Making your transplant last longer

[cykid]

I know there is no universal recipe, and every person has it's own evolution, but there's got to be some general lines that would help prolonging your transplant. Besides, I don't even have 3 years since my transplant so I may be off the line.
While medically speaking there are many genetic factors, a healthy diet and lifestyle would definitely help here. There are suggestions that a short organ life could be attributed to diabetes (which may latter appear as a "bonus" in transplanted subjects), cholesterol (seems to be the main factor) and slow rejection (the speed depends on individuals).

My general lines I'm following are these:

SALT: absolutely no salt, at all. If sugar is the pancreas killer, fat is the heart killer, alcohol is the liver's cruelest beast, then salt hates kidneys for sure. That is, no salt in bread (bake it yourself if you can't buy it), no salt in food, when you see salty foods such as sea fruits, canned meat, salty chips, whatever salty run as Forest Gump. It also means simply put that salt is an item you should never buy anymore. Don't worry, you'll never risk Na depletion. When in the hospital, just a few hours after the doctor faced me with the cruel reality that came as a shock (dialysis or transplant) I was put in a the same room with a guy who had his transplanted kidney failed after 19 years. He totally left the salt behind after the transplant, and his positive way of seeing the life definitely put a mark on my way of fighting the reality.

WATER: at LEAST 2 liters/day. While arguably, more water makes kidney's life easier: they need water to work just as the lungs need air and your car runs on gas. The more the better, using common sense (yes, 4 liters is probably an overkill unless you are living in the Death Valley. Then you need more water  ). To the most of the transplanted people it looks really bad to drink lots of water as they were asked before to do exactly the opposite. My general line about drinking water is this: if my pee is too yellow and smelly, I didn't drink enough. It should be pale yellow. Drinking enough water also helps keeping the urinary infections away.
One funny side note: when in the hospital after being discovered with ESRD, I was in the same room with another guy who had a transplant done 2 weeks before. He was very proud of his urine which he promptly shown me. Well, however sick it may sound, I felt for the first time in my life envy. Urine envy.

SUGAR: the less the better, for people with high glucose levels at least. The risk of drug-induced diabetes is fairly high, so why making it worse? While on this, one of the stuff you should never touch is coke. Not the dusty kind, but the sweet, liquid, delicious and bone pain inducer due to the phosphoric acid. So no sodas.

FATS: cholesterol is dangerous for everyone, but even more to us. There are studies (I'll put some links if asked to) suggesting it's the worse factor for a transplanted kidney, even more so then a high protein diet. You already know: say no to those tasty pork ribs, don't eat the chicken’s skin, use low fat cream, low fat milk, better stop using butter etc.

LIFE STYLE: I have a very active life, so active that it was me who decided when to do the transplant. The donor (my dad)  was long before prepared, but I still had "work to do". I feel so ashamed now, as I have a friend who's been in dialysis for 11 years (he's 35 now) and although he finally found a donor, the kidney won't start (and it's been a month since he did the transplant; he's still on dialysis).
I'm still living the heck out of my life, but I guess that someone who keeps complaining about the issues doesn't enjoy the life enough. We should be grateful just for the fact that being born 50-60 years before we would have long been dead and buried. A positive attitude must be a key to the happiness, but I'm not going to reinvent the wheel here: it's rather clear for everyone that attitude is the key when fighting a disease.

MEDICATION: Never, under any circumstances forget to take your meds. There's a high danger of triggering an rejection, and it will affect the already unstable balance we are living on. It really is a fragile equilibrium, since a simple flu can create havoc in the organism.
One of my "transplant related" nightmare is that I wake up in the morning only to realize I forgot to take the pills in the evening. I wake up scared, and I remember I actually took them. This happens at least once per month.

BLOOD PRESSURE: in most of the kidney transplanted blood pressure continues to be a problem. Controlling it is a must since we all know high blood pressure kills the kidneys by squeezing the nephrons to death. A healthy life (which includes some form of exercise!) helps besides those pills.


Am I wrong? Any more thoughts? I'm interested to hear stories especially from people who hand working organs for at least 10 years.

[cariad]

I certainly cannot say you are wrong, cykid. I think you might be overdoing it a bit in places, but if it works for you, stay the course.

OK, I was very, very young when I was first transplanted, my first lasted 34 years almost to the day, and I had a preemptive live-donor transplant two months ago. For the first year after my transplant in 1976, my parents had me on a strict low-sodium diet. It left me with a lifelong craving for salt, which I never limited once I had the choice. My blood pressure never went very high (well, it did when I was pre-transplant the first time, but never since). I needed only the lightest weight of blood pressure meds (Inderal) and even that did not seem to be necessary. After my second, my sodium was too low as was my blood pressure. I had to be hospitalized and infused with saline because of this issue, and I think the surgeon became a little frustrated because he would constantly say "eat some salty chips or something" but I did not have the appetite. I eventually found out that my mother requires extra salt and has low blood pressure, so I believe this is genetic. Low blood pressure caused another kidney recipient in my transplant program to lose his graft after only three months (the transplant clotted off). I try to keep my fluid intake way up, as you suggested, for just this reason. When I return to the centre and my blood pressure is too low, there will be a saline infusion in my future.

Sugar - not an issue. Never monitored it, spent decades on low doses of prednisone and have no diabetes. I am not really a sugar person, though. I rarely crave anything sweet, and tire of desserts - even lovely, lovely ones - very quickly.

Fats I don't monitor either and have never been told my cholesterol is a problem. It really depends on the type of fat. High fat fish is very good for your transplant, I'm told. I am a vegetarian and have been for 25 years, so I wouldn't even know how those "tasty" (I'll have to take your word for it!) pork ribs affect me. I don't drink milk (don't like it) but get between me and my butter, full-fat cheese, or cream at your own peril.

I used to skip meds constantly. I even abused them briefly when I began my anorexia nervosa career (I used to take hydrodiural and would pop five instead of one because I just wanted that number on the scale to go down. I was 12 and the thought that this might be dangerous never entered my mind. Shortly after this, the doctors stopped the prescription altogether.) Forget taking prednisone - I knew perfectly well that THAT was not the road to weight loss. I really did this in the worst possible way, in retrospect, because it probably would have been better to just stop them than do the stop/start which can increase PRA, kill you in the case of prednisone, and harm the transplant. While I have not missed a single dose of medication since my second transplant, I believe that the type of anxiety that you describe surrounding your meds is also extremely detrimental to your health. Try to relax. If you do by chance forget a dose of meds, you should have instructions on how to rectify this, or hopefully you can just page the on-call at your centre.

Exercise - yes, yes, yes!!!! Keep active because it reduces stress, makes you feel good, increases stamina, and is simply a world of fun. I cannot possibly overstate the benefits of exercise, but that's true for the wide world over. Stay hydrated though!!!

Oh, I drink one diet Coke a day, and have even walked into the centre holding my bottle. I have never been told it is a problem, and I consider it medicinal. That is not a joke for me. It is the only thing that helps me keep migraines at bay. I don't even particularly like the stuff anymore, I just know I seem to need it.

I'm certain this didn't really help you at all, but there it is. Wishing you a long and happy relationship with your kidney.

[monrein]

My first transplant (cadaveric) lasted 23 years and I will say that I agree with your guidelines almost to the letter although I've not always been totally compliant with them.  Salt I have watched but did relax the no salt at all idea after a few years with the first transplant.  Now with the second I plan to remain consistently low salt but not entirely no salt.  I exercise consistently and quite a bit.   I watch sugar and although I enjoy sweets, your point about med induced diabetes is a good one.  I watch it mostly to avoid weight gain and inflammation.  I use natural honey or maple syrup and steer away from white sugar.  I eat lots of fibre, veggies and fruit and steer clear of white flour or white rice as much as I possibly can.  My one rule however is not to be rude or stupid if invited out to someone's home. I limit red meat and avoid processed foods and fast foods of all kinds.  I aim for 3 liters of water a day, only one cup of coffee (always followed by a glass of water) and I drink some tea too.  My cholesterol has slowly crept higher as I get older and especially the triglycerides.  My neph has said that my diet and exercise contribution to things is excellent and is not in any way to blame but rather, the cholesterol issue is in fact a side effect of the anti-rejection meds.  I take fish oil daily and a low dose of statins.  My naturopath has talked about doing a serum omega 3 test (I'd never heard of this till recently) to see if I'm in fact absorbing enough of the fish oil.  I also eat a good amount of salmon and I add in some tinned sardines every now and then (I rinse them to reduce salt and oil).   I do try to include good oils like raw olive oil and avocados in my diet as well as raw nuts and raw then toasted at home nuts.
Never drink coke or any other sodas (occasionally drink no sodium soda water with lime juice in the summer) which is easy since I love water.

Also I think it's key to attend all appointments including dentist, dermatologist, gynecologist, mammograms, bone density tests (I take actonel for osteoporosis and lift weights as part of my exercise routine) nephrologist and anything else that might come up.  Never skip blood work appointments and make sure to understand the values,  what they mean and ask questions about what can be done to correct any that are out of line.  I check my blood pressure regularly and try to make sure I get enough sleep.

At first it all seems overwhelming and like a full time job but it gets easier and I like the feeling that I'm holding up my end of the bargain in caring for this incredible gift I've received not just once but twice.

[cykid]

Thank you so much for your answers; I'm starting to see the light here.

Although not vegetarian (yet) I suspected for a longtime that such a diet can only help. The proteins are easier to absorb, and the amount of bad fats is greatly reduced. I don't eat too much meat now, and I guess I'll drop it all in all. I know what is like (I did this for 2 years longtime before my kidney problems) and it's not a crime. I guess fish will stay on the menu though. BTW, is fish a vegetable?  )

I don't get enough sleep for sure. Having 2 small kids driving me nuts, working at home mostly, and when away having short nights (4-6 hours of sleeping/24 hours) for a few days in a row won't help too much for sure. I really have to do some spring time cleaning in my life.


Any more thoughts are greatly appreciated.

[monrein]

I don't plan on becoming vegetarian since I do enjoy meat and it is a good source of high quality protein but I just don't eat great hunks of it and will use it more as an enhancer with lots of veggies.  I use lean cuts and try for antibiotic free and as organic as possible...that stuff is costly so that keeps the quantities down for sure also.  I am especially fond of the flavour of lamb so I'll make a big pot of stew or curry using just four to six shoulder chops for about 12-14 servings. 

Meds are like brushing my teeth or washing my face...happens twice a day, every day, no matter what.  If I manage to forget them (like the time I went to the cottage and left them at home) I leave wherever I am to get them into me.  I've been a couple hours late on occasion but that's it.

[RichardMEL]

This thread is interesting for me. I'm not transplanted yet, and no idea when, but I do have some plans for that time when it happens so I like to read this sort of stuff to try and prepare myself.

One thing I do know is that transplant, while it represents a whole level of freedom compared to what I have with dialysis, it also means different things to observe and be smart about, like the meds, exercise, water etc. I plan to be as careful with that as I am now.

I dream of the day I have a 2L bottle of water in my fridge and that if it's not finished by the end of the day I know I've done bad. However I also love hot tea, and other drinks that I've had to limit heavily lately - I think all in moderation really. I see no problem potentially with a chocolate milk, latte or a coke, if I keep that water up.

Exercise is a no brainer. I already walk a lot, so I plan to keep that up (just accounting for the sun a lot more with hats and sunscreen etc). I have gotten into a routine so I think I'd actually miss it now and I definitely want to keep it going. At least post transplant I can drink more while I'm walking, which would help. I nice refershing cold water or juice sounds great.

I do worry about post-transplant diabetes, and I am just the sort of person that would wind up with that - just because it seems I always end up with something to deal with. I do like my sweets, but certainly I would keep an eye on labs and follow any recommendations to keep that, and the cholesterol in check. Mine's been going down the last six or so months which is a wonderful surprise to me

I also am aware that alcohol is an issue and that spirits are probably out, the odd beer might be OK. I must admit I DO look forward to the chance to share a beer on Friday with my workmates, but if that has to be limited - so be it - I can handle that. If I have one beer and two waters, that works just fine for me. Better than sitting there watching them down a jug drinking nothing!!!

Thanks for this thread!

[cariad]

If giving up meat is not too much of a hardship for you, then becoming a pescetarian (vegetarian who also eats fish) would certainly not do you any harm. I see you're from Romania, so not sure what is available there or what the farming practices are, but try to get wild-caught. Also, for eggs and dairy and anything else you choose to keep eating, try to get these products from animals that receive NO hormones nor antibiotics. I once heard a statistic that 80% of antibiotics in the US go to livestock. Overexposure to antibiotics creates drug-resistant bacteria, and can cause allergy. (I am allergic to two different antibiotic classes.) Try to avoid getting extra meds from your food.

Please do be careful about limiting your salt too strictly. That combined with heavy water intake can in fact be dangerous, even deadly. The medical term is hyponatremia if you want to read more about it. Having had this problem immediately after I was discharged from the hospital, I can tell you it is not a desirable state of affairs.

Also, don't forget to have fun! Remember the Oscar Wilde quote "Everything in moderation, including moderation."

[jbeany]

I also am aware that alcohol is an issue and that spirits are probably out, the odd beer might be OK. I must admit I DO look forward to the chance to share a beer on Friday with my workmates, but if that has to be limited - so be it - I can handle that. If I have one beer and two waters, that works just fine for me. Better than sitting there watching them down a jug drinking nothing!!!

Believe me, Richard, it's soooo much easier to say "no" when you really could have it if you want it. My docs never made any fuss about alcohol after transplant, though.  All things in moderation was their rule - and they were a lot more worried about the salty peanuts and pretzels on the bar than the booze being served from behind it.

[natnnnat]

Gregory has had his transplant 19 years, and I reckon I can answer this question without even consulting him.  But I'll type this up, then show it to him and add his comments.
Let me see.

SALT: Gregory eats a very little bit of salt, in that when we got together, he asked me to add a bit to the water when I did the veggies.  I didn't put salt in at all till then.  But he doesn't add it to food after cooking.  He wont go near R*d Ro*ster (are we allowed to mention brand names in here?), he says, "would you like a little chicken with your salt?".   When we have pizza for tea, we both notice the salt later, in that we both get endlessly thirsty.

WATER:  Gregory drinks lots of water.  (Urine envy!  hee hee hee!)  He often comments about the satisfaction of peeing.  He used to be a major coke addict, as in, the hideous black fizzy brew that cleans coins and clears your plumbing.  Back when he was an 18 year old concreter, we are talking 2, 3 litres a day?  Back before his kidneys failed (Anyone know if there's a connection?  He was never told why his kidneys failed... just wondering).  When I met him (post transplant) he was on some quantity of diet coke a day, 1 or 2 cans. (Gregory laughs.  5 or 6 on a cold day.  In summer, about 8 cans a day) Having been loved up by me (what?  Nagged?  No way!) he gave up diet coke cold turkey for a year, and now is back on one or two sneaky ones a week. (significant pause) He says, "I don't drink alcohol, I don't smoke, I don't drink coffee, I could do way worse..."  He drinks lots of water (about three litres a day, at least  I was always told to drink water cos it flushes the kidney, keeps it going).  Meinuk mentioned drinking coffee with a water chaser:  my friend James, who had a kidney transplant which lasted maybe 10 years, he always did that, I remember.  He looved his coffee and had one or two a day, from selected baristas, and always with a water chaser.  As described by RichardMEL, James used to very carefully drink the best beer he could find, sparingly, and with a water chaser.  Or the finest whiskey he could locate, again, sparingly, and with a water chaser.

SUGAR: Well, the problem here is that Gregory loves cheesecake.  And cupcakes.  I haven't actually noticed any kind of sugar policy in the life of Gregory. but i'm allowed to eat sugar.  I'm not allowed to eat salt, but i'm allowed to eat sugar.  But I have to keep my weight down because too much weight the heigher my blood pressure gets, and that puts pressure on the kidney.  Adrenal gland, goes into the kidney

FATS: Gregory avoids coconut milk and avocados, but that might be because he has an unadventurous palate (lets see if he lets me leave that in!)  He doesn't seem to have an express policy about fats but no wait, he eats toast with honey and no butter, he doesn't put butter or margerine on his sandwiches.  I think that is not so much to avoid fats, as to avoid becoming fat.  See below.  yes, i was put on a diet by the renal dietician, who told mee no butter, no orange juice, no white bread, because all of these are too fattening

LIFE STYLE: Gregory excercises religiously:  he is a walker.  He walks 40mins to an hour each day, through rain and high weather.  Its good, I go with him and we get "together time" that way.  Clears the head.  I lost some weight.  He's a tall thin looking thing, but he reckons he used to be bigger.  He lost the weight with careful dieting and daily walking.  He says it keeps everything else working.  He needs knee surgery yet he still goes walking... the knee surgeon said walking is alright for the knee, in fact it keeps it working.  But you know if it was me, maybe I'd take the knee as an excuse to lay off the walking.  Not Gregory. after the tranplant i got to 111 kg and 6 months later i was 85 kilos.  I was put on a diet by the renal dietician because my blood pressure was too high, because of the weight.  but that was because I couldn't eat anything for five years, I put on so much weight after the transplant.  suddenly I could eat and I just went bloody mental with the food... when you can't have hamburgers for five years, suddenly you can, you have them, every day.

MEDICATION:  Cykid said, "Never, under any circumstances forget to take your meds."  That sounds like Gregory. He tells the story of a friend who rebelled against taking meds every day, who said "I don't have to take my meds on Sundays".  He ended up back on dialysis. Yet amazingly, when I ask Gregory how long his kidney lasted, he replied about 14 years.  At anyrate Gregory insists that taking his meds regularly is vital.  He is on prednisalone, bettaloc and cellcept.   He also takes caltrate with D, and an odorless fishoil tablet.  One of the three, and I don't know which it is, he can't go without more than about half a day.  He gets run down, quite quickly. if I forget the prednisalone, its like having renal failure.  Except not as bad...    The others, he can get through the day, come home and take them then.  Sometimes he "forgets" to fill one of his prescriptions and has to make a mad dash across town on the ebb.    

BLOOD PRESSURE: Don't know about this one.  Last time he saw his neph, he was asked to keep track of his blood pressure at home.  He went to his mum's and picked up an old blood pressure kit he had stashed there.  It seems to have a hole in it.  Must ask him what we're going to do about that.  My sphygmomanometer...  (he pulled it out of the box, and look!  it has a brand on it:  HEALTHJOY.)

The man himself is watching Mythbusters.  May as well post this and fix it later with his commentary.  No wait, its just finished.  Note that the italics are Gregory, and I typed what he said as he roamed about from room to room, to its not always well composed...

[jbeany]

Electrician's tape works wonders for holes in the rubber tubes on blood pressure meters.  (My cat likes to chew on mine, whenever I forget to put it out of reach of her fuzzy little self.)