Almost in Denial.....again

[Ken Shelmerdine]

Yesterday my renal doc suggested I start on transplant list work up. To her astonishment I said I was not sure about a transplant. I said to her that my residual kidney activity gives me great benefits such as no fluid restriction and heamoglobin of 14.5. If the transplant failed 2 or 3 years down the line then because my own kidneys would have  'surrendered' all function to the new kidney they would be completely useless by then with no residual function to fall back on.

I thought again about this after she had left the ward. It occurred to me that on the other hand my RKF may deteriorate drastically some time in the future and I would have wasted all that time by not being on the list.

This is the agonising dilemma I'm faced with.

But my instincts have always been pretty good and my instincts have always told me that somehow I have may have been partly misdiagnosed. I say partly because although my blood test tell me I have malfunctioning kidneys I'm always thinking why have I never had any physical symptoms?

It was suspected I had a kidney problem 20 years ago after a routine medical for a life insurance policy. As far as I knew I was perfectly healthy but the doctor found protein in my urine sample. Several hospital appointments later plus an ultra sound scan I was diagnosed with Adult PKD.

Since then everything that the doctor told me (except eventual dialysis) has not been the case. 

No pain from kidney cysts, no kidney infections, no reduced output and no heamoglobin decline. My energy levels were good and still are to this day. And there are no other members of my family who have ever been diagnosed with PKD. Both my parents (I have no brother or sisters) lived to a reasonably old age with other ailments causing them to pass away eventually. But certainly nothing kidney related. None of my cousins or their families have any PKD history.

I started APD just over 3 years ago with still no symptoms and I worked full time leading a full and active life. Just before Christmas last I got peritonitis and had to have the tube removed. I decided not to continue with APD but stubbornly refused to go on heamo. I eventually relented but it was 3 weeks before I consented to have heamo lines put in. In those 3 weeks I had no dialysis and yet I recovered normally from the peritonitis with no effects from lack of dialysis.

I still work but on reduced hours because of having to attend dialysis sessions and as you will probably have seen from another thread that I don't have any UF removal. Although I do dialysis 3 times a week I only do 3 hours a session  My BP is typically about 135/80 before dialysis no matter how much fluid I have drunk and about 110 over 70 after dialysis.

I 'm thinking more and more now, WTF am I doing here, do I really need this dialysis shit. All sorts of things are going through my mind for example there is a study which contemplates the existence of a PKD 3 gene. Is it possible I have this and more importantly does it exist with no concsious symptoms? Am I being paranoid, or am I just a really lucky guy to feel so well with blood tests which show just 6% GFR?

Ironically the only time I feel less than 100% is occasionally after dialysis.

Oh and by the way, I never did get that insurance policy.

Sorry for the rant.   
 

 

[cariad]

Ken, that's a tough one. I can certainly see why you suspect there may be a misdiagnosis here, and why you might feel fed up, and that you're wasting your time on dialysis. It's a frustrating and disturbing thought.

I have heard of people being asymptomatic even at a drastically low GFR, it is all of the other factors, like lack of relatives with the same condition, that adds to the mystery. I think I would get on the list to keep your options open, and refuse an offer if it really doesn't feel right. Having a transplanted kidney is a poor substitute for having your native, functioning kidney (ask me how I know....) so I hear you on the hesitation.

If I had to guess, I would say that if you've been having your labs checked regularly, that you probably are just really lucky that you feel so well. There probably is kidney failure there, you likely need dialysis to avoid catastrophe, but perhaps the actual cause of the renal failure is something other than PKD. But that's just a guess from a layperson. I hope you find the answer.

Good luck, and take care.

[Sunny]

I think your good health results, even though you have kidney disease, is more a matter of just having good genes and a good healthy life-style along with good Medical care. Each of us is different and kidney disease affects us all in unique ways. Something is going very right for you and I hope it lasts your lifetime. However, Maybe it would be a good idea to get on the transplant list and start earning your wait time. You can always turn down a kidney transplant offer if you feel you are doing well. Maybe they did misdiagnose you with PKD. That is an interesting possibility. But the fact is, if your lab results are showing 8% GFR then you definitely have something wrong with your kidneys. A lot of us still do quite well with just 8% GFR. You are one of the lucky ones. Keep up the good results.

[bette1]

Just to confuse you a little more , I had a kidney transplant that stopped working after 12 years.  No rejection, just something called chronic allograft failure.  I still have residual function from the transplanted kidney.  I don't have to do any ultrafiltration, and I have no fluid restriction.  I had stopped urinating completly before the transplant. 

[BigSky]

I do not know how they run wait lists where you are at.

But since the wait time for a tx in alot of places is 3 years and is getting longer.  It would be worth seeing if you can get on the list and remain on inactive status but gain wait time.

That way if things get worse in 3,4, 5 or however many years down the road, you dont have to get on the list and wait another 3 years to make it to near the top of the list.  You would just need to have them activate you.

[paul.karen]

Wow that is one strange story Ken.

I tend to side with Bigsky.  I am on Two lists my status is inactive (but getting time).  I am inactive due to passing on getting a cardio stint placed.  I am afraid the Dye they will use on me to place the stint will wipe out my remaining kidney function making my situation worse then it is.  When my kidney function goes down on its own i will get the stint placed (if need be) the only way to tell if i need it is to have the dye injected in me.
But in the meantime i am accruing time on the lists.  And as was mentioned earlier you can always refuse a kidney if one were to come available to you.

[kristina]

Ken, I am sorry about your predicament.
I wonder, if you had no symptoms, how did the medics know about your kidney disease?
Were you diagnosed years before through a biopsy and they kept an eye on you and put you on dialysis
when your Creatinine reached a certain level?
I had my first kidney failure when I was 17 and a half years old when I was brought to hospital in a coma.
During the coma I was not put on dialysis but I was instantly put on the waiting list for a kidney-transplant and much later, when my health was stable enough to have a kidney-biopsy taken (still without dialysis), the report of 31.1.1973 stated, I suffer from chronic proliferative glomerulonephritis.
I was kept on the transplant list, had no dialysis and slowly over the years my kidneys recovered to function 40-45%, 
until a few years ago, they are now functioning 10% (still without dialysis).

After my first kidney failure I always knew that I was on the kidney-transplant-waiting list and that fact acted as a psychological crutch I was able to hold on to,
whilst doing my utmost best to give my kidneys every chance to ”carry on” and improve.
I am not sure if I would have done so well all those years, had I not had that psychological crutch to hold on to.

I don’t think it would wrong to get on the transplant list, you can always refuse, your kidney function may even improve.
But at least you won’t have the stress of not being on the list at all.
Good luck from Kristina.

[Ken Shelmerdine]

I wonder, if you had no symptoms, how did the medics know about your kidney disease?
Were you diagnosed years before through a biopsy and they kept an eye on you and put you on dialysis
when your Creatinine reached a certain level?

Yes Kristina that's about it. It was a routine medical examination 20 years ago.
Thanks for all the replies. I think I'll mention it to my doctor and see if I can do the build up and if my RKF is still OK then suspend myself from the list without losing waiting time. I think she'll probably go through the roof if I suggest this but I'll give it a try.

[Stoday]

It's not something you can igore at your age Ken.

The NICE policy on kidney transplantation is that over 65's don't get one except in special circumstances. Leave it another 4 years and you won't get the option, and that's assuming you don't have to wait...