newbie

[twfarler]

Hello, My name is Tom and this is my first post. I've been on the kidney transplant list for 13 months now. I started peritoneal dialysis about a month ago. My doctor wants me to have a fistula put in my arm in case my peritoneal catheter acts up. I'm really not wanting to have a fistula so I'd like to hear from someone who has one just how bad it is. I have read a little on the internet about what to expect from having a fistula and was wondering just how necessary they really are ?

[opie]

Hi Tom,

I have been on PD for 4 years now and even with hiccups and problems along the way I have never needed a fistula or Haemo.

Is there a reason why they think PD may be a problem for you? Usually if you are a PD patient you don't have a fistula as a back up (at my hospital anyway, as it isn't usually necessary)

[Colinbell]

Hi ,I had a fistula back in October ,what a disaster it has been modified 3 times and still does not have enough flow to be useable, I have two lines in my chest at present and they are fine and allow easy access for haemondialysis which after 20 weeks of training I now do at home. I'm hoping to have a transplant providing that i am suitable for it ,I have had most of the tests and go to my hospital later this month. Going back to the fistula ,I have had my other arm scanned but I don't have a great deal of hope that it will be any better,the problem in my case is that I am a type 2 diabetic and I have quite a lot of calcification in my veins. Everyone says that a fistula is the gold standard of dialysis and I am sure that the success rate is good,I think I'm just unlucky I've never been a smoker I think it must be the diabetes. Good luck

[twfarler in reply to Colinbell]

Hi Colinbell, Glad to meet you and thanks for the response. I too am a diabetic and have been on insulin for 52 years so I may not be a good candidate for a fistula anyway. Have you considered Peritoneal dialysis? , it seems to be working good for me.

[Charlene_Coxhead]

Hi

If you really don't want to have a fistula then you should say to them and state you would be happier having a temporary neck line if a problem ever occurs with your PD line.

I guess they think they are being proactive and maybe they thought you would feel more reassured that you had a back up.

Don't ever feel like your being pushed into something your not happy with. Ask questions and query their choices.

I'm just about to have my fistula installed as opted for HD at home. I've last 13months longer than they thought and have excellent people looking after me.

Where are you treated

Charlene

[twfarler in reply to Charlene_Coxhead]

Hi Charlene, Thanks for responding to my question. I'm being treated by Nephrology Associates in Little Rock. Dr. Bienvenue is wanting me to have the fistula. Is the temporary neck line the same as a heart catheter?

[Charlene_Coxhead in reply to twfarler]

I don't think so, heart catheter is to look at your heart and your veins and arteries going from and to the heart. I could be completely wrong

Charlene

[toeragthecat21]

hi ..idont understand why your doctor wants you to have a fistular..unless you have had problems with blocked tube you had put in your abdomen...i had peritineum dialisis for two months with little problem..is this doctor a specialist..if not ..go to one..or get second opinion...if a pipe blocks it can be unblocked...i havnt heard of anyone who has had both forms of dialisis at the same time...peritineum dialisis is the kindest form to have ...iv heard lots of negitives about heamo dialisis but no e about peritineum...take other advice...regards toerag..any worries dont hesitate to get in touch

[Philipjm]

Hi,

I have been on CAPD for 18 months Very successfully. Except for 3 bouts of peritonitis so in Feb I had my catheter removed as it was colonised with a bug, new catheter fitted 6 weeks ago and started CAPD but was draining very slow, tried heparin in the bag and this has helped, just 1 bag a day is slow so I can accept that. My problem

Is I have peritonitis again, very boring. After 4 times, my consultant is arranging for me to have a fistula fitted as a backup should the peritonitis not clear up.

Taking with your PD nurse and consultant is the best thing to do, they always take time to explain what is happening.

My consultant gives me a call at home when things are not going to well, thanks for our wonderful NHS.

Philip

[Sandybru]

Hi Tom

I was on PD daiyalisis but it didn't go well so I had a fistula put in my left arm (they usually put it in your less used hand. I had my op under local anesthetic . It took 2 hrs. It wasn't pain full at all . The fistula didn't cause any major difficulties My arm might go dead now and again but that passes when I move my arm. I've had my transplant now but my fistula still works just in case I go into rejection. Sandra

[LeilaN]

Hi Tom,

I was on PD dialysis from February 2017 till now when I received kidney transplant. I was well informed about pro/cons of both dialysis and opted for PD due to my active life. I am glad that I decided for PD as it did not restrict me much in my sport activities - apart from being out of breath quickly as I carried 2000ml of extraneal fluid in peritoneum. I have issues with exit site due to granulation but not infection at all. If your PD is going well, then stick to it or they can adjust your prescription and CAPD settings. PD catheter is quite straightforward and does not act up at all as you keep fluids in and out every night. So being clogged with fibrin is quite rare but can happen. Good luck and be always informed with different sources and have your say! Leila