one kidney. She was born with just one kidney and has lived a perfectly normal (of course my brothers and I may question the normal part! Just teasing, Mom) healthy life and was not even unaware of that fact until she had a hysterectomy at age 65 when it was discovered. I have another older brother, Howard, who was also ruled out immediately because we learned he has a different blood type than Jerry. The very first step in the process of determining compatibility is matching blood type. Howard also takes medication for high blood pressure and would therefore not be eligible.
It was in July, that the doctors ordered Jerry to go on dialysis. I happened to be going to Memphis for a wedding and it was quickly arranged that, after the wedding, I would travel to Nashville where my brother lives to meet with the "transplant team," as it's called, and begin the testing process. Prior to this, in Omaha, I had already had a 24-hour urine test, and I passed this test with flying colors - no irregularities. I was told that 95% of potential donors are ruled out from this test alone.
My husband, Steve, joined me in Nashville and in a quick 24-hour time period, I had 15 vials of blood drawn, a cat scan of my kidneys to make sure that I had in fact two kidneys myself and to determine if they had all the adequate veins and arteries and positioning that would lend one of them to surgery (the cat scan technician told me I had beautiful kidneys), a chest x-ray, and an EKG. Steve and I also spent almost three hours talking to the various doctors and surgeons where I had the opportunity to ask questions and become more informed about the transplant process. I had lots and lots of questions, which unfortunately for a short period of time put a wrinkle into this whole process. I had so many questions, in fact, that the transplant coordinator called me at home in Omaha after my visit to Nashville to tell me that I was not a good candidate to be a donor because the "team" felt there was too much hesitation and reluctance on my part.
I sat down and wrote a letter to the lead surgeon and tried to express to him that there was indeed reluctance and hesitancy on my part but that I felt it was a natural part of the whole process from my perspective. I had gone from knowing relatively nothing about transplant surgery to trying to absorb and learn as much as I could in a short amount of time. While I was in Nashville, I heard and learned a wide variety of facts, opinions, and statistics. Most of it was helpful, some was confusing and contradictory, and my intent was to play "devil's advocate" and uncover as much information and learn of all the options that I could so I would be able to make an informed and thoughtful decision. In considering being a donor for my brother there were a few hurdles in my mind and each one I investigated to the best of my ability until I was satisfied with the answers and then I moved onto the next hurdle.
My first and foremost thought concerned the health of my own children: having diabetes in the family and if they should ever need a kidney. I only have one kidney to give, as obviously, I need at least one, but I came to realize that as of now no one shows any signs or symptoms of having diabetes. But if one of my children should ever need a kidney, it would be unlikely that I could be useful as a donor to them. Assuming that by the time that could happen as a result of them ever developing diabetes and it attacking their kidneys to the point of losing kidney function I would be too old. My next hurdle concerned learning about the prospect of my own health living with one kidney. I researched and learned enough to become comfortable that I could indeed live a normal life span with just one kidney. Another stumbling block concerned the method of surgery itself - having a kidney removed via the newer laparoscopic method vs. the more traditional open method. In the end, after giving careful consideration to the information I learned about the open method and, because I had confidence and trust in the surgeons I met in Nashville, I became comfortable with proceeding with the open method. So, that decision was made and I came to the point of dealing with my own fears of the surgery itself.
One of my questions dealt with trying to measure my brother's health status and welfare, (how soon and how bad did he need a kidney?) vs. my own risk and fear factor of the surgery. I had the total support of my family including both my parents, my other brother, Howard, my husband and children, for whichever I chose. I did not fear or worry about what my family would think of me or how they would treat me if I chose not to be a donor. As a parent myself, I can appreciate how difficult it was for my own mother and father to have to sit back and be unable to help while two of their children were potentially considering undergoing major surgery at the same time. I considered the fact that I have been very blessed with good health and good fortune in my life, and I potentially looked at this experience as an opportunity to "pay back". What better way than to help my brother in a potentially life-saving opportunity. I weighed the consequences of Jerry receiving a cadaver kidney as opposed to my "live" one, and I realized by virtue of the fact that he wouldn't have to wait if I became a donor that also allows a cadaver kidney to be used for someone else who doesn't have any living donors willing to donate and, thereby, I'd be helping others as well. There are over 45,000 people on the national transplant waiting list for a cadaver donor. I had also learned that the success rate of transplanting a kidney in the first year is about the same for a living kidney as a cadaver kidney. And research is now showing that there is additional long-term benefit from a transplanted live kidney.
I also considered my own personal feelings of guilt (not put on me by anyone else other than myself) if I were to say no. The doctors provided me with the opportunity "out" at anytime with no one's knowledge and I appreciated that. However, that path was not an option for me. If for some reason I chose to not proceed, I would have been honest with my brother so that, if sometime in the future I were able to change my mind, the door would remain open to be a donor.
I wanted to clarify what was perceived as reluctance and hesitation (and honestly, yes, it was) but more so a thorough fact finding, soul searching, thought and feeling process on my part. Was I eager to do this? No, I wasn't. But, I was reassured and it was normalized for me that it would be unusual for a person to be eager to undergo major surgery. Did I want to do this? I'm not sure "want" is the right word to express how I was feeling, but I wanted to in respect to helping my brother and also selfishly considering how comfortable I would feel with myself if I said no. It was difficult to say yes, but I was unable to say no. I had learned that for many donors there is indeed what might be considered an eagerness and urgency to donate (as perhaps I might have felt if I were donating to one of my children - this is nothing against my brother, but I guess I can understand from the doctors' perspective what I looked like as a donor for my brother versus what I might look like if I were a donor for one of my children). In this case, this was a major life-changing event for me, my family, and my brother, and I took making my decision very seriously.
So, I put all these thoughts and feelings into my letter to the surgeon and faxed it to him the next morning. We spoke on the phone later that day, cleared up the misunderstandings and come to an agreement that a final decision would not be made until I had completed a psychological evaluation which is required of all donors to make sure they are not donating under duress, and are of sound mind to make the decision.
I spent the next three weeks, until my psychological evaluation, continuing to research and learn about transplant surgery. One of the interesting things I learned from one of the donor online websites I found was that, surprisingly, most donors do not ask a lot of questions. There's a commonly held perception that donation is no big deal. It's called the "drive thru" mentality. You just pull into the hospital and drop off your kidney. Many people don't realize it's major surgery. Lots of donors are actually unprepared and have difficulty psychologically with recovery because they had no idea what to expect. There's also no guarantee that my kidney would work. Donor kidneys do fail and even if mine worked, Jerry would still be a diabetic. The kidney donation doesn't address the underlying problem - the lack of a fully functioning pancreas. Essentially, my brother would be trading one illness (kidney failure) for another (fighting organ rejection). However, it was indisputable that my brother's life would likely be significantly improved over a life on dialysis, which isn't a cure, either.
I underwent the psychological evaluation with a psychologist at the med center here in Omaha who declared me normal (which I'm sure my own children might argue with) and sane to make the decision. Ultimately, then I concluded that this was clearly the right thing to do for my brother medically. While I have three children and a husband, I am in good physical shape, had no reason to think my husband or children would need a kidney from me in the future (which if they did - they'd still have each other as a pool of potential donors) and I realized and accepted that my kidney may or may not work for my brother and I would receive no physical benefit from undergoing major surgery.
So, after many long hours of discussion and support from my husband, the decision was made. The doctors in Nashville got the word from the physiologist that I was okay and the surgery was scheduled - September 18th, the first day of Rosh Hoshana. Obviously, this was not a great choice of dates, but due to scheduling conflicts, etc., it was the soonest that would be available and once the decision was made we wanted to do it as soon as possible. On the other hand, I liked knowing that my friends and other family would be in synagogue during my surgery and that was comforting and reassuring. I liked having so many people contact G-d while my brother and I were having operations.
And, then September 11th - no air travel, for one day, then two, and then gradually a little at a time, and it wasn't until the night before we were scheduled to travel to Nashville that we were certain there would be a flight going to where I needed to be. They couldn't quite do this without me. We were prepared to rent a car and just drive at that point, but ultimately our flights went without a hitch.
I went to the hospital the morning after we arrived for last minute blood tests - final matching process to confirm the previous results. My brother and I had been found to be a 6 out of 6 match that is rare even for blood relatives - obviously the higher the match the better. Nowadays, the matching itself isn't as important as it once was because of the success of the anti-rejection drugs the recipient takes. They'll even do a 0 out of 6-match donation if everything else checks out. What our good match has meant for my brother is that other than being an identical twin (as he is 5 years older, male, 6'4" and 225 pounds - obviously not identical twins)) my kidney, once in his body, would feel most comfortable in its new surroundings. It may affect the amount and degree to which he will be required to sustain, hopefully a lot less, of the very harsh anti-rejection drugs that must be taken. In fact, the amount of drugs he was initially prescribed has already been significantly reduced due to the success of the transplant.
Jerry had been hospitalized at this point due to another complication from being on dialysis, and they decided to just keep him there to keep him stable and healthy until the transplant could take place. My mother and father, my brother Howard, Steve, and I went to Rosh Hoshana Eve services in Nashville. We visited Jerry in the hospital after services, no emotional words or expressions from any of us, although there was unspoken anxiety. I went to give my brother a hug when we had a moment alone, and he told me not to get "weird" on him. All was normal.
The next morning I checked into the hospital with all the procedures and steps it takes to get settled in and prepared for surgery. At this point I didn't feel scared, or nervous- it was just anxiousness. Ever since the decision had been made all I wanted to do was do it. The time leading up the surgery was endless and I was glad I was about to put it all behind me. It had been six months since I first heard my brother would need a transplant and in a few hours it would be done. I didn't see my brother that morning. We were taken to separate operating rooms after receiving some really nice drugs to reduce anxiety. In fact, once the anesthesiologist relaxed me I remember nothing until I woke up in the recovery room.
It was over! And it was successful - the surgeon told me right away that Jerry was "pissing" like a racehorse immediately.
I was released from the hospital on Saturday, made a visit to the doctors office on Monday, and got the after-surgery release from the hospital visit okay that I could return home. Steve and I went straight from the doctor's office to the airport and we came home. The best and most uncomfortable flight of my life.
I don't know if I've clearly expressed the wide range of emotions thoughts and feelings of this whole process from the donor's perspective and I can only speak for myself. But, one thing I did have in common with other donors I met online is that there is a lot of praise for being a hero and for being brave. I don't really feel like a hero, nor do I feel very brave. It was something I had to do. I couldn't sit by and watch my brother be sick and possibly die and not give him my kidney because of all the what ifs in the future. It was a logical conclusion - not a brave one and my feelings about this are not unique to me. Other donors have expressed this as well.
And finally, it is important to know that my experience as a donor felt to me all along like I had a partner through it all - not my brother in that sense, but my family, particularly my husband. Without actually physically going through the surgery, he was with me through it all and I couldn't have done it without him or the support of the rest of my family. We can tell you how much my being a donor affected so many people in our lives other than my brother and me.
The effect on Jerry has been dramatic. He was able to return to work full time three weeks after the surgery and hasn't felt so good in many years. His whole body had gradually been weakened for so long I think he forgot what it felt like to feel normal. With a healthy kidney he immediately felt the effects of returning to feeling normal and how great feeling normal really is.
My only restrictions are to avoid accidents or participate in severe sports that could damage a kidney. I have to give up boxing and tackle football. No big loss.
I never would have guessed 20 some years ago when my brother was diagnosed with diabetes that in my future I would be a kidney donor. I look at my scar and it's almost like its magic - like science fiction - except this is real. A part of my body is alive and well and living in my brother's body in Nashville, Tennessee. I haven't seen my brother since the surgery - I'll see him next month when we go to Arizona to visit my mother. I'm wondering what it will be like to see him and know my kidney is in there, keeping him healthy and alive, and he'll probably give me a look and tell me not to get "weird" on him.
