Kidney Failure - A world turned crazy....

Author

A world turned crazy....

Spectre

2005-05-18, 11:47 am

Hi. I'm new to this group. My wife has ESRF, and was just started on her
dialysis. We would never have known it except she was getting tired all the
time and was sent to a Endocrinologist to determine diabetes. No diabetes,
but he ran other tests. Next day we had an emergency phone call to get to
the ER immediately, my wife was near total renal collapse. Within 24 hours
they had a subclavian catheter into her jugular vein and started dialysis.
Talk about the world collapsing..... Tomorrow she has her fourth session.
She is not doing well on them...severe cramps, vertigo, chest pains, SOB,
drop in BP....the works. The doctor told her she had to stop working which
just through our world into a bigger mess as she is the only one working in
our home (I have failed back syndrom, severe CHF and uncontrolled BP). Life
now sucks. She is being worked up for placement on the transplant list, but
the transplant team surgeon has already told us she may not get one due to
her O- blood and -RH factors. She's only 39 years old.....never knew
anything was wrong....how can doctors not know this was happening? What more
do we have to look forward to? How do you all cope with this disease and
it's associated problems? We just feel all is lost.

Leroy Griffiths
http://mysite.verizon.net/vze1tjuq

Tom Gower

2005-05-20, 11:59 am

Hi Leroy, sorry to hear about your situation. Sounds like life
is falling apart. I'm sure your wifes doctor, if he's a good one, will
do everything possible to make her dialysis treatments more tolerable.
Some times it takes a little while to get things stabalized. In the mean
time try not to get discouraged, have your wife follow her renal diet as
faithfully as possible, and make sure she lets the nurses in the
dialysis unit know of every problem or bad side effect she is
experiencing.

Sometimes dialysis can be brutal, other times it's not so bad.
I will pray for both of you, try to hang in there, and let us know how
you are making out. I have been on dialysis for 16 months now, and am
tolerating it pretty well. Except for feeling like crap when I come home
from dialysis, things are pretty good. On the days between treatments, I
can do anything I want, within reason. I play golf, work in the yard,
cut the grass, go shopping etc. I'm hoping it will be the same for your
situation......Good luck and God bless........

It's not how many times we have tried and failed that matter, but
whether we tried at all.
TOM G

superdude77777@hotmail.com

2005-05-21, 5:52 pm

Leroy-
Basically, life is going to suck greatly for the both of you, from now
until they drop you both into that 6 foot hole. $800 prescriptions, BS
dialysis, feeling like youv'e died already: these are the things in
store for your wife. And since we are not a cause celeb, like AIDS, no
one is really going to give half a rat's XXX, either.

Brutal response? yes, but reading your post entitles you to the truth.

Larry

Peter McLeod

2005-05-23, 11:55 am

In article <gavie.171$6d.3@trnddc07>, someone@msn.net (Spectre) wrote:

> *Subject:* A world turned crazy....
> *From:* "Spectre" <someone@msn.net>
> *Date:* Tue, 17 May 2005 23:32:28 GMT
>
> Hi. I'm new to this group. My wife has ESRF, and was just started on
her
> dialysis. We would never have known it except she was getting tired
all
> the
> time and was sent to a Endocrinologist to determine diabetes. No
> diabetes,
> but he ran other tests. Next day we had an emergency phone call to get
> to
> the ER immediately, my wife was near total renal collapse. Within 24
> hours
> they had a subclavian catheter into her jugular vein and started
> dialysis.
> Talk about the world collapsing..... Tomorrow she has her fourth
> session.
> She is not doing well on them...severe cramps, vertigo, chest pains,
> SOB,
> drop in BP....the works. The doctor told her she had to stop working
> which
> just through our world into a bigger mess as she is the only one
> working in
> our home (I have failed back syndrom, severe CHF and uncontrolled BP).
> Life
> now sucks. She is being worked up for placement on the transplant
list,
> but
> the transplant team surgeon has already told us she may not get one
due
> to
> her O- blood and -RH factors. She's only 39 years old.....never knew
> anything was wrong....how can doctors not know this was happening?
What
> more
> do we have to look forward to? How do you all cope with this disease
and
> it's associated problems? We just feel all is lost.
>
> Leroy Griffiths
> http://mysite.verizon.net/vze1tjuq
>
>
>
I was quite lucky to find my ESRF I had swollen ankles and went o the
doc, an hour later (literally) I was in hospital with BP through the
roof and with the hospital telling my family I might not make it
through the roof. I couldn't work either but many people in the
dialysis unit did quite successfully. 18 months later I had a
transplant and things started looking up (except for loosing my legs to
diabetes related problems.
Your wife mat be able to work again after she is stabilised a bit,
don't give up.

Good luck to you both, I am afraid you may need some

Pete Mc

Peter McLeod

2005-05-23, 11:55 am

In article <1116698422.684558.158500@g43g2000cwa.googlegroups.com>,
superdude77777@hotmail.com () wrote:

> *Subject:* Re: A world turned crazy....
> *From:* superdude77777@hotmail.com
> *Date:* 21 May 2005 11:00:22 -0700
>
> Leroy-
> Basically, life is going to suck greatly for the both of you, from now
> until they drop you both into that 6 foot hole. $800 prescriptions, BS
> dialysis, feeling like youv'e died already: these are the things in
> store for your wife. And since we are not a cause celeb, like AIDS, no
> one is really going to give half a rat's XXX, either.
>
> Brutal response? yes, but reading your post entitles you to the truth.
>
> Larry
>
>
Yes life on dialysis is crap, but it is survivable. My transplant was
such a gift. I couldn't imagine I would feel so well so quickly, but I
did.
The expenses could be crippling but weren't so for me living in the uk
and being diabetic meant I never paid a penny for my treatment or drugs
and I still don't.
Our National Health Service get a bad press at times but it has always
come up with the things I have needed. I don't know how US folk cope
with the medical charges over there, I guess you mostly have private
health insurance but they won't touch me for anything I am likely to get.

Pete Mc

mrrichardarcher@hotmail.com

2005-05-24, 9:01 am

Well Leroy,

you can choose to believe miserable idiot fatalists like 'superdude' or
you can find out that life is not actually that bad.

Haemodialysis is a tough treatment, but when the alternative is death,
it seems like a reasonable option.

Most people like your wife that have sudden kidney failure do at the
start feel bloody awful, but usually within a few weeks begin to
stabilise. it is very important that you listen to the doctors and
nurses and follow their advice - this should minimise any ill effects.
If your wife is sensible and intelligent then as time goes on she will
learn more about the dialysis process and she'll find out what makes
life easier for her and what she should avoid also.

Plenty of people that are stable on dialysis go out to work. And as for
other activities. I still sail my boat, ride my bike and go hiking

all the best

Richard Archer
86-90 HD
90-02 TX
03-present 15 hrs Home Haemodialysis (5 x week)

Peter McLeod

2005-05-25, 8:56 am

In article <memo.20050523164718.1652B@Administrator.cix.co.uk>,
pete@nospam.please (Peter McLeod) wrote:

> *Subject:* Re: A world turned crazy....
> *From:* pete@nospam.please (Peter McLeod)
> *Date:* Mon, 23 May 2005 16:47 +0100 (BST)
>
> In article <gavie.171$6d.3@trnddc07>, someone@msn.net (Spectre) wrote:
>
> her
> all
> list,
> due
> What
> and
> I was quite lucky to find my ESRF I had swollen ankles and went o the
> doc, an hour later (literally) I was in hospital with BP through the
> roof and with the hospital telling my family I might not make it
> through the roof. I couldn't work either but many people in the
> dialysis unit did quite successfully. 18 months later I had a
> transplant and things started looking up (except for loosing my legs
to
> diabetes related problems.
> Your wife mat be able to work again after she is stabilised a bit,
> don't give up.
>
> Good luck to you both, I am afraid you may need some
>
> Pete Mc
>
Ha, my typing, I might not make it through the roof LOL I did mean
night, honest;)

Pete Mc

daniel.granot@gmail.com

2005-05-25, 11:52 am

Why should it be that "life on dialysis is crap"?

Why do I feel differently?

Is it because I realise that I would be dead otherwise?

Is it because I don't compare myself with those who don't have any
health problems?

Is it because I create my challenges, goals and successes?

When dialysis is no longer simply a part of life and becomes the thing
that turns your life into one that "sucks" perhaps it is your mentality
or attitude that "sucks".

My goals are still the same as they were when I had a functioning
kidney. The difference is that I have to find other ways of reaching
those goals. I'm happy with my life and whilst I look forward to a
kidney transplant, I know I live a fulfilling life regardless.

Tom Gower

2005-05-26, 11:50 am

Great attitude Daniel. Life can still be pretty good even on
dialysis. I have been on it since Jan. 04, so its been 16 months now. I
applied to get on the transplant list, and after some intense testing
was advised by the transplant surgeon that I was not a good candidate
due to my heart. He said my heart would not stand the stress of the
surgery, and all the anti-rejection medicines. So I guess I will be on
dialysis for a while yet. I'm going to be 65 this August.

The days of my dialysis, i come home feeling really washed
out. but the next day I'm fine. My dialysis days are Mon, Wed., and Fri.
On Sat. and Sun, and Mon I feel great. then I go to dialysis on Mon
afternoon. When I first started dialysis, i was very tired all the time,
and couldn't do much of anything, now I can play golf, cut the grass go
out to dinner and a movie, shop drive and do pretty much whatever I want
to do. Maybe I'm just blessed, But one thing I do know, I have it better
that 99% of the other people that go to the same dialysis center that I
do. Most of them are wheel chair bound, or on walkers, or have to be
taken out on a litter. Every now and then when I start feeling sorry for
myself, I think of those other poor souls, and things start to come back
to reality again.......
I would tell anyone going on dialysis to hang in there, give
it a chance, remember dialysis is very hard on your body, including your
heart, so you may feel really bad for a while but with Gods blessings,
things will get better.......

It's not how many times we have tried and failed that matter, but
whether we tried at all.
TOM G

daniel.granot@gmail.com

2005-05-28, 10:55 pm

Thanks Tom.

Glad I'm not the only one.

Keep up the good work.

charles381@webtv.net

2005-05-31, 11:52 am

Hey, if you lose her.....be realistic. The world is full of other ladies
that will be glad to take their place at your side.
Espeically if there is alot of insurance money.....

Chuck

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text="white"></html>

REP

2005-06-01, 9:03 am

In article <14971-429C8F25-453@storefull-3135.bay.webtv.net>,
charles381@webtv.net wrote:

> Hey, if you lose her.....be realistic. The world is full of other ladies
> that will be glad to take their place at your side.
> Espeically if there is alot of insurance money.....

Another touching sentiment brought to us by someone who can't even work
a computer.

--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather

Peter McLeod

2005-06-03, 11:51 am

In article <1117031232.366209.301540@z14g2000cwz.googlegroups.com>,
daniel.granot@gmail.com () wrote:

> *Subject:* Re: A world turned crazy....
> *From:* "daniel.granot@gmail.com" <daniel.granot@gmail.com>
> *Date:* 25 May 2005 07:27:12 -0700
>
> Why should it be that "life on dialysis is crap"?
>
> Why do I feel differently?
>
> Is it because I realise that I would be dead otherwise?
>
> Is it because I don't compare myself with those who don't have any
> health problems?
>
> Is it because I create my challenges, goals and successes?
>
> When dialysis is no longer simply a part of life and becomes the thing
> that turns your life into one that "sucks" perhaps it is your mentality
> or attitude that "sucks".
>
> My goals are still the same as they were when I had a functioning
> kidney. The difference is that I have to find other ways of reaching
> those goals. I'm happy with my life and whilst I look forward to a
> kidney transplant, I know I live a fulfilling life regardless.
>
>
What I found crap was throwing up almost every time I ate, drinking
500mL of fluid a day, When I did eat I got severe indigestion, even now
I find this unless I have a drink with my meal.
I couldn't get the energy to work, my business suffered form m y lack
of attention and I suffered financially, but not as bad as those people
who work for somebody else and cannot cope with it.
I found feeling ill pretty much all the time crap.

but most of all I seemed to end up spending perhaps half of my time on
dialysis in hospital, I detest being in hospital.

your attitude is good and I wish you very well with it, but some people
do seem to suffer more than others on dialysis

Pete Mc

Peter McLeod

2005-06-03, 11:51 am

In article <Y%bne.927$IE7.241@newssvr21.news.prodigy.com>,
rep@inanna.com (REP) wrote:

> *Subject:* Re: A world turned crazy....
> *From:* REP <rep@inanna.com>
> *Date:* Wed, 01 Jun 2005 05:49:44 GMT
>
> In article <14971-429C8F25-453@storefull-3135.bay.webtv.net>,
> charles381@webtv.net wrote:
>
>
> Another touching sentiment brought to us by someone who can't even
work
> a computer.
>
> --
> "Did Father shoot him? I will eat Grandfather for dinner."
> - Helen Keller, on learning of the death of her grandfather
>
LOL

Pete Mc

Judanne

2005-06-27, 10:04 am

Hi Leroy,

I'd suggest that you make an appointment with the renal unit social worker
for some support and and idea of what sort of assistance you can and cannot
expect. It seems to be different in each country, and from what others have
said, if you are in the US, even from state to state, so its important that
you find out what your entitlements are.

I've just had my second kidney tranpsplant after 4 years of dialysis this
time. With acute renal failure, your wife will feel like crap for a while
until her body adjusts to the treatment, but this should be temporary for
her. Most of us manage quite well after a while, but it does take some
adjusting to. Lots of us also manage to work part time, so it may not be
that you lose all of your income. See what sort of income support is
available for you, too, as some will be better than none.

Judanne
Tasmania
"Spectre" <someone@msn.net> wrote in message news:gavie.171$6d.3@trnddc07...
> Hi. I'm new to this group. My wife has ESRF, and was just started on her
> dialysis. We would never have known it except she was getting tired all
> the
> time and was sent to a Endocrinologist to determine diabetes. No diabetes,
> but he ran other tests. Next day we had an emergency phone call to get to
> the ER immediately, my wife was near total renal collapse. Within 24 hours
> they had a subclavian catheter into her jugular vein and started dialysis.
> Talk about the world collapsing..... Tomorrow she has her fourth
> session.
> She is not doing well on them...severe cramps, vertigo, chest pains, SOB,
> drop in BP....the works. The doctor told her she had to stop working which
> just through our world into a bigger mess as she is the only one working
> in
> our home (I have failed back syndrom, severe CHF and uncontrolled BP).
> Life
> now sucks. She is being worked up for placement on the transplant list,
> but
> the transplant team surgeon has already told us she may not get one due to
> her O- blood and -RH factors. She's only 39 years old.....never knew
> anything was wrong....how can doctors not know this was happening? What
> more
> do we have to look forward to? How do you all cope with this disease and
> it's associated problems? We just feel all is lost.
>
> Leroy Griffiths
> http://mysite.verizon.net/vze1tjuq
>
>