Greetings from the UK

[xblue1982]

Greetings everyone!

My name is Pete, I'm 31 and from Stoke on Trent, in the UK and I've been receiving in-centre OHDF (On-line Haemodiafiltration) for 9 months now. My treatments are 3x weekly for 4.5 hrs per treatment. I've been lurking here on and off for the last year or so, and, I thought it about time I got myself signed up, so here I am!

I was first diagnosed with CKD when I was 27, a few days after my birthday. I had felt something wasn't “quite right” for the previous year or so but didn't really think anything of it, well, that and male pride about going to the doc got in the way. A lesson I have thankfully learned now! The doctor after asking the routine diagnostic questions said it was probably just a stomach ulcer but was going to do further tests to rule out anything more serious. I was urgently admitted to hospital, pushed from pillar to post while they figured out where to put me, I ended up on the gastric ward (which further bolstered the notion in my head that it was an ulcer we were dealing with), so you can imagine the shock when the nephrologist came to talk to me about my kidney failure. It turns out I had had malignant hypertension for who knows how long and it had obliterated most of my kidneys. Over the next couple of years I managed to get my GFR back up to about 32 and after a BAD experience living under a dodgy landlord (I'll discuss THAT nightmare another time!) it knocked all my progress out from under me and I descended back to CKD stage 5 again.

Fast forward to April 2013, I started to feel lousy and was referred to start Haemodialysis, I had my first session on the 12th April to an amusing result, My neph came in halfway through and told me I had a reprieve from HD as over course of a week my GFR has doubled mysteriously, needless to say, I took the offer to stop immediately and go home to “celebrate” my bit of good news. Haha

Fast forward again September 2013, Just before my birthday, I got that old feeling again, and being determined not to spend my birthday hooked-up I went into “strict mode” with myself to try and stave off deterioration as long as possible (probably wasn't my greatest of ideas but it paid off on that occasion), as soon as my birthday had passed I rang my neph and told her I thought it was time to start HD again, and the precautionary blood tests she ordered confirmed as much.

As previously mentioned I dialyse in-centre, but I am currently involved in “shared care”, where I am taking over the process of dialysing myself from the nurses with a long term goal of self care and home-haemo. Also, by learning to self dialyse I personally feel I have more control over my treatment by having direct involvement in it.

Well, that's enough for now. If you have any questions ask away!

Pete 

[Ninanna]

Welcome Pete!  Thanks for sharing your story and it's good to have you here.

[Zach]

On-line HDF is considered one of the better forms of renal replacement therapies.
Unfortunately, it's not offered here across the pond.

Good to have you with us at IHD!
 

[lainiepop]

Hi Pete! Im in the uk too, in Bournemouth! Good on u for Wanting to dialyse at home, this is quite rare in the UK isn't it?

[JW77]

Welcome

I'm down in London.. I don't actually mind dialysis, WHEN things are going well.  Its the complications and idiots I have to deal with that gets on my nerves!

[Darthvadar]

Hello xblue...

Nice to have you on board the good ship IHD...

Visit and post often...

Darth, Moderator....

[xblue1982]

Thanks everyone for the welcome! 

I don't actually mind dialysis, WHEN things are going well.  Its the complications and idiots I have to deal with that gets on my nerves!

I don't mind dialysis that much either, I'm one of the few on our unit that ALWAYS seems to be able to muster a smile and a joke. I don't really seem to really suffer many complications, the occasional bout of hypotension and cramping, but yeah, dealing with some of the idiots can be quite a trying experience. I get particularly irked by those who hear the word "dialysis" and assume I'm living a death sentence. *sigh* So I do my best to enlighten them if they are willing to listen.

Good on u for Wanting to dialyse at home, this is quite rare in the UK isn't it?

It is indeed quite rare from what I have seen, I believe a lot might be down to lack of adequate information, I mean, my unit has mentioned that Home Haemo is available, in fact with me being an "ideal candidate" for it, I am being 'pressurised' into doing it, but the unit has been lacking in details being readily available for further consideration of the option, most importantly "what are the financial implications?", with our unit lacking a social worker, that information is simply unavailable at present. My unit does dialyse a LOT of elderly people too and they seem lacking the confidence required to home dialyse and so the subject isn't really approached with them. Which is quite understandable.

[Poppylicious]

Hello Pete, and  to ihd.com from another England-er (eastern side). 

... but didn't really think anything of it, well, that and male pride about going to the doc got in the way. A lesson I have thankfully learned now!

Haha, my Blokey *still* hasn't learnt that lesson ...

Drop in often!

Poppylicious, Moderator

[JW77]

Financial implications.

Assuming your in the UK, you will get reciprocal costs towards leccy and water.
If you own your own home your council tax may go down a band if you have a separate room.

You'll spend less money traveling too and from hospital and technically less admissions from infection.

Dialysis at home is not rare in the UK, in fact the gov wants about 15 percent of dialysis patients to be home heamo if they can. PD can be done easily unsupervised, heamo not such a good idea.

The hospital pays for the plumbing, installation, machine maintenance and stock delivery.

This is me with my home setup.. Been on home heamo for about 9 years now..

https://www.facebook.com/media/set/?set=a.116067695150.201672.778645150&type=1&l=02a3b3a45b

Disadvantages,  you can feel isolated, it affects the family to some degree, but you should fit dialysis at home around living, not the other way round.

You have to manage yourself, take stock  and delivery.  In my unit the home heamo nurse comes out for monthly bloods!  And sorts out any issues.


Hope thats a useful reply:)

J

Thanks everyone for the welcome! 

I don't actually mind dialysis, WHEN things are going well.  Its the complications and idiots I have to deal with that gets on my nerves!

I don't mind dialysis that much either, I'm one of the few on our unit that ALWAYS seems to be able to muster a smile and a joke. I don't really seem to really suffer many complications, the occasional bout of hypotension and cramping, but yeah, dealing with some of the idiots can be quite a trying experience. I get particularly irked by those who hear the word "dialysis" and assume I'm living a death sentence. *sigh* So I do my best to enlighten them if they are willing to listen.

Good on u for Wanting to dialyse at home, this is quite rare in the UK isn't it?

It is indeed quite rare from what I have seen, I believe a lot might be down to lack of adequate information, I mean, my unit has mentioned that Home Haemo is available, in fact with me being an "ideal candidate" for it, I am being 'pressurised' into doing it, but the unit has been lacking in details being readily available for further consideration of the option, most importantly "what are the financial implications?", with our unit lacking a social worker, that information is simply unavailable at present. My unit does dialyse a LOT of elderly people too and they seem lacking the confidence required to home dialyse and so the subject isn't really approached with them. Which is quite understandable.