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| jubilee 2005-06-12, 8:54 am |
| i've just been given my life sentence, one kidney woking, and at 20%percent
im scared i will die soon, and leave my infant son behind to live a life
without a mother you see im 23 yrs old and have had diabetes for 20 yrs
now and its taking its toll on me ,im scared to have dialysis done and
hear its better to just get the transplant done before you even get on
dialysis, is there an alternantive to all this?
(this will not take me down w/o a fight, my faith is still stronger than
my fear)
jessica
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| daniel.granot@gmail.com 2005-06-12, 8:54 am |
| There are many of us living purposeful lives even with dialysis.
I'm not sure what you've heard about dialysis and its impact on daily
lives but perhaps you've only heard the worst stories out there.
There are also many who have had a few transplants and have realised
they do not make good candidates and have resigned themselves to
dialysis for the rest of their lives (until new innovations avail
themselves).
Talk to other renal physicians and other renal patients.
The world is not so bleak.
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| Hi Jessica
Dialysis is not as bad as all that. I've been on it for 3 years, and I see
many young people in their 20's at the dialysis centre who seem to do just
fine, as do most people. They are usually in fine spirits, just like most
people at that age. It's just an inconvenience and a time waster, that's
all. I'm on hemodialysis. I do myself at home (not available everywhere),
but there's also peritoneal dialysis, as well as in-centre hemodialysis.
Once you get the information you need, hopefully via some pre-dialysis
classes, you will be able to choose what works best for you, and if it
doesn't work out well, you will be able to switch later on.
It's generally recognized that it's better to get a transplant early as
opposed to later. If you happen to have a live donor who is a match and who
qualifies medically, then you could potentially get the kidney transplant
just before you would start dialysis. This is called "pre-emptive
transplant". It's a good way to go if you can do it, because the transplant
waiting lists are pretty long these days. I'm on the waiting list myself,
but if I had to, I could continue on home hemodialysis indefinitely.
Don't read all the negative stuff. That's the worst thing you can do. It's
just not that negative for most people.
Pierre
"jubilee" <jessica_jubi@yahoo.com> wrote in message
news:cd5283a705b8e4cc1e58909dab40ea09@localhost.talkaboutsupport.com...
> i've just been given my life sentence, one kidney woking, and at
> 20%percent
> im scared i will die soon, and leave my infant son behind to live a life
> without a mother you see im 23 yrs old and have had diabetes for 20 yrs
> now and its taking its toll on me ,im scared to have dialysis done and
> hear its better to just get the transplant done before you even get on
> dialysis, is there an alternantive to all this?
>
>
> (this will not take me down w/o a fight, my faith is still stronger than
> my fear)
>
> jessica
>
| |
| Spectre 2005-06-15, 12:20 pm |
| My wife was just diagnosed last month with ESRF. I will tell you that we too
were devestated.....lose of her job, no insurance, instertion of the jugular
cath, surgery for the graft in her arm, failure of the graft to functionm,
dialysis, visits to so many doctors we can't remember all their
names.....yes, life seems like it is ending. But it's not. There is always
hope. Remember that you cannot give up on yourself. Your child needs
you...your family needs you.. your friends need you. I'll be honest...it's
been rough. Buy we keep trying. Best of luck to you.
Leroy Griffiths
http://mysite.verizon.net/vze1tjuq
"jubilee" <jessica_jubi@yahoo.com> wrote in message
news:cd5283a705b8e4cc1e58909dab40ea09@localhost.talkaboutsupport.com...
> i've just been given my life sentence, one kidney woking, and at
20%percent
> im scared i will die soon, and leave my infant son behind to live a life
> without a mother you see im 23 yrs old and have had diabetes for 20 yrs
> now and its taking its toll on me ,im scared to have dialysis done and
> hear its better to just get the transplant done before you even get on
> dialysis, is there an alternantive to all this?
>
>
> (this will not take me down w/o a fight, my faith is still stronger than
> my fear)
>
> jessica
>
| |
|
| I'm wondering why they put in a jugular cath. I've already made up my mind
there is no way they are sticking me with one of these. I've had a dozen or
so subclavian caths and even though it feels like I've been hit by a
baseball bat after insertion I'd much rather prefer it.
Celeste
"Spectre" <someone@msn.net> wrote in message
news:J1Vre.8092$L65.305@trnddc05...
> My wife was just diagnosed last month with ESRF. I will tell you that we
too
> were devestated.....lose of her job, no insurance, instertion of the
jugular
> cath, surgery for the graft in her arm, failure of the graft to functionm,
> dialysis, visits to so many doctors we can't remember all their
> names.....yes, life seems like it is ending. But it's not. There is always
> hope. Remember that you cannot give up on yourself. Your child needs
> you...your family needs you.. your friends need you. I'll be honest...it's
> been rough. Buy we keep trying. Best of luck to you.
>
> Leroy Griffiths
> http://mysite.verizon.net/vze1tjuq
>
>
>
>
> "jubilee" <jessica_jubi@yahoo.com> wrote in message
> news:cd5283a705b8e4cc1e58909dab40ea09@localhost.talkaboutsupport.com...
> 20%percent
>
>
| |
| Larry Krzewinski 2005-06-15, 10:54 pm |
| On Thu, 16 Jun 2005 02:07:22 GMT, "Spot" <NoSpamMe@verizon.net> wrote:
>I'm wondering why they put in a jugular cath. I've already made up my mind
>there is no way they are sticking me with one of these. I've had a dozen or
>so subclavian caths and even though it feels like I've been hit by a
>baseball bat after insertion I'd much rather prefer it.
They do that fairly frequently now, Celeste, if dialysis is needed
immediately. I hated my jugular caths and I've had them twice. You
can't really shower with them although I found if I wrapped my neck in
plastic wrap I could get a shower every other day but you do have to
be careful in case you get the cath wet and it becomes infected. Not
being able to shave around the cath and the discomfort when sleeping
really bugged me. Luckily I only had to wear both of mine for three
weeks but they were still irritating. They did keep me alive,
however, so they do have a huge plus side.
Larry
| |
| Tom Gower 2005-06-16, 11:51 am |
| Excellent post Larry re: keeping cath sites from getting
infected. When I first started on dialysis, I had a subclavical
catheter. I worked very good, and they were using it until my "fistula"
became good enough to use, Then all of a sudden, the catheter site
became infected, and my body started going sepsis. They had to air lift
me from my local hospital to a hospital more equipt to handle my
situation.Organs were starting to shut down, but thank God, they found
out what type of antibiotics to use, and they stopped the infection, but
I was one sick puppy for about a week.
A little side note to this story is that I got out of the
hospital two days before my daughter was getting married. And with some
excellent medical care and Gods help, I was able to walk her down the
aisle. Although it was a rather slow walk because I was still very weak,
nevertheless I made it.......
The moral of this story is "DO WHATEVER IT TAKES TO AVOID
INFECTING YOUR CATHETER SITE"
It's not how many times we have tried and failed that matter, but
whether we tried at all.
TOM G
| |
|
| I've never had trouble keeping a cath site from getting infected and they
never kept me from showering. I prefer the other type due to the fact that
the neck caths are just plain ugly and no one ever really knew I had one in.
Where with the neck type you are advertising for the whole world to see.
Like I said it feels like you get with a base ball bat for a few days from a
subclavian cath but I personally much rather prefer it.
Celeste
"Larry Krzewinski" <Feerless_Freep@madmagazine.com> wrote in message
news:tgr1b1l02m7m6dte0plqaf9c033atk0e4p@4ax.com...
> On Thu, 16 Jun 2005 02:07:22 GMT, "Spot" <NoSpamMe@verizon.net> wrote:
>
mind[vbcol=seagreen]
or[vbcol=seagreen]
>
> They do that fairly frequently now, Celeste, if dialysis is needed
> immediately. I hated my jugular caths and I've had them twice. You
> can't really shower with them although I found if I wrapped my neck in
> plastic wrap I could get a shower every other day but you do have to
> be careful in case you get the cath wet and it becomes infected. Not
> being able to shave around the cath and the discomfort when sleeping
> really bugged me. Luckily I only had to wear both of mine for three
> weeks but they were still irritating. They did keep me alive,
> however, so they do have a huge plus side.
>
> Larry
| |
| Larry Krzewinski 2005-06-18, 6:25 pm |
| On Thu, 16 Jun 2005 23:46:16 GMT, "Spot" <NoSpamMe@verizon.net> wrote:
>I've never had trouble keeping a cath site from getting infected and they
>never kept me from showering. I prefer the other type due to the fact that
>the neck caths are just plain ugly and no one ever really knew I had one in.
>Where with the neck type you are advertising for the whole world to see.
>Like I said it feels like you get with a base ball bat for a few days from a
>subclavian cath but I personally much rather prefer it.
>
>Celeste
While I agree with you, Celeste, it isn't always up to the patient
these days as to what type of cath they get. With some managed care
plans you get what they give you.
Larry
| |
| Peter McLeod 2005-06-18, 6:25 pm |
| In article
<cd5283a705b8e4cc1e58909dab40ea09@localhost.talkaboutsupport.com>,
jessica_jubi@yahoo.com (jubilee) wrote:
> *Subject:* fearfull
> *From:* "jubilee" <jessica_jubi@yahoo.com>
> *Date:* Sun, 12 Jun 2005 01:52:52 -0400
>
> i've just been given my life sentence, one kidney woking, and at
> 20%percent
> im scared i will die soon, and leave my infant son behind to live a
life
> without a mother you see im 23 yrs old and have had diabetes for 20 yrs
> now and its taking its toll on me ,im scared to have dialysis done and
> hear its better to just get the transplant done before you even get on
> dialysis, is there an alternantive to all this?
>
>
> (this will not take me down w/o a fight, my faith is still stronger
than
> my fear)
>
> jessica
>
>
Transplants before dialysis are very unusual, though not unheard of in
the UK I have met one person who has done this. Dialysis isn't fun but
is better than the alternative.
Pete Mc
| |
| Judanne 2005-06-27, 10:04 am |
| Jessica,
I know it sounds bad, but I'd guess that at 20% funciton you'll have some
small leeway before you have to start dialysis. Take the time to find out
what options are available. Find out where you will be dialysing and go and
have a talk to the sister in charge as well as the social worker attached to
the unit. The sister will be able to allay most of your fears and the
social worker will provide some practical advice.
I was diagnosed with renal failure at 18 and I'm now 52. I started dialysis
at 27 and had a transplant 10 months later. That lasted 20 years. After
that I started peritoneal dialysis, which didn't work well for me, so then
started haemodialysis, which has worked very well for the last 4 1/2 years.
Had my second transplant from a non-related living donor just over 5 weeks
ago and I'm going very well.
Judanne
Tasmania
"jubilee" <jessica_jubi@yahoo.com> wrote in message
news:cd5283a705b8e4cc1e58909dab40ea09@localhost.talkaboutsupport.com...
> i've just been given my life sentence, one kidney woking, and at
> 20%percent
> im scared i will die soon, and leave my infant son behind to live a life
> without a mother you see im 23 yrs old and have had diabetes for 20 yrs
> now and its taking its toll on me ,im scared to have dialysis done and
> hear its better to just get the transplant done before you even get on
> dialysis, is there an alternantive to all this?
>
>
> (this will not take me down w/o a fight, my faith is still stronger than
> my fear)
>
> jessica
>
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