Dialysis

[Basilbonce]

Hi I would like to introduce myself I am a 45 yr old woman who’s been diagnosed with lupus in 2009 . I have been told only today my kidney function as dropped to 9 % so I will have to go on dialysis till I get a transplant. And I was wondering if anyone else is on home dialysis as that’s where my minds going ,

[svfarmer]

Hi and welcome to the group - I’m so sorry that you have to go on dialysis being so young too x

[Basilbonce in reply to svfarmer]

Thank you I have been on dialysis back when I was first diagnosed but wasn’t on it long I am lucky I got 11 more years without it just need to get seriously thinking which dialysis I want to go on while am on the transplant list ,

[Jmiller623]

Welcome Basil! Nice to have you on here. So sorry to hear about your current ordeal. There are definitely people on here that get dialysis. I’m sure they will chime in. When you say which type... do you mean peritoneal vs hemodialysis? There have been many many studies on which is better with conflicting results. The one thing that studies seem to show is that peritoneal dialysis may confer a slightly higher mortality rate (papers below) after one year but even this has been debunked by other studies. They both seem equal in safety and efficacy. If I had a choice, I’d probably go with hemodialysis just knowing what I’ve seen in hospitals when working as a physician. It just seemed much cleaner and simpler to hook up to a machine that filtered blood. I think we use hemodialysis over here in the states more than peritoneal dialysis. I don’t think you’d be wrong with choosing either. Seems one doesn’t confer any advantage over the other beyond quality of life. Whichever makes you more comfortable is what you should pick. Also, it is possible to try PD and switch to HD but rarely does it go the other way around.

pubmed.ncbi.nlm.nih.gov/160...

ncbi.nlm.nih.gov/pmc/articl...

Sending hugs your way! Take care. ❤️xx

[Basilbonce in reply to Jmiller623]

Hi there thank you for taking the time to write to us yes I have been reading up on the difference between the two dialysis you mentioned it’s got my head in a spin I will read up the link you sent hopefully I will have a little while to make my choice , take care too , x

[WinterSwimmer]

I am so sorry to hear this. I am not in the same situation (yet) although I came close a couple of years ago but have got better, thankfully. I think I would prefer home dialysis if it was me - then you can dialyse (? is that right word?) overnight, have least interference with your day to day life and so retain more independence. I am sure there are also downsides to this but for myself I would not like to be going back and forward to hospital all the time (and the distance would make it prohibitively expensive). Have you been offered a choice?

[Basilbonce in reply to WinterSwimmer]

Hi yes I have been offered a choice to go with which ever would suit me there is pros and cons with all . I just need to work out which will be best for me and my husband my kids have now moved out so am lucky I don’t have to juggle school runs anymore . I have my first home visit in a months time so I have till then to do more research .

[CecilyParsley]

Hi Basilbonce ( loving the name). Nice to meet you. I am so very sorry that you are struggling with your kidney function. I have no advice to give Zi just wanted to send you big Cwtches. I know the lovely People here will be able to share their experiences. Good luck with everything 💐 xx

[Basilbonce]

Hi there Cecily it’s nice hearing from other people especially others who are going through similar situation. I haven’t spoken to anyone else in the 12 years having my condition besides my family. To look at me you wouldn’t think anything is wrong as I look fit as a fiddle . Take care x

[Pumpkin2009]

Basilbonce, I just want to let you know that I wish you all the best. You are faced with such a challenge and big decision. I don't have any answers, but to trust your instincts for what is the best for you.

Healing hugs.

[Basilbonce in reply to Pumpkin2009]

Thank you healing hugs back xx

[More-Knowledge-Rules]

hey basil! just so ya know you gonna be ok! and if you run into problems we are always here! heck if I could id give u my kidney. Keep your hopes up tho and don't worry! You gonna be perfectly fine!

[Basilbonce in reply to More-Knowledge-Rules]

Hi thank you for your lovely message and for your positivity that’s one thing I always tried too do stay positive . I had a good 10 yrs with no problems living a normal life my lupus effected my organs unfortunately my lupus went undetected for a long time and this affected my kidneys in early stage .But my kidneys just slowly started to deteriorate . I have just amazing family as 4 have come forward to get tested to see if they have a kidney match , if you have any questions at all please feel free to ask anything anytime xx

[u175]

Would always advise you go with peritoneal dialysis. It gave me more freedom and as you still have some function, be it small, it is kinder to the kidneys and heart. I soon went from day bags to overnight dialysis - within two weeks. Also, for some of the time I was on dilaysis, I was 'dry' during the day. i.e. not carrying liquid in my peritoneum cavity. Even when I did have liquid in the cavity I hardly notice it. I was on CAPD for 4 1/2 years before my transplant and was able to work, go on holiday and exercise.

You should get a renal nurse to talk you through the pros and cons of both but would definitely go with PD if you can.

[Basilbonce in reply to u175]

Hi thank you for your advice much appreciated I have been studying all avenues . I would love the freedom to still work and go on holiday , can I ask how are you now after having a transplant ,

[u175]

I had the transplant nearly 7 years ago and do feel good. I was very fortunate to be a match with my husband who is truly amazing. We were in a state of shock when we learnt that we were compatible. Before going on dialysis I felt pretty awful just walking a short distance was a huge effort. The dialysis helped a lot but it was not until I had the transplant did I realise how much I had adapted and 'just got on with it'. The transplant was life changing and I hope that once you are on the transplant list you will not have to wait too long

BTW the holidays are relatively easy to organise with PD as the fluid bags can be delivered to your hotel ahead of your arrival. All you need to take is the machine and the pipe work etc. which is heavy but comes in its own trolly case.

[Basilbonce in reply to u175]

Am happy to hear you found your match and it being your husband too , I have had quite a few people come forward asking me for details how they go about getting tested ,

[u175]

It was my renal consultant who asked me if there was anyone who might come forward as a potential donor. The renal staff at your hospital are always very interested in potential donors. All the best