Looks like end times to my kidney tx working are near

[Naynay99]

Hey. Not really sure where to put this.  New member here, I have a cadaver kidney tx that I got at age 13 and have had for almost 29 years.   My labs have been showing decreased kidney function over last few years and now my nephrologist wants me to get evaluated at a transplant clinic.   I'm scared about facing this thing that has been hanging over my head my entire life. 

I like this site as it seems much more honest.  I had at one time belonged to a kidney support group and had gone to see if anyone else with a transplant suffered from sometimes debilitating depression, and apparently bringing up the dirty secret that these antirejrction drugs that keep us alive may also be messing with our moods was politically incorrect and discouraged to be talked about.   I'm grateful for my tx but contrary to popular opinion, rainbows don't shoot out of my arse nor do i skip around and sing to the birds just because I get to wake up another day.   3 decades on prednisone and loads of other meds have taken a toll at times...
Anyway, I have been lucky that my transplant has lasted a lot longer than expected.  And I have had a great amazing life, except for those times when it has totally sucked. 

In the past, I always figured that when this kidney failed that would be it.  That it would be time to check out of here early.  The prospect of going back on dialysis and living my life on pause waiting for a possible second transplant sounds completely awful and horrifying and if I think about it too much it will make me go completely insane.  I guess 42 doesn't seem so old now that I have arrived here.   I have tried to live my life in the moment, bc I know tomorrow isn't guaranteed.  I have a retirement plan and pension that I honestly don't expect to ever need.   I'm almost okay with that thought.   I didn't have kids that i could have given my crappy genes to, I'm not married, I live alone;  other than my parents I don't really think the universe will notice when this disease kills me.  But I'm not done yet.  So I guess that means a future of dialysis and doctors and hospitals and a loss of freedom

So I will go to this 5 hour evaluation appointment and put on my best game face and jump through all of their hoops and try to see if I am deemed worthy of being put on the wait list.   I know I need to lose some weight and have been working on my diet.  I hope my having good insurance from my job will be good enough for them, as I have no real savings to speak of.   idk what else they are going to be looking for, I know there is a crapload of medical tests and meeting w a social worker and nutritionist and $ guy.  I am nervous about all of it, but mostly a future of being on dialysis for years.    When I was 13 and they told me how great life would be with my brand new kidney nobody spoke about this part of the transplant process- when it stops working....

Anyway sorry this was long and all over the place. Thanks for listening. 

[Paul]

You have my sympathies. However WRT your third paragraph: Last year I posted a reply to someone with similar worries. It would be bad etiquette for me to retype the whole thing again, but can I urge you to read that post through, it was written for someone else, but quite a bit of it of it could be of use to you to you too (not all, but quite a bit). You can find it if you click here ( http://ihatedialysis.com/forum/index.php?topic=34266.msg519705#msg519705 ).

It would probably be a good idea to read the whole thread too, as many other people had good advice on the subject.

[Naynay99]

Hey Paul. Thanks. I took a look at that post you referenced.  Some good advice given.  Point taken in re to “game over” not being the most logical initial option to consider.   I tend to react to things rather impulsively and see things in black and white.   I guess I’m just overwhelmed and frustrated and trying to consider all my options.   Idk.  I am not really sure I am strong enough to go through all of this all over again.  My 17 yo cat also has kidney disease, which seems somehow fitting.  Anyway I hope I still have some time, I need to at least make it to my 29th anniversary in July...  Thanks for your help.  Take it easy.

[SooMK]

Oh boy. This is every transplant patient's constant companion, I guess. I know it's something I'm always pushing to the back of my mind. Such a great long run with your kidney but I wish there had been more progress made on kidney disease innovations. I feel like I'm reading so much about progress but not seeing anything stunning being implemented for CKD patients. Twenty-nine years but nothing amazing has been made available to end the wait for so many people. Just think if it was possible for people to keep their transplanted kidneys indefinitely how many more kidneys would be available and fewer people would have to go through the dialysis/transplant waiting game. Welcome to IHD.

[Naynay99]

Thanks SooMK. Yeah I guess the science is still not that advanced.  I will say though that only a few years before I got my tx had they even begun transplanting children so I guess there have been advances, just not fast enough.  Hopefully new discoveries in stem cell science etc will find new treatments.   

The newer anti rejection drugs used today probably have less side effects which is a positive, but I still take the same meds for forever (cyclosporine, Imuran, prednisone). I guess my Nephrologist didn’t want to change something that is working, tho I am jealous of ppl who don’t have to take any steroids.   

I am trying to not freak out too much yet.  I have a transplant evaluation coming up, at the recommendation of my doctor.  Who knows, maybe I will be that one in a million to get a preemptive kidney transplant and not even have to restart dialysis.  Ok, so probably not, but a girl can dream. 

I am considering also trying to get listed at the tx clinic where I got my first transplant, even tho it is out of state.  I looked it up and one of the surgeons who did my transplant surgery still works there 29 years later, which is pretty cool.   Anyway I am trying to just enjoy the time left with my kidney and not obsess too much about all of this as I am quite good at getting myself worked up about stuff that hasn’t even happened yet.
AnywY thanks for the welcome.

[iolaire]

Congratulations on keeping your kidney for 29 years.  That puts you in a select group of very lucky transplant recipients.

I guess my Nephrologist didn’t want to change something that is working, tho I am jealous of ppl who don’t have to take any steroids.   

What dose of prednisone do they have you on?  I wonder if that could be adjusted?  (If not now then starting with the new transplant.) 

It could be the case that he doesn't want to take the risk but if you/he were to check with your original transplant center they would have not concerns.

I'm on 5 mg of prednisone starting with my transplant in July of last year.  They would have stopped it, they thought it safest to leave that low (to me) level of prednisone since my original kidney damage from the early 1990's was due to lupus (its been in remission for 20 plus years).

If you choose and are able to get a second transplant the transplant center would come up with a new working set of medicines before they pass  you back to your Nephrologist so be sure to talk about your desire to be steroid free at your initial consultations so you get a gauge of if its something you might be able to look forward to.

Also look at this evaluation as your best chance to get your transplant sooner rather than later.  The longer people wait for that initial consultation the longer they wait to get their transplant - unless they are already on dialysis - since the wait time starts with dialysis or being listed.

[Xplantdad]

I am surprised that you are still on Cyclosporine and Imuran. My daughter (when she had her heart transplant in 1990-so she's 28 years out) was on those two meds...but they changed them in the early 2000's due to long term use issues ...and that they had come up with a host of other meds.

Immunosuppressants are toxic to the kidneys anyways...so it's kind of a catch 22....which is why they monitor the blood levels closely. they play a balancing game...to suppress the immune system enough so that the body doesn't reject the transplanted organ, but not over medicate and hurt the kidneys.

My daughter had her kidney transplant December 2016...and is on Tacrolimus and sirolimus and 5 mg of predisone (and at a smaller dosage than she was on -when she only had the heart transplant.

Oh...welcome to IHD!

[Naynay99]

Hey. I am only on 5 mg of prednisone,which I a low dose but I stil think I get mood side effects from it.  Idk.   
Re ny other meds, I suppose why fix what’s not broken.  The cycloi level my dr always checks my levels of. 
Idk, ny sister was on cellceot as her antidejection med and she had really bad side effects so I shouldn’t complain too much.
It is rather awful tho that these meds hurt the very kidney they r keeping us from rejecting.   
Anyway thanks for the wlelfome.

[Paul]

I am jealous of ppl who don’t have to take any steroids.

There was a guy at the same transplant talk as me. He was in a similar situation to you (first transplant dying, soon need a new one). He was angry about having been made to take steroids because they made him eat more, and he had gone from slim to obese. The worst part was that in Britain we have a weight limit, if you are too fat you don't get a transplant. He was over that weight, and was desperately dieting to get low enough. The irony being that the reason he was too fat to have a second transplant was the drugs he had to take because of the first transplant!

[MooseMom]

Hiya, naynay, and welcome to our little community.

I agree with everything SooMK had to say.  Knowing that your transplanted kidney is failing has to be a recipient's worst nightmare.  I am so sorry that you are going through this awful situation.

That said, though, please don't be afraid of a tx evaluation!  I know this sounds weird, but I really enjoyed mine because it gave me the opportunity to gather information and ask questions.  And please don't think of it in terms of being evaluated on the basis of "worthiness".  I entirely understand that it can really feel that way, but the tx center wants you to be a success story, so what they want to know is 1.  are you physically strong enough to survive the surgery, 2.  will you be compliant enough to stick to the meds (you've already proven that you are, so you've aced that bit already), and 3.  will they get paid.

I'm very pleased that your neph is talking to you now rather than later about being evaluated.  Mine got me referred to a tx clinic right when my egfr dropped below 20. 

BTW, I got a cadaveric pre-emptive transplant.  Sure, I was lucky, but I worked really hard, too.  I got all of my tests done ASAP and was a good little soldier throughout.

Shame on anyone who thinks that just because you have a transplant means that you are a bad person if you aren't singing out grateful praises unto the universe 24/7/365.  We have plenty of sucky days just like anyone with two working kidneys.  Any support group that sees any moaning and groaning as a personality defect is NOT offering "support", so you will fit in just fine right here on IHD!

Listen, I was "pre-dialysis" for about 25 years, the last 8 of those which were hell.  Talk about Sword of Damocles!  Dearie me, I've so been there and have so done that, so I truly CAN imagine how you may be feeling.

I am not sure I understood correctly...do you already have an appointment scheduled?  When is it?  Will you let us know how it went?  I'm really eager to know your thoughts about it all.  Thanks!!

[Naynay99]

Hey all.  Sorry I haven't responded to any replies.  Been busy with work and stuff.  I think I am doing okay.  I am fighting the irrational instinct to push the self destruct button and am instead determined to survive forever even if just to spite the universe that seems intent on smite-ing me.   So my stubbornness and spite are keeping me going, and the universe can go suck it.   

I have my first Evaluation appointment at the transplant center tomorrow.  My friend offered to go with me, which was very nice, as it all feels rather overwhelming.   It will be a relief to get it over with and know what I am dealing with a little better.   
I was talking to my therapist about all of this and am sort of wishing I never brought it up because now it is all she wants to talk about.   And that LOOK that people give you when you tell them, a combination of pity and empathy and sadness and.secret relief it's not happening to them, where they will from that moment on see you differently, because you have now become that loathsome creature of a SICK PERSON.

She wanted to know what my parents and sister thought about all of this.  What kind of question is that? They are doing backflips!   Really?!  Anyway  I haven't spoken to any of my family about this yet, I want to get some more information first before worrying them.   But I did confide to two friends which I thought was a pretty good start.   My friend at wok has been supportive and he doesn't treat me any differently than before i told him which means more than I can say.  All I want is to feel normal. 

I have been reading a lot about dialysis options.  I think I am leaning towards PD.  That is what I did when I was 13. I would opt for home HD but I live alone.  I was reading about the dialysis system in the US and it is totally f-ed up.  Seems like making money is more important than good care.  But I suppose that is the American way.... I learned how much better and gentler on your body more frequent and/or longer sessions of dialysis are than the 4 hour 3x/week in center model usually done.   And I would rather do it at home.  So I think PD is my first choice.  Hopefully I still have some good time before having to make the decision though. 

Anyway, wish me luck at my evaluation appointment.  I guess it's starting to feel real.   I am going to try to bring the calmest, sanest version of my normal self to the appointment.   Thanks for listening.  Take it easy. 

[lulu836]

was reading about the dialysis system in the US and it is totally f-ed up.

Really? 

[kickingandscreaming]

I think PD is a very good choice.  I'm on year 2 and I really have no complaints except that it's a daily drudge that I do.  To stay alive.  It's not painful.  I can do it at home. In some twisted way, I actually look forward to hooking up at night.  It marks the end of the day and i'm still here.  I only hope that my peritoneum holds up well for the next bunch of years.  I don't really understand why so many people opt to do in center hemo instead of PD.  There is almost nothing about it that is an improvement over PD.  Of course, not everyone is a candidate for PD and in that case hemo makes perfect sense.  But I think the main reason is that the neph community continues to push hemo and not PD.

[iolaire]

But I did confide to two friends which I thought was a pretty good start.   My friend at wok has been supportive and he doesn't treat me any differently than before i told him which means more than I can say.  All I want is to feel normal.

I think work friends should deal with knowledge of your challenges well. Most people don't really know the significance of others major medical problems. But they will be sympathetic and supportive.

Good luck on the transplant evaluation.

[Naynay99]

Thanks.  The evaluation went pretty okay I think.  I'm so happy my friend came with me, as it was very overwhelming amounts of information.   
The social worker seemed to find me sane enough with a good enough support system to be a good candidate.  He did talk about insurance and said that my work insurance covers the transplant 100% but does not cover donor expenses which doesn't make any sense to me.  If I am on dialysis Medicare would cover it but not sure what I would do if I could get a living donor tx before I have to go on dialysis??
The doctor was impressed with how long my last kidney tx has lasted.   He wants me to lose some weight but said that my current weight shouldn't prohibit me from being listed.   However he emphasized that my best chance was a living donor. as the average wait time here is 5-7 years (Fck me!).  And that it's possible bc of my previous transplant that I could have more antibodies which could make it harder to match.

They have a big living donor institute with paired kidney exhanges and chains, and I know a live donor kidney lasts longer, so I get the push for it, but it's not like I have people knocking down my door offering to donate.  It sort of makes me feel like something must be wrong with me that I don't have anyone in my life that I know of who is willing to part with an internal organ!  Im sure if I was married my spouse would consider donating but I'm single.  My best friend is trying to donate to her dad, but she did ask the social worker if that didn't work out could she possibly be a donor to me which was nice to hear anyway.  But I mean how do you ask someone for a kidney?  I feel like all you can do is let people know your situation and if they don't offer to get tested then that is pretty much them saying no.   Idk

Anyway the coordinator said they would meet on Monday and if I am deemed a good tx candidate then they will send me all the tests that I need to get done.  I'm trying to just focus on that right now and trying to stay healthy for as long as possible.   getting thru al of this w/o going bat shot crazy is going to be a challenge, as stress is a big trigger for my depression.   I am trying to not freak out, but I think I am failing miserably.   
Anyway I Will let you know what I hear from the tx coordinator later this week.   
Thanks for listening.   

[MooseMom]

I'm much relieved that you are feeling OK about your evaluation.  That's great news!

I'm not sure any insurance covers the donor's expenses, but I think more ins. cos. are considering covering this.  Maybe the ins. of a donor covers expenses?  Probably not because ins. cos. don't really want to cover anything.  I'm sure your clinic can give you more advice in this regard the longer you are in the testing process.

You're right...all you can do is let people know your situation and see if they make you an offer.  Don't be surprised if they don't.  This is a gnarly problem for anyone needing an organ tx.

Do let us know what you hear from the coordinator later in the week.  We will all be rooting for you!!!

[Charlie B53]

Hi NayNay99!

I'm glad to read that you had your first eval meeting and that it went so well.

Take some small consolation that you are not the first that have had to go through all of this again.  Counseling can be of great help for many people when faced with adversity such as this.  It is a LOT to handle all by yourself.  Almost enough to make you want to drink!   Went those the days.  Alas.... I just settle for a mouth full and be a Happy as I can.

Daily prednisone is a bitch.  Even small doses have effects.  We learn to live with it, adjust as we can, what we can, and continue moving on.  It's never easy.  Normal people ain't got a Clue.  And never will.  This could be a reason many refer to those of us on Dialysis as 'Warriors'.  As we wage daily war with the side effects of this insidious disease.

I am currently on Hemo.  I did 3 1/2 years on PD.  On PD i had virtually NO limitations on diet and fluids.  Sadly not so with Hemo.  Very limited on fluids and I've had to virtually cut out all potassium foods.  A major change.  But when I consider the time difference, there is hardly any real comparison.  PD required almost 12 hours, granted, some of that was sleeping, but still, my evenings were terribly cut short, I couldn't be out and watch the sunset.  Hemo, I get up, get in, and get done, three days a week.  Since I am an early riser anyway this works out well, for me.  But it isn't for everybody. 

Dialysis CAN be fit into a lifestyle of your own making.  You need to learn as much as you can about both methods.  All of the whats, whens, whys, hows, and most of all, how can you fit this into your schedule?  It can be done.

As for Ins paying donor costs/expense, want to bet they will deny everything claiming it is all 'optional' procedures and not life saving for the donor?  ALL Ins Co's suck, some just not as much but they still suck.

Ask away, we will be hare for you.

Take Care,

Charlie B53

[kitkatz]

Good luck with all your testing and such.   It can be a real adventure.

[Athena]

Oh boy. This is every transplant patient's constant companion, I guess. I know it's something I'm always pushing to the back of my mind. Such a great long run with your kidney but I wish there had been more progress made on kidney disease innovations. I feel like I'm reading so much about progress but not seeing anything stunning being implemented for CKD patients. Twenty-nine years but nothing amazing has been made available to end the wait for so many people. Just think if it was possible for people to keep their transplanted kidneys indefinitely how many more kidneys would be available and fewer people would have to go through the dialysis/transplant waiting game. Welcome to IHD.

This is so true. It is exactly what I think & feel about medical research in tbe field of nephrology - zero effort & hence zero results!