Just found out I need diaylsis

Hi there

I am 52 years old and have PKD. When I went to see my consultant last week my egfr was down to 13 and I was told I need dialysis soon. My husband was initially going to be tested as a living donor for me but unfortunately was diagnosed with bowel cancer two years ago and is still recovering from his third major operation. It's all a bit daunting really. I am trying to keep as positive as possible but am worried about how I will cope with diaylsis. I am thinking of going with the overnight peritoneal dialysis but my brother who was on this two years ago ( he has now had a successful transplant) said it really hurt as the fluid was draining out. can anybody tell me if this is normal please?

18 Replies

oldestnewest
  • Hi, I completely understand your fears about all this. I was originally put onto HD but really didn't get on well with it. It made me feel so dreadful all the time. I then went on to home overnight PD and got my life back! For me, the difference was enormous, I felt so much better and also felt like my condition was not ruling my life now. When I first started on PD, the drains used to hurt. But with help from the nurses I changed the settings and then I hardly ever felt the drains at all.

    I do know other people who like the separation of keeping all the dialysis stuff at a hospital, and keeping their bedroom "normal". I guess it depends how convenient it is for you to go to the hospital so many times a week, and utlimately how each type of dialysis suits you. Always remember that If one type doesn't suit you you can switch.

    Hope this helps a bit. Good luck with everything. You are not alone! X

  • Thank you for this. I will probably start on PD and see how I go.

  • It does hurt for a small number of people. When I did my training for APD almost 5 years ago there was a lad that had to stop because it was too painful.

    But it's rare so you would be unlucky if it happened to you.

    I was originally diagnose in Spain and treated there for 4 years and they give you Heparin ampoules and syringes to inject into you bag if you get pain. The NHS here don't seem keen on giving it for some reason they don't really explain.

    The insertion of the catheter is no big deal, done under local and heals fast without much pain. Biggest problem for some people is storage of the liquid supplies. I get around 50 boxes weighing 500 Kg delivered monthly and they go in the spare bedroom.

  • Thanks. I am aware that there will be lots of boxes as my brother was on PD a couple of years ago. I think I will do the PD and hope I don't have any problems.

  • Wow 50 boxes weighing 500 kg...I was wondering how you had the energy to carry all those boxes up to your bedroom? I suffer breathlessness as it is without carrying any boxes upstairs how do you cope?

  • Baxter, who deliver it, put it in a bedroom for you. They aren't allowed to let you help them.

  • Why aren't they allowed to help you, just out of curiosity?

  • It's a Baxter policy and I went on APD in Spain nearly 5 years ago and it was the same there. I returned to the UK just under a year ago and arranged for my treatment over the internet. Everything was delivered to my new house before I arrived and my partner's son let them into the new house.

  • Other way round -- you are not allowed to help them. They do it all.

  • Hi

    Wow, what a couple of years you and your husband have had to deal with, well done for getting through so far.

    What type of dialysis you use is a hard decision to make and no amount of advice can help you. Really the only option is to make your decision with your husband as all dialysis will affect you both. Once you've reached your decision give it a try and if it works for you great! If not you'll have to discuss with the dialysis team about changing things to give you a more comfortable treatment. Good luck and keep in touch through 'Healthunlocked'.

    As a sideline I was given the news two years ago that my transplant that is failing (egfr 13) and I'm still waiting to be prepared.

  • Thank you. It has been a tough couple of years but i think that if we can get through that then we can get through this!

    I am sorry to hear about your transplant. How long have you had it for.?

  • 25 years on 23rd September this year so I consider myself to have been exceptionally fortunate. I'm optimistic that I will have a 2nd transplant at sometime in the future meanwhile I, like you and many others in our position, will go with th flow of life.

    Cheers

  • Wow that's amazing! I hope your next one lasts just as long!

  • You might want to look at the different types of dialysis here:

    davita.com/treatmentevaluator/

    and here:

    kidneypatientguide.org.uk/t...

    Its best to be informed.. Your def not alone, apart from forums such as this, and many more you have the support of the 2 main kidney charities:)

  • Hi folks. I saw my consultant yesterday. My egfr has gone from 13 to 14 ( I have really been sticking to the diet and am trying to prolong dialysis for as long as poss). I have an appointment with the renal nurse next week to discuss dialysis options but still think that PD would be best for me although I have heard that you can put on lots of weight with PD and I am not so keen about that. Told everyone at work about my illness ( they were totally shocked as I look so well, but thought I had too as I am going to need time off soon for the op etc). Also worried about wether i will be able to carry on working if I am on dialysis. How does everyone else get on? Hubby also got the results of his quarterly cancer blood test yesterday and he is still all clear so that's great news!

  • Hi there. How are you getting on now?

  • Hi. I am still managing to keep well thanks. I have to see my consultant in a couple of weeks so I will know what my latest blood test is then. I have been really watching what I eat and drink and trying to keep positive about things and I think that has definitely helped to steady the creatinine. I have also finally been put on the transplant list ( had the referral in April) so hopefully I won't have to wait too long.

  • Join the club. The removal of fluid is absolutely painless. I have never heard of anyone complaining of pain during dialysis. The only pain you feel is the needle going in and you don't even feel that if you use Lidocaine numbing cream prior to dialysis. Your brother had to be complaining about some other kind of pain.

You may also like...