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A Letter To Potential Donors

For anyone who thinks that we are pushing people into donating kidneys, please read this article, prepared by Christine (a trained nurse who graduated at the top of her class).  She wrote it just after she had finished caring for Robin and Casey during and after their donation, in 2002.  The letter has been sent to any of our members who have expressed an interest in donating a kidney. It makes the reality check that the hospitals give look like a snow-job by comparison. We would like more people to donate kidneys, but we do not believe it should be done naively. Read this if YOU are considering such a donation as well.

Email Subject: To possible kidney donors from Chris, March 23rd

I just wanted to write to you and give you a better idea of what to expect with the transplant operation etc. now that it's looking more likely that some of you may go ahead with it.

Robin and Casey had a day of tests before the operation. They were not allowed to eat breakfast on that day and were told they could not eat until the tests were all over. They did blood tests (including a cross match with the recipient), urinalyses, chest x-rays, ECG (or EKG, same thing) and then did a test to see how many blood vessels their kidneys had. In the past hospitals used to do arteriograms. That means that they insert a tiny tube (catheter) into an artery in your thigh and thread it around until it gets to your kidney. Then they release a dye which shows up on an x-ray. The problem with the arteriogram is that afterwards you have to lie on a bed for 4-5 hours to allow the artery to heal properly. So it's a real hassle. Fortunately, Robin and Casey didn't have to do that test. They have a new system now, using a cat scan (3D x-ray). They just insert a dye into a drip in your hand and lay you down on a table which moves forward and backwards through a circle in a big machine. The circle has a rotating device in it which must be the x-ray. You have to hold your breath for quite a few seconds at a time each time they run you through the x-ray. They'll tell you when you can breathe and when you cannot. The purpose of the arteriogram or the cat scan is to see how many blood vessels your kidney has and how it's located in your pelvis.  (Each person is different.) If you have a lot of vessels, it complicates the surgery and they may not go ahead with the operation. And they will decide on the basis of this information, whether they can do it with a regular laparoscopic operation or whether they have to do a big cut. And they'll decide whether to take out your left or your right kidney (left is more common).

After the tests were done (on the day before the operation) Robin and Casey were allowed to eat a non-fatty lunch (salad), but then they were only allowed to eat clear liquids (black tea, chicken broth, apple juice) for dinner. That was a bit hard to do because they were both feeling very hungry.

The evening before the operation they were given a big jug of a laxative medicine to drink. It was called Go-lytely. They had to drink a total of two litres, drinking a cup at a time each ten minutes. In addition to this they had to drink a gallon of regular water (to prevent themselves from getting dehydrated). They were not allowed to eat or drink anything else from then onwards. The medicine was not very nice to drink. Then they were off to the toilet every half hour or so with diarrhoea. It's not very pleasant. The idea is to clear out the bowel so that you won't have to go to the toilet after the operation. You have two problems that happen with going to the toilet after the operation. You get cramps in your bowel because it has been moved around and the peristalsis gets confused. It takes a while for the peristalsis to go back to normal. Also, the bowel tends to be lazy because the anaesthetic makes it sleepy, which means that if you have food in your bowel, it will get all constipated. The pain medicine also slows down the bowel. So the Go-lytely medicine cleans the bowel out completely and prevents these two problems. They want you to keep going to the toilet until your poo is watery (nothing solid). It doesn't matter what colour it is.

You are not allowed to eat or drink anything eight hours before the operation. If you didn't drink enough water with the Go-lytely the night before, you'll be feeling dehydrated by the time of the operation.

On the day of the operation they'll have you put on a gown with nothing on underneath and they'll put in an IV drip. They'll ask questions to make sure you know what you're doing and get you to sign consent forms. They may get you to put on elastic stockings to help with circulation in your legs (since you'll be spending a lot of time in bed). They'll probably give you a sedative to relax you (through the drip) before they wheel you in to see the anaesthetist. The anaesthetist will put the anaesthetic in your drip. It's supposed to feel really cold in your hand as it goes in. The operation will probably last for 5-6 hours, but it will probably seem to you like it took no time at all, because you feel like you wake up two seconds after you go to sleep.

Nevertheless, while you're under the anaesthetic, they will put a urinary catheter in. After the operation they take you into a recovery room, where you will come out of the anaesthetic. Some people find it is really disorientating and are afraid at first. The panic usually only lasts for a little while though, just as you're coming out of the anaesthetic. You'll probably have a lot of monitors around you and beeping noises. You may or may not feel a lot of pain at that time. (Casey did, Rob didn't.) You'll probably feel very sleepy. They may keep you in the recovery room for an hour and then have someone wheel you in your bed to the ward. You will probably only see the person who is accompanying you when you reach the ward. They transfer you to a regular bed and the nurses will fuss over you a bit to see that you're okay.

The two first issues that will come up will be pain and nausea. If you feel nauseous, make sure you tell the nurses quickly, because vomitting is VERY painful on your stomach. They can give you an injection to help with the nausea, although it may not fully go away.

Pain relief is really tricky to get right. If you are lucky they will give you a self-administered pain relief pump. Pay attention to the instructions they give you if they do give you a pump. Find out how often they recommend you use the pump and follow that advice as much as you can. They're usually small doses, and Robin and Casey were told the maximum they could get out of it was four hits an hour (on average I think they used it twice an hour). Yours could be quite different. If you don't get a self-administered pump, then it means they will probably only be able to give you a pain injection every four hours. It will be really good for the first two hours but will start wearing off for the last two.

You want to have enough pain relief to generally feel comfortable. If the pain gets to the point where you're feeling quite tense, then you've let the pain build up too much and then it's much harder to get rid of. It's better to prevent it getting that bad. The pain relief will also make you feel sleepy (and perhaps nauseous). For the first few hours you will want to do a lot of sleeping, but after that you probably shouldn't drug yourself out so much. You need to start doing some activities (moving around in the bed, doing a little bit of walking) as that will help in your recovery. You'll also need to do some deep breathing exercises (taking long slow deep breaths, followed by some gentle coughing) to clear out your lungs and prevent yourself getting a chest infection. It's painful to do, so you want to do it shortly after taking the pain medication.

The nurses will be watching your urine output very closely (in your catheter bag) to make sure your remaining kidney is working okay. When they are confident that it's working okay, they will take the catheter out. But they will still want you to measure your urine in a urine bottle to keep an eye on things. Sometimes after having a catheter people have trouble urinating. Robin couldn't go and had to have a catheter put back in for a little while. It's embarrassing, but a relief, because it's painful to have a full bladder.

I'm not sure exactly what your wound will look like and if they'll be changing the dressing regularly on it, removing stitches or what. It could vary a lot. Robin and Casey had no external stitches, so didn't have to have any stitches removed (the internal ones dissolve by themselves over time). They also had a piece of see-through tape over the wound on their abdomin (put on before they left the operating theatre), and left that on for about ten days, so they didn't have to have their wounds washed. There is a possibility that you could have a drainage tube coming out of the wound site, which allows blood and fluid to drain into a bag. Robin and Casey didn't have that.

Robin and Casey had three incisions. They had one in the centre of the abdomen below their belly buttons going up and down that was about 4 inches long. Then they had two small 1 inch incisions. One was to the left of the main incision and the other was to the right.

The IV drip could be a problem for you. Casey's drip managed to last okay for the whole hospital stay, but Robin had to have his redone twice. That was because the wall of the veins became damaged and IV fluid started leaking into the surrounding tissue. It was a bit painful and even hurts Robin a little bit now (one month after the operation).

Usually after an abdominal operation you get a little bit of fluid building up around the internal spots that have been cut. Gravity will make the fluid go down in the pelvis, and in a guy, the fluid often then goes into the scrotum, since there is a little opening between the scrotum and the pelvis. The scrotal swelling can get quite bad and uncomfortable (and it takes weeks to go down). If that happens, the best thing to do is to put something (like a rolled up towel) between your legs while you're in bed to raise the scrotum so that the fluid can drain back into the pelvis. An ice pack on the scrotum can also reduce the swelling. It helps to be warned about it beforehand!

You will have to keep fasting (partially) for one or two days after the operation. At first your mouth is really dry and they may allow you to suck on ice or take tiny sips of water just to keep your mouth moist. Gradually they will allow you to drink bigger sips. They want to be sure that your bowel's peristalsis is working properly before they allow you to eat properly. They will listen to your stomach with a stethoscope to see if they can hear normal bowel sounds. They will also ask if you have farted, as that is a sign that your bowel is working properly. At some point they will allow you to "eat" and drink clear fluids like jelly, tea, chicken broth, juice and some types of frozen desserts. Eventually they will allow you to eat solid food, when they are happy that your bowel is working okay. You will feel starved and want to hoe into it, but try hard to hold yourself back. Too much all at once can be very painful. Try eating light non-fatty foods like salad and fruit for a couple of days at first, then gradually increase it. Drink PLENTY of fluids as that will help your kidney as well as prevent possible constipation. Once the hospital staff is satisfied that you're eating and drinking and urinating normally, they will discharge you from the hospital.

They will probably give you some medication to take home with you. It will probably be a combination of pain tablets, laxatives and antibiotics.

If your stomach is not working properly you will know about it pretty quickly. I think it's normal to burp a lot with a sleepy bowel. You can expect that. But if your bowel is not working it feels like you have a block of food sitting in your stomach going nowhere. (It feels like that, because that is exactly what is happening). You won't want to eat and it will become very painful. If that happens you need to go back to hospital and have an enema. An enema is where they lie you on your side in a bed and put a tube into your rectum and push it in a couple of inches. The tube is connected to a bag of clear jelly which will flow into your backside. You'll be tempted to go to the toilet straightaway, (because the jelly is uncomfortable), but you have to hang on as long as possible to allow the medicine in the jelly to do it's job. When you can't hold on any longer you hop on the commode and go to your heart's content. :-) It's such a relief that embarrassment doesn't really become an issue.

The only other thing I can think to warn you about is a feeling of loss of control. If you're a type A personality and used to getting things done and getting them done quickly, then you're likely to become impatient and frustrated with the nurses and your helper from the community. I think it will help to just think of it as a holiday and remind yourself that you have all the time in the world, and then it won't be so frustrating. Things will get done eventually, but they can't always happen immediately. You'll also find that you overestimate how much you can do, because one moment you feel fine, and the next moment you feel totally wiped out. So take things in small bites. You'll find that this pattern continues throughout your recovery. It really will take six weeks for you to feel normal again.

Robin also found out some interesting information. The nephrologist said that when they take a left kidney from a male, they usually cut the main vein to the left testes (and sometimes the artery). That's generally not a problem, providing you don't have a vasectomy. But if you have a vasectomy you cut off the backup blood supply to the left testicle and that testicle may shrivel up and die! It's supposed to be quite painful. So any male thinking of donating a kidney who has had or is thinking he might have a vasectomy in the future, needs to make this clear to the surgeon and discuss the risks and possible alternatives.

Well I hope this is a help. Good luck.

Love from Christine

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