When is it time for that 'talk'?

[Shaymon]

If you read my introduction you'll notice that I;m having a fistula created in the next couple of weeks. What concerns me is that I have
yet to have any sort of in depth discussion about what type of dialysis treatment I would like or that would suit me best.

At what stage did you have that talk and how did it work out? were you all in agreement or did you have to fight your corner to get the treatment you wanted? By the way I'm form the UK.

Looking forward to see what you have to say as I think that I need to start to push this through now.

Kind regards

Shaymon

[MooseMom]

I did my research before having the talk.  So when it was time for my fistula to be created, I already knew what I wanted and I already knew that my neph's clinic offered training in it.  My plan is to train on the NxStage machine and do home hemo; I will NOT do the thrice weekly inclinic sessions because I do not think that way of receiving dialysis is healthiest.  It's not a bad idea to think about what you DON"T want.

What options are available to you where you are in the UK?  (I used to live in the UK...where exactly are you?)

[Bruno]

That's normal, it gives you the option of peritoneal or haemo dialysis. Not everybody is suitable for pd, so the fistula now is a great time saving fallback. You've got a smart neph.
 

[mogee]

I was in 'renal management' for six months before I started dialysis, and I was given only a bit of info.  I found out about it mostly through my own inquiries.  My fistula was made a full year before I started.

I hope you are satisfied with your renal team.

[rsudock]

i was never given the option of pd it was always understood that I would do hemo...I had my fistula created well before I needed it and then I got a transplant and never used it for 10 years....

[okarol]

Are you hoping to get a transplant? Do you have a potential donor? That would help you decide what type of access you need, if it's short term or long term. The standard used to be to install a fistula immediately, but now that they have found that the back pressure on the heart can be a concern, it's now recommended when dialysis is imminent, and possible after using a temporary chest catheter.
My daughter's neph kept saying "Let us know what kind of access you want" but we really never knew what all this meant. Good luck!

[Donna360]

Hi Shaymon

I'm also in the UK and haven't yet started dialysis though I will be lucky to get to the end of this year without it! I did my own research and decided on home hemo as I have a dog who constantly sheds hair so there will be less chance of infection. How good are you with needles? is there someone who can be with you when you do it if you go for the home dialysis? I am with the team at Sheffield and they have all sorts of meetings for different stages. I also had a dialysis nurse come and visit me at home a few weeks ago so I could ask all the questions i wanted.

I think this is the best place to be asking questions as there are all sorts of things on the Internet but at least you know you are getting first hand experiences on here.

Good luck with whichever you choose xx