I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: tyefly on July 31, 2009, 11:12:59 AM
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I was wondering about activities after a transplant.... someone had told me that we should not do certain things llike gardening ..... I love gardening and have a green house and do many things with plants.... plus I something was said about fish .... I have several Aquariums and I have to maintain those.. what about pets.... I do have two dogs... swimming in a lake??? River.... I like to fish for salmon and steelhead, touching those would be bad...???
Where can I find a list or more information about what we cannot do after a transplant... I would sure like to know up front... I realize sometimes we need to make changes ,,,,, but I love playing in the dirt.... any info please......
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After a transplant, preventing infection is mostly common sense. Protect yourself by following these simple guidelines:
* Wash your hands with soap and water often to remove bacteria and viruses; keep your hands away from your face and mouth. You should wash your hands when you come in from outdoors, before you prepare food, before you eat, after working with papers, after cleaning, and after using the bathroom.
* When you cough or sneeze, use tissues, dispose of them immediately, and wash your hands.
* If someone you know has a cold or the flu, avoid close contact. Don't hesitate to tell your friends about your special situation and ask that they postpone visiting when they are ill.
* Shower instead of bathe and practice good personal hygiene.
* Maintain a well-balanced diet. Wash before and after handling food. You can even use a small amount of soap when cleaning fruits and vegetables. Avoid raw eggs, raw shellfish, and raw meats; they can harbor bacteria. Keep hot foods hot, and cold foods cold. Don't eat foods whose freshness is in question.
* It's fine to live with pets, but you must be able to delegate cleaning the birdcage, changing the cat's litter, and cleaning up after the dog to someone else. You should always wash your hands after handling your pets and especially before eating.
* Avoid stagnant water because it too harbors bacteria. This includes denture cups, flower vases, soap dishes, and fresh water ponds. Swimming in chlorinated pools is permitted.
* Wear gloves when gardening and, again, wash your hands thoroughly when done.
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I am 9 months post transplant. I do everything I did prior to transplant...including fish! Don't give up on those steelhead...they are the most fun fish I have ever caught. I ALWAYS carry hand sanitizer with me, I avoid sick people and wash my hands more than one can imagine.
I have had one 24 hour stomach virus since Tx but other than that nothing, not even my typical winter cold.
I still garden and have flower beds, kept my dog..though I gave up my bird (a bit more risk than I was willing to take).
The way I look at it...I must be "careful" not "paranoid". Keeping up on hygiene and wash wash wash those hands.
Oh yeah.....I gave up rare steak....now eat it medium well. :flower;
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I was told:
- no gardening for the first three months. After that I have to wear gloves and a mask if I'm digging in dirt and such.
- no new pets for the first year.
- avoid close contact with other peoples pets for the first year. Of course, wash your hands after petting animals.
- not to clean up after my pet for the first three months. After that wear gloves.
- never to own birds.
- not to mess with litter boxes.
- no hot tubs.
- no raw/rare meat.
- no raw fish.
- no raw cookie dough (whaaaa!)
I didn't hear anything about owning fish.
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I do everything i did b4 tx...just wash hands more often and carry sanitizer .I was a little particular first couple months. Dont give up on things you enjoy doing.As for green house just wear a mask for first little bit.I enjoy dirt track racing i go to everyone i get a chance to.Hope this helps. God Bless!! Chris
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I did have birds for a few years 2 years post tx and didn't have a problem. My dad use to breed canaries and I use to feed them and kept one as a pet. However no replacement for the parrot I use to have. He also bred fish, but now has 2 big tanks, one for Oscar's and the other for less aggressive fish ( I don't care for fish, so not around them anyway).I also went to school and worked with animals for the veterinary tech program at my college, again no problems there. Seems I have had more problems not doing things I like to do or be around.
My transplant center did know about this also, I just had to take precautions. Don't give up, be sure to tell your center what you do and that you may not have help doing so they can give you more advice.
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I think the biggest thing my doctors and clinic stressed hand washing and keeping your hands away from your face (eyes and mouth in particular). All the other stuff is probably precautionary, but just use your common sense.
I had asked when I could go places like the mall and out to eat. He said to go whenever I felt up to it and I could walk without being pain. He stay away from people who are coughing, sneezing, runny nose, etc. (obviously sick) and don't run your hands up and down the escalator handle and such and then put them in your mouth. Again, common sense.
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Forgot about cats!
Wear Gloves and mask. Any cuts, neosporine it and cover it up. After cleaning, change clothes and wash up.
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I can't believe it! No Hot tubs after transplant? Are you serious? So even if I am allowed a transplant one day, I still won't be able to go to the hot pools in Taupo. For goodness sake - I don't know if I'll bother! Are you really not supposed to even have a bath?
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I have gone a couple times and haven't had a problem. I only stay in for 10 minutes then jump in the pool and did some laps, got out started freezing and set the timer to the hot tub to turn on and got right back in. They are relaxing and made my back feel beter at the time. My back did not hurt all that time while on vacation.
Maybe I was in a jacuzzi though, it had bubbles with hot water?
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Oh thank goodness Chris - so I can break all the rules like I do now? That's ok then lol.
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My doc told me no PUBLIC hot tubs...so I guess when I get an urge, I'm gonna have to buy one!
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It say's that in my transplant book too, but how many people actually own their own pool/ hot tub out side of Arizona subdivision that I know of that they all have their own pool and hot tub. Small, but their own. The pool and hot tub I used at the hotel wasn't used when I was there, so I did take the risk to have some enjoyment. I like swimming though and want to when I can. While in physical therapy when doing pool exercises, we all wear shoes and it feels odd though. Not regular shes, people wear sandles and other lightweight types. Go swimming now and al I will be doing is swimming in circles like a fish dying in the tank.
I think you just have to reduce your risk as much as possible and shower afterwards. No swimming with any type of cut or wound anywhere on you. The question that comes to mind is which is safer, a pool or a body of open water like the ocean, lake, river?
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Tons of folks around here own both....pools for summer, hot tubs for winter. I own neither....yet!
:2thumbsup;
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I think mine specified "public hot tubs" as well, but if you own your own just be sure you take good care of it with the proper cleaning and such. Now, I was never told not to take hot baths, but I'll have to inquire about that one. I'm sure I"m not supposed to sit it hot, dirty, soapy water, but I'm usually an in and out kind of bather/showerer anyway. I only take baths when the legs get too hairy. :rofl;
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Thanks for sharing! ::) :2thumbsup;
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My doc told me no PUBLIC hot tubs...so I guess when I get an urge, I'm gonna have to buy one!
Or you stay in a hotel room with it's own hot tub/jacuzzi !!!! Like when you're in Vegas ! >:D >:D >:D
I wonder if salt water ocean or natural hot pools (like Hanify talks about) would be better.. Perhaps the spread of bacteria in the ocean isn't really an issue because the water is always moving and it's salt.. not sure about the hot springs though. I think the issue in a public hot tub is that it's a small amount of water that keeps going around and around and you have all sorts of people getting in and out with their bacteria, and you don't know how often it's cleaned or how well the water is chlorinated or whatever. I think that is the main issue.
I'm reminded of a sign at a hotel I go to a few times a year in Brisbane by their spa/jacuzzi (public). It says something about due to health risks don't submerge yourself in the spa... I think it's a similar thing.
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Seriously, no birds :o. We have 3 and Jim handles 90% of their care and bird maintenance. He will be very unhappy to hear he will have to give up his birds. Have some of you kept your birds without incidence or have you given them up before your transplant so you never had to deal with a problem?
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These lists seem to get longer and longer every year. When I had my transplant (1976), I believe the little book only addressed smoking and drinking. Drinking was supposed to be in moderation, and smoking was frowned upon - so basically exactly what doctors were telling the general population.
I always detested the bossy tone of these booklets, and especially now that I am an adult, I intend to make up my own damn mind about what I can and cannot do. I am sure they will hand me some gigantic list of dos and don'ts after my transplant, but like others have said, it is just a question of basic hygiene and common sense. I am sure I will be more careful the first year, as that is the most uncertain. I have done nearly everything on these lists with no ill-effect.
Greco, my parents bought my sister a bird when I was a teenager. I can't say I intereacted with it much, but it certainly never made me sick. I have fed birds in zoos and picked up injured birds to give to rescue centers. I personally wouldn't worry about pet birds too much, unless they are outdoor birds that are out flying with wild birds, and then I probably would worry, transplant or not. But that is just me - birds are not my favorite thing. Perhaps if you take over the care of the birds for the first few months to a year?
To be painfully honest, the worst thing I ever did for my health post-transplant was to have two kids and send them to daycare and playdates and parties. The worst illnesses I've had, and the ones that probably did my kidney in a tad prematurely, were all brought straight to my door by my children, who acquired them from other kids. Still, I happen to think my kids are worth it.
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I think it's the feces of the birds/animals that is bad, not necessarily the birds/animals themselves, right? Birds are kindof messy, so I would think that if you had someone that cleaned up after the birds and such instead of you then you would probably be ok.
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Here's another thing I remembered from the transplant seminar I went to last year and perhaps the transplantees can comment on this. They made comment several times about being sun smart - as in keeping out of it (Lucinda would see this as yet another reason to NOT have a transplant!! :) ) in that skin cancers and the like were that much more likely and you had to be VERY careful when it came to sun exposure....
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You are correct, Richard. It's a medication thing I believe. I wear an SPF sunblock face cream everyday, as well as a lotion that has sunscreen in it on my hands and arms. I'm not crazy wierd about it, but I'm fair skinned anyway.
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I don't care about the sun. Will only worry if the sun is shining when I'm at the hot pools in Taupo ha ha ha ha. We used to really enjoy stopping by there when we drove up to Auckland, and they are particularly nice in winter. I'm afraid if the day ever comes, I'm just gonna have to risk it!
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Seriously, no birds :o. We have 3 and Jim handles 90% of their care and bird maintenance. He will be very unhappy to hear he will have to give up his birds. Have some of you kept your birds without incidence or have you given them up before your transplant so you never had to deal with a problem?
I, well my dad gave up my parrot before my transplant or any thought of a transplant. He thought I was to sick to take care of her and give her atention. So one day while at dialysis, he got rid of her. He gave or sold her to a breeder.
Kelly, the main reason is the dander of the birds and then the feces because it collects . If you ever have a bird and watch it clean itself, watch it shake itself and see how much dander comes off and settles down if on something dark. A lot can come off due to the feathers that grow and collect dust in the air. I don't think mine would have been to bad, she loved to take showers every morning and be sprayed with water.
I didn't have a problem when I had canaries a few years post transplant, but I didn't clean their cage, someone else did. Larger birds I would thing cause more of a problem, but I still wish I had mine.
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They made comment several times about being sun smart - as in keeping out of it (Lucinda would see this as yet another reason to NOT have a transplant!! ) in that skin cancers and the like were that much more likely and you had to be VERY careful when it came to sun exposure....
This was absolutely not mentioned to me or my parents after my transplant. I think it was at least 15 years after my transplant that a doctor first mentioned this to me. My parents were extremely lax about applying sunscreen to their kids - today they would probably be arrested! :rofl;
I never avoided the sun - grew up playing tennis in Southern California. I love the beach, love the heat, love travelling to warm, exotic places. I have had a couple of skin biopsies in the past and have never had any skin cancer whatsoever. I admit I am very, very lucky, because anyone who has lived similarly would be at risk, and then the medications (mostly Imuran and Prednisone over the years) make it that much more risky. Still, there is little I can do about it now, and for me, I don't seem to be particularly vulnerable to skin cancer. I apply sunscreen everyday, and go out in the sun as much as I want. I also apply it to my kids, just because we now know that is the smart thing to do (plus, the government requires that all kids at licensed school programs wear sunscreen.)
With the birds, I was told it was because they carry a lot of diseases. Influenza, west nile - that was what I thought the issue was.
I have to be honest and say that a lot of these make me strongly suspect that doctors are just looking for more ways to blame patients when something goes wrong. When I had my second rejection episode I remember the horrible resident asking me what I did - did I smoke, drink, have sex? (Since when is having sex a transplant risk?:waiting;) Then he ordered my mother out of the room and yelled "Now tell me the real answers". There were no questions about time in the sun, hanging out in hot tubs, or eating grapefruit, though I am sure this jerk would have loved to go through the laundry list and find some reason why this was all my fault. As we all know, most transplants will eventually fail. I don't let doctors blame me for what goes wrong with a transplant. I don't waste time blaming myself, either.
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Some good points Cariad.
I think the way I would (will??) approach this stuff is hopefully in a similar way to how I approach life with dialysis right now. Life life, enjoy experiences when they come up and most of all ENJOY IT as much as possible - but not recklessly. I mean now I watch my fluids, but doesn't mean the fluids I take in have to be boring and always "good" - I drink a coffee a day with workmates, and have the odd cola - today at Dialysis I even ate a M&M (oooh, wicked!! >:D ). I just think that life is for living and if you shelter yourself away totally you might live a little longer, but it wouldn't be half as much fun... and more to the point you could get sick or a rejection from something else that has nothing to do with the sun, sex in hot tubs (see I combined those two for brevity :rofl;) or whatever.
I think the main points to take away (and I know I'm not transplanted - yet - so who should listen to me? nobody!) is to be SENSIBLE. I mean we know the main risks are infection and we need to avoid obvious causes - food that isn't kept hot enough for example, or getting in that hot tub if you have a wound of some sort, even a simple cut - and obviously being as clean as you can.
I would totally be mindful of things like being sun smart and the like, but I'd hate to think it would stop me going to the beach because I was too scared to because of what might happen.
Be sensible and safe, but also LIVE!! That's what the transplant is for, after all!!!! If I wanted to sit in a room and be safe I can do that on dialyisis for the next 30 years.....
oh yeah, I just cleaned the litter box. Hmm I think that is one thing I might cheerfully hand over to my sister to come and do ("You know, the doc said I can't go near that thing anymore...!" :rofl;)
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OK so this might be TMI but here it goes. Otto had his 1st transplant in 93 he was 22 and felt WONDERFUL!!! We walked to a Chinese restaurant on day 3 or 4 and brought stuff back to Otto's roommate since he was to sick to walk with us, was out of the hospital on day 6, had lovin >:D that night (remember we were young) road his motorcycle 2 days later and was back in Hospital that night for blood in his urine(nobody told him not to ride a motorcycle) was out the next day kidney just got bounced around to much so he was told to hold off for 6 weeks, and was back to work FULL time 2 weeks after transplant. Now remember we were young, lived together and I didn't cook so we ate at restaurants ALL the time, would I change anything HELL no we lived everyday to the fullest, because of the high dose of prednisone he never slept for the first few weeks and that drove his mom CRAZY because she knew Otto and I being young we were running wild enjoying his new life. We had 13 almost 14 years GREAT years because of that kidney. I think some centers are really strict about what you do after a transplant, and even after the bad transplant in October Otto's Dr had said they were buying Chinese as soon as he was up to it. Once we got though Otto just picked at it since he never felt good the 2nd time around.
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Well, like Cariad stated earlier "These lists seem to get longer and longer every year." And that may be true, but so does the transplant list. So, for me, when it comes to advice that is easy to follow, such as wearing sunscreen, being overly protective when it comes to owning certain animals, etc., I'm more than happy to oblige. But I do agree you can't become a shut-in. Just be sensible.
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Richard and Lola, thanks, you both really seem to understand from where I was speaking.
Richard, your 'sex in hot tubs' line had me laughing aloud. And just a few hours ago I was volunteering at the crisis line, talking to a suicidal schizophrenic, so it was much needed. You are such a doll! You'll do fabulously with that transplant WHEN it comes your way. :-*
Lola, I agree - I would not change all of the 'less-than-ideal' things I did. When I first told my husband (boyfriend at the time) that I had had a transplant, I was lifting a pint of Carlings at a hotel in Coventry, England. His first question was "Should you be drinking - excuse my ignorance..." (so very charming!) and I basically said yes, I can drink, but even if I had been told I couldn't ever drink, I am still going to live as closely to what feels normal to me as possible. :beer1;
Being so young when I had my transplant, I really had no voice for the first 10 years or so, and doctors blamed me for everything. My parents were even worse - abusive, hateful, and somehow both suffocating and neglectful simultaneously. (If we were still on speaking terms, I might have asked how they pulled those last two off! :rofl;)
My husband does not always understand why I am so militant when it comes to how I allow medical staff to treat me, talk to me, or talk about me. For example, on my first call to Northwestern, the clinical coordinator took my health history and when I mentioned having this first transplant for 33 years, she said "Good girl, you've been taking care of your kidney." I had to restrain myself from blurting out what I wanted to say: First of all, 'girl' was 20 years ago, and secondly and more importantly, as an old professor of mine loved to say "You can do everything right and lose, you can do everything wrong and win." My 'success' with my transplant has to do more with luck than anything, and I have no idea why it is so difficult for doctors to admit this. My gp believes much of my success can be linked to my refusal to adhere to my prescribed medication. He thinks the geniuses overmedicated me, and I am fully inclined to agree with him.
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Cariad, your first transplant lasted a really long time. I don't doubt for one second that you don't know what you're talking about. :2thumbsup; I pray mine lasts that long. And luck has a lot to do with the success of transplants I'm sure. :beer1;
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How soon did everyone drive after the transplant?
I have the shakes still from the Tac, so my husband is demanding he still be my chauffeur!
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Well I came home on a Friday and started driving on a Monday. Parents were home Saturday and Sunday along with home health nurses, so wasn't "allowed" to. So when they went to work, out to play I went. Hard to keep my passion for driving down.
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Three weeks for me Sally...then I started driving to clinic myself (1 hour drive). I had the Tac shakes for about 2 months...til they zeroed in on my levels. Shaking doesnt mean ya can't drive it just means your penmanship sucks! lol
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I made it one week. I was having to go back to the hospital for 4-5 hr IVIG treatments for the CMV stuff, so it was hard to ask people to take off work and such. I took my little kidney pillow with me and drove very cautiously in the right lane. I had no problems.
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So, for me, when it comes to advice that is easy to follow, such as wearing sunscreen, being overly protective when it comes to owning certain animals, etc., I'm more than happy to oblige. But I do agree you can't become a shut-in. Just be sensible.
Well said, Kelly. I agree with you. I hope you don't think I was ignoring you with my earlier reply - for some reason I did not see your response above mine until just now.
Cariad, your first transplant lasted a really long time. I don't doubt for one second that you don't know what you're talking about. I pray mine lasts that long. And luck has a lot to do with the success of transplants I'm sure.
Thanks for the compliment! I think like most everyone here, I know a lot about what works for me and what I am and am not willing to do in the name of health. Unfortunately, what worked for me may well be a disaster for anyone else, so I hope people will listen to their doctors but follow their instincts as well.
I read a journal article about five years ago saying that these days, if you can make it through the first year post-transplant, you have an even chance of having your transplant last 25 years. When I had my transplant, that half-life number was supposedly around 5-8 years. You've already made it through the first year, and we're cheering for you to blow my 33 years away. :cheer:
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With driving, my donor was told 2 weeks before he could drive after the op - I have not been given an official number yet. Two weeks seems pretty standard after anything major like that. Kelly, Chris - you both sound like me. No patience for these precautions, and besides, the real world often gets in the way of good intentions.
Oh, what are Tac shakes, please? They sound unpleasant.
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I was wondering what Tac shakes were, as well.
I hated being driven around. I felt ridiculous. My husband had to work out of town (coming home every evening) and my nearest relative was a good 30 minutes away. They managed to get me here and there, but again I only asked for one week. It was too hard on them I felt. But I did only drive to clinic and back, or to the hospital for my IVIG treatmentsl.
And I didn't think you were ignoring me, Cariad. And thanks for the cheer! :cheer: You ladies and gentlemen with your long transplants! Ya'll are my idols! ;)
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Thanks for the kind word and glad to give y'all a laugh. Me? I'm still wishing for that sex in a hot tub.... :rofl;
I don't actually drive so that won't be an issue for me. Hmm Now if only I could get one of the hot women of IHD to drive me around - BONUS!!!!!!!!!!!! >:D
I live across the road from the hospital(bought when I knew D was coming up) so going to do the daily labs will be quite easy I think. Assuming no real troubles I think my biggest problem will be boredom!!!
Still I had a wacky dream the other night that I got the call and the tx and all that and every day after doing labs I would walk to different establishments to buy a different sort of drink to enjoy - iced coffee with whipped cream one day, coke the next day, apple juice the next, hot chocolate, etc etc...
yeah, I need to get out more I know!!! :rofl;
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I cannot wait for you to get that call, Richard! It's going to be magical! :beer1;
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*blush* thanks... sure hope so.
Seems like every week now a nurse comes up to me and says quietly "I really want you to get it soon".. and I don't think they exactly want to get rid of me... or do they???? :rofl;
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My doctors told me to wear gloves if gardening, not to clean the littler box for 3 months, no raw seafood (goodbye sushi and oysters!), and that it was OK to swim in the ocean or a pool. No swimming in lakes!
He didn't mention hot tubs - I'll have to ask. There were actually fewer restrictions that I thought there would be!
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Question..... what is TAC and what do you mean the shakes.....
I have the shakes still from the Tac, so my husband is demanding he still be my chauffeur!
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TAC as I know it is Prograf/ FK506/ and Tacrolimus.
The shakes are also called tremors which is a potential side effect of the medication. Mine are not so bad anymore unless sick, which then is very noticable. Not everyone gets them, but they start after your transplant and dwindle down when the medication is lowered and or your body gets use to the medication.
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Question..... what is TAC and what do you mean the shakes.....
I have the shakes still from the Tac, so my husband is demanding he still be my chauffeur!
Exactly what Chris said. :waving;
I have been transplanted recently. I am experiencing shakes or tremors from the medication. Most probably the Tacrolimus/Prograf. I feel like a walking Chemical lab at the moment but I am sure as the weeks progress I will adjust to the new medication and things will settle.
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I worked as a vet tech during the time I had my transplant. My doctor HATED that I worked around so many animals, but he grew to accept that was what I was trained to do and what I loved doing. During those years working, my home was filled with quit a few "rejects" that I didn't want to put to sleep, so even if I never return to working full time again, I've got a zoo at home. Proper precautions go a long way. A mask may be needed for the first couple weeks while handling animals, but after awhile, you'll be fine as long as you're not licking your fish or eating dirt from the garden :)
I have cats, dogs, guinea pigs and fish currently. I've had rats, hamsters, gerbils and rabbits before (with the transplant).
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I worked as a vet tech during the time I had my transplant. My doctor HATED that I worked around so many animals, but he grew to accept that was what I was trained to do and what I loved doing.
When I lived and worked in San Francisco, a nurse from the post-transplant clinic phoned me to talk about my job, which was in theatre. She said something about being careful.... because theatres are often poorly ventilated? I don't know, it's all just noise to me at this point. Some medical person will come up with a reason why what you're doing is wrong, wrong, wrong.
That's why I adore my GP. When it became obvious that my current kidney was going to fail in the not-too-distant future, he said "don't let them put you on some crazy, restrictive diet. It will probably only extend the life of your transplant by a few months, and if a nephrologist can get 24 more hours out of a kidney, they'll want it." 8)
The most recent nephrologist I saw sent a very young doctor in to gather all the boring historical information from me. When the young guy heard I had had a transplant, he leapt up, said something about worrying about transplant patients, and went on a quest for a pair of gloves. I tried to tell him not to bother, but he insisted. The most amusing part was that all he did was take my blood pressure and listen to my heart. I don't think his gloved hands actually touched my skin.
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Just thought of something else not covered yet in this thread(I don't think anyway):
alcohol.
My understanding is that after transplant you can have a small amount of alcohol, but it's not encouraged. What have people found on this front? Or what have you been told?
I imagine it is mostly about interaction with the meds that would be the big problem.
I usually imagine a glass of wine/champ and maybe 2 of beer would be a limit for a session/night?? What does anyone else think or do?
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Just thought of something else not covered yet in this thread(I don't think anyway):
alcohol.
My understanding is that after transplant you can have a small amount of alcohol, but it's not encouraged. What have people found on this front? Or what have you been told?
I imagine it is mostly about interaction with the meds that would be the big problem.
I usually imagine a glass of wine/champ and maybe 2 of beer would be a limit for a session/night?? What does anyone else think or do?
Good question Rich. I rarely drank alcohol when on dialysis so I haven't thought to ask. I have been given a bottle of French Champ celebrating my transplant, so I will ask at Clinic on Friday. :beer1;
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What they said! I'm not drinking that often on dialysis either.
Hope you and you new kidney are doing well Wattle.
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French champ hey Wattle? What sort?
I have planned to take all my unit staff out to lunch at my fave chinese restaurant after (if/when) I get a transplant. it has been a promise I have made to them for over 2 years now. Anyway whenever I imagine this little meeting I picture me with a glass of Dom Perignon champ to toast and thank them. I so wish to do that (hey, I love Dom!!! :rofl;)
While on Dialysis I don't drink much alcohol owing to the fluid restrictions, though I have been known to save up some allocation to have a beer with the boys after work on a Friday. Of course it is better to indulge in shots given the fluid volume is less. One of the few times I reckon a medical professional might recommend spirts over wine or beer! (yes, nurses have suggested I have the hard stuff!!) :rofl;
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What I was told, well in our binder we are given on discharge is beer 1 or 2 times a month and no hard straight alcohol. I'll have a beer when out once in a blue moon. I don't drink evry month, but usually in Feb, April, and November and on the rare ocassion I go out to eat. I didn't drink while on dialysis, but use to go out every Thursday or Friday with coworkers afterwork and play pool, darts, and b**ch about the manager brown nosing the boss :rofl;
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Richard and Lola, thanks, you both really seem to understand from where I was speaking.
Richard, your 'sex in hot tubs' line had me laughing aloud. And just a few hours ago I was volunteering at the crisis line, talking to a suicidal schizophrenic, so it was much needed. You are such a doll! You'll do fabulously with that transplant WHEN it comes your way. :-*
Lola, I agree - I would not change all of the 'less-than-ideal' things I did. When I first told my husband (boyfriend at the time) that I had had a transplant, I was lifting a pint of Carlings at a hotel in Coventry, England. His first question was "Should you be drinking - excuse my ignorance..." (so very charming!) and I basically said yes, I can drink, but even if I had been told I couldn't ever drink, I am still going to live as closely to what feels normal to me as possible. :beer1;
Being so young when I had my transplant, I really had no voice for the first 10 years or so, and doctors blamed me for everything. My parents were even worse - abusive, hateful, and somehow both suffocating and neglectful simultaneously. (If we were still on speaking terms, I might have asked how they pulled those last two off! :rofl;)
My husband does not always understand why I am so militant when it comes to how I allow medical staff to treat me, talk to me, or talk about me. For example, on my first call to Northwestern, the clinical coordinator took my health history and when I mentioned having this first transplant for 33 years, she said "Good girl, you've been taking care of your kidney." I had to restrain myself from blurting out what I wanted to say: First of all, 'girl' was 20 years ago, and secondly and more importantly, as an old professor of mine loved to say "You can do everything right and lose, you can do everything wrong and win." My 'success' with my transplant has to do more with luck than anything, and I have no idea why it is so difficult for doctors to admit this. My gp believes much of my success can be linked to my refusal to adhere to my prescribed medication. He thinks the geniuses overmedicated me, and I am fully inclined to agree with him.
Hi Cariad. Are you in the UK?
I agree with everything you say - and my son who was transplanted last December thinks exactly as you do.
The aim of a kidney transplant is for the obvious - not to die, but also so that the recipient can lead a normal life. Reading some of the do's and don'ts across the pond, I couldn't help thinking "where's the normal life in that?" Not supposed to do this or that? Not supposed to do gardening? For goodness sake. I must admit I do wear gloves when gardening purely because I don't like the soil going underneath my fingernails and incase a sneaky stinging nettle sneaks out from between the flowers and gets me (revenge of the nettle I call it). OK. I don't have a transplant. I do have a kidney disease, Alports Syndrome although, fortunately I haven't shown any signs apart from very minor ones. Sadly, my son is the one who got the whole shebang as is usually the case with Alports, so he's the one with the transplant.
He just lives life like anyone else, although he is cautious about going out in the sun and won't go out without total sunblock on - which he's always had to do anyway as he's fair-skinned with blonde hair. Again, common-sense. He won't eat any food he thinks might be suspect in any way and washes his hands frequently, particularly before handling food or after using the toilet - which everyone should do anyway as part of their normal, everyday hygiene routine. Other than that, he just goes about his business like anyone else does.
He has three cats of his own. He cleans their litter box himself but always wears rubber gloves and washes his hands thoroughly afterwards. We also have two German Shepherds. I do the poop-scooping there because, like most men, he thinks it's a horrible job. As I remind him, when you have kids and have changed nappies (diapers) thousands of times, poo is poo so it doesn't bother me. I just follow the same hygiene principles. We also keep pet snakes.
We have Swine Flu here at the moment and we think Ian might have had it. He didn't use any medication (Tamiflu) although he was authorised to get it, he decided not to bother. He just did the sensible thing, quarantined himself in his bedroom, kept drinking lots and took some paracetamol. He's over the worst now and just left with a slightly stuffy nose and a bit of a cough. He thinks he caught it on one of his hospital appointments as someone in the waiting room was coughing and sneezing. That is the only illness he has had in the 9 months he's had his transplant. He's been around people who have had the cold and not caught it himself so his immune system must still be working quite well.
I often think nowadays (this is in general, not related to kidney problems or people on immunosuppresants) that people are too clean, over-vaccinated and this is helping to destroy peoples' natural immunity, hence many people, especially children are going down with illnesses and diseases we'd never heard of 30 or 40 years ago.
When I was young, we never heard of diseases like E-Coli, yet food hygiene was, in comparison with today, virtually non-existant in some shops. We went into a shop to buy biscuits (cookies), stuck your hand in a box, helped yourself, put them in a paper bag and got them weighed. Probably dozens of other folk had one the same, and I'll bet some of their hygiene was very suspect, yet we didn't fall foul of such diseases, or at least there was very little of it about.
Same goes for allergies. So many people are allergic to so many things these days. Hardly heard of when I was young but then we didn't have sprays for cleaning that killed this bacteria or that bacteria.
Kids were hardier too. They went outside and played. Went out clean and came in filthy - healthy dirt my late mother used to call it, cringing at the pile of our clothes which she hand-washed as we didn't have a washing machine until I was about 10 years old.
We didn't have central heating either. Just one open fire in the living room. Our bedrooms in winter were sometimes freezing cold but the hot water bottle and the eiderdown quilt kept us warm and cosy.
Oh dear. Now I'm getting nostalgic. Think it's time I went to bed as it's 2.30am here and I've got work in the morning.
Nite everyone - or is it Morning everyone LOL.
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I just wanted to comment that you wrote a lovely post and I enjoyed reading every word, Python. Very well stated. :2thumbsup;
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Just thought of something else not covered yet in this thread(I don't think anyway):
alcohol.
My understanding is that after transplant you can have a small amount of alcohol, but it's not encouraged. What have people found on this front? Or what have you been told?
I imagine it is mostly about interaction with the meds that would be the big problem.
I usually imagine a glass of wine/champ and maybe 2 of beer would be a limit for a session/night?? What does anyone else think or do?
I have never heard any restriction with alcoholic beverages. Of course, they usually recommend "everything in moderation" as they would with most people anyway.
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Hi Python,
Sadly, not in the UK - the middle of the US. My husband's British (Welsh) though. We want to relocate to the UK, but have to get my next transplant behind us first. My husband turned down a UK job only last March, because I so want to participate in a clinical trial that they are offering at several centers in the US, but nowhere in the UK yet. Transplant should take place in October, and then we can plan our move for some time next autumn. :cheer:
Aren't some of these dos and don'ts ridiculous? The gardening one puzzles me, too. What exactly do they think you will encounter in a garden that won't end up in your vegetables anyway?
Oh, and the vaccines. Do not even get me started. My son had to get a vaccine for chicken pox. Then the state decided that one shot was not good enough, so now he has to get a booster. My other son caught actual chicken pox before he was old enough to be vaccinated. The doctors practically applauded. I was told that the vaccine doesn't come close in terms of creating lasting immunity. Um, did no one think this through? Chicken pox is really dangerous for adults! If the vaccine wears off then all of these people who might have contracted it as kids are now in danger of getting it when they are older. Also, there is now no chicken pox virus around to boost older people's immunity, so cases of shingles have skyrocketed. :urcrazy; Oh, and my gp says the next vaccine in the works is rotovirus. Rotovirus is hardly dangerous, and lasts all of 48 hours! ???
I had cats for most of my life, and cleaned hundreds of litter trays. I did not even wear gloves - no one told me to do this. Of course I washed my hands thoroughly, but it never crossed my mind to do this because of the transplant. (Believe me, my father hated cats so passionately that if he had ever caught wind of the notion that they could be dangerous to me, those animals would have been banished, supposedly for my own good.)
As you can see, I agree with you completely. Thank you for adding your thoughts. All the best to you and your son! Your attitudes are delightful. :flower;
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Darn, I could have had a Whiskey Sour if I had mine in California ;D :sarcasm;
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Python - great post!
I think a lot of it is part of this politically correct society we've turned into, and of course the very legal minded one (sue for anything). I wouldn't be surprised if a lot of the stated restrictions are more about covering their butts than anything else. For example, you go in the garden, cut yourself on a thorn and somehow get an infection and it causes problems.. well they say "We told you to not garden in our post transplant guidelines" - they're off the hook and you can't sue them.
The whole PC thing about over protecting the kids and all that it seems a bit much, but is understandable. Like Python said - when I was a kid we'd go out on Saturday morning not come home till tea time. Nobody really asked where we were. Nobody had phones or anything. If we got into strife we worked it out (or someone helped)... Those were great carefree days it seems (the 1970's for me) and now you just don't really see kids doing that sort of stuff. And the PC crowd would have you believe it's about stranger danger and all that, but tell me those types weren't around in the 70's? and before? Of course they were! Sometimes I think the children of today are missing out on a "real" childhood (but that is from my perspective perhaps living in the past) - sitting at home, closeted inside, playing computer games and watching TV.
I do understand some of the restrictions (eg: sun) because the reasons make sense, and others like washing hands etc are just common sense. I think that's the way to approach it. Live normally but be aware and *think* (like, oh, that food has been in the heating tray for hours.. probably a bit suspect).
Still when it all comes down to it - the restrictions/guidelines discussed here aren't that onerous.. compared to doing dialysis and all that... I definitely would prefer that lifestyle! :)
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Well there is common sense about the alcohol too because some of the meds are broken down in the liver and alcohol can affect that. But apparently grapefruit has more of a consequence than alcohol since a couple meds do state do not take with grapefruit juice. I agree with you RM on the to much political correctness crap. We need to wean out the herd of dumb :sir ken; ;D :rofl; :sarcasm;
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I didn't read all the recent posts above so forgive me if I'm repeating, but I think another factor of the alcohol is dehydration. Again, like everything else we've discussed, moderation and common sense seem to be the key. If you have an alcoholic beverage follow it with a nice tall glass of water. Don't allow yourself to get dehydrated. That's hard on your little kidney.
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1 beer, 1 water.. I can handle that.
I'm licking my lips now just thinking about it!! *drool*
:rofl;
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I think my binge drinking days are well and truly over. :(
Some of my mates weren't to impressed when i told them this.
Last time i got pissed was October 25th 2008.
But i can tell you i don't miss the hangovers.
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mate these days I can have one and a half beers and feel a bit unsteady. I think the toxins and stuff amplify the effect!! Have a few vodkas and I'm really in trouble! :rofl;
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Cariad. Whatever you do, don't come to the UK. This country has been turned on it's head by the useless government we have at the present. You're not safe to walk down the streets and if anyone gets arrested they get extremely lenient sentences.
Our NHS is in a mess too. Filthy wards, uncaring and incompetent staff and superbugs infesting every area. Then there's immigration from third world countries. Unfortunately, the UK government operates an open door policy and puts our own people bottom of the queue for just about everything.
Thank God we've got a General Election next year so we can vote the so-and-so's out.
Also, we are in a recession, which according to the newspapers the other day, is worsening. Our unemployment stands at the moment at 2.4 million - 1 in 6 is out of work. Housing is difficult to get if you try renting from the Council or if you try to buy your own, horrendously expensive, not to mention a nasty piece of taxation we have called Council Tax.
We would dearly love to get out of this country, things have got so bad here. This week my husband's take-home pay will be £130 (approx $260). Straight away £95 has to come out of that for rent and Council Tax, so after gas and electricity it doesn't leave an awful lot.
I live fairly close to Wales - about and hour and a half away.
Now the subject of alcohol. I enjoy the occasional glass of wine with a meal and that's it. I can't be bothered with it. I was a taxi driver for 5 years and saw people making complete idiots of themselves too many times but now, with all the binge drinking going on here, many people have stopped going into the town centre of an evening as they risk being beaten up by drunken thugs.
My son doesn't drink (nor does my daughter). He got put off drink when he was about 13 years old (pre kidney failure). We went to my friend's daughter's wedding. It was quite a big affair and at the reception my son kept disappearing in the crowd. Eventually he reappeared - with blood streaming down his forehead. Had an argument with a tree branch (showing off to the girls more like) and the tree won.
Later, he disappeared again and I spotted him, someone else's alcopop in one hand, other hand on hip, looking like a mini man-about-town, chatting up a young lady. He got the "Come here - NOW" sign from me and was told not to leave our table again the rest of the evening (which, by this time was nearly over). He found out the hard way about alcohol when he had the mummy and daddy of hangovers which lasted a couple of days, not to mention a cut forehead (he still has the scar). He learned a valuable lesson and to this day has hated alcohol. He won't even have a glass of wine with the Christmas meal. He prefers a cup of tea to anything. Me I love my coffee.
He hasn't seen drinking in our family as my husband seldom drinks either. His ex-wife was an alcoholic so he's seen first hand the damage it can do and prefers to stay away from it.
The one vice my son and I share is we both smoke.
On the subject of grapefruit (yuk), it would seem it interferes with quite a lot of different medication, not just immunosuppressants.
Must admit we're not lovers of fruit - but love our veg ;D