Appointment on 12th Aug (brought forward) bad news :(

[bigbuzzard]

Just to offer a slightly different take to Richard's experience of necklines. I've had two put in, and didn't find it traumatic at all. Would I do it for fun? No. But I did find it possible to almost enjoy the bizarreness of the whole thing. Mine wasn't in an X-ray theatre, but in what they called the 'procedure room' (in Guy's Hospital and Exeter respectively). Mainly a bed, with a moveable light above it. There's a local anaesthetic - a few small jabs, and there's a moment of minor pain when those are put in. It all happens around the collar-bone area, which feels a bit more sensitive to me than other bits of the body, also a bit 'in your face' as it's so close. The 'pushing and pulling' sensations are when the doc is 'tunnelling' the line in along a line just below (I think) your collar-bone. I did feel a bit 'pushed around'. Once it's in place, I wasn't aware of any sensation inside at all - just around the 'exit site' which was tender for a few days as it healed up.

If you're feeling anything like I was with such low kidney function at the time, then having the dialysis sessions did make it all worth while. I generally felt much better after those. Though it seems everyone's experience is a bit different.

The main thing I remember about the first few times is them playing around with the amount of water being 'taken off' - the dialysis removes water from the body that would otherwise be peed out, as well as cleaning the blood. The rate at which this happens is one of the settings on the dialysis machine. If it gets set too high, which happened to me once, your blood pressure reduces quickly and I nearly passed out (fainted). The room was going woozy for half a minute before this. A nurse spotted what was happening just in time and raised my feet and reduced the rate on the machine. Once that was sorted, all was fine. I hope this doesn't come across as a horror story - it wasn't - just something to look out for.

Before my first transplant, which was from a living donor, they recommended me not to go on the transplant list - that is for getting a 'cadaveric' transplant from a deceased donor. They were basically encouraging me to have a living donor if possible, as the outcomes are statistically better. But that's completely up to you.

Hope that helps. Sounds like you're in good hands at Doncaster. I've always had great treatment - in fact I never tire of telling people how brilliant the NHS can be when you really need it. But I would say that keeping your wits about you is a good thing, and always ask why things are happening. There have been times when I've had to point out to one nurse or doc what another has said should be happening; either because a message hasn't got through, or because it's buried in the notes somewhere.

Good luck with it all.

[Tibbs]

I had a line fitted too, and it was ok. Done in a similar way to Rheaybou. Pulling & pushing but was done quickly. The most painful bit was the local, and not as bad as having a filling done.

[wagolynn]

I do understand that there is nothing but dialysis to go on with life......there is conservative care so there would be medical intervention.......I have had this disease fo r 15 years and I guess I am just tired of it all and the waiting, you talk about a better quality of life but I have yet to come to terms with the fact that dialysis might do that, but I have spoken to people on it and their kidney function is.nt that much better than mine even one lady who had a transplant and at that time my kidney function was better than hers. I have to find my own way forward in all of this, we are all so different and I am finding it hard to believe that my quality of life will be any better..............maybe I should not put these thoughts up here as most people want to be better and I might just be bringing gloom whenever I post..................

Liz

Hi lizbee,
I have just re-read my last post, in my efforts to keep it brief I think it has ended up harsher than I intended, sorry about that.

You are correct, everyone is different and therefore everyone’s reaction is different. Feeling low is normal; it goes with the condition.
I hope that once they get your dialysis sorted out, you will feel much more positive.
I would say you have no need to worry about posting if it helps you, most kidney patients have gone through the same thing at some time, and I am sure they all understand.

The only tip I can give you, is to be actively involved in your treatment, read up what you can, the NKF website is a good start, I also find http://www.edren.org/pages/handbooks/un ... alysis.php very useful but you have to dig around a bit. Some of the American website are not very good.

Good luck and best wishes.

[per156]

Sorry Duker

to hear about your rapid decline in kidney function, hope it feels better with dialysis. I presume that you pretty soon will have your BP under control (if not good already before dialysis). So good if they can stop the leakage and give you a chance to kidney recovery but I guess the odds are not too good.

Best regards
Per

[MatthewC]

7 people have said they'd be tested but how do they go about doing such things? I presume i'd still go on the list but wouldn't the wait be much less with having 7 potential donors already willing to be tested?

As a potential donor (volunteered in Feb 2012, the op is Oct 16th - less than 8 weeks time), I can tell you that the first thing the transplant team will want is blood tests on any relatives who volunteer. No one will call them - they must call the transplant centre themselves. The first hurdle is the same blood group and a good tissue type match. Then, if there's more than one donor left, it's up to them to decide between themselves who goes on for further testing as the NHS only want to test one person at a time (it is a huge use of expensive resources). Then it can be quite long... My advice to the potential living donors is to push at every step to keep it moving - but that's for them, not the recipient to do, so just refer them to this forum.

I don't think the recipient (my brother) has ever been on "the transplant list" as such.

Matthew

[Tibbs]

7 people have said they'd be tested but how do they go about doing such things? I presume i'd still go on the list but wouldn't the wait be much less with having 7 potential donors already willing to be tested?

As a potential donor (volunteered in Feb 2012, the op is Oct 16th - less than 8 weeks time), I can tell you that the first thing the transplant team will want is blood tests on any relatives who volunteer. No one will call them - they must call the transplant centre themselves. The first hurdle is the same blood group and a good tissue type match. Then, if there's more than one donor left, it's up to them to decide between themselves who goes on for further testing as the NHS only want to test one person at a time (it is a huge use of expensive resources). Then it can be quite long... My advice to the potential living donors is to push at every step to keep it moving - but that's for them, not the recipient to do, so just refer them to this forum.

I don't think the recipient (my brother) has ever been on "the transplant list" as such.

Matthew

This was my dad's experience to a 'T'. For fear of being seen to be coercing people into donating, the hospital will never push a potential donor.

It's up to your donors to make themselves known to the transplant co-ordinators. At your next clinic/dialysis I'd imagine they'll give you the numbers to give to your potential donors if you ask.

Failing that, I think Rheabou had his transplant at the same place you're at, so might be able to point you in the right direction.

Just bear in mind that the whole process can be very slow. From talking to people on here, on average it's about 10/11 months from first phone call to operation.

I wish you the very best of luck.

[MatthewC]

Just bear in mind that the whole process can be very slow. From talking to people on here, on average it's about 10/11 months from first phone call to operation.

Agreed - I did not mean to give the impression that my 18 months is typical - we have been deferre because my brother was not ill enough! I got through the bulk of the tests in 6 months and so we could have done the op after 9 or 10 months if there had been a real hurry.

[rheaybou]

Just bear in mind that the whole process can be very slow. From talking to people on here, on average it's about 10/11 months from first phone call to operation.

Agreed - I did not mean to give the impression that my 18 months is typical - we have been deferre because my brother was not ill enough! I got through the bulk of the tests in 6 months and so we could have done the op after 9 or 10 months if there had been a real hurry.

Ducker5

Give the people who said they are willing to donate the following number to call (just found the card in my wallet) Carole Clayton/Debbie Butlin 01142266055

Both are fantastic people who will talk through everything with any potential donors (f*ckin hell I am welling up just thinking about how much they helped)