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After a tense first run on the paired list we have not been matched it was always a long shot but I had my fingers crossed and everything!
I have been provisionally booked in for a PD catheter at the end of July (despite the nephrologist saying that I "wouldn't last a month without dialysis" almost two weeks ago......) on a low phosphate diet (I'm at 1.92 at the moment) and feeling a bit adrift.
How log after the catheter is in do they usually start dialysis? The nurse said they can use it straight away but don't like to, I'm a bit worried by the time they get around to sorting it I will be a bit late to leave it long (my GFR is 8 and was 12 8 weeks ago).
I was also wondering how likely/quickly I will be able to get the overnight machine (don;t know what they are called!). I know from reading the forum that they like you to do CAPD for a while first but I was just wondering how long people have waited?
I had to wait four weeks after my PD catheter was inserted, before they had a dialysis training place available for me.
During the four weeks, I had to keep going into the hospital regularly for blood tests etc. I assume that if there had been a rapid decline in my eGFR, I would have jumped the queue for a training place.
However, I never learned to do manual CAPD, I started straight away with the overnight APD machine.
I hope that I will be lucky with a machine like you, I am a teacher so was hoping to be sorted by September ready to go back to work..... fingers crossed!
Do you know what they look for in the blood results? Just GFR, potassium and phosphate or is anything else vital?
When I was pre transplant, they were mainly worries about Creatinine, which where they get GFR, but my clinic rarely talked about GFR, more about my creatinine levels, Urea (which starts to build up when your kidneys get really bad), and the Potassium, Phospates & Sodium.
They also kept an eye on my parathyroid levels as that can apparently creep up as well. I was put on alfacalcidol (Vitamin D I think) to try to keep my parathyroid under control. I'm still taking it.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Sorry to hear that you have not found a paired match.
My PD tube was fitted in a rush as my function was found to be at 8%. Pre op after work on a friday, operation on a monday and then dialysis the following monday in hospital confined to the bed to prevent hernia etc.
There are many way to go forward from here and much would depend on Creatinine and how your hospital works, good luck
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.
My living donor and his family are doing all well.
My creatinine was 470 (giving me a GFR of 9) two weeks ago but seems to be rising fast! I'm on calcichews, one-alpha calcidol (vitamin a or d?) and ramopril.
I'm planning to have regular blood tests as I can book them myself at the GPs and no one ever prompts me so I can book them as and when I like (within reason!).
My husband did speak to the GP who seemed surprised that my GFR was so low and they were not planning anything until the end of July but he hasn't done anything so can;t be too concerned.....
Actually tests aside they always ask you how you are feeling. That is probably the most important measure. Some people need dialysis when egfr gets down to 15 and others way way down. I had my first catheter fitted that leaked, so they waited for about 3 weeks and by then I was feeling so crap they re-did the operation. It was about a week later that the second settled OK with no leaks and I was away. Hate it love it that dam tube keeps us alive so get used to it as soon as you can. I too have been on the paired list for 3 runs now without a match. I am unfortunately blood group O so not many even on the paired exchange floating about. Hope it all goes smoothly and you catheter works fine first tie round. I know they all say everything is done fairly but I have a distinct feeling it is as fair as they like it to be. Some on here refuse to see any possible flaws with the system but I always remember they are humans and ALL HUMANS are not perfect. I must be one of the few Anyway the latest news is that it appears my kidneys are so big there is now no room for a transplant, so bang I'm off the lists until further notice. They now want to remove one kidney to make room for a transplant. It never ends this story !
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
You may not be ready to go back to school in September....
I am a teacher too (primary). I had my PD catheter inserted in the first week of the September term three years ago, and went back to work four days a week just before the October half term. I only work four days a week, but this was very tough, and in retrospect, I think I should have waited a bit longer before going back.
I know there's another teacher who's a member of the forum. I believe she had her PD catheter inserted at the beginning of September, and went back to work in January.
Oh Grey, that sounds terrible, I'm not coping very well with the chopping and changing but you sound like it's even more up in the air for you.
I'm blood group O too! My friend should be joining the paired list for the next run and she is blood group O but not a tissue match for me.
Were you talking about the paired list or the catheters when you said about it being fair? This is my first experience with all of this but I am learning fast that if you sit back quietly and don't fuss you get ignored (especially by transplant coordinators!!!!!!)
Surely they can remove a kidney if and when you get a new on - kinda swap them in?!
Mandy, oh dear, I'm in three days a week but self employed so really hoping to be back for September. It's good to hear what happened with other people though so that I can plan.
Rheaybou, is a hernia a big risk then? They seem to say I can use it straight away if needed?
When they put in a new kidney they leave your old ones in, unless you have PKD and they're so big they're interfering with your insides, or your old ones are diseased in some way (infection that may spread, cancer) that will harm you.
They actually put your new kidney in the front near your hip, and wire it into your leg. For a while I had 3 kidneys!
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Soobee, yes my kidneys are very big and there is no room for a transplant. The surgeon said trying to do both at the same time is just too big an op. so they will take the one out first , which because it is diseased with PKD is considered major surgery, then only can I go back on the list. I have up and down days as you will tell from my posts. Problem is I was a vey fit healthy outdoor person all my life and now have been reduced to this so it has quiet an impact on my head. I will however eventually cope and hopefully we all get the transplants we need.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Tibbs, thanks for that, I am woefully ignorant but learning fast!
Fingers crossed for you Grey, I think I am lucky that I have FSGS so based on my Dads experience mine will "shrivel to raisins and disappear"!!
I understand what you mean about loosing your fitness, I keep realising how much I;m slipping when I can't do things like carry a basket of washing down the stairs without resting - on a positive people keep telling me how well I look! It's bizarre.....
jstuartrobson wrote:I don't miss those chalky calcium tablets. Did anyone try the fish tablets? Maxepa?
I was prescribed Maxepa so I assume you have IgA Nephropathy.
To Soobee, I think it was a few weeks after my PD catheter was inserted before I had the training. I also had a test, a few weeks later, to see how well my peritoneum transported waste products etc. I was classed a low transporter so overnight PD, using a machine, wasn't an option for me.
July 2008 - transplant - living related donor
April 2005 - dialysis - tunnelled neckline, then CAPD (15 months), then HD (left wrist AV fistula)
January 2004 - diagnosis - IgA Nephropathy
Oh no Adam, I didn't even know that was a possibility, I really hope I can use a machine if I'm lucky enough to get one.
Thank goodness for this forum or I wouldn't have a clue, the hospital haven't really given me much info (to be fair, I'm sure I haven't asked the right questions) but most things have never occurred to me before.
Still I suppose they wouldn't be letting on about the thrills and spills of needing daily laxatives and all of the other day to day things I am learning about on here just yet....!
it was always a long shot but I had my fingers crossed and everything! 
Anyway the latest news is that it appears my kidneys are so big there is now no room for a transplant, so bang I'm off the lists until further notice. They now want to remove one kidney to make room for a transplant. It never ends this story !