Living or existing with Kidney Failure

[rheaybou]

Lets be straight, dialysis is not something I would ever want to have to face again. Blood pressure of 210/130 before and after dialysis and creatinine of between 1200-1500, having to work a 40 hour week as I would have lost my house etc and knowing what will kill me was not fun.

The only reason anyone on dialysis is alive is due to the NHS/medical science, if not for medical advancements I wouldn't be here today and expecting our first child;a child who will be at risk of having the same genetic fault as I have but will be monitored.

But as the quote goes "Get busy living, or get busy dying"

Grey, you have put down your experiences and feeling so well, you need to contact people who can help you spread the word(NHSBT etc) and highlight the need for more organ donors. I have met and been humbled by some amazing people who give time to help raise donor awareness as either recipients, on the list or donors.

[AmandaClare]

It's worth remembering that people vary a lot both in how they feel on dialysis and how well they deal with the hassle and worry of it. I'm not preaching, I was both ill and stressed out on dialysis. But I'm amazed by the energy and positivity of some patients.

[AmandaClare]

Great news, Richard!

[Grey]

Hi Grey just read your post and it makes me a bit sad, because you are so right.

Just out of interest Grey I am blood type Bneg what kind of donor do I need ?

hi sorry but I don't really know too much about blood groups.. read your most recent post...hope it all works out ok.

[chrisb]

i so agree with Grey's original post. other people have no idea and frankly dont want to have any. i have only just started HD but the message have come back to me "can you get back to work now" i have even been told "you can dash over and have your dialysis and then dash back to work" THEY HAVE NO IDEA! i do not feel able to go back there ever having to keep up to their expectations all the time and spend my valuable time with them and their attitude that because i am on dialysis i am "fixed". apart from the physical implications i am no longer able to cope with the pressure and stress that my job entails. i really dont care if i cant get Benefits and the like i just cant go back there because i know within a week i will be a nervous wreak. i am not prepared to make myself even more ill by trying to get back to "normal" just to suit them and their agenda,

persnnaly i do not believe it is the job of the NHS to get the message and information out there to the public at large. it is the job of the kidney charities who, in my opinion and experience, are totally letting down kidney patients. people know so much about cancer because those charities ram it down peoples throats and are very pro-active. i applaud them and wish that kidney charities did likewise.

apart from the initial teething problems i am currently encountering i am so glad i am on HD and not PD despite the inconvenience of attending the unit 3 times a week. there is company with people in the same boat as me and as i live alone it has ended what has upto now been a totally isolating experience.

perhaps Grey, if when you have given PD a fair crack at the whip and things have not improved, it may be that you should consider changing to HD

[wagolynn]

Chrisb,
It will take at least another month before you can make any judgment about work, I would not burn any bridges just yet. Tell your employer you are not feeling well enough yet and feel you will just get in the way at the moment. Should they offer to let you work whatever hours you can, I would do just that.

Your employer has a problem, do they loose your contribution for good and start again with someone new or do they wait for you because you made a useful/valuable contribution.

Both you and they may have to eventually except you are unable to continue.

Don't forget, feeling depressed is a normal part of the condition.

[chrisb]

i am sorry wagolynn but you have no idea what my employers are like. its not just me that is under considerable stress and pressure even the healthy staff are dragged down by it and constantly break down. they keep piling on more and more work despite the fact that we have been forced into a 4 day week (and of course 4 days pay) for the last 5 years despite opening 2 new offices during this time with inadequate and inexperienced staff to man them, consequently the burden of the extra work is laid on the original 4 members of staff (including me) who have each worked there for 40 years plus and as we are all woman who have no husbands to support us and they know we would be unlikely to have the courage to leave their answer to any approach by us for change is "if you don't like it you know where the door is"

[amanda in CA]

I so empathise with what you are saying, Grey. MandyV, I think that you have a great attitude, and ?I believe that I used to have, but since my transplant failed, I have been on dialysis for eleven years since then. Your post seer s to imply that it is a choice how you live your life. Well, to some extent, I agree, but my health is not what it was eleven years ago, and bit by bit, the problems that accompany long-term dialysis are creeping up on me. I simply cannot do things that I used to do in the early days of doing dialysis ( and age compounds that), so I would say, that for those of us who have been on dialysis long-term (and I did it prior to my transplant too), it it not just simply a case of mind over matter. There are physical issues too, that cannot be ignored. I believe that I do the best that I can, given my circumstances. There is so little light at the end of the tunnel, too, with the hope of a transplant (not impossible, just very, very unlikely)

[lizbee]

aww Amanda I did not know that your transplant failed and that you are back on dialysis and for such a long time too.....I feel for you I really do. I know that when dialysis starts for me I will be on it for the rest of my life (however long that might be) and I know that for me there is no light at the end so to speak. I do hope and ( I will include in my prayers) that another transplant comes along for you..............never give up hope sometimes its all that keeps us going.....take care.....................x

Liz

[wagolynn]

hi chrisb,
You appear to have been very lucky with your choice of employers, they sound as though they are very good at extracting the urine.

If all else fails, I would leave on health grounds and then go for constructive dismissal on the grounds they did not attempt to offer you any alternative, i.e. shorter hours, work at home, etc. Citizens advice would give you the heads up on what is possible or your union.

The only other alternative I can think of is prepare to change jobs, when or if you are able to work.

[chrisb]

hi wagolynn


I would be doing shorter hours anyway because of the dialysis sessions and despite this they have informed me that on my return I will have to do my field of work for 3 offices instead of 2 as before.

as they are solicitors I am not sure if they are being very clever or very thick

[wagolynn]

Hi chrisb,
In my experience, both being clever and thick is possible.

This is the big problem with CKD most people look more or less OK, and no one ever thinks about what kidneys do, for most people they just work away keeping them alive.

In the end you can only do what you can do, I would investigate another job or even not having one, just in case...

[chrisb]

Hi wagolynn

my thoughts are leading towards another or no job but after 41 years of working for this firm I do not feel inclined to make things easy for them by leaving voluntarily. also, I may be wrong but I believe that if voluntarily give up my job I will not be entitled to any government money

chris

[wagolynn]

I am not 100% sure on this chrisb, this government has been trying to model employment and employment law on China... However it should all be on the government websites. The case used to be, you had to prove constructive dismissal (they left you no alternative) or of course you doctor could say you are too ill, I too enjoyed working but I started having too many days (for me, fair days work for a fair days pay yardstick) where I new I was not cost effective, I was well past retirement age anyway so it was less difficult. Rest assured, as your CKD develops, you will reach a point when you cannot go on working but no one knows when that will be.

[AmandaClare]

Is that a bit pessimistic, Wagolyn? Many people do keep working through dialysis and transplant. I'm full of admiration for them - I was a teenager through all that stage but was way too ill to go to school for about a year.