John T. Haller, July 6, 2009
On June 29th, 2000, I donated a kidney to my father, who was in renal failure and dependent upon dialysis to stay alive. I have compiled this webpage to act as an information source for those contemplating being a donor or donee and their friends and family. Feel free to read through the information I have compiled, suggest new sources of information, or to contact me if you are thinking about becoming a donor or donee.
What is living donor kidney donation?
Living donor kidney donation involves the removal of one kidney from a donor and the transplantation of that kidney into the donee. Although the body has two kidneys, an individual can live quite normally with only one, as the remaining kidney grows and takes over most of the function of the other. After the recovery, the donor will be able to live life much as they did before. The donee will need to take anti-rejection drugs, but will be able to return to much of their life as normal before renal failure.
Why living donor kidney donation?
Some people wonder why it's necessary to do a living donor kidney donation when there are cadaver kidneys available. There are several reasons. First, doing a living donor donation ensures the recipient can get a kidney when they need it rather than having to wait until one is available (and having to drop everything as soon as it is). Second, living donor kidney recipients have a much better survival rate, as much as 25% better chance of survival after 5 years overall. Third, if doing a living donor kidney donation to a close relative, there is a better chance of being a better match tissue-wise which can result in lower doses of anti-rejection drugs for the recipient, which means a much better quality of life!
How is the operation performed?
There are two different ways in which the donor's kidney is removed:
- Conventional Open Nephrectomy - This is the original surgery technique that has been in use since the first surgery in 1954 when a kidney was transplanted between identical twins. It involves an 8 to 12 inch incision made along the lower border of the ribs from the spine to front of your abdomen. Removal of a portion of the rib is sometimes necessary (more often with men) to gain access. The organs are moved to the side and the kidney is removed. A modified version of an open nephrectomy called a "mini-incision" nephrectomy is also being performed now. It involves a smaller incision (3 to 4 inches) and does not involve the removal of a rib.
- Laproscopic Nephrectomy - A laproscopic nephrectomy, which I had, is the newer surgical technique. It involves inflating the abdomen with gas and then using a series of 2-4 smaller 1/2 inch incisions to insert cameras and laproscopic instruments on each side of the abdomen and a single 2.5 inch incision in the center below the belly button to remove the kidney. The advantages of this surgery are decreased recovery time, less abdominal pain as fewer muscles are cut and less trauma to the internal organs. It is important to be aware that there is the possibility that an open nephrectomy will be needed once the laproscopic surgery has begun due to unforseen complications.
Preparing For Surgery
As with any major surgery, there are risks involved, including a risk of death. While rare, it is best to be prepared for it and have your affairs in order (will, life insurance, instructions to family members, etc). As with any surgery, you'll recover faster if you're healthier going in, so it's best to start working on your health a few months prior to donation. This includes all the usual: proper diet, getting to a healthy weight, plenty of exercise, plenty of water, etc.
When to Schedule the Surgery
You'll be coordinating with the hospital doing the transplant and the team of doctors as well as the donor, but it's best to schedule the surgery when it won't impact work/school/life as much if your recovery takes longer than expected (infection, etc). It's also worth considering when to schedule based on what hospital staff is around. The most important advice I can give is DO NOT SCHEDULE SURGERY ANYWHERE NEAR A MAJOR HOLIDAY! I made the mistake of scheduling mine near July 4th. As a result, most of the regular nursing and hospital staff was on vacation and the replacements were sub-standard, resulting in one nurse's aide actually injuring me in the hospital. Do NOT let this happen to you!
What to Bring
When going into the hospital, it's best to bring some comfy clothes and slippers (they're gonna get you up walking around the day after surgery) as well as some books and other things to keep you busy. You may want to bring some music to listen to as well, but be warned that theft can happen in hospitals, so rather than bringing your $500 phone/media player, grab a $50 simple MP3 player and load it up.
Visitors in the Hospital
You should avoid scheduling friends and extended family visitors the day of or right after your surgery just to see how you're feeling. It's actually best to have someone else act as your 'point person' (parent, spouse, etc) in terms of keeping everyone in the loop and making sure you have visitors when you're up to it. It also helps to schedule things so 10 people don't all show up at the same time (since the hospital won't let them all in at once anyway).
How long does recovery take?
Recovery from the operation itself takes anywhere from a few weeks to a few months depending on complications. Most operations go smoothly without complications as two friends I know did (both recovering in a few weeks). Unfortunately, my primary incision became infected and had to be cauterized and then heal slowly from the inside out, so I was laid up for over a month. Most people wind up with quite a bit of soreness that can last a few weeks, but everyone's body is different. A friend who recently donated to his sister didn't need any pain medication at all after he left the hospital. After several weeks, your energy will begin to return to normal as your body adjusts and the remaining kidney compensates. About a year later, the remaining kidney will be up to 50% larger and take over much of the function of the donated kidney!
Any Lasting Effects?
For the most part, after your body has adjusted, there will be no long-term negative effects from donating. You will need to be sure your kidney function is watched a little closer than normal at your yearly physicals. And you'll need to drink more water than you used to (10 glasses a day instead of 8) just to be safe. There are some issues with taking anti-imflamatory medications ongoing which you should talk to your doctor about. And, generally, it's best to avoid any contact sports after donating since if your kidney takes a hard hit and is injured, you don't have a spare anymore.
Would you do it again?
Since I was one of the very rare folks who experienced a complication and an injury in the hospital, I'm often asked if I would do it again. The answer is simple: ABSOLUTELY! My dad has been in excellent health since the surgery and has needed far lower doses of anti-rejection drugs than expected due to our being a close tissue match. After the surgery, he was working full time again, doing yard work and all the other things that kidney failure had been interfering with. He's been healthy for 9 years now (after slowing down for about 3 years before surgery) and the difference has been great. The doctors think that with the new advances coming each year, my kidney will last him the rest of his life. So, to anyone who asks, I would do it again in a heartbeat.
I'm thinking of donating, can I ask you a question?
Sure. I'm pretty busy working on things like PortableApps.com, but if you drop me an email, I'll write back as soon as I can!
Additional Resources
There are a lot more resources online now than when I donated. Here are a few: