Father Pat’s Non-Directed Donor Story
In preparing me to donate a kidney last month, I was given some excellent stuff to read. What was really helpful was to read some first-person accounts (from the transweb.org website) of what it is like, especially Steve Glazewski’s.
Those stories really prepared me for the surgery by explaining just what it was like in detail, so that there would be few surprises. While I don’t want to clutter up the web-site with repetitions, I thought I might write up my own experience as it might be helpful to someone else who is thinking of (or preparing to) donate a kidney.
There are two things that might be a little different in my story. One is that I was a “non-directed” donor, which means that I didn’t offer the kidney for anyone in particular but just let the transplant committee chose the best recipient from their waiting list. The other is that my decision was very much motivated by my religious faith. (I am a catholic priest). So perhaps my story might be helpful to potential donors who share something of these sorts of situations.
While for more than 30 years I have been carrying a wallet card giving permission to transplant my organs in case of death, I never considered becoming a live donor until last year. I happened to read an article in a 2001 “New York Times Sunday Magazine” about wealthy people on the waiting list for kidney transplants who pay large sums to a middle man and fly to Turkey where they receive a kidney purchased from a poor person, often Palestinian, who is desperate for cash. Others fly to China where they can likewise buy a kidney taken (without permission) by the government from an executed prisoner. The government will even reschedule the execution for the convenience of the wealthy foreigner. Although organ purchase is illegal here, the patients come home with their new kidney transplanted and insist that American doctors then do the post-operation stuff.
This happens because the waiting list for kidneys is so long. If there were enough voluntary donors, such abuses would not happen. Further reading showed me that live donation is now rather easy and safe, with no long-term ill effects for the donor. So, since I have tried to follow the teachings of Jesus it seemed to me that this would be a good response to his invitation to love one another, to do to others what we would want them to do for us, to be “good Samaritans” to strangers stricken by the wayside. And since I am 56 years old, I figured that if I didn’t do it now I might soon exceed the age limits that some transplant centers have.
Anyway, the Donor Program gathered my data, and I was interviewed by Doctor, Nurse, Social Worker and Shrink to try to make sure that I was more or less sane, knew what I was doing, and did not have ulterior motives, etc. And, ethically, they will not take a kidney unless they are reasonably sure that it will do no harm to the donor, I was thoroughly checked over physically. They took lots and lots of blood samples, urine (including a jug to collect a total 24-hour production), x-rays, cardiogram, complete medical history and finally a CT scan to see if I had two good kidneys. (Some folks are born with just one, others with three or four!) The CT scan also lets the surgeon select which kidney would be the easiest to transplant according to the number and location of the blood vessels. This required a number of trips over several months, and at every step I was reminded that I could change my mind and drop out at any point.
Finally, it was decided that all looked good and that I could go ahead with it. Since I was “non-directed,” the team had the luxury of being able to compare my blood and proteins with all the many people on the waiting list and match me up with the person they deemed least likely to reject the kidney and least likely to need much anti-rejection drugs. While transplants can be made to work as long as the two people have compatible blood types, there are (I think) six antigens that effect rejection. If all 6 match, the success rate is very high.
In a “non-directed” donation the privacy of the recipient is totally respected at every stage. I am not told who the recipient is, and the recipient is not told (unless he or she spontaneously asks) that the kidney comes from a live donor rather than from a cadaver. It’s sort of like when you give blood: you never know who got your blood, and the recipient never knows where the blood came from. This, of course, fits in very nicely with what Jesus taught: “When you give alms, don’t even let your left hand know what your right hand is doing.”
The date was set for the surgery. The surgeon explained that while it is possible to remove the kidney laparoscopically with small incisions, and that this would make the healing process easier, he personally preferred to make a long (8 to 10 inch) incision below the ribs along the flank from front to back, so that if he accidentally cut a blood vessel or something he would have lots of open room to get to it and fix it fast. I had no problem with that, and in fact found it refreshing to deal with a surgeon who admits up front that he can make mistakes. Anesthesia was likewise explained. Any major surgery has its risks and, while kidney donation is now quite a safe operation, I was always clearly told that there was some risk that I had to be willing to accept in order to donate.
The day before surgery I ate no solid food after breakfast, just clear liquids and Jell-O. In the evening I chugged down a bottle of some laxative stuff which thoroughly cleared out the bowels. I drank lots of liquids that day in order to be thoroughly hydrated, but stopped the liquids after midnight to have my stomach pretty empty for surgery. Early the next morning I went to the hospital, checked in, and went to the pre-op area to change into a gown and get an intravenous tube attached. Sure enough, before the first preliminary “relaxing” anesthesia was administered, the transplant coordinator nurse was there once again to ask if I was still sure that I wanted to go through with it. If not, they would have called me a cab right then, no questions asked. I was still comfortable with my decision (but glad they asked). In my case the little “relaxing shot” put me right to sleep and I remember nothing after that until I was looking groggily around the recovery room, and then installed in my hospital room.
Again, to respect the privacy of the recipient who had been called into the hospital that day, care was taken that any relatives of mine not share the same waiting area with relatives of the recipient, lest they start chatting. We were also kept on separate floors.
I was pretty comfortable in my room that afternoon. An I.V. tube administered liquid and (I think) a precautionary antibiotic. A “Foley Catheter” had been inserted in my bladder while I was under anesthesia and that drained out the urine into a bag. I had morphine that I could administer to myself at will to relieve pain by just pushing a button. It is set up so that an overdose is impossible. The machine keeps track. If you push the button too soon after the previous shot, it will not respond for a couple of minutes. If you are O.K. for another little shot, the machine beeps when you push the button and lets you have it. The machine records how much you are using. That way you control your painkiller as needed, and get neither too much nor too little. (This is known as “dope-on-a-rope” to the initiated.). I also had a plastic gadget to try to suck air through enough to move the indicator, to make sure that I was breathing deeply and keeping the lungs clear. With all this, I had very little pain. That same evening the nurses got me up and, although my head was swimming a bit, I walked with them around the ward, I.V. pole, bag and all, and felt better for the exercise. I slept quite a bit that night.
Next morning they took the bandage off the incision, revealing a line of one-inch strips of tape that keep the incision closed. It looks like masking tape, but is quite sturdy. (Could this be still another use for duct tape?) You leave it on and just wash and shower over it until it gradually falls off during the following weeks. The Foley catheter was deflated and removed from the bladder with a quick tug, and the I.V. disconnected as I moved to painkillers in pill form. I had been encouraged from the beginning to always let the nurses know about any pain, but my brain was still a little fuzzy the first day and I got confused about which were the pain pills and which were the other pills they were giving me, but that got straightened out soon. It’s a good idea to ask what each pill is when they give it to you, to keep track. Above all, let the nurses know exactly how you feel and explain clearly about any pain or discomfort. They know what medications are available, and what extras may be requested, and lots of little tricks to feel better. When they ask, “How are you doing?”, don’t just say “O.K.”. Tell them clearly and in detail how you really feel so that they will know what you need. The donation process can be relatively painless (they try to make it completely painless), but you have to speak up and let them know exactly how you are feeling.
During that day I was able to walk around the ward a number of times, sit in a chair at will, get in and out of bed unaided, and start eating solid food again, so things were going fine.
I did have one unpleasant problem that potential donors should be mentally prepared for. After the Foley catheter was removed from my bladder, it was hoped that regular urination would kick in soon. But, the whole system is still getting in gear slowly after the effects of the anesthetic.
In my case the remaining kidney was working great and producing lots of healthy urine, but I just wasn’t yet able to take a leak on my own power. After a while they used a little sonogram device to measure exactly how much urine was backed up in the bladder. There was so much that it had to be drained before it backed up further. This required the dreaded “straight catheter”. This is a tube that must be manually inserted through the penis into the bladder to drain it. Although the nurses were as proficient and compassionate as could be wished, the process was quite uncomfortable, with some painful moments. But it was over in a couple of minutes and the bladder drained completely. As I heard the older nurse carefully talking the younger nurse (who actually did the procedure) through each step, I suspected that it may have been the first time that she had actually done the procedure on a patient. So I was sort of glad that someone else there felt as worried and uncomfortable as I did. Later on normal urination started up again at last, with no further problems. This, of course, is not something that I tend to talk about at the dinner table, but since it is a procedure that is sometimes necessary after a kidney donation I thought it would be helpful to describe it for potential donors. The more you know the less you fear. To steal a line from the late comic writer Erma Bombeck: “On my list of my favorite things in life, this has its place somewhere below that of ‘dropping a bowling ball on my foot’.” But, it’s not that bad and is quickly over, and in any case many of the patients on your ward are probably struggling daily with more pain and discomfort from their illnesses and injuries than you’ll experience in your whole recovery process.
I steadily gained in mobility and got less fuzzy-brained. My digestive system, however, was slow to kick in and I had a lot of gas building up. There was also some abdominal bloating, as of course the body fills up the empty space left by the removed kidney with fluid, and the neighboring organs have to gradually shift around again. I didn’t have a bowel movement yet, and was not releasing much gas, so this caused discomfort. This presented a problem as one night when the nurse came in to check on me I was having some pain in the chest under the breastbone, probably from the gas build-up. But of course when I mentioned chest pain her antennae began twitching and she had to ask a series of questions to see if it might be a heart problem. It seemed unlikely, but she called in a doctor just in case. (It was the middle of the night.) He likewise concluded from his questions and examination that it probably wasn’t a heart problem, but called in the cardiogram guy just in case. It turned out to be just the gas pain. But again, don’t try to be the doctor. Let the staff know exactly how you feel and let them decide if something should be done. No one likes to wake up the “on-call” folks in the middle of the night, but it’s better to be safe than sorry.
I was discharged from the hospital at three and one half days. (Helpful hint: as your abdomen may still be bloated make sure you have some loose pants, and underwear larger than your normal size, to go home in. I couldn’t button my old pants for two weeks.) I had some Celebrex to take for a while to discourage inflammation, and a strong prescription painkiller to take as needed. As I was anxious to get the bowels moving again, I asked the nurse if the prescription painkiller might also cause constipation. She explained that that was indeed one of the side effects, but that I might just try Tylenol instead (being careful not to overlap the two). This proved to be just right for me. Over the next few days Tylenol was all I needed for pain, and the bowels kicked in promptly. I never had to take the stronger painkiller at all after discharge. But, every patient is different. Don’t be afraid to take what is offered if that’s what you need.
I could walk quite well (and did a lot of it in the next days) and could do stairs fine as well. Twisting would cause pain (also coughing, sneezing or belly-laughing) but progress was quite steady.
I perhaps ought to mention one other thing for the benefit of potential donors. One thing that I had not anticipated was the deep emotional and spiritual impact all this had on me. I found that I could describe to others what the procedure had been like, but would choke up and be close to tears when I tried to express what it meant to me. In fact my first night out of the hospital I woke up to go to the bathroom, then walked a bit as I didn’t feel able to get back to sleep. But when I happened to see my modest collection of get-well cards and balloons I started crying like a baby. Lasted about ten minutes and half a box of tissues. I couldn’t really tell you what I was crying about. It certainly wasn’t sadness. I guess I was sort of overwhelmed by all that had happened: the enormity of giving life to another through donation, the wonderful expressions of professional and personal care I had received, the sufferings of so many other folks in the hospital, the relief that I had actually survived the whole thing, and (I suppose) the left-over effects of so much anesthesia and medication. Anyway, I don’t know how common such emotions might be among donors but don’t be surprised or frightened if it happens to you. You’re doing a tremendous thing, and it’s liable to effect you deeply.
Finally, some thoughts on the spiritual side. While I myself was mostly motivated by the teachings and grace of Jesus, I think that almost all religions encourage acts of kindness such as organ donation. And even if you don’t have much explicit religious belief, you may find that this experience touches your soul as well as your body. Good. The Bible says, “God is love.” As an act of love, organ donation can be an experience of God. From my own Catholic outlook this certainly makes sense. I celebrated Mass back in my Parish one week to the day from the surgery, and most of the folks present had been praying for me and for the recipient. When it came time to say again the words of Jesus over the bread and wine–“Take… this is my body which is given for you… Drink, this is my blood which is shed for you”–I choked up entirely. Any act of self-giving is a sharing in the life of God. I don’t mean to use this web-site to proselytize, but I would encourage potential donors to not be afraid to get in touch with their spiritual roots. They are a source of strength that we all need.
So, good luck to all. I would have liked to mention and thank by name the Doctors, Nurses and others who have been so helpful, but since my donation was “non-directed” I could not give any details of time, place, or persons regarding the operation without possibly compromising the privacy of the recipient. But if anyone wants to get in touch with me, my e-mail address is PSofmcap@aol.com.