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Home > Archive > Kidney Failure > June 2006 > Going on dialysis soon
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Going on dialysis soon
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| kasheen 2006-06-04, 9:34 am |
| I expect that within the next few weeks they will start to prepare me for
dialysis (I have no idea what kind). My GFR is 15 now and creatinine is 300.
Does anyone have any advice for how to deal with this experience?
| |
| Jason Johnson 2006-06-04, 9:34 am |
| In article <LICfg.1496$Su3.132327@news20.bellglobal.com>, "kasheen"
<kasheen@sympatico.ca> wrote:
I expect that within the next few weeks they will start to prepare me for
dialysis (I have no idea what kind). My GFR is 15 now and creatinine is 300.
Does anyone have any advice for how to deal with this experience?
My prayers are with you. The only advice I have is for you to read this
book and to visit the website mentioned below.
"Coping With Kidney Disease" by Mackenzie Walser, M.D. (kidney specialist)
http://www.healthsystem.virginia.ed...ition/Goals.cfm
Also, google
"nutrition and dialysis"
Also, ask your doctor or the nurse about support groups in your area.
May God Bless You,
Jason
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| Charles Torrisi 2006-06-04, 9:34 am |
| I can only tell you that my son started dialysis the second week in
April. He goes three times a week, for four hours at a time. He feels
so much better now than he did before. his blood is cleansed, he
getting the nutrients in his body that his kidneys did ot process and he
finds it a positive experience. His color is better and all in all, it
has become his best friend for the time being. He is being evaluated in
Boston and is going for tests and will be put on a transplant list by
August. Luckily, there is a baseball game he watches to pass the time,
and he goes after work. He is able to work and fit his bowling and his
golf game in on the days he doesn't go. All in all, he is doing great,
his energy level has improved, he sleeps all night, and he is not as
cold as he was before. He had the fistula put in about 1 year before he
started treatments and they are pleased with the results of that. We,
as parents were basket cases before this all started, but when we see
how much better he feels, we are ok with it now. We have polycystic
kidney disease that runs in my family and he got it the worst. He is 48.
Good luck, keep a positive attitude, finds things to do help pass the
time, and you will be fine. A. Torrisi
Have a great day!!
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| kasheen wrote:
> I expect that within the next few weeks they will start to prepare me for
> dialysis (I have no idea what kind). My GFR is 15 now and creatinine is 300.
> Does anyone have any advice for how to deal with this experience?
>
>
Yes, get on the transplant list ASAP.
Good Luck,
Alan
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| Tom Scales 2006-06-04, 9:34 am |
|
"kasheen" <kasheen@sympatico.ca> wrote in message
news:LICfg.1496$Su3.132327@news20.bellglobal.com...
>I expect that within the next few weeks they will start to prepare me for
>dialysis (I have no idea what kind). My GFR is 15 now and creatinine is
>300. Does anyone have any advice for how to deal with this experience?
>
I'm not the patient, I'm her husband, but if you have a 'significant other'
that is willing, I recommend you look into hemodialysis at home. We have a
dialysis machine in our bedroom and do it every other day (Medicare pays for
extra treatments for home patients). It has really given us her life back,
as we can schedule it on our time, on our schedule without the intrusiveness
of the clinic process. We do it at night and sleep through most of it.
Regardless of your path, good luck. It's trying, but you will feel so much
better.
Tom
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| kasheen 2006-06-04, 9:34 am |
| I will take all your advice and am grateful for it. It is a lonely world out
there when you are going through this and don't know anyone to ask (someone
who is actually going through or went through this process). I am so looking
forward to feeling better and having more energy. And yes, I have already
mentioned going on a transplant list to my nephrologist. Hopefully at my
next appointment in June 12 we will know what I need, it has been
fact-finding tests up to this point. There isn't a local support group that
I know of, but my nephrology group social worker mentioned about finding me
a mentor who has gone through what I am. I will take them up on that. They
did give me a book about living with kidney disease, and that was helpful. I
am getting another through the library "Coping with Kidney Disease".
My thanks to all who have responded.
Kathy
"Charles Torrisi" <CTORRISI56@webtv.net> wrote in message
news:6109-447F2D29-687@storefull-3311.bay.webtv.net...
>I can only tell you that my son started dialysis the second week in
> April. He goes three times a week, for four hours at a time. He feels
> so much better now than he did before. his blood is cleansed, he
> getting the nutrients in his body that his kidneys did ot process and he
> finds it a positive experience. His color is better and all in all, it
> has become his best friend for the time being. He is being evaluated in
> Boston and is going for tests and will be put on a transplant list by
> August. Luckily, there is a baseball game he watches to pass the time,
> and he goes after work. He is able to work and fit his bowling and his
> golf game in on the days he doesn't go. All in all, he is doing great,
> his energy level has improved, he sleeps all night, and he is not as
> cold as he was before. He had the fistula put in about 1 year before he
> started treatments and they are pleased with the results of that. We,
> as parents were basket cases before this all started, but when we see
> how much better he feels, we are ok with it now. We have polycystic
> kidney disease that runs in my family and he got it the worst. He is 48.
> Good luck, keep a positive attitude, finds things to do help pass the
> time, and you will be fine. A. Torrisi
>
> Have a great day!!
>
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Kathy,
Do not rely on your nephrologist to get you on the transplant list, they
are often slow, and some say they get more benefit by have their
patients on dialysis. You can start the arrangements yourself by
contacting your local transplant hospital. They will tell you how to
start and have you in for your initial workups.
Remember, dialysis is only a stopgap, it doesnt cure anything, and in
fact all it does is slow down the deterioration in your health.
Dont wait. !!!
kasheen wrote:
> I will take all your advice and am grateful for it. It is a lonely world out
> there when you are going through this and don't know anyone to ask (someone
> who is actually going through or went through this process). I am so looking
> forward to feeling better and having more energy. And yes, I have already
> mentioned going on a transplant list to my nephrologist. Hopefully at my
> next appointment in June 12 we will know what I need, it has been
> fact-finding tests up to this point. There isn't a local support group that
> I know of, but my nephrology group social worker mentioned about finding me
> a mentor who has gone through what I am. I will take them up on that. They
> did give me a book about living with kidney disease, and that was helpful. I
> am getting another through the library "Coping with Kidney Disease".
> My thanks to all who have responded.
> Kathy
>
> "Charles Torrisi" <CTORRISI56@webtv.net> wrote in message
> news:6109-447F2D29-687@storefull-3311.bay.webtv.net...
>
>
>
>
| |
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| I completely agree with Alan on this. Find out the closest center and
contact them ASAP. It takes months to go through all the testing they do to
get you approved and the sooner the better. Not to mention all the
paperwork for the insurance. If you have to be pushy about it do so. You
have to speak up for yourself to make sure you get the best care possible.
Celeste
"Alan" <Spam@aol.com> wrote in message news:447F6223.1010007@aol.com...[vbcol=seagreen]
>
>
> Kathy,
> Do not rely on your nephrologist to get you on the transplant list, they
> are often slow, and some say they get more benefit by have their patients
> on dialysis. You can start the arrangements yourself by contacting your
> local transplant hospital. They will tell you how to start and have you in
> for your initial workups.
> Remember, dialysis is only a stopgap, it doesnt cure anything, and in fact
> all it does is slow down the deterioration in your health.
> Dont wait. !!!
>
>
> kasheen wrote:
| |
| Paul Bartram 2006-06-04, 9:34 am |
|
"Spot" <noSPAMme@somewhere.net> wrote
> I completely agree with Alan on this. Find out the closest center and
> contact them ASAP. It takes months to go through all the testing they do
to
> get you approved and the sooner the better. Not to mention all the
> paperwork for the insurance. If you have to be pushy about it do so. You
> have to speak up for yourself to make sure you get the best care possible.
Don't I know it. I'm on HD in a public system hospital in Queensland
Australia. I've been kicked off the transplant list because of heart
problems, but you practically have to kidnap a renal specialist to get any
answers at all out of the bureaucracy here. I've been trying for weeks now
just to get my tissue-typing information out of my own file so I can at
least go 'shopping' privately for a kidney. In the end, I had to have the
test done again in a private laboratory.
I'm told HD costs the state $80,000 AU per patient per year, so it's an
expensive drain on the public purse, and the number of patients is
increasing. And of course we don't want to be there, but because of legal
restraints as much as anything there just aren't even a fraction of the
required organs available for those that need them. Not much is going to
change until the system changes to make donation an opt-out rather than
opt-in scenario. Either that or there is a breakthrough in stem-cell
research or they can start using pig organs in humans...
All I can say is hang in there, and don't be afraid to speak up for
yourself - don't let disinterested staff fob you off with vague promises to
'see what can be done'. There are always a few of those, but there are also
some that will try and help beyond their remit. You get better at spotting
them after a while!
Paul
| |
| daniel.granot@gmail.com 2006-06-04, 9:34 am |
|
One thing that will help you get into the "most useful" mindset is to
realise that your potential before and after kidney failure is much the
same. The difference is that your attitude is what is most important.
As such, I found it most useful to adopt the attittude that "the
dialysis machine is the friend that none of us likes but have to
appreciate him/her for what he/she does for us".
See it as the saviour for what it is rather than the hindrance to your
life that many feel about it.
Learn as much as you can about dialysis and how to make the most of it
so that you can take control of your health rather than just accepting
what your specialists say. Put yourself in the "driver's seat" and take
control of your health if you want to make the most of your life.
Also, a transplant is not a solution or cure but rather a different
form of treatment most often considered preferable than dialysis.
kasheen wrote:
> I expect that within the next few weeks they will start to prepare me for
> dialysis (I have no idea what kind). My GFR is 15 now and creatinine is 300.
> Does anyone have any advice for how to deal with this experience?
| |
| kasheen 2006-06-04, 9:34 am |
| You have all sent so much good information and I am taking note of all of
it. I am very fortunate in my nephrologist, as he is a "what you see is what
you get" kind of doc. If I have any concerns and call into the clinic he is
very fast to call me back and act on my concerns. As I live in Canada I
don't have the insurance issues that those in the USA do as our government
covers the costs. But neither do we have as many resources available for
immediate service as they do for dialysis locations, transplant hospitals,
etc so I am relying on the services that are located 3 hours away for
initial dialysis (and hopefully transplant). Fortunately we have a satellite
dialysis unit at our local hospital that can be used once I am stabilized in
my program, if I am on hemodialysis.
I have read from some people that you tend to weaken with dialysis, others
state that you feel really well. What is the story? I am trying to approach
this with the best mindset I can, but this is hard some days.
<daniel.granot@gmail.com> wrote in message
news:1149241124.366028.313220@i40g2000cwc.googlegroups.com...
>
> One thing that will help you get into the "most useful" mindset is to
> realise that your potential before and after kidney failure is much the
> same. The difference is that your attitude is what is most important.
>
> As such, I found it most useful to adopt the attittude that "the
> dialysis machine is the friend that none of us likes but have to
> appreciate him/her for what he/she does for us".
>
> See it as the saviour for what it is rather than the hindrance to your
> life that many feel about it.
>
> Learn as much as you can about dialysis and how to make the most of it
> so that you can take control of your health rather than just accepting
> what your specialists say. Put yourself in the "driver's seat" and take
> control of your health if you want to make the most of your life.
>
> Also, a transplant is not a solution or cure but rather a different
> form of treatment most often considered preferable than dialysis.
>
> kasheen wrote:
>
| |
|
| kasheen wrote:
> I expect that within the next few weeks they will start to prepare me for
> dialysis (I have no idea what kind). My GFR is 15 now and creatinine is 300.
> Does anyone have any advice for how to deal with this experience?
*************
please visit:
http://kidneyschool.org
it is very helpful
also, there are kidney patient support groups out there besides this
forum like:
http://www.aakp.org (American XXX0ciation of Kidney Patients)
http://www.kidney.org (National Kidney Foundation)
http://www.rsnhope.org (Renal Support Network)
You are not alone.... - Kim
| |
| Paul Bartram 2006-06-04, 9:34 am |
|
"kasheen" <kasheen@sympatico.ca> wrote
> I have read from some people that you tend to weaken with dialysis, others
> state that you feel really well. What is the story? I am trying to
approach
> this with the best mindset I can, but this is hard some days.
I've noticed the same thing, and it doesn't seem to be related to age, as
you'd expect. There are several 80+ 'veterans' in our dialysis ward who
positively spring out of the door after their session. I'm 54, a non smoker,
ex tradesman and lifelong cyclist and bushwalker, and some nights I have to
be sent home in an ambulance because I'm too tired to walk out to the car!
It just seems to affect people differently...
Paul
| |
| daniel.granot@gmail.com 2006-06-04, 9:34 am |
|
I am 32 and have never been healthier and fitter than I am now and have
haemo-dialysis two hours every day (except for Sunday).
You are only limited by your attitude.
kasheen wrote:[vbcol=seagreen]
> You have all sent so much good information and I am taking note of all of
> it. I am very fortunate in my nephrologist, as he is a "what you see is what
> you get" kind of doc. If I have any concerns and call into the clinic he is
> very fast to call me back and act on my concerns. As I live in Canada I
> don't have the insurance issues that those in the USA do as our government
> covers the costs. But neither do we have as many resources available for
> immediate service as they do for dialysis locations, transplant hospitals,
> etc so I am relying on the services that are located 3 hours away for
> initial dialysis (and hopefully transplant). Fortunately we have a satellite
> dialysis unit at our local hospital that can be used once I am stabilized in
> my program, if I am on hemodialysis.
>
> I have read from some people that you tend to weaken with dialysis, others
> state that you feel really well. What is the story? I am trying to approach
> this with the best mindset I can, but this is hard some days.
>
> <daniel.granot@gmail.com> wrote in message
> news:1149241124.366028.313220@i40g2000cwc.googlegroups.com...
| |
|
| People often feel much better after starting dialysis only because they
felt so bad before. Dialysis performs miracles in bring peoples health
back to a more normal level after kidneys begin to fail, but remember,
dialysis does not replace a kidney and does not perform nearly as well.
kasheen wrote:
> You have all sent so much good information and I am taking note of all of
> it. I am very fortunate in my nephrologist, as he is a "what you see is what
> you get" kind of doc. If I have any concerns and call into the clinic he is
> very fast to call me back and act on my concerns. As I live in Canada I
> don't have the insurance issues that those in the USA do as our government
> covers the costs. But neither do we have as many resources available for
> immediate service as they do for dialysis locations, transplant hospitals,
> etc so I am relying on the services that are located 3 hours away for
> initial dialysis (and hopefully transplant). Fortunately we have a satellite
> dialysis unit at our local hospital that can be used once I am stabilized in
> my program, if I am on hemodialysis.
>
> I have read from some people that you tend to weaken with dialysis, others
> state that you feel really well. What is the story? I am trying to approach
> this with the best mindset I can, but this is hard some days.
>
> <daniel.granot@gmail.com> wrote in message
> news:1149241124.366028.313220@i40g2000cwc.googlegroups.com...
>
>
>
| |
| Jason Johnson 2006-06-04, 9:34 am |
| In article <4481285a$0$19780$afc38c87@news.optusnet.com.au>, "Paul
Bartram" <p.bartram AT OR NEAR optusnet.com.au> wrote:
"kasheen" <kasheen@sympatico.ca> wrote
> I have read from some people that you tend to weaken with dialysis, others
> state that you feel really well. What is the story? I am trying to
approach
> this with the best mindset I can, but this is hard some days.
I've noticed the same thing, and it doesn't seem to be related to age, as
you'd expect. There are several 80+ 'veterans' in our dialysis ward who
positively spring out of the door after their session. I'm 54, a non smoker,
ex tradesman and lifelong cyclist and bushwalker, and some nights I have to
be sent home in an ambulance because I'm too tired to walk out to the car!
It just seems to affect people differently...
Paul
Paul,
Thanks for your post. I have a neighbor that also has lots of pains
related to dialysis. His wife has to take him home after each session as a
result of the pain. I asked him about the pains and he said that after a
session that he feels so weak that he can not walk or drive. He did tell
me that he usually feels great during the days that he does not have to
have dialysis.
Jason
| |
| Judanne 2006-06-08, 2:31 am |
| What sort of dialysis have you chosen, or has been chosen for you?
The first thing that will happen is that some sort of access will need to be
provided. For haemodialysis that will mean a fistula, usually in your upper
or lower arm.
For peritoneal dialysis, a tenchhoff catheter will be inserted into your
abdomen.
I had both inserted at the same time when I was ready to go back onto
dialysis. I had chosen peritoneal because I lived a good distance from
dialysis units and thought it would be less trouble for me because I'd be
able to do it all myself at home or at work.
Unfortunately it didn't work for me, so I'm glad I had the fistula inserted
at the same time because after 6 months struggling to get the peritoneal
dialysis working I started on haemo and never looked back. That was all in
2001. I had a transplant last year from a living donor and am doing very
well now.
Get as much support as you can from family and friends and VERY IMPORTANTLY
if your centre / hospital / clinic has a social worker, get to know him /
her as they can smooth the way for you with whatever support is needed at
the time.
Best of luck to you.
Judanne
Tasmania
"kasheen" <kasheen@sympatico.ca> wrote in message
news:LICfg.1496$Su3.132327@news20.bellglobal.com...
>I expect that within the next few weeks they will start to prepare me for
>dialysis (I have no idea what kind). My GFR is 15 now and creatinine is
>300. Does anyone have any advice for how to deal with this experience?
>
| |
| newmexican@cliffhanger.com 2006-06-08, 4:27 pm |
|
kasheen wrote:
> I expect that within the next few weeks they will start to prepare me for
> dialysis (I have no idea what kind). My GFR is 15 now and creatinine is 300.
> Does anyone have any advice for how to deal with this experience?
just learn about foods and stuff...since i been on dialysis my eating
is completely different from years ago...almost like a different
person....you really have to learn about stuff like that so start
researching now...i will have to look at my links to give you good
places to go.....
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