Re: 2 years today

[Guest guest]

Hi Pierre,

What a great post! If you would have said it had been one year already, I

would not have been surprised. It hardly seems like 24 months have passed by

since you started dialysis. I have learned just so much from you, and you

certainly have helped to take the anxiety out of facing ESRD myself. You are

such a

great inspiration and example for taking it all in stride and being both

practical as well as accepting with a positive attitude and humor. Watching you

has given me such confidence as I am walking in those footsteps myself in the

coming months. You have given us all a great gift not only in these web sites,

but also in being so open and sharing your experience so we can all learn from

you.

But, now that you have taken the fear out of dialysis...I am ready for you to

move on and be another example of sailing through transplant! Soon Pierre,

so soon your kidney will come.

In a message dated 10/4/2004 8:58:15 AM Pacific Daylight Time,

pgl-groups@... writes:

> It's October 4. I started dialysis (hemo in my case) exactly 2 years ago

> today. Hard to believe it's been that long already.

>

> For those who might be interested, and to dispel some common myths about

> dialysis, I still urinate pretty much the same amount I did when I started

> (not a normal amount, but enough that I can drink an extra half litre of

> fluid a day - and believe me, this means A LOT to a dialysis patient). I

> also eat virtually the same as I did before on my pre-dialysis renal diet,

> except that I have to eat twice as much protein (for my weight, 6 oz of meat

> or equivalent per day). I was recently told I could eat more potassium. How

> much? Well, they don't tell you exactly, only in general terms, like one

> more medium to high potassium fruit per day. For example, my dietician said

> I could probably eat a tomato sandwich, or have half a banana, or that kind

> of thing, without any problem. One thing I notice though is the effect

> sodium has. If I eat more than I should, I weigh more when i get to

> dialysis. That means they have that much more fluid to take off, and that

> can mean cramps. So, I watch the sodium, and I avoid all I can. Generally,

> for me, as long as I have no more than 3 kg to take off, I have no cramping.

> I usually gain about 1.5 to 2 litres from one dialysis treatment to the

> next, so it's not a problem.

>

> For me, I find that what most affects how I feel in between treatments is

> phosphorus. If I eat too many high phosphorus foods like cheese, I feel

> really crappy.

>

> Touch wood, I've never had any kind of infection, and my fistula works

> better now than it did when I started. They do a transonic measurement once

> a month at dialysis with a special machine. Mine was just this past

> Thursday, and it showed as good a flow as you can get.

>

> In the two years, needles have never been a problem. At first, the nurses

> just sprayed a numbing solution on the site before inserting the needles.

> That deadened most of the feel. Then I started buying and using Emla cream

> for the same purpose. That deadened the feeling so completely that if I

> didn't look, I wouldn't even know the needle was in. After the first year, I

> stopped using anything. The nerves deaden themselves after a while, but

> sometimes, there's just a slight momentary sting as the needle pierces the

> skin - just enough to say " Ouch! " , but nothing serious, really. A skin prick

> to check blood sugar probably hurts more.

>

> In the two years, I only bled twice. The first time, it was about 6 months

> into dialysis, when, I started dripping blood from under the bandages as I

> walked to the scale to weigh myself after getting off the machine. It only

> happened that one time, and it was a pretty minor thing. All I had to do was

> to sit and hold the site for another 10 minutes, and then no problem. I've

> always driven myself home after dialysis, and while I always keep a bandage

> kit under my seat, I've never had to use it. I usually drive with my

> dialysis arm and hold my usual after dialysis Tim Horton's coffee with the

> other hand, and steering has never caused the sites to bleed (I used to

> often put the coffee between my legs as drove, but I've stopped doing that

> since 's experience).

>

> The other time was when unknown to me, the bandage around my wrist during

> dialysis that keeps the lines in place became undone as I slept, and then,

> near the end of my treatment, as I sat back up (raised up the lazyboy chair

> in other words), the arterial line got caught in the side of the chair, and

> as I sat up suddenly, the arterial needle pulled right out. I just put my

> finger on the site to stop it from bleeding and the nurses quickly took care

> of it.

>

> In terms of the actual needling, it can happen occasionally that the nurse

> accidentally punctures through the other side of the vein. This is called

> " infiltration " . This only happened to me twice the first year. It's not a

> big deal. Your fistula doesn't " blow up " or anything. It just means that you

> have to hold it for 10-15 minutes, and then they re-needle you in another

> spot. They put ice on it to minimize any black and blue bruising that

> usually is seen the next day.

>

> I have never had low blood pressure to a degree that it would be a problem.

> At first, I did have some episodes of mild chest pain, but further

> investigation revealed that it was digestive in nature. I just religiously

> make sure I take my Pantoloc (pantoprazole, similar to Prilosec, Prevacic,

> etc.) daily as prescribed, and if I should get heartburn during dialysis, I

> take a TUMS or two. At one point, I would get irregular heartbeats. The

> first time, they sent me to emerg as a precaution. There, they took an EKG

> and they put me on a heart monitor. No problems. It turned out that it was

> because the nurses were pushing it a little with trying for the highest flow

> possible on dialysis. Now, I don't go above 400 (still a very good flow),

> and I have no problems.

>

> There were some changes after I first started dialysis. For example, my

> dialysis prescription with regards to potassium concentration and

> bicarbonate during dialysis was changed to reflect my needs better. The

> first month, I would get tingling in my body nearing the end of dialysis

> (about with a half hour remaining), but the changes in potassium and bicard

> fixed that. The bicard regulates how acidic your blood is. It can't be too

> high nor too low.

>

> My dry weight target is 56kg, the same as the one I started out with on the

> very first day. Since then, we've gone up to 56.6kg, and down to as low as

> 55.5, but 56 seems to be good. It's not absolutely exact anyway, because

> when they take you off, they rince back as much of your blood as they can

> from the artificial kidney and the lines, by pushing saline solution into

> the lines. This adds about 0.5 litres (same as 0.5 kg of weight) to you, but

> they take this into account when they set the machine for amount of fluid to

> remove at the start. But most times, at least in my case, it takes less than

> 0.5 litres to rince back the blood, so I usually end up a little under my

> dry weight, like 55.8 or so instead of 56 exactly.

>

> All in all, it's been very tolerable, but certainly time-consuming. I sure

> will be glad when my beeper goes off though. However, the next time, I don't

> think I will get as excited as I was when they called me in as a backup.

> I'll wait until they are actually wheeling me into the operating room :-)

> ... well, maybe when they start shaving me and when they start the big IV

> prednisone dose...

>

> All of the people I became acquainted with when I started dialysis 2 years

> ago are still there except one who died of something totally unrelated to

> being on dialysis. A number have had a kidney transplant since then, of

> course.

>

> Pierre

>

[Guest guest]

Pierre,

Thanks for the info. I can't believe it's been 2 years you've been on dialysis!

It's encouraging that you're doing so well on dialysis.

Thanks again for the post!

~Dana

2 years today

It's October 4. I started dialysis (hemo in my case) exactly 2 years ago

today. Hard to believe it's been that long already.

For those who might be interested, and to dispel some common myths about

dialysis, I still urinate pretty much the same amount I did when I started

(not a normal amount, but enough that I can drink an extra half litre of

fluid a day - and believe me, this means A LOT to a dialysis patient). I

also eat virtually the same as I did before on my pre-dialysis renal diet,

except that I have to eat twice as much protein (for my weight, 6 oz of meat

or equivalent per day). I was recently told I could eat more potassium. How

much? Well, they don't tell you exactly, only in general terms, like one

more medium to high potassium fruit per day. For example, my dietician said

I could probably eat a tomato sandwich, or have half a banana, or that kind

of thing, without any problem. One thing I notice though is the effect

sodium has. If I eat more than I should, I weigh more when i get to

dialysis. That means they have that much more fluid to take off, and that

can mean cramps. So, I watch the sodium, and I avoid all I can. Generally,

for me, as long as I have no more than 3 kg to take off, I have no cramping.

I usually gain about 1.5 to 2 litres from one dialysis treatment to the

next, so it's not a problem.

For me, I find that what most affects how I feel in between treatments is

phosphorus. If I eat too many high phosphorus foods like cheese, I feel

really crappy.

Touch wood, I've never had any kind of infection, and my fistula works

better now than it did when I started. They do a transonic measurement once

a month at dialysis with a special machine. Mine was just this past

Thursday, and it showed as good a flow as you can get.

In the two years, needles have never been a problem. At first, the nurses

just sprayed a numbing solution on the site before inserting the needles.

That deadened most of the feel. Then I started buying and using Emla cream

for the same purpose. That deadened the feeling so completely that if I

didn't look, I wouldn't even know the needle was in. After the first year, I

stopped using anything. The nerves deaden themselves after a while, but

sometimes, there's just a slight momentary sting as the needle pierces the

skin - just enough to say " Ouch! " , but nothing serious, really. A skin prick

to check blood sugar probably hurts more.

In the two years, I only bled twice. The first time, it was about 6 months

into dialysis, when, I started dripping blood from under the bandages as I

walked to the scale to weigh myself after getting off the machine. It only

happened that one time, and it was a pretty minor thing. All I had to do was

to sit and hold the site for another 10 minutes, and then no problem. I've

always driven myself home after dialysis, and while I always keep a bandage

kit under my seat, I've never had to use it. I usually drive with my

dialysis arm and hold my usual after dialysis Tim Horton's coffee with the

other hand, and steering has never caused the sites to bleed (I used to

often put the coffee between my legs as drove, but I've stopped doing that

since 's experience).

The other time was when unknown to me, the bandage around my wrist during

dialysis that keeps the lines in place became undone as I slept, and then,

near the end of my treatment, as I sat back up (raised up the lazyboy chair

in other words), the arterial line got caught in the side of the chair, and

as I sat up suddenly, the arterial needle pulled right out. I just put my

finger on the site to stop it from bleeding and the nurses quickly took care

of it.

In terms of the actual needling, it can happen occasionally that the nurse

accidentally punctures through the other side of the vein. This is called

" infiltration " . This only happened to me twice the first year. It's not a

big deal. Your fistula doesn't " blow up " or anything. It just means that you

have to hold it for 10-15 minutes, and then they re-needle you in another

spot. They put ice on it to minimize any black and blue bruising that

usually is seen the next day.

I have never had low blood pressure to a degree that it would be a problem.

At first, I did have some episodes of mild chest pain, but further

investigation revealed that it was digestive in nature. I just religiously

make sure I take my Pantoloc (pantoprazole, similar to Prilosec, Prevacic,

etc.) daily as prescribed, and if I should get heartburn during dialysis, I

take a TUMS or two. At one point, I would get irregular heartbeats. The

first time, they sent me to emerg as a precaution. There, they took an EKG

and they put me on a heart monitor. No problems. It turned out that it was

because the nurses were pushing it a little with trying for the highest flow

possible on dialysis. Now, I don't go above 400 (still a very good flow),

and I have no problems.

There were some changes after I first started dialysis. For example, my

dialysis prescription with regards to potassium concentration and

bicarbonate during dialysis was changed to reflect my needs better. The

first month, I would get tingling in my body nearing the end of dialysis

(about with a half hour remaining), but the changes in potassium and bicard

fixed that. The bicard regulates how acidic your blood is. It can't be too

high nor too low.

My dry weight target is 56kg, the same as the one I started out with on the

very first day. Since then, we've gone up to 56.6kg, and down to as low as

55.5, but 56 seems to be good. It's not absolutely exact anyway, because

when they take you off, they rince back as much of your blood as they can

from the artificial kidney and the lines, by pushing saline solution into

the lines. This adds about 0.5 litres (same as 0.5 kg of weight) to you, but

they take this into account when they set the machine for amount of fluid to

remove at the start. But most times, at least in my case, it takes less than

0.5 litres to rince back the blood, so I usually end up a little under my

dry weight, like 55.8 or so instead of 56 exactly.

All in all, it's been very tolerable, but certainly time-consuming. I sure

will be glad when my beeper goes off though. However, the next time, I don't

think I will get as excited as I was when they called me in as a backup.

I'll wait until they are actually wheeling me into the operating room :-)

... well, maybe when they start shaving me and when they start the big IV

prednisone dose...

All of the people I became acquainted with when I started dialysis 2 years

ago are still there except one who died of something totally unrelated to

being on dialysis. A number have had a kidney transplant since then, of

course.

Pierre

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Thank you

[Guest guest]

Pierre,

Thank you for your time, energy, and thnoughtfulness- and espicially for posts

like this

one. Reading such detail takes some of the mystery away, makes what may happen

for

many of us seem so much more managable. A heartfelt thank you...

peace,

[Guest guest]

Pierre thanks for a great post...a look into life on dialysis. Your posts

reassure me that if it comes to it I could tolerate doing this. *I mean

what other choice is there besides death I guess* I can't believe it's been

a year for me now since my diagnosis....time flies.

Thanks again for your down to Earth truthful posts.

Amy G.

> 2 years today

>

>

> It's October 4. I started dialysis (hemo in my case) exactly 2 years ago

> today. Hard to believe it's been that long already.

>

> For those who might be interested, and to dispel some common myths about

> dialysis, I still urinate pretty much the same amount I did when I

started

> (not a normal amount, but enough that I can drink an extra half litre of

> fluid a day - and believe me, this means A LOT to a dialysis patient). I

> also eat virtually the same as I did before on my pre-dialysis renal

diet,

> except that I have to eat twice as much protein (for my weight, 6 oz of

meat

> or equivalent per day). I was recently told I could eat more potassium.

How

> much? Well, they don't tell you exactly, only in general terms, like one

> more medium to high potassium fruit per day. For example, my dietician

said

> I could probably eat a tomato sandwich, or have half a banana, or that

kind

> of thing, without any problem. One thing I notice though is the effect

> sodium has. If I eat more than I should, I weigh more when i get to

> dialysis. That means they have that much more fluid to take off, and

that

> can mean cramps. So, I watch the sodium, and I avoid all I can.

Generally,

> for me, as long as I have no more than 3 kg to take off, I have no

cramping.

> I usually gain about 1.5 to 2 litres from one dialysis treatment to the

> next, so it's not a problem.

>

> For me, I find that what most affects how I feel in between treatments

is

> phosphorus. If I eat too many high phosphorus foods like cheese, I feel

> really crappy.

>

> Touch wood, I've never had any kind of infection, and my fistula works

> better now than it did when I started. They do a transonic measurement

once

> a month at dialysis with a special machine. Mine was just this past

> Thursday, and it showed as good a flow as you can get.

>

> In the two years, needles have never been a problem. At first, the

nurses

> just sprayed a numbing solution on the site before inserting the

needles.

> That deadened most of the feel. Then I started buying and using Emla

cream

> for the same purpose. That deadened the feeling so completely that if I

> didn't look, I wouldn't even know the needle was in. After the first

year, I

> stopped using anything. The nerves deaden themselves after a while, but

> sometimes, there's just a slight momentary sting as the needle pierces

the

> skin - just enough to say " Ouch! " , but nothing serious, really. A skin

prick

> to check blood sugar probably hurts more.

>

> In the two years, I only bled twice. The first time, it was about 6

months

> into dialysis, when, I started dripping blood from under the bandages as

I

> walked to the scale to weigh myself after getting off the machine. It

only

> happened that one time, and it was a pretty minor thing. All I had to do

was

> to sit and hold the site for another 10 minutes, and then no problem.

I've

> always driven myself home after dialysis, and while I always keep a

bandage

> kit under my seat, I've never had to use it. I usually drive with my

> dialysis arm and hold my usual after dialysis Tim Horton's coffee with

the

> other hand, and steering has never caused the sites to bleed (I used to

> often put the coffee between my legs as drove, but I've stopped doing

that

> since 's experience).

>

> The other time was when unknown to me, the bandage around my wrist

during

> dialysis that keeps the lines in place became undone as I slept, and

then,

> near the end of my treatment, as I sat back up (raised up the lazyboy

chair

> in other words), the arterial line got caught in the side of the chair,

and

> as I sat up suddenly, the arterial needle pulled right out. I just put

my

> finger on the site to stop it from bleeding and the nurses quickly took

care

> of it.

>

> In terms of the actual needling, it can happen occasionally that the

nurse

> accidentally punctures through the other side of the vein. This is

called

> " infiltration " . This only happened to me twice the first year. It's not

a

> big deal. Your fistula doesn't " blow up " or anything. It just means that

you

> have to hold it for 10-15 minutes, and then they re-needle you in

another

> spot. They put ice on it to minimize any black and blue bruising that

> usually is seen the next day.

>

> I have never had low blood pressure to a degree that it would be a

problem.

> At first, I did have some episodes of mild chest pain, but further

> investigation revealed that it was digestive in nature. I just

religiously

> make sure I take my Pantoloc (pantoprazole, similar to Prilosec,

Prevacic,

> etc.) daily as prescribed, and if I should get heartburn during

dialysis, I

> take a TUMS or two. At one point, I would get irregular heartbeats. The

> first time, they sent me to emerg as a precaution. There, they took an

EKG

> and they put me on a heart monitor. No problems. It turned out that it

was

> because the nurses were pushing it a little with trying for the highest

flow

> possible on dialysis. Now, I don't go above 400 (still a very good

flow),

> and I have no problems.

>

> There were some changes after I first started dialysis. For example, my

> dialysis prescription with regards to potassium concentration and

> bicarbonate during dialysis was changed to reflect my needs better. The

> first month, I would get tingling in my body nearing the end of dialysis

> (about with a half hour remaining), but the changes in potassium and

bicard

> fixed that. The bicard regulates how acidic your blood is. It can't be

too

> high nor too low.

>

> My dry weight target is 56kg, the same as the one I started out with on

the

> very first day. Since then, we've gone up to 56.6kg, and down to as low

as

> 55.5, but 56 seems to be good. It's not absolutely exact anyway, because

> when they take you off, they rince back as much of your blood as they

can

> from the artificial kidney and the lines, by pushing saline solution

into

> the lines. This adds about 0.5 litres (same as 0.5 kg of weight) to you,

but

> they take this into account when they set the machine for amount of

fluid to

> remove at the start. But most times, at least in my case, it takes less

than

> 0.5 litres to rince back the blood, so I usually end up a little under

my

> dry weight, like 55.8 or so instead of 56 exactly.

>

> All in all, it's been very tolerable, but certainly time-consuming. I

sure

> will be glad when my beeper goes off though. However, the next time, I

don't

> think I will get as excited as I was when they called me in as a backup.

> I'll wait until they are actually wheeling me into the operating room

:-)

> ... well, maybe when they start shaving me and when they start the big

IV

> prednisone dose...

>

> All of the people I became acquainted with when I started dialysis 2

years

> ago are still there except one who died of something totally unrelated

to

> being on dialysis. A number have had a kidney transplant since then, of

> course.

>

> Pierre

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>