The Story of a Laparoscopic Kidney Donation
As Steve G says, if you've found this story, it's probably because you or someone you care about is thinking of donating a kidney to someone. And as he also says, there aren't too many "fence sitters." But here's some info on my experience to give you an idea of what to expect:
First, some background. When my brother was 15, we found out that he had a kidney disease called FSGS. (Focal Segmental Glomerulosclerosis). When my parents found out, they pulled me aside and told me that my brother would likely need a transplant by the time he reached 30. It didn't really register at the time. And I kind of assumed that modern medicine would come up with a bionic kidney by the time he needed one (unfortunately, no such luck!).
My brother's doctors had been watching his kidney function for about ten years, looking any sort of change. In early 2003, they noticed that "his numbers" were slowly going up (doctors love to talk about "the numbers." And if it's not your kidney failure, they usually won't spend the time explaining these numbers – it's very frustrating). By Sept/Oct 2003, things started getting worse, and they started him on a new medication. By the time November rolled around, they told him that he was on track for full kidney failure by March of 2003. The doctors told him that he'd need a kidney transplant by January, and that he'd likely have to go on dialysis before all of the tests could be completed for the transplant. My mother and I were both tested for tissue compatibility in the beginning of December. I was a 100% match and my mother was a 50% match, (which we both knew going into the test). We decided that I would be the one to donate the kidney to my brother, and began the process of tests and whatnot involved.
Things weren't looking good for my brother by late Dec, and on Christmas Eve he had a shunt put into his artery, and began dialysis (the timing was actually okay for us, since there was no work and we could all stay with him, plus we're Jewish, so we didn't really "miss" Christmas). He began dialysis three times a week for three hours at a time. It's a fairly awful experience from what I gather, and we all wanted to get the surgery done with ASAP, so he didn't have to deal with it.
While they were doing tests on both of us before the surgery, they found out that my brother had a descending aortic aneurism (sad enough, same thing that Jon Ritter had), which meant that they couldn't do the transplant until he had that fixed. He went in for heart surgery in February and spent the next six weeks healing from that. It was a tough couple of months, to say the least.
Now for the "good stuff":
After a second battery of tests (blood, urine, psychoanalysis, etc), the doctors were finally ready to accept my kidney.
By mid- March of 2004, I was thinking a lot about the surgery. I went in to meet my surgeon the week before the surgery. We talked about the procedure and I asked him a few questions. He showed me where my incisions would be and we talked about recovery time. As I was leaving, a donor who had just gone through the procedure two weeks prior was coming in for his post-op check up. He let me sit I the room while the doctor pulled off the bandages and I asked him questions about the procedure. If you have a chance to talk to a donor, take the opportunity (and I'm willing to talk to anyone about this, so feel free to email me and I'll give you my phone number). It was comforting to know that someone else had gone through the same thing I was about to go through, and he seemed fine. He was up a walking around and he had a smile on his face. Se said that he was still a little sore when he coughed or sneezed (I get to that later) but he was pretty much all better.
The night before the surgery, I stayed at home, watched TV and took a laxative (a good suggestion taken from other Transweb stories). I'd even recommend limiting your diet to soup, yogurt, etc for the day or two prior to surgery. I stopped eating and drinking at midnight the night before the surgery (doctor's orders).
After a surprisingly restful night, my girlfriend and I were up at 5am and on our way to the hospital. I was a little anxious to get started, but was pretty excited at the thought that my brother might feel healthy soon.
After checking in and having my blood drawn for a final round of testing, I put on the hospital gown and sat in the pre-op waiting area. They found some antigens in my blood, so surgery was postponed for about two hours. I spoke with my surgeon, the two resident surgeons (who were both very nice) and the anesthesiologists. By 9:30 a.m. everything was figured out and we were ready to go. I stood up with a fairly loud, "who's ready to take out a kidney!" This got some surprised looks from the other doctors and nurses on the floor. I had been talking with the surgeons on my team for a while, so I felt comfortable joking with them.
I stripped down and lied down on the operating table and the doctor gave me a quick shot of Novocain in my hand so I wouldn't feel the IV. I was still in pretty good spirits. The IV went in and I asked if this was the point where I'm supposed to count down from ten.
I think I made it to about four before passing out.
I woke up five hours later in the recovery room. I had a Foley catheter and IV's in both hands. I wasn't really in pain, but my mouth was dry and my brain wasn't really working well. I remember asking the nurse for ice chips, which was nice. My side felt hot, but aside from that, it didn't hurt that much. My parents and girlfriend came and saw me, which was nice. Steve G. talks about having people touch you and sit with you. I personally didn't want to be touched at first, but when my dad held my hand, I do remember feeling reassured that I'd be okay. It's probably good to have someone there who's not scared to touch you.
I stayed in the recovery room for about two hours, falling asleep and then waking up and having more ice chips. I remember asking about my brother a bunch of times. When he finally came in, they wheeled my bed over to his for me to say hello. He hadn't had the two hours to come out of the anesthesia like I had, so it was a fairly unproductive conversation. I'm pretty sure I heard a "thanks" from him, which was nice.
I went up to my room at the hospital, when my nurse tried to help me move from the gurney to the bed. This next part is important so PAY ATTENTION. I don't know about women, but for men, the Foley catheter is a pretty unpleasant experience. In fact, it's the only thing that I really had a problem with throughout the surgery/recovery process. Here's why: When they moved me from the recovery bed to my "real bed," I had a bunch of IV tubes, blankets, towels, robes, etc wrapped around me and under me (since they kind of slid me off the bed). The Foley tube got caught up in all of this stuff while they were moving me. BE CAREFUL, is all I'll say. In trying to be helpful, my nurse grabbed all of those blankets, towels, etc and tried to pull them out from under me. Supposedly, you could hear my yell from across the hall. She had grabbed the catheter tube with all of that other stuff and yanked on it. I told her to step back and let me handle things for a minute. I managed to get everything untangled and out from under me just fine. Sure, it took about five minutes, but I wasn't going anywhere. Keep this in mind: Nurses are often in a rush. They have very stressful jobs and are usually looking after several patients at once. Don't let them rush you on anything . If there's something that you want to do by yourself (like unbunching those blankets), feel free to ask them to just stand by you to make sure you're okay. Some things are easier to do yourself.
Aside from that incident, everything was smooth sailing. I was on pain medication (IV of morphine and some other stuff), which was fine for pain. I watched some TV and basically just passed out. I woke up several times in the middle of the night and saw a few of my surgeons. By mid-morning the next day, the catheter was out, and I was getting ready to walk around. My brother and I had spent most of that night and the morning sending messages back and forth with our nurses and doctors. I figured it was time for me to go see him.
A side note: I had two IV's in: One was pain medication and one was saline. They want the kidney (notice lack of plural) working as much as possible so they pump you full of saline. (I gained about 15 lbs from Tuesday morning to Wednesday morning and didn't eat one thing). Since I always felt like I had to urinate, after the catheter was out I went about every hour just to be on the safe side. I had one of the IV's (saline) taken out at mid-day on Wednesday, when I started walking around. The next IV didn't come out till Thursday.
I was walking around by 1pm Wed. and the doctors said that I could go home the next day if I wanted. I had some visitors (It's nice to see people and everyone treats you like a hero which feels great). I didn't really look beaten up, but I hammed it up for a few friends who seemed genuinely disappointed that they came all the way to the hospital and they didn't get to see any gore.
I spent most of Wednesday sitting around my brother's room, watching TV and hanging out with my parents.
I was back at my house by Thursday night. I hung around, watched a lot of TV, and slept a lot. Honestly, I didn't do much for the next six days. I showered on Friday, which was nice. As long as you don't let the water directly hit the incisions (if you have a hand held shower nozzle, this helps), you're fine.
I probably pushed myself to heal faster more out of boredom than anything else. By Wednesday of the following week (eight days after the surgery), I was searching for things to do. I checked in with work a few times, but they had been prepared to have me out for at least two weeks, so there wasn't much for me to do. I drove my car to the video store and did some errands. By the end of the second week, I felt really good. I wasn't back to normal, but I could walk around, lift light objects (I managed to carry a couple of grocery bags for ten minutes with no problem). Over the next four days, I saw a few movies (I managed to walk the eight blocks to the movie theater with no problem).
I'm writing this exactly 14 days after the surgery. I'm back at work and am feeling really good. I woke up with a lot of pain from my right side a couple of days ago (my left kidney was removed) so I went to the doctor who said that it's probably some blood moving around, and that I should be fine within a day or so. And I woke up this morning feeling much better.
I'm planning on starting my gym routine (although a much lighter version for the next few weeks) on Thursday.
For the first few weeks, you're going to urinate much more often than you're used to. This has gone away, and aside from sneezing or sitting in certain positions for too long, I'm pretty much not in pain anymore.
My brother is on the road to recovery too. He's feeling better and his "numbers" are almost down to normal.
Some Other Info:
I basically spent my first week lounging around in PJ's. You're going to be bloated so you're going to want loose fitting pants and tops for a few days. Pajamas and warm up pants were great.
For the first few days (see the above story).
After the first few days, your abs are pretty sore for another week or so. It feels as if you did a ton of crunches the day before... but the pain doesn't go away. Whenever you stand up or sit down, it hurts a little bit, but it's not that bad. Laughing hurts and sneezing is really painful. Thank God for that trick I learned when I was in 4 th grade about thinking of a pink elephant when you don't want to sneeze. For some reason it seemed to work a lot. My shoulders and back hurt a lot. This is because they blow you up with gas during surgery to make it easier to work on the kidney. It stretches your diaphragm which is connected to your back and shoulders and you'll experience pain there. Stretch a little bit (and take some Advil) and you should be fine within a few days.
Pain medication: I took the advice of other donors and tried to get off the IV hard stuff ASAP, so I could start my bowels moving. But I did take Vicoden fairly liberally for the first week. You're not going to heal any sooner without it, and there's no reason to be in pain. The only problem is that with all the pain meds, your brain starts to turn to mush, so I switched to Advil by the end of the week.
Incisions: I had four small incisions all over the right side of my abdomen. I had one larger incision along my belt line (about two inches below my bellybutton. It was about five inches long. The small incisions are barely noticeable, and the larger incision is hidden. Unfortunately, no cool scar to spark "war stories." Fortunately, smaller incisions mean shorter recovery time and less pain.
Working Out: Up until finding out about the surgery, I had been okay at best about going to the gym and keeping in shape. I wasn't fat, but I definitely had a something of a "beer belly". When I found out that this was definitely happening, I started hitting the gym hard . I tried to drop as much weight (body fat) as possible. In the four months prior to surgery, I dropped from 214 to 189 lbs. I cut out a lot of foods and drinks that I liked, and went to the gym 4-5 days a week. I concentrated on, my abs (this is most important), my lower back (second most important) and my upper back and shoulders (also very important). I also ran and biked a lot. I think this had a lot to do with my fast recovery. I tried to lose fat, but much more importantly, I worked on building up muscle.
Shaving: Shave your chest, legs, arms, etc. Ask the doctor to point out where ANY needles, incisions, etc will be. He'll also mention the catheter. Anywhere he mentions, shave within 6 inches each way of that spot and shave the thighs and insides of both legs. Do this at least five days before the surgery. I didn't have enough time and couldn't do it for fear of razor burn... my doctor warned me that could lead to infections. Also get a short haircut, clip your fingernails and especially your toe nails (bending over hurts for the next few weeks).
Research: Read as much as you can about the operation, the risks, the pain, etc. Do as much homework as possible. Read about the hospital you're staying at and the doctors who will be working on you. Ask them about how many times they've done the operation and what their success rate has been. Talk about their "conversion rate," which is the rate that they have to switch from Laparoscopic surgery to standard surgery.
Insurance: Everything is paid for by the recipient's insurance. Anything that insurance doesn't cover, the federal government will. I'm not sure how it happened (probably some senator had renal failure or something), but for kidney donors, you don't have to worry about paying for anything. Get everything in writing anyway... you don't want to deal with bills two months later.
Interesting Fact: If you're a living kidney donor and you ever need a transplant, you automatically get moved to the top of the list.
Final Thoughts: When I told people I was donating a kidney, a lot of people told me that "that's such a great thing that you're doing," or "you're a true hero," or "it's so admirable to do this." While I appreciated the effort on this, it just kind of missed the mark for me. One of my friends had the right response though. She said, "You're so lucky that you're a perfect match." That was it. I felt lucky. I loved the fact that I was able to do something to help my brother out. It's not about doing an incredible thing... Imagine someone you care about is sick. Now imagine that you hold the key to their health in your body and doctors have to go in there to get it out. It's a no brainer. You lie on the table and ask them to start cutting. That's what this was for me.
Overall, this was a good experience. It didn't really hurt too much and it's a great story to tell. If you're considering, I'd say do it.
Contact Info: Please feel free to email me with any questions. I'm happy to talk about my experience, what I've learned and answer any questions that I can. If you want to talk, either email me your phone number or I'll give you my phone number via email. Sorry, I can't put it up here.
Alan Katz: firstname.lastname@example.org