The Steve G Story: Experiences of a male living related kidney donor
by Steve Glazewski
"If I had it to do all over again, I surely would. While there was some pain and discomfort, it wasn't a whole lot worse than when I had my wisdom teeth out. Plus the euphoria over seeing the improvement in my cousin was worth many times what little hurting and inconvenience I went through."
I'm a guy who donated a kidney to his female cousin. You've probably alighted on this web site because you were searching for something of this type.
I've found that there are very few fence-sitters out there when it comes to the decision to donate a kidney: either you've already decided you will, and are afraid of what you'll find here; or you've decided you don't want to and are looking for reasons to support your decision. This is not about why to donate; that's up to you. This IS about what males can expect when they offer to be a donor. A lot of this is applicable to females, too. Maybe some female significant-others of potential donors will even benefit from this.
To cut to the answer: it hurts at first. The first four hours after surgery are NOT pretty. Fortunately, you won't remember anything about what you felt, just this vague memory that you hurt. How much it hurts overall depends on the individual, as does everything else I say here. Plus, remember that I'm not a doctor. Especially for men, being a donor will involve some discomfort - more than it will for a woman donor. Read all the testimonials you can find on the web. You'll find that, in general, the male donors mention the pain more often than the female donors. There's a reason for that - anatomy. Yes, guys, we're built different from women. Male kidneys tend to be better protected by the rib cage, which almost guarantees that part of a rib will come out with the kidney. Plus, men's kidneys "ride" higher in the body cavity than women's kidneys, which means that men's incisions are longer (to afford the surgeons more room to work), and more often necessitate "rooting around" more than women's. The physiology of the arteries and veins to/from the kidney will also help determine how long your incision is.
If I had it to do all over again, I surely would. While there was some pain and discomfort, it wasn't a whole lot worse than when I had my wisdom teeth out. Plus the euphoria over seeing the improvement in my cousin was worth many times what little hurting and inconvenience I went through. The hospital stay was also very gratifying. I'm the kind of guy who lives off of praise and pats on the back. The hospital stay was one positive reinforcement after another. The nurses (especially), doctors, assistants, and technicians all applauded every small step in my recovery. They were an endless source of encouragement and praise.
Something else that isn't nearly as advertised as necessary is the fact that the DONOR, not the recipient, will have the longer/harder recuperation period. Think about that, and it's sort of obvious: the donor has a longer incision; the donor will (especially if male) probably lose some rib; the donor started out healthy and had this fairly serious invasion into the body performed. Most hospitals have lots of information and support for recipients, but precious little for donors. Don't get me wrong; the recipient has already been suffering for who knows how long, and the recipient has a long, hard road of fearing rejection, taking medicines for a very long time, and monitoring with blood tests, etc. But for the weeks immediately after the surgery, the donor is in more need of knowledge/assistance in physical therapy and, above all, understanding. As a donor, it was DARN EMBARRASSING to have my female cousin - recipient up and walking and exuding health before me. There's a large amount of male psychology in that statement, I know.
Assuming you've made the decision to donate, the first thing you need to do is EXERCISE (if you don't already). The goal is to tighten up your back, side, and abdominal muscles, and maybe get rid of some of the "love handles" around your waist. This is common sense: if the muscles are healthier and stronger, they will heal quicker; if there's less fat under the skin, the skin will heal quicker. Not only will you heal quicker, but you'll be ABLE to heal quicker by being more capable of walking sooner (more on that later). Find a physical therapist or an exercise trainer. If the idea of a year commitment at a gym or health club isn't appealing, go through the transplant center at the hospital. All you need is to consult with someone for a half-hour to an hour and set up a routine, then (here's the hard part) stick with it. Personally, I ran three times a week, starting at 8 minutes constant running (jogging) and building up to 20-minute stretches. I also picked out 10 weight machines at the fitness center and started on them. I built slowly, and in the end I dropped four of the ten machines to concentrate on my abs and sides. I had the "luxury" of a year between volunteering and surgery. I wasted half of it, but did get in 6 months of exercise. I was religious about it for four months, then stopped for 6 weeks, then finished with a good month. At the end of the article, you'll see why the exercise was so important.
Now, here are some things about the hospital stay and surgery that they'll never tell you. First, shave yourself. Surgeons only shave your body when they need a good skin surface to attach a monitor. They usually use tape LIBERALLY. They do shave around the incision area, but they still manage to tape over some hairy areas. This is especially important for us furry types of Slavic origin. I'd recommend you shave the back of your hands totally from the narrowest point of the wrist to the area where the fingers branch out. If you can get the surgeon to show you the probable cut line (you always get to visit with the surgeon the day or two before the surgery), shave every hair within six inches of that line, from your belly button to your spine. Shave the inside of your left thigh (I know, NOT having to do this is one of the joys of being male) from about three inches above your knees (the side towards your groin) to the junction with your legs. You CAN leave your pubic hair alone! The thigh-shaving is because of the Foley Catheter.
Speaking of the Foley Catheter, you will have one. It is simple, painless (they insert it while you're under general anesthetic), and works well. They also put it up your urethra into the bladder. Yes, that means in through the penis [shudder]. The distinctive feature of the Foley is that it has an inflatable bulb at the end that goes in first. Once the catheter is in your bladder, they use a special tool to inject a small amount of water to fill the bulb. The bulb is designed so it holds water and still has holes in it to drain the bladder. This way, the Foley can't fall out while you're walking around, and much less tape is necessary to keep it in place. The nurses guard that special tool jealously. You can't just unscrew the cap, let out the water, and remove the catheter yourself. I'm told that one guy tried [ouch!]. Someone will tape the tube of the Foley, about 2-3 inches out of your body, to your leg (and leg hair, if you don't shave it). Getting rid of the catheter is a big step in your recovery; it makes getting around a whole lot easier, and you're not carrying that embarrassing pee bag everywhere. Removing it is the nurse's job. She uses that tool to remove the water from the bulb, then it all but falls out by itself. The sensation isn't one of painÉit's unique. In general, the sooner the catheter is out, the better.
I only had my catheter in for a bit over two days. The only side effect was that it took about a day before I was able to tell how badly I had to go. Once they took the catheter out, I just made it a point of urinating every two hours or so, just to be on the safe side.
What do pain, your bowels, your food, and the Foley Catheter all have in common? They're all linked to your pain drugs. The resident intern looked me in the eye, told me that I couldn't have anything to eat until my bowels made noise (passing gas is an accomplishment!), further told me that the anti-pain medication was "putting my bowels to sleep", encouraged me to get bowel noises, yet STRONGLY recommend I not try to give up or diminish my pain medication. He did not see any contradiction or double-speak in that. Amazing. So, here's the scoop: you can't have your Foley out until you're off (or have cut WAY BACK on) intravenous pain medications (especially the "dope on a rope"). If you have an epidural, you must have it out before the Foley comes out, and before you get food more solid than clear liquids. You can't have any food or large amounts of water by mouth until your bowels make noise, and preferably not until you pass gas. You may not be cleared to leave the hospital until you've had some sort of bowel movement. All pain medication, with the possible exception of Tylenol, inhibits bowel action.
Were I to have it to do over, I would get an enema the morning of surgery. Any waste in your system will turn to concrete in the four (or so) days it takes to get your bowels "awake." It makes for a helluva plug in your system. I think that if you ask, and make just a bit of a fuss about it, they'll do just about anything for you.
If you are on "dope on a rope," which is also known as PCA for "Patient Controlled Anesthetic", you may be able to cut back on the amount of pain medication you use (helping your bowels "wake up") during those times when you're awake during the day and just laying there. The bottom line is to use pain medications only when you need them. If you hurt, take them; if you're not uncomfortable now, wait until you are before administering (or asking for) more. There is no shame in hurting. You will! Anyone who wants to argue can look at that nifty 8-12 inch line of surgical staples in your side.
From out in left field, here's another recommendation: get your hair cut the day before surgery as short as you are willing to wear it. Hair gets oily, and showering is completely out for a while. Sponge baths work (and feel wonderful, so never turn one down, even if you have to do it yourself!), but washing your hair is tough at best, impossible at worst.
Walking is very good. It seems that it's almost a cure-all. The more you walk, the quicker you heal and the better you feel. And the quicker your bowels "wake up." They'll get you out of bed to weigh you as soon as you wake up from the general anesthetic. You'll feel a sense of accomplishment at that, as you curse them for being barbarians. For the first few days, you'll need help getting in and out of bed. The nurses will show you how and help, so you'll be doing it by yourself soon. It's a good idea to have a nurse nearby watching you the first time you get out by yourself, just in case you get dizzy. The first five minutes of walking hurt, because you're stiff and cold (assuming you've just left the warm bed). But after that it gets easy. Don't walk for long periods at a time, or try to do great distances; take lots of short walks. I tried to walk at least once every four hours for about fifteen minutes. The first "long" walk (mine was about 20 yards) may make you nauseated. I dry-heaved and burped.
Sleep is a funny thing. I had very many "micro-sleeps" at first. I'd doze off into some dream, wake up thinking I'd been down for two or three hours, and find it was 8 minutes. For the first three days, I think my longest continuous sleep was 15 minutes. A lot of that was due to sleeping in a "funny" position because of trying to protect the incision. Parts of my body would become numb, which would wake me up. Moving wasn't easy, so it'd take a few minutes to readjust my position and try to doze off again. Being sleepless at night is psychologically difficult. I remedied that by walking a lot at night. The nurses are less busy, and it helps relax both your body and mind. As soon as I was getting out of my bed by myself, I started taking a walk around the ward every two to three hours. The best walks were in the wee hours of the morning, when one particularly helpful nurse would go part way with me and we'd talk.
This part is IMPORTANT. You need at least one helper. When you first come out of the recovery room, your brain is tapioca. The general anesthetic makes you dumber than dirt. Your nurse will be in-and-out, and will constantly be asking you questions, more to find out how lucid you are than because the answers mean anything. My wife was with me, and she relates this conversation:
Nurse: Steve, can you hear me? [long pause] Steve? Can you hear me?
When they first hook up your PCA, you'll forget to use it and YOU'LL HURT. For the first twelve hours (at least) after leaving the recovery room, you need someone to help you. That helper needs to be prepared. When you come into your room from surgery, you look like you've been mugged: your face is puffy; your lips are swollen and bruised, and maybe cracked and a little bloody; and your voice is hollow and raspy. That all comes from the breathing tube you have in you while in surgery. At first, you can't have water, but you can have a few chips of ice. The problem is that you're hooked up to IV's and you couldn't think your way to feed yourself if you wanted. Your helper can feed you the ice (nurses are caring for up to five patients at once, so you won't have one around all the time). Having some sort of lip balm will help a lot. Your helper can also remind you to CONSIDER using your pain medication. As I said, your brain is tapioca; you're in a daze. Your helper should not administer the pain medication for you, but roust you enough to let you do it yourself, if you want it.
Your helper also needs to provide some physical touches. Most people don't want to touch the patient because they're afraid of hurting them. Especially now, when you're groggy and hurting, you NEED someone to touch you. My wife reports that I'd sometimes thrash my head around, as if I were in pain (which I probably was; I don't remember). She'd run her fingers through my hair or put a hand on my chest and ask me if I wanted pain medication. That soothed me to where I could become lucid enough to hit the button on the PCA.
And don't expect one helper to pull 12 hours duty. That's an emotional hell. They see you hurting and basically helpless. They need time off. But, as bad as it looks when you come out of the recovery room, within about 12-24 hours you're completely off the general anesthetic and back in the land of the living.
OK, that's all for my insights. Here's my timeline and what I did. First of all, I probably had a huge advantage over you because I had that lead-time to spend half a year exercising, so take my unfair head start into account. At the time of surgery, I was 35 years 9 months old. I'm 6 feet tall and weighed about 175-177 lbs.
Here's how my time in the hospital went:
Surgery was Wednesday at 8:30 AM, with the incision made at about 9 AM and me wheeled into the recovery room at about 11:30 AM. I was conscious and in my hospital room about 1:30 PM, when they got me up for weighing. The "tapioca brain" lasted until about 3 PM, I think.
Thursday at 7 AM they got me up for weighing again, and I walked to the door and back to the bed.
Friday at 7 AM was the next weigh-in, after which I walked about 20 yards into the ward and back. Friday at about 10 AM I took my first "around the whole ward" walk, and did three more that day, with the last one being "around the floor" (there were four wards on the floor, I guess the distance was about 300 yards for once around the floor). I was on a diet of clear liquids.
Saturday at 3:30 AM I got out of bed unsupervised for the first time, and walked around the floor. Saturday was a good day: I did four "once around the floor" walks and two "twice around" walks all before 5 PM. Saturday just before noon I lost the Foley Catheter! Saturday evening about 5 PM I got rid of the final IV. I got a liquid supper (milk and soup).
Sunday morning I talked my nurse into accompanying me up and down stairs. We walked from the 4th floor down to the 3rd, then back up to the 4th. That really wowed the doctors later that day! I got my first step up the food chain, from nothing but ice chips to a clear liquid diet (which includes popsicles!) for supper Friday, and got that bumped to any liquids (which include milk and creamed soups) for supper Saturday. Sunday afternoon I was OK'd for a general diet (top rung!).
I was discharged, walking out, not in a wheelchair, Monday at 1 PM.
Print this and take it with you. Show your doctors/nurses, and let them tell you what's best for you, then evaluate your own body and it's reactions and do what's best for you. Doctors tend to reiterate the party line like a mantra; nurses will customize their answer to you. Always be nice to the nurses! Don't patronize them. Don't let your testosterone get in the way of letting them help you. You need it! Don't be whiny and ring them to get your pillow fluffed. Do ask for water or ice chips. Tell them where it hurts; macho ain't gonna heal you sooner.