Activities after a transplant

[RichardMEL]

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!!  ). 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  ) 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...!"  )

[lola]

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 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.

[kellyt]

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.

[cariad]

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. 

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! )

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.

[kellyt]

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.   

[Wattle]

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!

[Chris]

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.

[Wenchie58]

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

[kellyt]

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.

[cariad]

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. 

[cariad]

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.

[kellyt]

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!        You ladies and gentlemen with your long transplants!  Ya'll are my idols! 

[RichardMEL]

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.... 

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!!!!!!!!!!!!

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!!! 

[kellyt]

I cannot wait for you to get that call, Richard!  It's going to be magical! 

[RichardMEL]

*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? 

[swell]

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!

[tyefly]

   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!

[Chris]

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.

[Wattle]

   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. 

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.

[Erin8607]

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).

[cariad]

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." 

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.

[RichardMEL]

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?

[Wattle]

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.   

[sico]

What they said! I'm not drinking that often on dialysis either.
Hope you and you new kidney are doing well Wattle.

[RichardMEL]

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!!!  )

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!!)