Maybe heading for machine

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Maybe heading for machine

Postby jazzplayer » Thu Jul 08, 2004 3:03 pm

Hi im Keith

ive under treatment for polysistic Kidneys for about 15 year not needing a machine .in the last year ive not been that good loads of infections and results going the wrong way so ive been trying to keep my chin my doctor told me in January that with the way my results where going he thougth i could get another 5to7 years free from a machine.which helped me come to terms with it a little since then ive lived life to the full you know done things ive always wanted to do but never got round to it ive driven a horse and carvan around ireland and booked to see maddonna in paris .
Then two weeks ago i started to feel unwell it was the day after my 40th birthday i went to my jp he sent me to the hospital my blood tests are not good and ive just spent a day in hospital having more tests,i have to go back next week,they have told me my resaults for this week are very bad and im getting into the danger zone of needing a machine this is such a shock in january it was 5 years off today it could be weeks has any of you been through the same thing if so let me know how you coped,I myself feel shellshocked my wife is great say we will cope what ever but she is shocked as much as me i have to go into work with my sick note do i tell them or keep it to myself for the moment if you have been in my shoes drop me a line

thanks Keith :(
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Hi keith

Postby SteveUK » Thu Jul 08, 2004 3:40 pm

Hi there

I'm considerably younger than you, at 22. I didn't even have a "pre-dialysis" as it were, but I can relate entirely to your situation, in a way.

I had a blood test done March 2002. At the time, I wasn't feeling too bad, just feeling considerably tired, given the hours I was working back then. I had this rash appear on my tongue, not sure where it came from, but I eventually saw the doctor about it. He suggested an anti-biotic, and that I go for a blood test, because he thought I looked quite pale. My work colleagues at the time, also said this, though I chose to ignore it.

Anyway, I went along the following week, to my local hospital. I was 20 at the time, and I really did think nothing of it. I know I was only 20, but having gone through what I did back then, makes me realise how mature I am now.

So I went along for the blood test, with a couple of friends, as I said, thought nothing of it. We decided to venture out for the afternoon. I had a day off from work. I must have arrived home at around 5 o'clock, when the phone rang. I answered it. It was my GP, and he said that I woulld need to come to the surgery right away to discuss my blood results. I was astonished how quickly they had the results back, because previously, I had very little experience of this.

My mum and stepdad took me to the surgery, where I was told, that my HB was 6. So still, my ignorance got the better of me, I had no idea whatsoever what that meant. It wasn't untill I got the hospital, that I found out that it was an indicator of how much haemoglobin I had in my bloodstream. I had realised that meant that not enough oxygen was getting around my body, so with a number of 6, then being told it needed to be around 13-14, for a healthy male of my age, I began to worry.

I had a repeat blood test, which then finally indicated, that I had an advanced problem. I felt absolutely heartbroken at the time, and I thought I was going to die. They hooked me up to a haemodialysis machine immediately, and gave me 2 hours worth of dialysis, till about 2am in the morning it was then.

I was diagnosed with a kidney problem the next day.

A few days later, still dialysing at the same time everyday, I was told that my condition was most probably of a very slow onset, so yes, I was basically chronically ill for a while at least, but not recognising this, had cause my health to deteriorate. My kidneys weren't going to get better, and were far too small to be biopsied on. I broke down in my step-dad's arms, and I just couldn't bear to be alone ever again. I had never ever felt so alone, and I would come to realise, that this illness, as it would eventually be, would stop me from doing all the things I have wanted to do.

So in a nutshell, my failure, went undetected, largely due to my ignorance of obvious symptons. But I was 20, who was I to know?

I hope this helps keith. As I say, it did restrict my lifestyle to some extent, it doesn't affect everyone as much as it does others. I now have a fully working transplant, which was donated to my by my mum :D ,I don't currently work, but I do study part-time. It's alot less restrictive now, and I am thanful for every minute.

I realise, this may be alot to take in, or it may not, but I am sure others on this board will have different stories of their own. I have talked to a few people from here, who are still going pre-dialysis, and they live pretty much normal lives. Although I can sympathise with the fact that you were told it would be 5 years before you would require dialysis, but I do find it hard to comprehend, not ever being in that position. Support is vast here, alot of caring people, and do come to the chatroom at www.dialyze.org/chat. There are some very friendly people there, very kind, and from many different parts of the world.

As I said, I hope this helps.

Steve :)
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Postby JMan » Thu Jul 08, 2004 4:55 pm

Hi Keith..

Your shocked and thats normal.. You WILL cope.. there will be ups and downs.. but you will cope.. people do somehow....

Your still statistically quite young as a kidney patient (those around 40 and below are a numerical minority) however, this has its advantages.

As you don't have a date yet for dialysis and they haven't said for certain I'd just say that you are waiting on an appt and results as far as work is concerned. Wait for 100% confirmation at the appointment, doctors have a habit of changing their minds, re-assessing, or postponing (all this is infuriating to you and completly normal to them).

That said, if it does come to the crunch next week.. Well you have options for dialysis, there is a life with dialysis, and the first few weeks are usually the toughest.

Good luck and we're here when you want to talk:D
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Postby jimh » Thu Jul 08, 2004 5:38 pm

I was very similair. A bit like Steve I had never been poorly in my life and had no symptons to really worry about. Anyway I went for a `well person check up` (bloody silly idea on reflection) and was told that my kidneys were packing up! To say this was a shock was an understatement, I had never even hard of diaylsis. Yes, everything does change but you do get used to it sort of...


PS: My consultant told me that I was in early stages and would (or could) need a machine in 5-10 years. Needless to say three months later I was on PD. So I think the Drs can only ever guess at these things.

Good Luck!
Jim
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Agreeing with the rest

Postby nycpetit » Thu Jul 08, 2004 5:59 pm

Your age can be an advantage here...in the negative.I think we don't find out as quickly sometimes when we are so young that something is wrong...

I too didn't know...until a significant amount of damage was done...in the meantime I had one doctor tell me it was completely controllable with steroid treatment (that would be off and on for life...in other words minimal change disease)....only to mistrust him on instinct and go to another doctor who confirmed for me that I had FSGS and interstital nephritis..and it's not controllable for life..I am getting a transplant this month.

You need to just listen, absorb, and question....they don't always know what they are talking about...a second opinion is always a reassuring and comforting thing to do.

Best to you
natalie
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Postby SteveUK » Thu Jul 08, 2004 6:00 pm

In all fairness, I don't know what's worse, waiting for a machine, or just getting "thrown" on one as I was.

The vast majority of people who are kidney patients, that i have talked to, have been suffering slow onsets. Haven't really met anyone that's really identical to myself. But as keith said, it is still a shock to the system. I couldn't even go out for a drink with friends, without sub-consciously thinking how it would have been if all this hadn't happened. And because of the very rapid onset, I was unable to accept, and adjust as I was needed to, and got quite ill in the process.

Saying that, I'm happy with the position I'm in now.

Steve :)
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Possible dialysis

Postby R30 » Fri Jul 09, 2004 6:38 am

Hi Keith
When you say you don't want to be hooked up to a machine, I can understand this. This is because you are in shock at your news (as JMan said) and because you know currently very little about your disease as you are so new to this. There are other ways to dialyse without being hooked up to a machine - called CAPD (which is what I do). That way, you don't have to be in hospital three times a week - you dialyse yourself four times a day. This has enabled me to carry on with pretty much a normal life since I started (just over a month ago). You undergo a very minor operation and ten days later (or so) commence dialysis.
You WILL be able to cope. Six years ago, when I was first diagnosed, I was terrified at my prognosis. Over that time I have come to accept the inevitable. Most people become adept at handling the ups and downs, and for you, it will be much easier with a spouse to support you (I, personally, have done this entirely on my own).
This board is great, just for keeping in touch, for having questions answered, or even for a rant because one is feeling low. We alll know how you feel.
Thanks
Ruth
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Postby JMan » Fri Jul 09, 2004 8:43 am

Just an addition to Ruth's comments about dialysis choice..

Indeed there ARE now a number of choices for dialysis that SHOULD (doesn't mean they are but 'should') be offered to patients.

As stated the main choices are within the catagories of Peritoneal Dialysis & Haemodialysis,

Within PD there are at least a couple of choices. CAPD (done at intervals during the day) and CCPD or APD (done overnight), which are basically variations on a principle.

Within Haemodialysis there are even more variations on a theme: thrice weekly (a compromise of best treatment and time), daily, home, and nocturnal. The latter 3 being less common than thrice weekly 'in unit' haemodialysis.

Hope this infy is useful but there is more stuff at: http://www.kidney.org.uk/Medical-Info/index.html as well as on this sites pages:)
"Dialysis! What is this? The dark ages!"
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PKD

Postby Gil » Fri Jul 09, 2004 1:21 pm

Hi Keith,

Polycystic kidneys here too.
Kidney failure is not a death sentence but it's a life sentence.

PKD is different from other kidney diseases because the kidneys are enlarged, so sometimes PD is not an option.
But PKDers usually continue to make urine for years, so dialysis life style is a little easier on us.
And in many cases, after you start dialysis your blood count will be back to almost normal w/o Epo (a shot to raise blood count).
I was diagnosed in 1962, started follow-up in 1974, and in 1984, at age 43, started hemodialysis.
I am now 3 years after my 3rd transplant (the other 2 didn't work).
I was lucky all those years to feel well and to be able to work.

You can read my story and many tips in my website.
Gil
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"5,7,10 years to dialysis"? it's only ever an esti

Postby Cheryl in CT » Sat Jul 10, 2004 6:37 am

Hi, Keith, and welcome!

I was yet another of those people given an "estimated time" till dialysis or transplant... When I was first diagnosed, it was "oh, you won't need to worry about anything like that for at least another 10 years..." A few short months later, it was "oh, not for another 5-10 years, anyway", and a few more months after that, "well, it's time to be thinking about dialysis options..." The entire thing caught me completely by surprise, as I'd never even known before that I had any sort of renal issues.

As Steve said, I don't know which is worse: knowing that it's coming or being completely blindsided by the whole thing. My best bet is that NEITHER is better - either one is devastating, depressing and frightening, and we don't get to choose, anyway. For me, the reaction was pretty much denial. Although I followed a very strict and stringent renal diet and took whatever meds were prescribed for me, I just refused to believe that the time would ever come. Then it DID come, quite quickly, too, and I was left with very few choices, but an urgent need to choose SOMETHING.

Due to past experiences with several elderly hemodialyis patients (and a vow, way back then - when I was completely unaware of my own condition - to NEVER "do that" myself), I "chose" CAPD by default, with a living donor transplant to follow. To say that I was reluctant would be a gross understatement. If it hadn't been for my husband's taking it upon himself to drag me, kicking & screaming, in for insertion of a PD catheter AND to go in for donor testing himself, I doubt I would be here today. I was so adamant that I would NOT go thru dialysis that I almost died - even with what turned out to be a matching donor already lined up and waiting.

In the end, I had an enviably short stint on PD (lived thru it...) and then a transplant (lived thru that, too), and here I am, 20 months later, talking about it all. In hindsight, of course I can say that I wish I'd been less resistant to everything I was facing, more attuned to what was going on, more willing to "go with the program", you might say. What I wish the most, though, is that I'd had someone to talk with - someone who would honestly tell me about his or her OWN experiences - a nameless, faceless somebody at some place like KPG, not some gung-ho recruit signed on by my own hospital to say great things about all of it.

It's not fun, no matter who you are, but you do make your way through it; you DO cope (as JMan so wisely put it). It's most definitely NOT the end of the world, and when you can finally take it in stride and go along with doing what you need to do for yourself, it really isn't that bad. Would you choose it? Heck, no... But can you make your way through it? Yes, yes, a thousand times YES. Lean on somebody now & again when you need to, and take advantage of the lovely people here on this board who are so often so willing to help. We're with you on this one, Keith!

We'll be thinking of you!

all the best,
Cheryl
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Re: Maybe heading for machine

Postby LadySycamore » Mon Jul 12, 2004 9:42 pm

jazzplayer wrote:Hi im Keith

ive under treatment for polysistic Kidneys for about 15 year not needing a machine .in the last year ive not been that good loads of infections and results going the wrong way so ive been trying to keep my chin my doctor told me in January that with the way my results where going he thougth i could get another 5to7 years free from a machine.which helped me come to terms with it a little since then ive lived life to the full you know done things ive always wanted to do but never got round to it ive driven a horse and carvan around ireland and booked to see maddonna in paris .
Then two weeks ago i started to feel unwell it was the day after my 40th birthday i went to my jp he sent me to the hospital my blood tests are not good and ive just spent a day in hospital having more tests,i have to go back next week,they have told me my resaults for this week are very bad and im getting into the danger zone of needing a machine this is such a shock in january it was 5 years off today it could be weeks has any of you been through the same thing if so let me know how you coped,I myself feel shellshocked my wife is great say we will cope what ever but she is shocked as much as me i have to go into work with my sick note do i tell them or keep it to myself for the moment if you have been in my shoes drop me a line

thanks Keith :(


Hello Keith.

Sorry to hear your news. When I got diagnosed with kidney failure, I was practically just starting my adult life. I "left the nest" late in life, and I didn't get out into the world until I was 30 (I'm now 34). So when I got the news, I felt like I was only able to enjoy my new life for roughly about a year and a half (found out at age 31). After that, my life has been nothing but lost jobs, dialysis, medications, doctors visits, body aches and pains, etc. Not exactly what I wanted to be doing in my 30s. Now, I have to re-evaluate all the plans that I had made before getting sick, and I'm not going to lie: I hate having to do that. But, it's what I have to do. I manage to keep somewhat positive on most days, but hey, some days I do not. And I say this: on the days that you feel low, then talk with others who are also in your position (meaning dealing with renal failure). This board here is a start. Also, thanks to Steve for mentioning the chatroom that is associated with this board:

http://www.dialyze.org/chat/phpMyChat.php3

Many people come to the chat for support and information. It helps.

All the best to you, good luck. :) 8) :wink:
Dialyze.org:
http://dialyze.org/forums/index.php
Chatroom, Support, Advocacy and more!

Dialyze.org MemberGroup on MSN:
http://groups.msn.com/Dialyze-orgMember ... sages.msnw
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