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| Harold 2006-07-11, 4:29 pm |
| Ten years ago the doctor said I have high blood pressure. Take these
pills or die! Today I take 5 pills but the pressure is 120 / 80. Eight
years ago I get a call I have been refused life insurance because of a
high protean count. A biopsy and 2 pints of blood later I have FSGS.
But I am pre dialysis; I have not hit the magic number yet! What ever
that is? I am on the transplant list, but they tell me it may be years
before a kidney becomes available. I am exhausted all the time, half
blind and going deaf. But the doctors tell me I am fine. I wake up
every morning throwing up to start my day. I don't want work to know
how I feel I need my job. Being an office manager helps. I tell my
family I am doing fine. I tell the doctor all is ok, because I do not
want to go on dialysis and I don't him to think I am making myself
sick.
Life is always different with FSGS every pill has a side effect worse
then the one. The steroid faze was great, moon face and round, but I
had great skin. The mood swings were worse then PMS so I was told. So
don't tell me I don't understand a woman's problem. I have held
my sense of humor or is it depression or mental disease. I feel like
shit all the time but put on a forced smile.
Is it me? I feel alone, no one understands what it is I am going
through or does no one care. I don't know if this is how I should be
feeling at this stage of my disease. There is no one to talk to. At
this point I don't know if the depression is making me sick. Or is my
sickness is making me depressed. Or is there another diagnosis still to
be uncovered.
I do have a sense of humor in public. But alone I am Jello Am I alone
in these feelings?
| |
|
| Harold,
First off, what you are feeling, this depressed all time type of
feeling, is a common occurance in patients that have chronic conditions,
at least in the beginning. It will take some work, but you can get past
this.
In all likelyhood, the problems you have had with your blood pressure
are the cause of your diminished kidney function. Keeping your blood
pressure under strict control is your best bet to extend your kidneys'
life. Your doctor says your pre-dialysis, and I am guessing that he
told you there is a magic number to start dialysis. For the most part,
numbers do play a role in determining when to start, but how the patient
feels and functions from day to day also is a consideration. You said
you have been telling the doctor that you are doing well at the same
time you throwing up every day, which is a definite indicator that your
kidneys are not doing the job. You should tell the doctor this. He may
change his thought processes a bit. The exhaustion is also probably the
reduced kidney function, as you are probably anemic, which is a lower
than normal red blood cell count. This lowers the amount of oxygen that
your blood can carry to your cells, which is why you feel fatigued.
There are medications, such as Epogen and Procrit(actually the same
medicine under different brand names) that will help your boby to
produce more red blood cells, and thus help you to feel less fatigued.
This won't cure the fatigue, but it will reduce it.
As to you continuing to work, this is one of the best things you can do,
and for as long as you can. It keeps your mind occupied, so you have
less time to worry about what is happening with your health. Try to
keep it up.
You also said that you put up a front of a good sense of humor. This is
a tool you can use to help you get past the depression. You will find
as your life goes on that your true attitude towards what is going on
will affect how you will do physically. So if you have to get some
professional help, get it. If you are not comfortable with that, ask
your doctor if there is a patient who has adapted well and would be
willing to sort of mentor you, or at least give you somebody to talk to.
Sometimes, just getting your frustrations off your chest makes all the
difference.
Now for a word about the transplant option. In most places, you are
going to wait for a kidney to become available, perhaps for years.
Unless of course you have a living donor. The time on the list varies
from person to person and from location to location. Your local
transplant center should have info on this. Next point. Transplant is
not a cure. For the most part, you will outlive a transplant, unless you
are advanced in age when you get it. There have been transplants that
have last 30 or more years, but if you live long enough, they will all
fail evntually. For the most part, most people feel pretty good with a
transplant. Most people also must take many medications. You take
medicine to protect the kidney, Immunosuppressants. These have side
effects, which vary from patient to patient and even from transplant to
transplant in the same patient. One side effect that is inevitable is
that the Immuno drugs do damage to the kidney, although usually at such
a slow rate that it is almost undetectable. Many of these side effects
require medication, which in turn can lead to more side effects. You
need to look at is a each change that occurs is a small hurdle to get
over, or at least to adapt to. A transplant requires very diligent
attention to taking your medication in the prescribed amounts and at the
required times. It also requires that the patient learn as much about
their body and keep track and respond to even small changes in the way
one feels.
On the whole, I would opt for transplant ( I've had 2) if available.
Also, once you get on the list, go about your life as if it may not
come, as it very well may not. Work to get yourself into the best
physical shape you can, as this will help you to cope better with little
problems that are going to occur. Worying about when the call is going
to come will only lead to you going crazy.
Next thing. You don't want to go on dialysis. This is a normal
response. Who does. You will, however, likely have to at some point.
My suggestion here is to start now to learn as much as you can about the
different options. The more you know before you have to do it, the
better time you will have adjusting to it.
Well, have to go now, time for treatment.
Send more messages. I will try to answer your questions, or just for
somebody to talk to.
Dave
19 years with ESRD.
| |
| Jason Johnson 2006-07-11, 9:28 pm |
| In article <Xns97FDB886F34D9Somebobysomeplacecom@66.150.105.230>, Dave
<Someboby@someplace.com> wrote:
Harold,
First off, what you are feeling, this depressed all time type of
feeling, is a common occurance in patients that have chronic conditions,
at least in the beginning. It will take some work, but you can get past
this.
In all likelyhood, the problems you have had with your blood pressure
are the cause of your diminished kidney function. Keeping your blood
pressure under strict control is your best bet to extend your kidneys'
life. Your doctor says your pre-dialysis, and I am guessing that he
told you there is a magic number to start dialysis. For the most part,
numbers do play a role in determining when to start, but how the patient
feels and functions from day to day also is a consideration. You said
you have been telling the doctor that you are doing well at the same
time you throwing up every day, which is a definite indicator that your
kidneys are not doing the job. You should tell the doctor this. He may
change his thought processes a bit. The exhaustion is also probably the
reduced kidney function, as you are probably anemic, which is a lower
than normal red blood cell count. This lowers the amount of oxygen that
your blood can carry to your cells, which is why you feel fatigued.
There are medications, such as Epogen and Procrit(actually the same
medicine under different brand names) that will help your boby to
produce more red blood cells, and thus help you to feel less fatigued.
This won't cure the fatigue, but it will reduce it.
As to you continuing to work, this is one of the best things you can do,
and for as long as you can. It keeps your mind occupied, so you have
less time to worry about what is happening with your health. Try to
keep it up.
You also said that you put up a front of a good sense of humor. This is
a tool you can use to help you get past the depression. You will find
as your life goes on that your true attitude towards what is going on
will affect how you will do physically. So if you have to get some
professional help, get it. If you are not comfortable with that, ask
your doctor if there is a patient who has adapted well and would be
willing to sort of mentor you, or at least give you somebody to talk to.
Sometimes, just getting your frustrations off your chest makes all the
difference.
Now for a word about the transplant option. In most places, you are
going to wait for a kidney to become available, perhaps for years.
Unless of course you have a living donor. The time on the list varies
from person to person and from location to location. Your local
transplant center should have info on this. Next point. Transplant is
not a cure. For the most part, you will outlive a transplant, unless you
are advanced in age when you get it. There have been transplants that
have last 30 or more years, but if you live long enough, they will all
fail evntually. For the most part, most people feel pretty good with a
transplant. Most people also must take many medications. You take
medicine to protect the kidney, Immunosuppressants. These have side
effects, which vary from patient to patient and even from transplant to
transplant in the same patient. One side effect that is inevitable is
that the Immuno drugs do damage to the kidney, although usually at such
a slow rate that it is almost undetectable. Many of these side effects
require medication, which in turn can lead to more side effects. You
need to look at is a each change that occurs is a small hurdle to get
over, or at least to adapt to. A transplant requires very diligent
attention to taking your medication in the prescribed amounts and at the
required times. It also requires that the patient learn as much about
their body and keep track and respond to even small changes in the way
one feels.
On the whole, I would opt for transplant ( I've had 2) if available.
Also, once you get on the list, go about your life as if it may not
come, as it very well may not. Work to get yourself into the best
physical shape you can, as this will help you to cope better with little
problems that are going to occur. Worying about when the call is going
to come will only lead to you going crazy.
Next thing. You don't want to go on dialysis. This is a normal
response. Who does. You will, however, likely have to at some point.
My suggestion here is to start now to learn as much as you can about the
different options. The more you know before you have to do it, the
better time you will have adjusting to it.
Well, have to go now, time for treatment.
Send more messages. I will try to answer your questions, or just for
somebody to talk to.
Dave
19 years with ESRD.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dave,
EXCELLENT POST. Keep up the great work.
This message is for the original poster:
I suggest that you read this book:
COPING WITH KIDNEY DISEASE--A 12 STEP PROGRAM TO HELP YOU AVOID DIALYSIS"
by Mackenzie Walser, M.D. (nephrologist and professor at a medical college).
I wish you well and my prayers are with Dave and yourself.
Jason
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
| |
| Charles Torrisi 2006-07-12, 2:25 am |
| Alot of those feeling you are having are real, and no you are not alone.
However, you should be telling the doctor how you are feeling, but
anyway, the blood tests will tell him also.
My son just went on dialysis in April and up until then, his creatinine
level was at nine, and he was exhausted all the time. He works until 3
in the afternoon, and after coming home to cut the lawn or do other
chores, he would have to take a nap. He had gotten so anemic and
nauseous also and what happened is that the impurities that were
supposed to be rid of through the kidneys were toxic in his blood, and
the nutrients that were supposd to be processed by his blood, were being
wasted by kidney malfunction. Its not a good thing for the rest of the
body to be denied these nutrients and more problems can occur.
Anyway, since he has been on dialysis since April, his color has come
back, he feels good, he is not tired, nauseous, has a much higher level
of energy, and working and doing his chores around the house without
stopping to take a rest.
Granted he has to go three times a week for four hours at a time, but he
gives up 12 hours, to gain 156 hours a week back. His attitude is good,
he has trust in his doctor, and is on the transplant listorll be on it
when he makes his final appointment in August. They are saying a 3-5
year wait.
Try not to be discouraged as best you can. Its is not definitely an
easy thing to think about, but your family and friends the support group
right here is here to help. Ange
Have a great day!!
| |
|
| In article <1152652905.564701.252700@m73g2000cwd.googlegroups.com>,
"Harold" <Harold@trycotool.com> wrote:
> Is it me? I feel alone, no one understands what it is I am going
> through or does no one care. I don't know if this is how I should be
> feeling at this stage of my disease.
You're not alone. I have FSGS, am nephrotic and am stage 2/3 kidney
failure. I also have a diagnosis of very early diabetic nephropathy and
minimal change disease as well as massive scarring from a
chronic/recurrent kidney infection, which is probably what has put me at
at the level of failure I'm at now (I'm borderline between 2 and 3 - my
serum creatinine is still good, but my GFR is bad and my proteinuria is
horrific).
What's odd about me is that I was dx'd with FSGS in my mid 30s and I've
had very *low* blood pressure (still do) and I'm female. FSGS is usually
found in men with high blood pressure. Then again, I'm a consective
stone former, which is usually also found in men.
I tire very, very easily and the proteinuria makes me prone to serious
infections (I'm still recovering from another bout of cellulitis, fun
*and* attractive). I have the edema associated with nephrotic syndrome,
and my hair is falling out, but aside from that, I don't "look sick"
which does have its upside.
I was never on steroids - I became diabetic after a course for asthma,
and my proteinuria was already nephrotic range when I was dx'd, but I am
on ARBs, 120mg Lasix and Lopid to address the kidney issues.
Unfortunately, FSGS does not respond well to any treatment.
I am not on a list yet - as I said, my serum creatinine is actually
pretty good, it's the other stuff that sucks - but I'm B- so I wonder if
getting on the list would do any good or not!
As for getting depressed about it - it's hard not to sometimes feel
oppresed by a disease there's no treatment for, that has a pretty
certain outcome, and that you're not in control of. I'm usually pretty
morbid when I get bad news, but I try to get over it; I realize that
yes, this sucks for me, but it could be so much worse (this advice is
not recommended for anyone else - just me).
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
| Harold 2006-07-13, 9:25 pm |
| REP wrote:
> In article <1152652905.564701.252700@m73g2000cwd.googlegroups.com>,
> "Harold" <Harold@trycotool.com> wrote:
>
>
> You're not alone. I have FSGS, am nephrotic and am stage 2/3 kidney
> failure. I also have a diagnosis of very early diabetic nephropathy and
> minimal change disease as well as massive scarring from a
> chronic/recurrent kidney infection, which is probably what has put me at
> at the level of failure I'm at now (I'm borderline between 2 and 3 - my
> serum creatinine is still good, but my GFR is bad and my proteinuria is
> horrific).
>
> What's odd about me is that I was dx'd with FSGS in my mid 30s and I've
> had very *low* blood pressure (still do) and I'm female. FSGS is usually
> found in men with high blood pressure. Then again, I'm a consective
> stone former, which is usually also found in men.
>
> I tire very, very easily and the proteinuria makes me prone to serious
> infections (I'm still recovering from another bout of cellulitis, fun
> *and* attractive). I have the edema associated with nephrotic syndrome,
> and my hair is falling out, but aside from that, I don't "look sick"
> which does have its upside.
>
> I was never on steroids - I became diabetic after a course for asthma,
> and my proteinuria was already nephrotic range when I was dx'd, but I am
> on ARBs, 120mg Lasix and Lopid to address the kidney issues.
> Unfortunately, FSGS does not respond well to any treatment.
>
> I am not on a list yet - as I said, my serum creatinine is actually
> pretty good, it's the other stuff that sucks - but I'm B- so I wonder if
> getting on the list would do any good or not!
>
> As for getting depressed about it - it's hard not to sometimes feel
> oppresed by a disease there's no treatment for, that has a pretty
> certain outcome, and that you're not in control of. I'm usually pretty
> morbid when I get bad news, but I try to get over it; I realize that
> yes, this sucks for me, but it could be so much worse (this advice is
> not recommended for anyone else - just me).
>
> --
> "Did Father shoot him? I will eat Grandfather for dinner."
> - Helen Keller, on learning of the death of her grandfather
Thanks for the reply! I felt much better after posting for help.
However your responce was more then clinical. The touch of humor
between the lines made it personnel. I have needed to vent for some
time now with out a way to do that until now.
After reeding some of the responces to the posted topics I see there
are actors and there players. To the actor, Live life for yourself.
Some of us would love to have one of your days. This was not ment for
you REP.
| |
| daniel.granot@gmail.com 2006-07-14, 4:27 pm |
|
Yeah, it's not easy.
I am 32 years old and have had renal failure for thirty of those years.
I have had two transplants in those years and when the first one
failed, I had to battle depression for two years.
When the last transplant failed I decided to ask myself what I wanted
out of life with or wothout a functioning kidney and then I asked
myself what I had to do to achieve it.
I came to the conclusion that I still wanted to be independent, full of
energy, happy and looking forward to life.
I looked around me at all the other patients and realised that in order
to do so I would have to OWN my illness and as many aspects of it as
possible.
One thing I have also learnt is to call this problem of mine the friend
I have to tolerate regardless of how much of a pain he is.
People ask me how I deal with regular dialysis taking so much time out
of myn life. Simple. We all go to the toilet, go to bed to sleep,
shower, brush our teeth. Well I have one more thing to do on top of all
of this - dialysis.
Your life is your own. You have to decide for yourself how much of it
you want to own. This doesn't mean things will get easier, but it does
mean that you will get more out of life.
Good luck and feel free to drop me a line.
Harold wrote:
> Ten years ago the doctor said I have high blood pressure. Take these
> pills or die! Today I take 5 pills but the pressure is 120 / 80. Eight
> years ago I get a call I have been refused life insurance because of a
> high protean count. A biopsy and 2 pints of blood later I have FSGS.
>
> But I am pre dialysis; I have not hit the magic number yet! What ever
> that is? I am on the transplant list, but they tell me it may be years
> before a kidney becomes available. I am exhausted all the time, half
> blind and going deaf. But the doctors tell me I am fine. I wake up
> every morning throwing up to start my day. I don't want work to know
> how I feel I need my job. Being an office manager helps. I tell my
> family I am doing fine. I tell the doctor all is ok, because I do not
> want to go on dialysis and I don't him to think I am making myself
> sick.
>
> Life is always different with FSGS every pill has a side effect worse
> then the one. The steroid faze was great, moon face and round, but I
> had great skin. The mood swings were worse then PMS so I was told. So
> don't tell me I don't understand a woman's problem. I have held
> my sense of humor or is it depression or mental disease. I feel like
> shit all the time but put on a forced smile.
>
> Is it me? I feel alone, no one understands what it is I am going
> through or does no one care. I don't know if this is how I should be
> feeling at this stage of my disease. There is no one to talk to. At
> this point I don't know if the depression is making me sick. Or is my
> sickness is making me depressed. Or is there another diagnosis still to
> be uncovered.
>
> I do have a sense of humor in public. But alone I am Jello Am I alone
> in these feelings?
| |
| Chuk Goodin 2006-07-25, 4:28 pm |
| On Wed, 12 Jul 2006 06:00:39 GMT, REP <rep@inanna.com> wrote:
>What's odd about me is that I was dx'd with FSGS in my mid 30s and I've
>had very *low* blood pressure (still do) and I'm female. FSGS is usually
>found in men with high blood pressure. Then again, I'm a consective
>stone former, which is usually also found in men.
I've been reading this group (mostly lurking as my daughter's been doing
reasonably well since her transplant) since 1998, and all this time I
thought you (REP) were male. (I think it was partly your mentions of FSGS
(which my daughter also had) and the stones).
--
chuk
| |
|
| In article <ea5jk8$9mc$1@morgoth.sfu.ca>, cgoodin@sfu.ca (Chuk Goodin)
wrote:
> On Wed, 12 Jul 2006 06:00:39 GMT, REP <rep@inanna.com> wrote:
>
> I've been reading this group (mostly lurking as my daughter's been doing
> reasonably well since her transplant) since 1998, and all this time I
> thought you (REP) were male. (I think it was partly your mentions of FSGS
> (which my daughter also had) and the stones).
Could be my x-face, could be my various diseases, could be the lack of
emoticons and other annoying crap in my posts... In real life, there's
absolutely no doubt what gender I am!
--
"Did Father shoot him? I will eat Grandfather for dinner."
- Helen Keller, on learning of the death of her grandfather
| |
|
|
Charles Torrisi wrote:
> Alot of those feeling you are having are real, and no you are not alone.
> However, you should be telling the doctor how you are feeling, but
> anyway, the blood tests will tell him also.
>
> My son just went on dialysis in April and up until then, his creatinine
> level was at nine, and he was exhausted all the time. He works until 3
> in the afternoon, and after coming home to cut the lawn or do other
> chores, he would have to take a nap. He had gotten so anemic and
> nauseous also and what happened is that the impurities that were
> supposed to be rid of through the kidneys were toxic in his blood, and
> the nutrients that were supposd to be processed by his blood, were being
> wasted by kidney malfunction. Its not a good thing for the rest of the
> body to be denied these nutrients and more problems can occur.
>
> Anyway, since he has been on dialysis since April, his color has come
> back, he feels good, he is not tired, nauseous, has a much higher level
> of energy, and working and doing his chores around the house without
> stopping to take a rest.
> Granted he has to go three times a week for four hours at a time, but he
> gives up 12 hours, to gain 156 hours a week back. His attitude is good,
> he has trust in his doctor, and is on the transplant listorll be on it
> when he makes his final appointment in August. They are saying a 3-5
> year wait.
>
> Try not to be discouraged as best you can. Its is not definitely an
> easy thing to think about, but your family and friends the support group
> right here is here to help. Ange
>
> Have a great day!!
| |
| nomorepeeing 2006-08-08, 4:29 pm |
| Hey Harold,
My name is Ron, and I live just north of Montreal. I was born with
polycystic kidney disease. My mom had it, 4or 5 of her siblings had
it, and the most depressing thingto me is that my 9 year old son has
been diagnosed with it. My mo has had a transplant, and I`m scheduled
for one as well. I`ll admit, I`m super lucky. My Brother has come
forward to donate one of his. Having said that, I do know where you`re
coming from.
By January of 2004, I was 285 pounds and eating myself into kidney
failure. I`d had many bouts of hematuria (cysts bleeding into my
bladder, thus causing me to urinate blood) and my creatinine was
steadily growing. Like yourself, thiswas causing me a great deal of
anxiety and depression. ( By the way, this is normal reaction. I found
out later once I spoke to a psychiatrist as part of the work up, your
illness is causing an imbalance in your brain chemicals causing these
reactions) To my friends and family, I looked as if everything was
peachy.
At this point, my nephrologist decided to send me for pre-dialysis work
up, including the installation of an av fistula. Shocked, and
saddened, I literally wept to my wife how afraid I was. Talking to
anyone else though... It was a fact of life. Dialysis was coming
sooner than I was expecting. I was 2 years into a very competitive job
and concerned about how things were going to go. Dr`s appointments,
and tests were taking me out of the workplace on a regular basis.
Great! Something else to worry about.
Fast forward to January of this year. My Doc tells me that my kidneys
have grown so big from the cysts that they one or both need to be
removed. Fun times. I was scheduled for mid march. The 13th to be
exact. And I`ve been on dialysis ever since. And will be until next
month when my brother kindly donates one of his.
According to my wife, I was close to lights out just after my
operation. It was long road coming back. I spent my 34th birthday
shuffling around the hospital. Dialysis wasn`t always easy, but it
became it after a while. Especially if the nurses there are as awesome
as the ones in the unit where I am. Trust me when I say that you
really do feel better when all the shit your kidneys were supposed to
filter actually is removed frm your system. My red blood cell count is
way up to normal or near normal levels now ( It was at 43 at one point;
137 as of my last blood test). With regular exercise, it`s easier than
you think to control my fluids, and with a modified diet of course, I
feel fantastik. I`m on the blood pressure meds as well, but the
exercise is helping there as well. As I write this to you, I`ve just
returned from a approximately 60 km ( just under 40 miles) bike ride.
Like I said, it`s was a long road back. If you would like more
details, check out www.ronpinard.com. There is no advertisements or pop
ups to contend with. It`s a website that my buddy made me for my
birthday that my wife and I used to communicate with all my friends and
family about how I was doing. It turned out to be super therapeutic
just to be able to rant like hell when I was frustrated. And besides,
you`ll be amazed by how much people do really care. Some days I look
back at the comments of the emails I`ve received from people, just to
make myself feel better. If you need to talk, or just want to drop me
a line bitching about whatever, please do so. This whole experience
has changed my life drastically. Believe it or not though, for the
better. If there is anyway I can help, I`ll gladly do so. I had a
complete stranger give me a few words of encouragement, and it made a
world of difference. I`m just paying it forward.
Wow, I`ve really let loose here. Do the same man. It feels good to
try and help.
Ciao for now,
Ron.
Harold wrote:
> Ten years ago the doctor said I have high blood pressure. Take these
> pills or die! Today I take 5 pills but the pressure is 120 / 80. Eight
> years ago I get a call I have been refused life insurance because of a
> high protean count. A biopsy and 2 pints of blood later I have FSGS.
>
> But I am pre dialysis; I have not hit the magic number yet! What ever
> that is? I am on the transplant list, but they tell me it may be years
> before a kidney becomes available. I am exhausted all the time, half
> blind and going deaf. But the doctors tell me I am fine. I wake up
> every morning throwing up to start my day. I don't want work to know
> how I feel I need my job. Being an office manager helps. I tell my
> family I am doing fine. I tell the doctor all is ok, because I do not
> want to go on dialysis and I don't him to think I am making myself
> sick.
>
> Life is always different with FSGS every pill has a side effect worse
> then the one. The steroid faze was great, moon face and round, but I
> had great skin. The mood swings were worse then PMS so I was told. So
> don't tell me I don't understand a woman's problem. I have held
> my sense of humor or is it depression or mental disease. I feel like
> shit all the time but put on a forced smile.
>
> Is it me? I feel alone, no one understands what it is I am going
> through or does no one care. I don't know if this is how I should be
> feeling at this stage of my disease. There is no one to talk to. At
> this point I don't know if the depression is making me sick. Or is my
> sickness is making me depressed. Or is there another diagnosis still to
> be uncovered.
>
> I do have a sense of humor in public. But alone I am Jello Am I alone
> in these feelings?
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| Paul Bartram 2006-08-08, 9:28 pm |
|
> "nomorepeeing" <ronpinard@hotmail.com> wrote
(Apologies for all the snips, but it was a long message!)
> My name is Ron, and I live just north of Montreal ... By January of 2004,
I was 285 pounds and eating myself into kidney failure.
Not to mention a heart attack - that is one heap of flab to live with.
> As I write this to you, I`ve just returned from a approximately 60 km (
just under 40 miles) bike ride.
So obviously, you've overcome the weight problem, good for you. Amazing what
the human body can tolerate, when you see those before and after ads on TV!
I also cycle, but Brisbane is a lot hillier than Montreal so I can only
manage about 20Km at a time.
>With regular exercise, it`s easier than you think to control my fluids, and
with a modified diet of course, I feel fantastik. I`m on the blood pressure
meds as well, but the exercise is helping there as well.
Your experience is probably similar to mine, that when on dialysis you tend
not to sweat as much as a 'healthy' person (and I live in a very humid
climate.) Yet regular exercise - cycling and bushwalking - makes a huge
difference to my fluid retention. I have no idea where it goes, but it does!
With the blood pressure, I guess you have to avoid really 'pushing' it by
struggling up steep hills (I just take my time) but yes, the exercise
definitely has a good effect on overall BP.
> Dialysis wasn`t always easy, but it became it after a while.
It did for me too, until they told me I was off the transplant list (heart
problems), then I had a long period of 'why bother carrying on? I still feel
a bit that way, but am shortly moving to a smaller centre closer to the
bush and beach (and a lot cheaper!) and hopefully that will give me a
psychological boost.
> Especially if the nurses there are as awesome as the ones in the unit
where I am.
That is VERY important. I've come across only a few where I wondered 'why
did you choose to be a nurse?' but generally renal nurses are terrific.
> Trust me when I say that you really do feel better when all the shit your
kidneys were supposed to filter actually is removed frm your system.
Overall, yeas, but when I go on the machine I feel pretty good, but when I
come off I feel like a sack of spuds. Others (some a lot older than me) seem
to bounce out of the ward. It must just be me!
>This whole experience has changed my life drastically. Believe it or not
though, for the better.
Wish I could say the same <sigh>.
> Wow, I`ve really let loose here. Do the same man. It feels good to try
and help.
I've found this ng very informative and inspiring. As they said on the X
Files, "We Are Not Alone..."
Paul
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|
| Paul,
If you are truly feeling horrible after treatment, talk to your doctor
about maybe changing your dry weight a little. I say talk to the doctor
because there are a lot of considerations to whether this is a doable
idea.
What I am suggesting is that maybe your blood pressure is dropping too
far at the end of your treatment. This will make you feel weak, light
headed and maybe even a bit fuzzy in the head. This is not entirely
unusual. What I figured out for me is that raising my Dry Weight by 0.5
KG will raise my final treatment blood pressure back close to 100/??,
thus eliminating many of the problems I described. This has to be
monitored closely, you don't want to go the other direction, where you
are having difficulty breathing from too much fluid when you arrive for
treatment.
If low blood pressure at treatment end is the problem, another source
can be Blood pressure medication. Some patients run High Blood Pressure
betwen treatments and take medication for this. In some cases they take
the medicine before treatment, which forces the blood pressure down too
far. I have seen this dealt with by not taking the medicine on
treatment days.
Some other people experience problems like you describe because they
cannot take off the amount of fluid they put on. There is a limit to
how much these patients can tolerate taking off in one treatment. The
only solution for this case is to just cut down on the fluid intake. A
tough job I know, but necessary.
The thing to remember is that you can control how you feel, but you have
to figure out why you don't feel well before you can come to a solution.
I have been on Dialysis or transplant for 19+ years now, and I have seen
or experienced an awful lot. From my observations, there is almost
never a situation that can't be overcome, although the sacrifice needed
may be more than some are willing to give.
As you can see from my comments, I am of the opinion that all patients
should be able to get to a position where they are stable and feeling
generally well. There will always be ups and downs when you have ESRD,
whether you are on dialysis or have a transplant, you just have to learn
to fight through the difficulties.
As I have stated prior, I am not a doctor. I am a well versed patient
who has studied the history of dialysis as a way to help me cope with
the whole situation. I keep up with the newest developments, and pass
on information when I feel it is appropriate. As has been said by
others in this group, venting on a group like this is a good way to help
yourself. Getting your gripes off your chest will lower your stress
levels very well. Keep posting. Somebody will answer your questions or
lend support when you need it.
Dave
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| Paul Bartram 2006-08-10, 2:32 am |
|
"Dave" <Someboby@someplace.com> wrote
> If you are truly feeling horrible after treatment, talk to your doctor
> about maybe changing your dry weight a little. I say talk to the doctor
> because there are a lot of considerations to whether this is a doable
> idea.
90% of discussions on this subject I have are with nurses. In the public
system I'm in I find opportunities to talk to honest-to-goodness doctors are
rare - maybe once every 3 months, and it seems to be a different one every
time. As it happens, I saw one yesterday. She was the first one to take my
comments about how I feel after dialysis seriously, and as you suggested
further into your reply, she re-prescribed a BP drug (for non-dialysis days)
that had previously withdrawn, and my 'ideal weight' will be reassessed over
the next few sessions.
> What I am suggesting is that maybe your blood pressure is dropping too
> far at the end of your treatment. This will make you feel weak, light
> headed and maybe even a bit fuzzy in the head.
Oh yeah, been there, suffered that, and I've got very good at judging when
my pressure is starting to drop, usually 30-40 minutes before the end of a
session - I start yawning my head off! Sometimes though I come off with
quite high BP yet still feel like 3 miles of bad road.
> What I figured out for me is that raising my Dry Weight by 0.5
> KG will raise my final treatment blood pressure back close to 100/??,
> thus eliminating many of the problems I described.
It is a real balancing act, because if you feel better you exercise more and
therefore loose body weight. My 'dry weight' keeps oscillating between 70.5
and 71 Kg, and sometimes I have to 'put my case' to the nurse setting the
machine to make sure they use the right one.
> Some other people experience problems like you describe because they
> cannot take off the amount of fluid they put on. There is a limit to
> how much these patients can tolerate taking off in one treatment. The
> only solution for this case is to just cut down on the fluid intake. A
> tough job I know, but necessary.
My limit is 3 litres. It is written, and I don't allow anybody to dial in
more because I know without a doubt that I'll end up on the floor with a
saline drip in my arm. Of course by then the person that set the machine up
has gone home! On fluid intake, again it seems to depend on your activity.
If I go bushwalking on a warm day (which is most of 'em around here) I'll
drink half a 300ml bottle of water on the walk plus to cups of tea in the
car afterwards, plus maybe another when I get home. If I have a quiet day at
home, I have little difficulty keeping the intake down a lot further, yet in
both cases my weight gain is the same. I guess sweating and increased urine
output when exercising makes the difference.
> I have been on Dialysis or transplant for 19+ years now, and I have seen
> or experienced an awful lot. From my observations, there is almost
> never a situation that can't be overcome, although the sacrifice needed
> may be more than some are willing to give.
Yes, there is a lot of psychology involved, it's as much in the head as the
body. You have to *want* to keep going. I've only been on PD / HD for less
than two years yet already I've forgotten what it feels like to be fit and
well. If I'm still here after 19 years, I hope I still come across as
positive as you do!
> As you can see from my comments, I am of the opinion that all patients
> should be able to get to a position where they are stable and feeling
> generally well. There will always be ups and downs when you have ESRD,
> whether you are on dialysis or have a transplant, you just have to learn
> to fight through the difficulties.
No choice, you're right...
> As has been said by
> others in this group, venting on a group like this is a good way to help
> yourself. Getting your gripes off your chest will lower your stress
> levels very well. Keep posting. Somebody will answer your questions or
> lend support when you need it.
I spend more time on newsgroups than on the web, and was a prolific writer
before I became ill and discovered ASK-F, so I'm happy to exchange views
with others going through the same trials as me. It's a bit like Star Trek
fans, we're a special breed and 'outsiders' don't really understand us (I'm
not a Trekkie, BTW!)
Paul
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| Charles Torrisi 2006-08-10, 8:32 am |
| Hi Ron, So inspired by your email and I'm that you are doing so well.
Its important to keep your mental attitude, because it will definitely
help your physical being as well. As I said before, we have polycystic
kidney disease also in our family, and my son is the one going right by
the book, is 49, and is on dialysis three times a week. He has never
felt so well, because as you said the toxins are not being recycled as
they are normally, and his blood is being cleansed of all those
poisons and put back into his system. He went for is last exam before
getting on the list, but now they are checking for hepatitis, as he had
9 blood transfusions for another problem back in 83. I'm the one, his
mother,who passed it on to him , as I got it from my father, and the
list goes on. As for me, I am going to see my doctor tomorrow, and not
looking foward to it. My creatinine is climbing at a slow rate and they
tell me I'm a stage 3. not good. Anyway, when I see my son, and hear
your story, I am inspired., so I hope when the the time comes, I can be
as positive as what I am hearing. Good luck. Ange
Have a great day!!
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| Paul,
I have the fluctuating dry weight problem as well. With my years of
observing my own physical changes, I have become very good at figuring
out what I have to set the machine for. I make the decision to change
my dry weight, and i always tell the nurse what my goal is for the day.
I can usually tell from my standing blood pressure prior to treatment
just how far I may go. The doctor makes the "official" change in dry
weight once we have agreed that it has stabalized. My dry weight
fluctuates between 84.5 to 88 KG. Most of the difference tends to be
fluctuations in my eating habits, although getting an illness that
causes me to lose my appetite tends to cause larger weight loses as
would be expected.
I too can tell when I am about to crash, also with the yawning. It is a
sure sign that not enough oxygen is getting to your brain, which is what
happens when your blood pressure is low.
Since May of 2005, I have had far less difficulties along these lines.
That is when I started Nocturnal Dialysis. I go into the unit at 7:00
PM or so, and I am on the machine until about 3:00 AM. The 8 hour
treatment is done with 400 cc blood flows, a little lower than the
normal 500 blood flow rate. The other difference is the higher
potassium, higher calcium bath. While Nocturnal has been done for years
in other places, it is usually done with much lower blood flow rates,
usually around 250. Using the 400 blood flow rate, i get almost twice
the actual dialysis. My KT/V value, the US measure of adequete
dialysis, is now above 3.00, compared to about 1.3 on daytime
treatments. My recovery time after treatments is down to minutes
compared to hours on days, phosphate removal rates with the longer
treatment are so high that I don't have to take binders at all, and in
fact have to eat more phosphate in my diet to keep it up to minimum
standards. This is my response, but most people have better results
compared to days. Patients who use catheters or are of a larger body
size also seem to benefit as well, as they tend to not get sufficient
treatments on daytime treatments. They need they extended treatment
time just to get adequete treatments. If this fowm of treatment is
available in your area, you may want to look into it. I don't know
about Australia, but this form of treatment is becoming more available
(slowly) in the US. Not every patient likes it, but most see the
benefit in a short time.
You said your max removal is 3 liters. Fortunately I can tolerate much
more, although I seldom go over 4.5 KG (for those in the US who do not
know, 1 liter of water has a mass of 1 KG, hence my using them
interchangeably. I know this is not strictly correct to do, but it is
commonly done in the US by those educated in the metric system here.
Sorry if it offends those in other parts of the world). I have found
that if I can put it on, I can take it off. What matters with me most
is that I don't go below my dry weight.
Even though it makes it more difficult to control your fluid intake, you
should continue to get as much exercise as you can tolerate. The better
your physical shape, the easier it will be to bounce back when you run
into difficulties. I ride the stationary bike in my home three times a
week, usually whiile I watch the game (baseball, football or basketball)
or car race (any kind). I usually do about an hours worth of riding on
a resistance level of 1 or 2 at a rate of 15 - 20 miles per hour. This
allows me to work up a really good sweat, and I always sleep very well
on workout days. I also usually do about 10 miles on Saturday on the
treadmill in the winter, on the boardwalk along the shore here in the
summer, spring and fall. All of this while running my own business that
has me on the go all time, plus dialysis. It's all willpower. All this
exercise does have its benefit, I can eat much more, which is one of my
favorite things to do, without gaining any weight. As to the increased
fluid needs while exercising, after a short time, I figured out just how
far I could push the intake without getting into trouble fluidwise. It
takes trial and error to do this.
The main point of all this is that you need to learn as much as you can
about how YOU respond to whatever changes occur in your situation so
that you can take charge of your own care. Nobody tells me what to do.
The docs give me the options, and I make the choice along with them. And
believe it or not, the staff actually appreciates the patient that knows
enough about themselves and their care to participate in their own care.
It can relieve the load on them, and can lead to a healthier patient
overall. It is how I have survived this long, and in such a condition
that nobody who doesn't know me well even has a clue that I have this
condition. After all, I am a person first and a person who has kidney
disease second. I don't let the disease define me. I don't hide the
fact that I have to go to treatments three times a week, and I don't try
to flaunt it for the attention either. All I know is the trials and
tribulations of 19 years of this has made me a better, emotionally
stronger person. So I would encourage you to take the reins and move
forward.
Well, I've ran on for way too long, time to go. I look forward to
continuing to express my opinions and supplying my knowledge and
observations.
Have a god day, wherever you may be.
Dave
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