options

[katykins]

been told I will soon need dialysis and would like to talk to someone about it

[Hidden]

Hi Katykins, I am sure that others on this forum who know how you are feeling will offer you help and support but please feel free to also ring the NKF Helpline who can talk things through with you and provide practical information. The number is free from UK landlines 0845 601 02 09

[2012kowboy]

Hi KatyKins, check out renalbuddies.com, there are lots of people on there who have been through dialysis, we are a friendly bunch, also we have a Facebook page, facebook.com/renalbuddies, hope this helps you.

[Hardworkthisbeingpoorly]

Katykins I had the same worries before I went on dialysis . To be honest I was explains to about my options about the two types of dialysis that was available to me. Hemp dialysis and Peritoneal dialysis or known as PD for short . My renal team gave me good input on all the pros and cons of both and because I am still quite young I chose the PD option because it fitted perfect to my lifestyle . I do PD every night for 9 hours which may sound harsh but it's all done during my sleep , this leaves me to have a pretty normal life thru the day I still go to work I go to the gym 3 mornings a week I cycle 30+ miles every week my greatest acoumplishmrnt was going to Australia with my PD machine on my own to see family , the company who supply all the equipment is a worldwide company so they arranged it with one of their outlets in Australia to supply all my medication and equipment to be delivered to where I was staying, all I had to take was the machine which looks like a normal suitcase when it's packed up . I avoided hemo dialysis for the simple reason I couldn't see myself sitting 3 days for 6 hours during the day hooked up to a machine. Anyway I hope this helps I've been on PD nearly 4 years and have no regrets . If you want any more advise based on my experiences please do contact me !

Good luck in choosing

[Hidden]

All forms of dialysis have their pros and cons.

Its best to discuss with your consultant and make some notes for yourself

You might want to try this online quiz to help you understand the benefits of some treatments over others within your lifestyle

davita.com/treatmentevaluator/

[Kibibi90]

Hi

I'm sorry to hear your news but it's not the end of the world. My suggestion is what I did when I was your situation. I spent time writing down all the questions I could think of ready to discuss them with my consultant. If your consultant's appointment isn't long enough ask him/her if there is anyone else you can speak to. Hope this helps...

[NKFADVOCACYKC]

Hi

Which part of the UK are you in? Your regional NKF advocacy officer will be happy to talk to you face to face. Best wishes,

[katykins in reply to NKFADVOCACYKC]

west yorkshire

[NKFADVOCACYKC]

I'll alert your advocacy officer in the morning.

[NKFADVOCACYKC]

My colleague in Yorkshire is out of the office all day today, but I'll ask her to contact you on Monday. There is a very useful website - google Yorkshire Dialysis Decision Aid - which you can log into and actually work through - it may help. The big thing is that you are not alone - apart from all your fellow-patients out there, there is a massive amount of support to be had. You've come to the right place for a start. All best wishes

[AdvocacyLP]

Katykins, Hi I am your area Advocacy Officer and I have just arrived home after attending a pre dialysis info day at St Lukes in Bradford and I am due to attend another one on Friday 28th June at Airdale Hospital. Is this near to where you live if so why not get in touch with your pre dialysis nurse and ask if you can come along? If you would like to speak to me personally ring the NKF helpline 0845 601 0209 free number and give the lady your contact details and ask her to pass them on to me Linda Pickering and I will ring you.

[katykins in reply to AdvocacyLP]

Hello, thank you very much for your reply, which has confirmed my original decision not to go ahead with dialysis when the time comes because my fear of doctors and hospitals is so great, that even though I understand the risks of not having it, I just cannot face any more hospital appointments

[justagirl in reply to katykins]

Please think further about this, I know it seems scary and like it all change your whole life to start with but it really doesn't have to be like that. Over time you adjust to going to the hospital and build a relationship with the staff, which really helps. Also, if you choose peritoneal dialysis you hopefully won't even have to go to the actual hospital that often! The consequences of not having dialysis when your kidneys no longer work at all isn't just a risk, it's unavoidable. Obviously it is your decision in the end, I just feel that with time to think about this, and the right information, you may be comforted and encouraged to be brave.

Big hugs x

[SPARKY1 in reply to katykins]

Hi katykins, i used to think like you pre-dialysis, but when i started feeling very ill and couldn't keep any food down i soon changed my mind. Dialysis aint as bad as you think, and the Drs and nurses are great.

[Hidden]

Hello Katykins. You and I seem to be in the same boat - I had an operation to create a fistula just two weeks ago and am due for a check-up with the Renal Access Nurse tomorrow.

I don't know how far along the path you are or whether you are going for HD or PD so, apart from offering you my thoughts and prayers, there isn't much I am able to say at present. That said, I'm sure you will find a ton of help here and do take a look at Renal Buddies too.

Whatever you do, don't pretend it isn't happening and try to run away from it - I did, and it took some getting back in the right mindset. Don't forget either that everyone here is a sufferer of CKD in one way or another; this thing affects entire families, not just individuals.

Please feel as free as you like to swap news - I'd love to hear from you.

All the best,

opsimath

[AdvocacyLP]

Katykins,

If you would like to meet up away from the hospital setting then please e-mail me via the NKF Helpline, there really is only one option apart from dialysis or transplant and that does not bear thinking about. I am sure proffesionals can help you to over come your fears

[robson38]

hi I am due to put all the planning into this stage and I am wondering what it is like too. let's find out together