Is there a point after transplant where you stop worrying about rejection?

[carol1987]

I was Transplanted on the 6th and everything went well... but I still find myself saying... "The kidney is working great...oh i hope it lasts a long time..."

I got my first results from home and the creatnine is down to 1.0!!   But all day yesterday and until the call today I was  expecting to be told it was going up?

Did anyone else feel this way?    Do you ever really take a deep breath and just accept that it is working great? 
Of course you always have to keep an eye out for rejection but does the concern diminish??

[wj13us]

Carol:

As a 38 year transplant veteran the simple answer is no...it never goes away.  Yes it will lessen over time but it never really goes away.

However, don't think this as a totally bad thing.  You will always be conscience of everything you do and how it may effect your transplant.  This will make you make healthier, smater choices and appreciate every day.

I was on dialysis at 12 (which didn't go well at all) and transplanted at 13.  That was back in the 70's and back then recovery was much longer then it is today.  I was in the hospital for 4 weeks following my transplant, 3 weeks was the norm.  I hated kidney disease, dialysis, operations, doctors, hospitals you name it I hated it.  A transplant gave a shot at a normal life without any of that.  And it has been.  I used to be proud to say that when I left the hospital in 1973 I've yet to spend another night in one.  That was somewhat broken in 1991 when my son was born (but that doesn't count) and again for 3 days 5 years ago when I had a compound fracture of my arm in a bike crash (some people tell me that doesn't count either since it was not renal related).

As much as I hated everything and wished I never had kidney disease looking back now I've realized how fortunate I was to be sick in the first place.  Now, if I could, I would not trade my life for a diesease free one.  Many people who get a chronic disease look at life a whole lot differently once they survived. It makes evaluate what you have done and what needs to be changed.  What can they do to make their life better and those around them.  And mostly how to appreciate the time they have.  Imagine having that insight at 13, how lucky was I?  Hopefully the transplant has given you that insight...no matter what happens now your one of the lucky ones.

So carry that fear of rejection with you every day and make the most of it.

Bill

[carol1987]

Thanks Bill!  That is great advice... focus the concern into a positive!!

I can't even imagine going thru what you did at 12/13.... but I do see what you mean about how chronic illness gives you great perspective!!  You are right .... although no one would wish for illness... to have that great perspective on life from 13 years old is really a blessing!!!

What event did you compete in at the transplant games?

[wj13us]

LOL Carrol..please see the above post from Bill re: 3 days in hospital.

I'm a cyclist.  I've actually only been to two games..the last two.  I was also on Team Maryland's volleyball team.  I don't play volleyball be given such a small state we never have enough people to field a team in a team sport.  Well we did this year so we took part in volleyball.

There is actually a news story about me and the cutest little girl named Olivia who had a heart transplant training for the games.  Its still on the internet I'm not sure about posting links on this site so I may have to go back and check the rules if anyone is interested.

Bill

[cariad]

Hi Carol, I have a somewhat different perspective to Bill, but I imagine this is down to different personalities and life experiences. I never gave my first transplant a second thought. Well, maybe on occasion, but literally for the first 10 years, I do not think I was especially aware that the transplant could fail, and never for a moment gave credence to the idea that it would. I had a rejection episode 6 months after transplant, but I do not think I knew why I was there, and certainly non-adherence was not the issue at the time as my parents maniacally controlled every thing from my drugs to every last bite I ate. Back in hospital, I felt like I had been demoted, like I had been lied to because I thought I was done with all of that kidney nonsense. I reached a point where I was so angry I climbed out on a ledge and started pacing, giving the impression I was gong to jump. (I can sort of remember my thoughts at the time, certainly that I knew I was not going to jump, but it got the attention of the entire hospital and they sent me back to my home state that day.) I had one other rejection episode, and probably a few others that went undiagnosed because I gave up on doctors for many years.

Now I am nearing the one-year mark with my second transplant and I can say that I was fairly scared about losing the transplant for maybe 4-5 months. Once again, I don't really think about it much any more. I have two kids and they bring all the diseases of childhood back with them - I had a flu around September that was worrying to some extent - but by and large I am honestly not concerned. OK, I guess a large part of me believes that like the first time, if I refuse to entertain the idea that it will fail, then it cannot fail. I imagine that this transplant will well outlast the first one and that I will die of something quick and painless in the midst of enjoying myself immensely.

Are you feeling all right? I find that when I am feeling out of sorts, my mind looks for answers and even if it is something stupid like 'my, I'm tired after an 18-hour day with the kids' I'll think 'perhaps it's the kidney playing up'. It never is. My labs have barely moved in 10 months.

Best of luck, and try to relax and enjoy your renewed health.

[st789]

Yep, it makes 1 do a lot of pondering and reflections.

Live each day to the fullest to your best know how.   Count the blessings.

[monrein]

I don't worry about rejection exactly, since I've never had an actual rejection episode and my PRA was 0 even after 23 years with my first transplant.  Cyclosporin toxicity over time did it in.  Now I'm almost two years out (February 20) with my second trx and have been feeling so amazingly well it continues to surprise and delight me.  I have more energy than in the past ten years or so, feel strong and great most of the time and have just added an hour of walking in the afternoon to my daily morning exercise routine at the gym.   My lab work has been fantastic, last month every value was within the normal range and my creatinine has not even once been above the cutoff for normal.

Having said all of the above, I take none of this for granted and never did during my first transplant either.  I appreciate every minute of feeling healthy, of breathing deeply, of exercising hard, of having fun and of experiencing no pain.  I do everything I possibly can to contribute to favourable conditions for this miraculous body I inhabit and I think of both my donors every day.  I think carefully about nutrition and exercise and stress and keep appointments and manage meds and all of this helps greatly to diminish worry...I can do no more than what I already do and I don't spend time obsessing about stuff either.  I think the medical stuff is tucked neatly into my routine and I find it a bore to bore others with it.   I do feel that I know that my "good fortune" can't last forever but then that's the human condition in a nutshell.   

[Rerun]

I worried for 17 years.  It does not help to worry.  Do your best everyday to keep your transplant.  That is all that you can do.

                 

[Chris]

I never worried till the last few episodes of hospital stays due to labs, then I became concerned. As cariad said, it boils down to personality I beleive also. I tried to keep busy with college courses before and after transplant. Enjoy having your transplant and don't worry so much, just educate yourself about labs and know how your body reacts.

[kellyt]

For me, the for first few months after transplant when I was getting my labs done weekly then monthly I wasn't thinking about rejection at all. Every time I went in for labs I was excited to see if my creatinine was lower or the same.  I have not had a rejection episode myself (celebrated 2 years Nov 5), although I did have some issues with rising creatinine and later found to have a lymphocele that was compressing on my ureter not allowing my kidney to fully process (I guess is the word).  Once that got taken care of and my labs all leveled out (creatinine staying at 1.1 to 1.2) regularly and the moved my appointments to every six months, NOW I worry.  But only when I go have my labs done the week prior to my appointment.  For some reason getting that lab drawn brings me back to reality that rejection is a possibility.  For the entire week between having my labs drawn and my appt I seem to think I'm urinating much less, I keep checking my kidney for tenderness and pain, etc.  Then when I get my labs at my appt everything is great again for another six months.   

I've become a worrier over the last ten years of my life and I worry about everything, but the life of my kidney strangly isn't one of them.  I take precautions for sure, but I'm not going to make myself (more) crazy over it. 

[natnnnat]

I asked Gregory "Is there a point after transplant where you stop worrying about rejection?"
Gregory says "no".   
"You can't not worry about it really.  It gets less after awhile.  But I still think about it now after 19 years.  Every blood test, you wonder what they're going to find."

He's well-impressed with Bill and his 38 years.  He says, those sort of people really appreciate having a transplant, its a gift, you're very lucky to have it. "Some people waste their transplant by not looking after it, there's no point getting a transplant just to knock yourself around, you've gotta look after it," he says.  "I never stop worrying, but you don't worry every single minute of the day.  I worried about it when I had pneumonia cos it took a bit of a beating, but I knew it would come good."  I'm starting to write like a news journalist.  Gah.

So he's not a CarefreeCariad, he is more of a naturally worrying sort of personality.  I think that there's debilitating worry, and then there's the good kind of worry, more like awareness, which inspires you to remember your meds and get some exercise. 

G has a lot of faith in his kidney.  He talks to it sometimes, I hear him, he reminds it to work.  We've had some scares lately and we've learnt (especially, I've learnt) not to jump at every small up or down in measures like creatnine, but to wait and look at the bigger trend.

A disjointed reply, rushing off now to hospital, ironically enough, to be inspected again by "them" on account of his recently removed thyroid, his swinging calcium levels, and with hopes that the scheduled iodine radiation tablet I-131 won't affect his kidney.  What us?  Worry?  Hah!

[Ang]

you don't ever stop worrying about rejection,you just push it into  that dark spot in the back of your skull.
as newbie in the tx caper, i think if you take of your self,rejection should'nt real occur

[jbeany]

Carol, I think I'm counting each good test result as a notch down on the worry meter.  I'm sure I'll get to level where that stops happening, and it's just a constant awareness of the possibility, but I've seen the stats on this.  The longer you go without a rejection episode, the better your odds of keeping it for a longer period of time.  No money-back-refunds if the stats don't include your kidney, of course, but at least it's a thought.  "I made it 2 months, 6 months, a year, etc. so my odds of keeping my bean have extended a little bit more."

[RichardMEL]

I try to look at it this way. I'm aware of the risk and that it can happen. I am also aware that these days "rejection" does not have to mean the failure of your transplant - milder forms of rejection can be treated with changes in meds. Really though it's one of those things that is down to Fate. I can't exactly affect it that much - it either happens or doesn't and if/when that time comes I will deal. What I do use the thoughts of rejection or failure for is to remind myself every single day to a) treasure it like it could be the last(because it could!) and live life and b) do everything I can right by what the docs tell me to have my meds on time, be sure I am taking the right doses and not doing anything stupid when I do. If I keep up the meds properly, exercise, eat right (well.. better ) etc - everything I physically can do to keep myself healthy and thus the transplant healthy, then really if/when rejection happens... I'll know I've done my best and if it's time.. then it's time.

I've had a few worries when the creat has bounced around a bit and the docs have started murmoring the biopsy word "in case there's some rejection" but it hasn't come to that (and my first biopsy so far was all clear and happy).

So for now it's live life, keep an eye on the labs and try not to focus too much energy on the problems that can/might happen. When they do I'll deal.. till then it's just adding stress (and BP!) to living. I'd rather worry about trying to get a date or something like that then something I have even less real control over...

Just my two cents.

[cariad]

as newbie in the tx caper, i think if you take of your self,rejection should'nt real occur

I think this is an unfortunate misconception, Ang. Unfortunate because if something does go wrong, people will agonize pointlessly about what they did to bring it on, and the answer will probably be 'nothing'. I am convinced it is mostly down to luck, and my experience bears that out.

As I've said, I started by doing everything right, just as the doctor would have dictated, because my parents were forcing me. Eight months later, I went into rejection. It was diagnosed as acute and chronic, and chronic is the type that is not supposed to go away or get better. Then, beginning about 8 years later, I started doing everything wrong (skipping meds, stopping them outright, starving myself, living off diet Coke and salt, abusing over-the-counter drugs to stay awake through prep school, drinking to excess through university and beyond) and still that kidney hung in there. I wanted to try out playing rugby when I first met my husband because he was so into it, and he said no - and I asked why. It was he who had to point out that my kidney would be in danger because of its location. Gwyn is not a controlling person, nor an overly responsible one truth be told, so this was a big departure for him, and telling of just how little I thought about transplant issues.

Speaking to what Richard wrote, honestly 'rejection' did not mean the end of your transplant back in the day, either. Unless I really am a complete anamoly, which I do not believe. Regardless, let me stress that I am now extremely adherent and take my drugs religiously. I have missed only one dose completely, and one dose in December I doubled up because I had somehow missed taking the earlier dose.  I have also missed labs perhaps 3 times, but do remember I am STILL on an insane, twice a week schedule. Other than that, 10 months of dutifully following directions from Northwestern.

Ah, Nat, I was delighted to read 'CarefreeCariad'. I wish I could say that about all facets of my life, but alas, I am a chronic worrier when it comes to my kids and my finances.

[Riki]

I didn't think a whole lot of it when I was a kid.  I had my first transplant at 14, and had my first bout of rejection a year to the day later.  I was treated with prednisone, and all was well.  At first, my mother would watch over me as I took the meds, sometimes handing them to me and telling me to take them.  As I got older, Mom gave me a bit of leeway, and as most kids do, she gave an inch, I took a mile.  I'd skip meds, tell Mom I'd taken them when I didn't.  I started smoking socially (when my friends would smoke, I'd smoke too).  I had no idea that nicotine raised cyclosporin levels, until the kidney actually began to fail when I was 20.  Nothing was done to stop or slow the rejection at this point, and I don't know if anything could have been done.  I was being readied for dialysis again at 22.

I was lucky and got my second kidney 6 days before my 23rd birthday.  About 8 months later, when I started having symptoms of rejection (I had extreme pain around the kidney, which actually continued until the kidney completely shut down about 3 years ago), I was ignored.  Because my labs didn't show anything, and they couldn't see any evidence of the symptoms I was having, I was told that they were all in my head.  I remember telling them that there was something wrong, and I would be proven right when the kidney failed.  Unfortunately, that statement was my downfall, because when the kidney did fail about 2 years later, it was believed that I intentionally killed that kidney to spite them and to get attention.  I've been on dialysis now since May 25th, 2004, 3 days before my 26th birthday.

Suffice to say, I'm not liked a whole lot in my transplant centre.  In fact, just yesterday, my nephrologist told me that one of the nephrologists told him that he didn't think I was even on the transplant list, due to "non compliance issues."  The dialysis nurses assured me that as of December 2010, I was fully active on the list.  They actually said that I one of the few patients they have who are.  Mom emailed the transplant coordinator, and I'm waiting for her to get home from work so she can check her email.  I could do it myself, I do know her password, but I don't want to invade her privacy.

[RichardMEL]

I think it's a very good point to remind ourselves that sometimes it's going to be outside our control and even if we do everything to the letter that, well, "shit happens" and you could reject for any number of reasons, probably nothing to do with anything you or your docs can have control over. Absolutely doing everything you CAN to keep it going - taking meds on time and correctly, keeping up with labs, drinking as much as you can and not getting dehydrated (I have to watch this at the moment as we have days >30C), being proactive with the transplant team when you notice symptoms etc just means you are cutting down the chances of rejection due to something stupid like skipping meds or something. Indeed my discharge booklet included a bolded line something like "the most common cause of rejection is not taking meds" they really are pushing compliance.. and you can understand why. Who wants to lose a kidney from a silly, easily preventable cause like that?

[wj13us]

I would just like to second what Richard says above.  Transplantation, like many medical advances, is a science not fully understood.  Sure its a gamble but there is plenty of evidence that there are certain things you can do to improve your odds.

A good friend of mine, George, started the Quarter Century Club a few years ago.  Its been mentioned on here a few times.  Its an informal internet based club for people who have had transplants over 25 years.  We have members for all over the world.  One thing we do have is a Yahoo group where we can exchange messages, ideas stories and just keep in-touch.  On almost a regular basis we'll have a new member who will come up with a survey about our histories, lifestyles, meds etc looking for that common magic bullet which will explain our success.  Needless to say it has not been found yet.  We've gone a deep as if diet Coke or diet Pepsi is better.  For the record it was split about evenly and then there were people like me who hates diet soda and doesn't drink it

Though we take different meds and have different histories one common theme is we tend to strictly adhere to our protocols prescribed by our doctors.  Of course that is no guarantee of success but I'm convinced it helps.  Just like in life there are people who take great care of themselves and die young and those who drink, smoke and have an unhealthy diet that will live to be 100.  But myself I'll play the odds.

A lot of good comments and suggestions here.  Everyone will have to find their comfort level but the best I (we) can do is share my own, personal experiences.

Bill

[RichardMEL]

heck the psychic who (correctly) predicted my transplant said I'd live into my 90's so maybe I should just take up drinking and smoking?! 

Life is an adventure with no guarantees -  even moreso for those of us dealing with kidney disease (yes folks, even those of us blessed with the miracle of a transplant still have it) - sometimes you just can't do anything to change what will (or won't) happen.

So I do what I can and try not to worry about the rest until it happens - after all fear leads to pain, pain leads to suffering... suffering leads to high BP!!!! Wise Jedi that Yoda.....

[carol1987]

Thank you everyone.. so many excellent responses......

I intend to do everything in my control to keep this gift .... but I know as has been said it is really a matter of fate after that!


KellyT I have only had one lab test since leaving the hospital... and I did just what you say you do... the day before I thought I was going less.... LOL

I am grateful for every day that I am free from dialysis and feeling good!!!!

[Brightsky69]

Wow...if I had a transplant for 38 years I wouldn't give rejection a second thought. And if my creatinine was as low as 1.0 I really wouldn't be worried about rejection. I am on my 2nd transplant right now. My first transplant was when i was 21 and it came from my mom. The doc said he had never seen such a close match as us. That transplant lasted 17 years and my creatinine only got down to 1.2 I never really worried about rejection with my 1st transplant.
My 2nd transplant was from a deceased donor with one antibody going against it. And my creatinine "range" is usually 1.9 to 2.1.....so rejection is now always in the back of my mind. I constantly check my ankles for swelling and prey everytime I get my labs that my creatinine doesn't show up on the high side. I had a biopsy not long ago and I was sweatting that. I really try not to dwell on the possibility of losing this kidney. I always want to stay positive and live a regular life with this kidney for as long as I possibility can. 
This transplant is a little over 2 months old and I want to keep it for another 40 years or so. 

[wj13us]

I guess just to clarify.  I don't per say worry about rejection there is little chance now that my body will reject it...but that is actually a possibility so that is why I'm still immnosupressed.  But with long term transplants they 'wear out"  Funny but that is the actual medical term that is used.  The reasons why that happens is not understood.

Brighsky my creatinine is in the 1.7 to 2.0 range, its been there for about 10 years.  What tends to happen is the creatinine makes a jump every so often, then stays stable for a number of years.

Brightsky don't take it the wrong way but I thought it a bit funny saying you would not worry if you had a transplant for 38 years and expect your to last another 40.  40 seems a long way away now but at 38 years 40 not so far away anymore.  I see people with 30+ years transplants loose theirs all the time.  So as the years go by the company I keep in the long term transplant group gets smaller and smaller.

Having said all that.  I think I'm at a point in my life that if a team of doctors came to me and said "Bill we know where to find the secret to long term transplant.  Unfortunately its in your transplanted kidney and the only way to get it if to remove it and dissect it."  Years ago I'd say hell no!  Now I'd say "When can we schedule."  One of the most difficult questions I get is when a transplantee comes up to me and asks me what I do to have a transplant so long.  You can imagine how many times I get that.  The younger they are the more difficult it is.  I really wish I had an answer.

Bill

[Ang]

as newbie in the tx caper, i think if you take of your self,rejection should'nt real occur

I think this is an unfortunate misconception, Ang. Unfortunate because if something does go wrong, people will agonize pointlessly about what they did to bring it on, and the answer will probably be 'nothing'. I am convinced it is mostly down to luck, and my experience bears that out.

rejection of transplants can and do and   will occur,yes when things awry you wonder what did i do differently.probably not a thing unless your doing the wrong things to excess.
a couple of weeks ago 8.30 pm looking at the meds box(why is that morning meds still in the box)
went to clinic 12 hours later,adv of what had occured in case labs were ^^%#. labs were best they ever been.
 :yahoo;found a way to improve labs and cut down on pills i gotta take (sick aussie humour folks)

[wj13us]

Ang:

If it makes you feel better the meds will go down.  What I take.

Morning 1 prednisone (my arch enemy)
            1 tagamet (for acid reflux non renal related)
            1 vitamin D (for good measure see prednisone above)

After dinner 1 tagamet (see above)

Before bed 1 ACE inhibitor for BP (may or may not be renal related but high PB always ran in my family)
                1 Imuran (old school transplant).

I remember post transplant I could easily put 10+ pills (tablets) in my hand and down them all at once..no problem.  I doubt I could do that today.

But what is really really funny is that I'm a Project Manager /Engineer at a Pharmaceutical development company....can't beat 'em join 'em.  As a mater of fact I should be working on some new drug now instead of typing this...but hey its Friday and the boss went home early.

Since there is already a press release on it I can write about it.  But there is a new drug in clinical trials now that was originally formulated for cancer that has been found to stop the progression of renal failure and in some cases reverse it!  I know too late for us but lets hope it works out.

Bill

[cariad]

Indeed my discharge booklet included a bolded line something like "the most common cause of rejection is not taking meds" they really are pushing compliance.. and you can understand why. Who wants to lose a kidney from a silly, easily preventable cause like that?

This is the thing, though, Richard - they do not actually know if this is true. Most compliance must be self-reported, and me, I'd just lie, as I assume most others would. And seeing something like that in some condescending workbook (not saying yours is, but over here, yes they are!) would have only served to set me off.

The only drugs they can monitor properly are cyclosporin and its descendants. I once had a nephrologist tell me that they could tell if I was adherent by whether or not I was anemic, because Imuran causes anemia. Nice try, sister. She arrived a little too late in my life to ever convince me that they could tell anything from my labs. I feel guilty for even writing this, but Northwestern even told me that they knew they'd never have problems with me and compliance because of my history. No, the reason they are not having problems with me and compliance is that I feel indebted to them, want this to work out for all of us, and know it's all for a limited span of time. I'm also a whole lot older, and we hope loads more mature.

I fear that a statement like "the most common cause of rejection is skipping meds" may be the result of assumptions by biased doctors. And they are biased, some of them, horribly. Riki's story makes me fume! I am not trying to kick off a great rebellion or anything, but how flipping infantalising - scare patients with ghost stories about rejection. This is what I miss most about my last GP. We would joke about how ridiculous I was with drugs. We left town for two years, returned and the first thing he said to me was "Well, I shudder to ask. What drugs have you been prescribed? And what are you taking?" I wish I could be honest like that with all doctors. I think it's a message they need to hear and also see for themselves, and I do think I am the person to deliver that message, just not until I have several more years behind me. I would love to sit down with some of these self-important doctors and give them an unflinching look at my behaviour with my first transplant, which could be corroborated by a full spectrum of witnesses to my life. I would love to burn their world view straight to the ground. (Oooo, don't I sound riled now!)