I don't know what to expect.....

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I don't know what to expect.....

Postby kevin.james1 » Thu Jun 02, 2016 2:46 pm

Hi All,
I am Kevin and am a new guy to the forum. I am very, very close to having dialysis and not sure what to expect. I have a home visit meeting with a Kidney nurse in a few weeks to talk about the future and stuff. I have had my kidney disease for ten years plus now and it has come to the stage where I either go on dialysis or have a transplant. I am worried about dialysis , and which type to have and also my family members have offered to donate if they are compatible ( which I know sounds great but I then worry about if they have problems in the future.)

Any ideas and or advice please, as I am not sure what's going to happen and it is freaking me out a bit.

Thanks

Kev
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Re: I don't know what to expect.....

Postby wagolynn » Thu Jun 02, 2016 4:24 pm

Hi Kevin.james1,

First, don't worry, you will find the nurses and doctors very helpful, they want to help you. To this end, if there is something you do not understand - ask. They will answer all your questions, if there is an answer.

Dialysis - Try looking at this link http://www.kidneypatientguide.org.uk/treatment.php.

Not all patients can have Peritoneal dialysis (PD) for medical reasons. Automatic peritoneal dialysis (APD) sounds most convenient. Some hospitals train patients on PD first then offer them APD, the logic is, if the APD has a problem, dialysis can be continued on PD until the problem is solved.

Haemodialysis, is fine usually 3 times a week 3 to 4 hours each time. This has the advantage of you attending the dialysis unit where you meet other dialysis patients, making you feel less isolated.

Remember, dialysis will give you time to sort out a transplant, so there is no great rush.

Donors, I agree it is a worry that a donor may, in the future , have kidney problems. I think, the solution is to discuss this with the prospective donor, until you have convinced yourself that they fully understand the implications of donating. At the risk of being branded sexist, I would say females of child bearing age would be unwise to donate, should they become pregnant, they will have some trouble.

Have a look at that link (above) then come back if you have any more questions. There are many people on this forum who have had exactly the same worries and concerns that you are having now, and I am sure they will try to help you, but in the meantime, I am sure the consensus would be, don't worry.

Best wishes.
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Re: I don't know what to expect.....

Postby rheaybou » Fri Jun 03, 2016 8:47 am

Regarding dialysis and thoughts on living donation have been very well covered above.

As a living donor recipient I can assure you that the testing procedure undertaken ensures the donor is fit, healthy and as far as possible they will not have problems in the future. My donor was made aware about healthy living, diet and excercises and how to stop potential damage via type 2 diabetes and high blood pressure. If I remember correctly the tests rank donors in the top 10% of healthy people in the UK.

I worry about my donor, I would be heartless not to. But I love him for the change he made to my life and also making a space on the deceased list by donating to me. He helped two people in my view.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
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Re: I don't know what to expect.....

Postby Dibs » Fri Jun 03, 2016 12:30 pm

Hi Kevin.

I've been on home APD for five months and the transplant list for 15. One thing you will see mentioned on here a lot is that we are all different. I had quite a lot of drain pain initially, but now it all seems fairly routine. I still get tired, I get cramp, I would love to sleep on my right and my wife is fed up of me being grumpy, but life goes on. A couple of people have asked me about donating, but I've tried to discourage them. Maybe I'll get more desperate over time, but dialysis does not stop you doing everything.
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Re: I don't know what to expect.....

Postby R30 » Mon Aug 29, 2016 7:30 am

Hi Kevin,

I had a live donation in October 2004 from my mum...she was 70 at the time. Both of us are doing well and at the age of 82 now she is still going strong. As others have said, the hospital will test any potential donor until they are fed up to the back teeth (not literally), but this is all to try and ensure that they don't suffer any permanent issues. It's also to ensure that any kidney donated to you doesn't cause you problems too.

As for dialysis, you will need to talk to your renal unit about which type would be best for you. I did CAPD and went about my life fairly normally, with a full-time job.

Hope you find out what you need to know, and once you've spoken to the hospital feel free to post any queries here.
Ruth
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