Hello - I'm a new boy here. My screen-name is neophyte.

Hello - I found this website last night and joined this morning (24 February 2013).

I have recently been told I have renal failure stage four, which became apparent from a routine blood-test. I have seen a consultant at the local hospital and had a consultation with a renal nurse just over a week ago. On Thursday of last week, my wife and I attended an information day at the hospital where the information we were given made my head spin!

It had all seemed so clear before but now all I can see are obstacles to my treatment and I am beginning to wish I had never found out about my condition in the first place. The treatments offered - I shan't go into them as I'm sure you know them all much better than I do - seem to be almost as unpalatable as the disease itself and I am rapidly losing the heart to do anything about it.

I am in my late sixties and have suffered ill-health for many years, including clinical depression, which has been treated with a variety of therapies, some of which have undoubtedly contributed to my present kidney disease.

We live in a very small, one and one-half bedroom terraced house and there is no room to accommodate a home haemodialysis unit, even if one was available; we don't even have enough storage space anywhere to take the boxes of PD paraphernalia, so it seems my only choice, if choice it can be said to be, is hospital haemodyalisis, the thought of which fills me with dread.

If I were to decline RRT, what sort of time would be available to me? I realise I can't expect a precise answer but a median figure might be useful. Is death from renal failure a long-drawn-out and painful process or are there palliative measures that can be taken?

I don't want to die soon, although I realise that is the end for us all, and I don't want to be shackled to a machine, unable to eat, drink or do anything useful either.

May I appeal to those of you with a greater knowledge of the situation I find myself in to respond to my questions. I would be so grateful to have some informed input.

[NKFADVOCACYKC]

Hello Neophyte

May I ask which part of the country you are in, please, as the National Kidney Federation (NKF) has patient advocacy officers across the UK. (I am in the South West). The NKF website is worth a good look at - loads of information there, and you will see that there are good support networks for kidney patients. Similarly, the British Kidney Patient Association (BKPA) website is also worth looking at. You will see that the BKPA very generously makes grants available to patients, covering a range of needs. Not least, they often pay for garden sheds for PD patients for storage of fluids etc. This might be an option for you. There is also a very high chance that you will have a local Kidney Patient Association - might not be called a KPA, but again, these give good support at a local level.

In-centre haemodialysis does take up a large part of the week - usually 3 times per week for 3-4 hours at a time, but often there will be a "satellite" dialysis unit within 30 minutes of your home, so that you are not spending too much time travelling. I would hope that with the right support you will find that you can do this.

Your question re declining treatment can only really be answered by your doctor/nurse who knows you. You are not yet at Stage 5, so plenty of living to do. Have you been advised of dietary restrictions etc. Again, the NKF website can give you guidance. Everyone is different so you should have access to a renal dietician.

If you let me know which area of the country you are in, I will try to put you in touch with some good support. If you live in the South West we can chat "off-board".

Hang in there

Best wishes

KCAdvocacy

[ctlau]

Hi Neophyte. I am so sorry to hear you are feeling so down. I had my second kidney removed in June (due to cancer) and had to start heomodialysis immediately. I am 9 months down the road now and go down to my local hospital (about 20 minutes away) three times a week. I know it changes all our lives and it is not the way I envisaged starting retirement but I can honestly say that I cope really well wilh the dialysis. I try really hard to live as normal a life as possible and still go out and do most of the things I did before. I only joined this group two weeks away and have had some helpful comments - it is good to know you arent on your own.

[Hidden]

Thank you for your speedy and friendly responses to my blog-post. It is really quite humbling to find such positive opinions about a subject that looms so large in my thoughts that I am quite unable to see beyond it. I am loth to say more, lest my own negativity seeps into the strength and pluckiness I have found here.

I think I probably solicited the opinions of you all before my head was in the right place to absorb them and feel I must try to find some way of coming to terms with this new and radically different reality before entering into much in the way of further exchanges.

I am so grateful to you both for your kind thoughts and words; perhaps my meditating on them will better my understanding. I shall try to write another blog-post when my mind is clearer than it is at present, but for now, I have to say, even in the bosom of my family and church, I have never felt so isolated. Your prayers would be most welcome - and please know that you have mine.

'bye for now - back later.

[NKFADVOCACYKC in reply to Hidden]

Hi Neophyte

Please don't feel isolated - the kidney community looks out for one another. As I said in my previous response I work for the NKF in the South West, but I am one of a team of 8, covering the whole of the UK. We can and will support you through this time.

Best wishes

KC

[coaching]

Hi neophyte

It is normal to feel the way you are feeling right now after original diagnosis. I think our world fell apart on hearing that we have to start RRT. I started hemodialysis at age 17 and that was 20 years ago. Believe me, theres nothing to fear, you have already overcome the hardest part: taking it in and you have begun to look for answers and anybody out there etc..

I can assure you, theres plenty support available, but dont be afraid to ask.

you will be fine.

Hope that helps xx

[2012kowboy]

Hi neophyte, I too felt as you do, I didn't want to face the truth and just wanted to give up, all I could see was a life with dialysis three times a week, restrictions on what I could eat, not being able to go on holiday, or if I could it would be spent mostly on dialysis, but I am glad to say I did not give up, after 5 years on dialysis I had my transplant, I found that far from being a burden going to the hospital for dialysis became a part of my life, it was a time to go and see the friends I had made, talk to people like me and ask questions and get help, don't give up, your age is no restriction, a transplant could still be offered to you, after my experience I started a website for renal patients, its called renalbuddies.com, its a social media and support site, why not have a look, remember don't give up, it is not all doom and gloom. I know it can seem a lot to take in when you hear all the horror stories about treatment, but just as treatment for any long term illness there are just as many good stories as there are bad, its just that our brains seem to focus on the bad ones, I don't know why but it just seems to be how we are programmed, please try to stay positive and stay strong, don't be afraid to ask questions, talk to your consultant or nurse, it's what they are there for, they will be more than happy to help and answer all your queries, stay strong, help and support is out there.

Wishing you all the best, Gaz

[hedgepig]

I was diagnosed with kidney failure last september and am now on dialysis. I thought that would be the end of my ministry as a priest and my ability to maintain my large garden and my work with young people, but it has not. Having to travel some distance for evening dialysis sessions is a bit of a bind but its no different than going out and doing a regular part time job. You simply know that three evenings each week are not for leisure activities or whatever.You really do get used to it. Yes a few things have had to end but new things open up. I exercise an active retirement ministry in the church, I do what I like in my large garden, I do many odd jobs like carpentry and building, and I still lead a few 'away grups' of young people aged 16+.and I do much walking. In two weeks time I shall travel by public transport to London for a few days and in May I shall travel up to North Norfolk by public transport for a few days and I am planningh to go to York and to Belgium. Believe me, life goes on much as before if you take the positive wiew of it..

[millie193]

My husband is having treatment at the Royal London, his idea is that If something happned hes in the best place. I suppose everyone handles situations differently.The Royal london provide a counselling service. Including groups so people can discuss problems, partners are invited. My husband is stage 5..we was told yesterday.