Fistula Problems

[Python]

Ian is still at the hospital as I write this.  He was up there to get a fistula made today.  He  phoned a short time ago (my husband spoke to him so what info I've got is second-hand) to say they opened up his arm then said something about his veins being too small and as far as I know, it sounds as though they've opened up his whole arm.  My husband said Ian is very upset.  He had his arm examined in December so the surgeons could decide where to put the fistula so what's gone wrong?

I am really upset and angry as this is the second time there's been a major c*ck-up with this hospital.  The last time they couldn't diagnose a classic case of appendicitis, despite being told twice by our local hospital that he had appendicitis with the result that his renal hospital ended up mutilating - and I mean mutilating my son's abdomen.  The local hospital didn't want to do the appendectomy because Ian was on PD dialysis and they didn't have the expertise for renal patients.  He's cut from about 2 inches above the navel, round the navel down to his pubic bone and because of this he had to be opened up a second time to remove the PD catheter because he developed a lot of adhesions.  They cut the same scar, all the way down.  He's been left with a really ugly scar for the rest of his life, and all because that hospital couldn't get it right.  Now they've done the same thing with his arm.

We don't know which way to turn any longer.  So many of our NHS hospitals in this country are incompetent.  We have doctors who really should not be practicing.  Surgeons who are no better that butchers.  I'd trust my vet before I'd trust most of these doctors.

They've finally decided to put Ian on the transplant list within the next couple of weeks.  It's only taken them 5 years.  It should have been done years ago but his consultant has a thing about transplanting teenagers

Would we trust them to do a transplant?  No.  They'd probably stitch it to his ear

Once we had a health service and hospitals that were the envy of the world.  Not any more

I think we'll be seeing a Lawyer this time.  Enough is enough!

Sorry I haven't been on the forum for a long time but we lost our internet connection (modem died) and have only recently come back on-line.

Also sorry for the rant but I so need to talk to people who understand.

[angieskidney]

I remember when they did mine near the wrist it turned out my veins were too small even though the surgeon said they were beautiful when he was looking before hand where to operate.

I discovered that if the dialysis patient gets dialysis right before the surgery and gets to his target dry weight that this can be a bad thing. My first fistula failed after only 10 days because of this.

The 2nd one I made sure to be .5kg up and it made all the difference! Plus it had to be further up my arm.


It is a shame how so many doctors don't want to touch a dialysis patient. My family doctor always says to speak to my Nephrologist even if it is not at all related to my renal failure or dialysis.

Ian will have to get used to having scars all over his body as time goes on. I have 11 so far and I am 33. My first was when I was 16 and I didn't deal with it too well at all. What teenaged girl would?  But it sucks when you know it could have been prevented! 

They've finally decided to put Ian on the transplant list within the next couple of weeks. It's only taken them 5 years. It should have been done years ago but his consultant has a thing about transplanting teenagers

WHAT??!?!?

I was transplanted when I was 16! I have known people that were transplanted when they were 9!

I think we'll be seeing a Lawyer this time. Enough is enough!

Go to the local newspapers as well! All of them!

And don't worry about ranting! Here you are allowed all you want!! 

[Python]

I was transplanted when I was 16! I have known people that were transplanted when they were 9!

Go to the local newspapers as well! All of them!

Ian has been on dialysis since he was 15.  He's 20 now.  Ian does have some residual kidney function left and it's enough to keep his bloods good without medication.  This has always been a bone of contention between Ian and his consultant.  Ian was prescribed Folic Acid, Alpha-Calcidol and Calcichew.  Every time he took them his bloods went out of sync.  When he didn't take them, his bloods were good.  After Ian got mutilated last year with the appendix fiasco his consultant just happened to come into the ward at the right time as we were there so we took him to task.  He said that he didn't want to put Ian on the transplant list as he kept refusing to take the medication.  I said to him that when Ian took the medication his bloods went all over the place and when he didn't take it, his bloods were fine, and that he had the documentation to bear out what Ian was saying was right.  I asked him point blank that if he was on medication that he knew was doing him harm rather than good, would he continue taking it?  The answer was "Erm, well, no".  I rest my case on that one.  The consultant then went on to say how many teenagers he'd seen with kidneys failing after a short time because they felt so well they didn't bother with their anti-rejection drugs.  I told him it was grossly unfair to tar all teenagers with the same brush.  Since we took the consultant to task, his attitude has changed and he is now keen to get Ian transplanted.  He at least had the good grace to apologise for the mess their surgeons had made of Ian's abdomen and said himself he didn't know why they'd done it that way.

I have thought on going to the newspapers but over here if you go to the newspapers and there's possible litigation then it can prejudice any court case that may come about.

[angieskidney]

The consultant then went on to say how many teenagers he'd seen with kidneys failing after a short time because they felt so well they didn't bother with their anti-rejection drugs.  I told him it was grossly unfair to tar all teenagers with the same brush.  Since we took the consultant to task, his attitude has changed and he is now keen to get Ian transplanted.  He at least had the good grace to apologise for the mess their surgeons had made of Ian's abdomen and said himself he didn't know why they'd done it that way.

I have thought on going to the newspapers but over here if you go to the newspapers and there's possible litigation then it can prejudice any court case that may come about.

I remember when I was a kid, the Prednisone made my depression worse (I was already depressed as I was an outcast because of how weak and sick I always was before I started Peritoneal Dialysis) and I became suicidal. I didn't take my Prednisone because I didn't like how it made me get fat from 98lbs to 130lbs. I was so embarrassed. As a teen things are more on the level of being accepted by your peers. When the coordinator wouldn't put me back on the transplant list in 2001 (11 years later) I said how I am no longer a kid and I do things differently now. I know my health comes first, not acceptance by others, and I know the reprecussions for what I do. They put me on the transplant list but only if I agreed to get counselling.

2 years ago I went to a kidney symposium in Toronto where I had my original transplant. I saw the transplant coordinator of the children's hospital I went to and she apologized for what I went through explaining that back then they didn't realize just how kids and teens were affected. It was more the "you need this to live. You take your meds. You be compliant" attitude. Where as with kids things need to be explained more and there should always be counselling as kids that are different in any way from their peers never feel they fit in and don't feel they can talk about it with their peers.

It angers me when Transplant coodinators still don't understand and judge. It is unfair. We are not text books but people!

[nextnoel]

I'm sorry you're having such miserable problems - rant away all you want, we can take it!  I hope you have better fortune soon!

[Joe Paul]

Hopefully things will turn around soon