Re: Nocturnal hemodialysis

[Guest guest]

Can past transplantee's get time as well. I feel a tickle in my throat.

cough...cough....

Cy Webb cyashleywebb@...> wrote:

Was driving on the 101 yesterday and musing... Could it possibly be that

this is the summer for transplants for Pierre & & Sophia & Kathleen???

Maybe we should make this a northern CA post-transplant bed and breakfast

Cy

Re: Nocturnal hemodialysis

>

> The offer is a serious on Pierre!

>

> You will really have to adjust your diet to eat more protein and

> phosphorus.

> It seems so funny to hear you needing to eat more of so many things that

> are

> so limited or even forbidden for me. I really hope you can enjoy your

> new

> dietary freedom.

>

> To hear that you were able to get out and enjoy a walk in the morning just

> sounds so good too. I can almost hear how much better you feel in the

> tone of

> your emails and I could not be happier for you.

>

> Between you and Rita, I think I am on cloud 9 today :-)

>

>

>

> In a message dated 6/25/2005 8:11:43 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> You two better hope I don't take you up on it, now that I can eat!

> :-)

>

> Things are still going well after the first week on nocturnal hemo. Last

> night, I upped my treatment time from 6 to 7 hours, so I wouldn't have to

> wake up so early. I had no difficulty with it, because, I mostly sleep

> anyway. It's not a constant sleep, so far. I do wake up every once in a

> while and I take a quick glance at the display screen and the air

> chambers

> levels, but overall, I sleep through most of the treatment. Because of

> that,

> it ends up seeming like it's much shorter than the average 3-4 hour

> dialysis

> treatment.

>

> I had zero alarms last night, which is pretty good. This morning, a mere

> hour after coming off treatment, I took the dog out for his morning walk

> and

> we walked twice as far as we usually do. I just felt so good, and it's a

> beautiful summer morning. There's no way I would go for walks like that

> after my in-centre dialysis. It's like there's no recovery time at all,

> which is probably due to how little fluid needs to be remove per minute.

> If

> it wasn't that were now under sweltering heat already this morning, I

> would

> probably be out on my bike right now.

>

> There is a trade-off, as I talked about before. That trade off is time,

> plus

> the necessity of having a more or less set routine. For example, last

> night,

> I started my setup procedure at exactly 9:30pm. I took my time doing it,

> but

> I didn't waste any time either. By the time I had my needles in,

> connected

> to the bloodlines, and then pressed the start treatment button, it was

> exactly 11pm. I think I could have shaved 20 minutes off that by working

> faster. I stayed awake for about an hour and then I dozed off. I slept on

> and off, but mostly slept, and then I suddenly woke up with only 2

> minutes

> left in the treatment. That was 6am (7 hour tx), and then it took another

> 30

> minutes for the take-off procedure (which is mostly taken up by the

> necessity of holding each site for 10 minutes before bandaging). So, that

> brought me to about 6:30am. Then, I poked around another half hour while

> I

> took the tubing and such off the machine, set the machine in it's acid

> clean

> mode, and then in it's heat disinfect mode, until I finally turned off

> the

> water. I am able to do other things during that time (like making coffee

> and

> even having breakfast), but, I guess it was past 7 by the time it was all

> over.

>

> Now, that may seem like a lot of time, but, because of the quick post-tx

> recovery, I don't lose half a day just crashing afterwards, so, it seems

> like a net gain in time (like I'm gaining entire days), despite the

> longer

> treatment time and having to set everything up myself.

>

> But I have to say again, I am SO enjoying eating normally! For breakfast,

> I

> went out and bought a freshly-baked baguette, and I ate some with

> home-made

> baked beans (I made them from scratch the other day), and a couple of

> breakfast sausages. I've never eaten beans for breakfast since my army

> days,

> but, I must have had a craving for protein :-)

>

> I would say that so far, I only have reverse dietary restrictions. By

> that,

> I mean there's isn't much I can't eat, but I do have to eat enough protein

> (more than before), and the dietician phoned on Friday to say I had to eat

> more high-phosphorus foods. She suggested more cheese, and cola as good

> sources. This is despite adding a whole bottle of sodium phosphate to my

> dialysate concentrate since starting the nocturnal hemo. I will be taking

> repeat bloodwork myself on Wednesday, and then I will have a better idea

> how

> I'm doing.

>

> Plus, I no longer have to keep track of my fluid intake. I just know now

> from experience that there's no way I can drink more than I can handle in

> just one day.

>

> Pierre

>

>

>

>

>

>

>

[Guest guest]

Pierre:

I am so happy for you that nocturnal dialysis is going well. I bet you're

looking ofrward to having so much more of the day available to you.

Pierre Lachaine pgl-groups@...> wrote:

Blood work looks pretty good. The sleeping during treatment aspect of it is

going pretty well too. I only had one alarm all night. It was just a simple

venous pressure alarm - easily corrected by pressing a button on the

machine, and it happened during the first half hour when I wasn't sleeping

yet. After that, I slept most of the night until there was just 17 minutes

left of the 6 hour treatment.

I'm finding out that I'm not as limited in sleeping positions as one might

think. I can sleep on my back, curled up on either side, and even on my

stomach as long as my fistula arm and the dialysis machine are on the same

side. There's nothing uncomfortable about it at all, really. I mean, it's

not like being able to spread out and wander all over the bed, but it's not

too bad. You just have to make sure you tape the lines leaving plenty of

slack, and I also tape the two lines together now, so they don't get all

twisted and tangled up. It works. A good taping job of the needle lines on

my wrist makes them pretty secure. I slip a length of burn mesh over my

wrist, then over that, at the wrist, I make a little cuff using 4x4 gauze.

Then I tape the lines down individually over that with paper tape.

Anyway, so far so good. My post-treatment creatinine was 142 umol/L, urea

2.2 mmol/L, potassium 3.8mmol/L (this is on a K3 bath, which removes the

least amount of potassium possible), phosphorus down from 1.83 mmol/L

pre-treatment to 0.69 mmol/L post-treatment.

Yesterday, I actually had to force myself to drink at the end of the day, so

I would have enough to take off during treatment.

In answer to why there aren't that many nocturnal hemodialysis patients...

For one thing, it hasn't been that long that this method of dialysis has

been revived from the late 1960's and early 1970's. It died off pretty much

after technology made it possible to get " adequate " dialysis 3 times a week

for 3-4 hours. It wasn't until around 1994 that interest in it was

rekindled, after it started to be realized that thrice-weekly, relatively

short dialysis was not improving morbidity or mortality at all. In fact,

despite the efficiency of the dialyzers on paper, short intermittent

hemodialysis was making things worse. This was attributed to the

" unphysiological effects " of thrice weekly dialysis. A nocturnal hemo

program was done in Toronto, where they proved it worked, it was safe, and

it was a terrific improvement in terms of approximating natural kidney

function as much as possible. The program I'm in in Ottawa evolved from the

Toronto experience. At the same time, experiments in France showed the

benefits of longer hemodialysis (theirs was not nocturnal though). Until

more recently, there was some resistance to the idea of patients training to

do this on their own without a similarly-trained partner. This made it

unfeasible for many people who didn't have someone who could take 6-8 weeks

off to train with them. Because nocturnal is 6 treatments a week (as is

short daily hemo), because it requires one machine dedicated to one patient,

the upfront startup costs are high. The payoff comes in the longer term,

over the entire health care system, with fewer hospitalizations, fewer

medications, etc. This tends to be more of interest under single payer

medicare systems such as in Canada and some European countries. The

government has to be willing to absorb the extra costs at first. It's coming

along though. There are little pockets of us here and there in major cities

all across North America.

Pierre

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Thank you

---------------------------------

[Guest guest]

, if you made it out here, I'll run to Walmart to see if they have red

carpets.

Cy

Cohen garymattcohen@...> wrote:

Can past transplantee's get time as well. I feel a tickle in my throat.

cough...cough....

Cy Webb wrote:

Was driving on the 101 yesterday and musing... Could it possibly be that

this is the summer for transplants for Pierre & & Sophia & Kathleen???

Maybe we should make this a northern CA post-transplant bed and breakfast

Cy

Re: Nocturnal hemodialysis

>

> The offer is a serious on Pierre!

>

> You will really have to adjust your diet to eat more protein and

> phosphorus.

> It seems so funny to hear you needing to eat more of so many things that

> are

> so limited or even forbidden for me. I really hope you can enjoy your

> new

> dietary freedom.

>

> To hear that you were able to get out and enjoy a walk in the morning just

> sounds so good too. I can almost hear how much better you feel in the

> tone of

> your emails and I could not be happier for you.

>

> Between you and Rita, I think I am on cloud 9 today :-)

>

>

>

> In a message dated 6/25/2005 8:11:43 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> You two better hope I don't take you up on it, now that I can eat!

> :-)

>

> Things are still going well after the first week on nocturnal hemo. Last

> night, I upped my treatment time from 6 to 7 hours, so I wouldn't have to

> wake up so early. I had no difficulty with it, because, I mostly sleep

> anyway. It's not a constant sleep, so far. I do wake up every once in a

> while and I take a quick glance at the display screen and the air

> chambers

> levels, but overall, I sleep through most of the treatment. Because of

> that,

> it ends up seeming like it's much shorter than the average 3-4 hour

> dialysis

> treatment.

>

> I had zero alarms last night, which is pretty good. This morning, a mere

> hour after coming off treatment, I took the dog out for his morning walk

> and

> we walked twice as far as we usually do. I just felt so good, and it's a

> beautiful summer morning. There's no way I would go for walks like that

> after my in-centre dialysis. It's like there's no recovery time at all,

> which is probably due to how little fluid needs to be remove per minute.

> If

> it wasn't that were now under sweltering heat already this morning, I

> would

> probably be out on my bike right now.

>

> There is a trade-off, as I talked about before. That trade off is time,

> plus

> the necessity of having a more or less set routine. For example, last

> night,

> I started my setup procedure at exactly 9:30pm. I took my time doing it,

> but

> I didn't waste any time either. By the time I had my needles in,

> connected

> to the bloodlines, and then pressed the start treatment button, it was

> exactly 11pm. I think I could have shaved 20 minutes off that by working

> faster. I stayed awake for about an hour and then I dozed off. I slept on

> and off, but mostly slept, and then I suddenly woke up with only 2

> minutes

> left in the treatment. That was 6am (7 hour tx), and then it took another

> 30

> minutes for the take-off procedure (which is mostly taken up by the

> necessity of holding each site for 10 minutes before bandaging). So, that

> brought me to about 6:30am. Then, I poked around another half hour while

> I

> took the tubing and such off the machine, set the machine in it's acid

> clean

> mode, and then in it's heat disinfect mode, until I finally turned off

> the

> water. I am able to do other things during that time (like making coffee

> and

> even having breakfast), but, I guess it was past 7 by the time it was all

> over.

>

> Now, that may seem like a lot of time, but, because of the quick post-tx

> recovery, I don't lose half a day just crashing afterwards, so, it seems

> like a net gain in time (like I'm gaining entire days), despite the

> longer

> treatment time and having to set everything up myself.

>

> But I have to say again, I am SO enjoying eating normally! For breakfast,

> I

> went out and bought a freshly-baked baguette, and I ate some with

> home-made

> baked beans (I made them from scratch the other day), and a couple of

> breakfast sausages. I've never eaten beans for breakfast since my army

> days,

> but, I must have had a craving for protein :-)

>

> I would say that so far, I only have reverse dietary restrictions. By

> that,

> I mean there's isn't much I can't eat, but I do have to eat enough protein

> (more than before), and the dietician phoned on Friday to say I had to eat

> more high-phosphorus foods. She suggested more cheese, and cola as good

> sources. This is despite adding a whole bottle of sodium phosphate to my

> dialysate concentrate since starting the nocturnal hemo. I will be taking

> repeat bloodwork myself on Wednesday, and then I will have a better idea

> how

> I'm doing.

>

> Plus, I no longer have to keep track of my fluid intake. I just know now

> from experience that there's no way I can drink more than I can handle in

> just one day.

>

> Pierre

>

>

>

>

>

>

>

[Guest guest]

Deal.

Cy Webb cyashleywebb@...> wrote:, if you made it out here, I'll

run to Walmart to see if they have red carpets.

Cy

Cohen garymattcohen@...> wrote:

Can past transplantee's get time as well. I feel a tickle in my throat.

cough...cough....

Cy Webb wrote:

Was driving on the 101 yesterday and musing... Could it possibly be that

this is the summer for transplants for Pierre & & Sophia & Kathleen???

Maybe we should make this a northern CA post-transplant bed and breakfast

Cy

Re: Nocturnal hemodialysis

>

> The offer is a serious on Pierre!

>

> You will really have to adjust your diet to eat more protein and

> phosphorus.

> It seems so funny to hear you needing to eat more of so many things that

> are

> so limited or even forbidden for me. I really hope you can enjoy your

> new

> dietary freedom.

>

> To hear that you were able to get out and enjoy a walk in the morning just

> sounds so good too. I can almost hear how much better you feel in the

> tone of

> your emails and I could not be happier for you.

>

> Between you and Rita, I think I am on cloud 9 today :-)

>

>

>

> In a message dated 6/25/2005 8:11:43 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> You two better hope I don't take you up on it, now that I can eat!

> :-)

>

> Things are still going well after the first week on nocturnal hemo. Last

> night, I upped my treatment time from 6 to 7 hours, so I wouldn't have to

> wake up so early. I had no difficulty with it, because, I mostly sleep

> anyway. It's not a constant sleep, so far. I do wake up every once in a

> while and I take a quick glance at the display screen and the air

> chambers

> levels, but overall, I sleep through most of the treatment. Because of

> that,

> it ends up seeming like it's much shorter than the average 3-4 hour

> dialysis

> treatment.

>

> I had zero alarms last night, which is pretty good. This morning, a mere

> hour after coming off treatment, I took the dog out for his morning walk

> and

> we walked twice as far as we usually do. I just felt so good, and it's a

> beautiful summer morning. There's no way I would go for walks like that

> after my in-centre dialysis. It's like there's no recovery time at all,

> which is probably due to how little fluid needs to be remove per minute.

> If

> it wasn't that were now under sweltering heat already this morning, I

> would

> probably be out on my bike right now.

>

> There is a trade-off, as I talked about before. That trade off is time,

> plus

> the necessity of having a more or less set routine. For example, last

> night,

> I started my setup procedure at exactly 9:30pm. I took my time doing it,

> but

> I didn't waste any time either. By the time I had my needles in,

> connected

> to the bloodlines, and then pressed the start treatment button, it was

> exactly 11pm. I think I could have shaved 20 minutes off that by working

> faster. I stayed awake for about an hour and then I dozed off. I slept on

> and off, but mostly slept, and then I suddenly woke up with only 2

> minutes

> left in the treatment. That was 6am (7 hour tx), and then it took another

> 30

> minutes for the take-off procedure (which is mostly taken up by the

> necessity of holding each site for 10 minutes before bandaging). So, that

> brought me to about 6:30am. Then, I poked around another half hour while

> I

> took the tubing and such off the machine, set the machine in it's acid

> clean

> mode, and then in it's heat disinfect mode, until I finally turned off

> the

> water. I am able to do other things during that time (like making coffee

> and

> even having breakfast), but, I guess it was past 7 by the time it was all

> over.

>

> Now, that may seem like a lot of time, but, because of the quick post-tx

> recovery, I don't lose half a day just crashing afterwards, so, it seems

> like a net gain in time (like I'm gaining entire days), despite the

> longer

> treatment time and having to set everything up myself.

>

> But I have to say again, I am SO enjoying eating normally! For breakfast,

> I

> went out and bought a freshly-baked baguette, and I ate some with

> home-made

> baked beans (I made them from scratch the other day), and a couple of

> breakfast sausages. I've never eaten beans for breakfast since my army

> days,

> but, I must have had a craving for protein :-)

>

> I would say that so far, I only have reverse dietary restrictions. By

> that,

> I mean there's isn't much I can't eat, but I do have to eat enough protein

> (more than before), and the dietician phoned on Friday to say I had to eat

> more high-phosphorus foods. She suggested more cheese, and cola as good

> sources. This is despite adding a whole bottle of sodium phosphate to my

> dialysate concentrate since starting the nocturnal hemo. I will be taking

> repeat bloodwork myself on Wednesday, and then I will have a better idea

> how

> I'm doing.

>

> Plus, I no longer have to keep track of my fluid intake. I just know now

> from experience that there's no way I can drink more than I can handle in

> just one day.

>

> Pierre

>

>

>

>

>

>

>

[Guest guest]

, I will help Cy roll out the red carpet!

Re: Nocturnal hemodialysis

Can past transplantee's get time as well. I feel a tickle in my

throat.

cough...cough....

Cy Webb cyashleywebb@...> wrote:

Was driving on the 101 yesterday and musing... Could it possibly be

that

this is the summer for transplants for Pierre & & Sophia &

Kathleen???

Maybe we should make this a northern CA post-transplant bed and

breakfast

Cy

Re: Nocturnal hemodialysis

>

> The offer is a serious on Pierre!

>

> You will really have to adjust your diet to eat more protein and

> phosphorus.

> It seems so funny to hear you needing to eat more of so many things

that

> are

> so limited or even forbidden for me. I really hope you can enjoy

your

> new

> dietary freedom.

>

> To hear that you were able to get out and enjoy a walk in the morning

just

> sounds so good too. I can almost hear how much better you feel in

the

> tone of

> your emails and I could not be happier for you.

>

> Between you and Rita, I think I am on cloud 9 today :-)

>

>

>

> In a message dated 6/25/2005 8:11:43 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> You two better hope I don't take you up on it, now that I can eat!

> :-)

>

> Things are still going well after the first week on nocturnal hemo.

Last

> night, I upped my treatment time from 6 to 7 hours, so I wouldn't

have to

> wake up so early. I had no difficulty with it, because, I mostly

sleep

> anyway. It's not a constant sleep, so far. I do wake up every once

in a

> while and I take a quick glance at the display screen and the air

> chambers

> levels, but overall, I sleep through most of the treatment. Because

of

> that,

> it ends up seeming like it's much shorter than the average 3-4 hour

> dialysis

> treatment.

>

> I had zero alarms last night, which is pretty good. This morning, a

mere

> hour after coming off treatment, I took the dog out for his morning

walk

> and

> we walked twice as far as we usually do. I just felt so good, and

it's a

> beautiful summer morning. There's no way I would go for walks like

that

> after my in-centre dialysis. It's like there's no recovery time at

all,

> which is probably due to how little fluid needs to be remove per

minute.

> If

> it wasn't that were now under sweltering heat already this morning,

I

> would

> probably be out on my bike right now.

>

> There is a trade-off, as I talked about before. That trade off is

time,

> plus

> the necessity of having a more or less set routine. For example,

last

> night,

> I started my setup procedure at exactly 9:30pm. I took my time doing

it,

> but

> I didn't waste any time either. By the time I had my needles in,

> connected

> to the bloodlines, and then pressed the start treatment button, it

was

> exactly 11pm. I think I could have shaved 20 minutes off that by

working

> faster. I stayed awake for about an hour and then I dozed off. I

slept on

> and off, but mostly slept, and then I suddenly woke up with only 2

> minutes

> left in the treatment. That was 6am (7 hour tx), and then it took

another

> 30

> minutes for the take-off procedure (which is mostly taken up by the

> necessity of holding each site for 10 minutes before bandaging). So,

that

> brought me to about 6:30am. Then, I poked around another half hour

while

> I

> took the tubing and such off the machine, set the machine in it's

acid

> clean

> mode, and then in it's heat disinfect mode, until I finally turned

off

> the

> water. I am able to do other things during that time (like making

coffee

> and

> even having breakfast), but, I guess it was past 7 by the time it

was all

> over.

>

> Now, that may seem like a lot of time, but, because of the quick

post-tx

> recovery, I don't lose half a day just crashing afterwards, so, it

seems

> like a net gain in time (like I'm gaining entire days), despite the

> longer

> treatment time and having to set everything up myself.

>

> But I have to say again, I am SO enjoying eating normally! For

breakfast,

> I

> went out and bought a freshly-baked baguette, and I ate some with

> home-made

> baked beans (I made them from scratch the other day), and a couple of

> breakfast sausages. I've never eaten beans for breakfast since my

army

> days,

> but, I must have had a craving for protein :-)

>

> I would say that so far, I only have reverse dietary restrictions.

By

> that,

> I mean there's isn't much I can't eat, but I do have to eat enough

protein

> (more than before), and the dietician phoned on Friday to say I had

to eat

> more high-phosphorus foods. She suggested more cheese, and cola as

good

> sources. This is despite adding a whole bottle of sodium phosphate to

my

> dialysate concentrate since starting the nocturnal hemo. I will be

taking

> repeat bloodwork myself on Wednesday, and then I will have a better

idea

> how

> I'm doing.

>

> Plus, I no longer have to keep track of my fluid intake. I just know

now

> from experience that there's no way I can drink more than I can

handle in

> just one day.

>

> Pierre

>

>

>

>

>

>

>

[Guest guest]

and Cy:

My family is planning on taking a CA vacation next year, to the SF Bay and

Monterey area. My wife is a native (lived in SoCal and the Bay area). I'll be

looking for you guys at the airport!

W4JC@... wrote:

, I will help Cy roll out the red carpet!

Re: Nocturnal hemodialysis

Can past transplantee's get time as well. I feel a tickle in my

throat.

cough...cough....

Cy Webb cyashleywebb@...> wrote:

Was driving on the 101 yesterday and musing... Could it possibly be

that

this is the summer for transplants for Pierre & & Sophia &

Kathleen???

Maybe we should make this a northern CA post-transplant bed and

breakfast

Cy

Re: Nocturnal hemodialysis

>

> The offer is a serious on Pierre!

>

> You will really have to adjust your diet to eat more protein and

> phosphorus.

> It seems so funny to hear you needing to eat more of so many things

that

> are

> so limited or even forbidden for me. I really hope you can enjoy

your

> new

> dietary freedom.

>

> To hear that you were able to get out and enjoy a walk in the morning

just

> sounds so good too. I can almost hear how much better you feel in

the

> tone of

> your emails and I could not be happier for you.

>

> Between you and Rita, I think I am on cloud 9 today :-)

>

>

>

> In a message dated 6/25/2005 8:11:43 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> You two better hope I don't take you up on it, now that I can eat!

> :-)

>

> Things are still going well after the first week on nocturnal hemo.

Last

> night, I upped my treatment time from 6 to 7 hours, so I wouldn't

have to

> wake up so early. I had no difficulty with it, because, I mostly

sleep

> anyway. It's not a constant sleep, so far. I do wake up every once

in a

> while and I take a quick glance at the display screen and the air

> chambers

> levels, but overall, I sleep through most of the treatment. Because

of

> that,

> it ends up seeming like it's much shorter than the average 3-4 hour

> dialysis

> treatment.

>

> I had zero alarms last night, which is pretty good. This morning, a

mere

> hour after coming off treatment, I took the dog out for his morning

walk

> and

> we walked twice as far as we usually do. I just felt so good, and

it's a

> beautiful summer morning. There's no way I would go for walks like

that

> after my in-centre dialysis. It's like there's no recovery time at

all,

> which is probably due to how little fluid needs to be remove per

minute.

> If

> it wasn't that were now under sweltering heat already this morning,

I

> would

> probably be out on my bike right now.

>

> There is a trade-off, as I talked about before. That trade off is

time,

> plus

> the necessity of having a more or less set routine. For example,

last

> night,

> I started my setup procedure at exactly 9:30pm. I took my time doing

it,

> but

> I didn't waste any time either. By the time I had my needles in,

> connected

> to the bloodlines, and then pressed the start treatment button, it

was

> exactly 11pm. I think I could have shaved 20 minutes off that by

working

> faster. I stayed awake for about an hour and then I dozed off. I

slept on

> and off, but mostly slept, and then I suddenly woke up with only 2

> minutes

> left in the treatment. That was 6am (7 hour tx), and then it took

another

> 30

> minutes for the take-off procedure (which is mostly taken up by the

> necessity of holding each site for 10 minutes before bandaging). So,

that

> brought me to about 6:30am. Then, I poked around another half hour

while

> I

> took the tubing and such off the machine, set the machine in it's

acid

> clean

> mode, and then in it's heat disinfect mode, until I finally turned

off

> the

> water. I am able to do other things during that time (like making

coffee

> and

> even having breakfast), but, I guess it was past 7 by the time it

was all

> over.

>

> Now, that may seem like a lot of time, but, because of the quick

post-tx

> recovery, I don't lose half a day just crashing afterwards, so, it

seems

> like a net gain in time (like I'm gaining entire days), despite the

> longer

> treatment time and having to set everything up myself.

>

> But I have to say again, I am SO enjoying eating normally! For

breakfast,

> I

> went out and bought a freshly-baked baguette, and I ate some with

> home-made

> baked beans (I made them from scratch the other day), and a couple of

> breakfast sausages. I've never eaten beans for breakfast since my

army

> days,

> but, I must have had a craving for protein :-)

>

> I would say that so far, I only have reverse dietary restrictions.

By

> that,

> I mean there's isn't much I can't eat, but I do have to eat enough

protein

> (more than before), and the dietician phoned on Friday to say I had

to eat

> more high-phosphorus foods. She suggested more cheese, and cola as

good

> sources. This is despite adding a whole bottle of sodium phosphate to

my

> dialysate concentrate since starting the nocturnal hemo. I will be

taking

> repeat bloodwork myself on Wednesday, and then I will have a better

idea

> how

> I'm doing.

>

> Plus, I no longer have to keep track of my fluid intake. I just know

now

> from experience that there's no way I can drink more than I can

handle in

> just one day.

>

> Pierre

>

>

>

>

>

>

>

[Guest guest]

Let us know and we will definitely work it out!

Re: Nocturnal hemodialysis

Can past transplantee's get time as well. I feel a tickle in my

throat.

cough...cough....

Cy Webb cyashleywebb@...> wrote:

Was driving on the 101 yesterday and musing... Could it possibly be

that

this is the summer for transplants for Pierre & & Sophia &

Kathleen???

Maybe we should make this a northern CA post-transplant bed and

breakfast

Cy

Re: Nocturnal hemodialysis

>

> The offer is a serious on Pierre!

>

> You will really have to adjust your diet to eat more protein and

> phosphorus.

> It seems so funny to hear you needing to eat more of so many things

that

> are

> so limited or even forbidden for me. I really hope you can enjoy

your

> new

> dietary freedom.

>

> To hear that you were able to get out and enjoy a walk in the morning

just

> sounds so good too. I can almost hear how much better you feel in

the

> tone of

> your emails and I could not be happier for you.

>

> Between you and Rita, I think I am on cloud 9 today :-)

>

>

>

> In a message dated 6/25/2005 8:11:43 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> You two better hope I don't take you up on it, now that I can eat!

> :-)

>

> Things are still going well after the first week on nocturnal hemo.

Last

> night, I upped my treatment time from 6 to 7 hours, so I wouldn't

have to

> wake up so early. I had no difficulty with it, because, I mostly

sleep

> anyway. It's not a constant sleep, so far. I do wake up every once

in a

> while and I take a quick glance at the display screen and the air

> chambers

> levels, but overall, I sleep through most of the treatment. Because

of

> that,

> it ends up seeming like it's much shorter than the average 3-4 hour

> dialysis

> treatment.

>

> I had zero alarms last night, which is pretty good. This morning, a

mere

> hour after coming off treatment, I took the dog out for his morning

walk

> and

> we walked twice as far as we usually do. I just felt so good, and

it's a

> beautiful summer morning. There's no way I would go for walks like

that

> after my in-centre dialysis. It's like there's no recovery time at

all,

> which is probably due to how little fluid needs to be remove per

minute.

> If

> it wasn't that were now under sweltering heat already this morning,

I

> would

> probably be out on my bike right now.

>

> There is a trade-off, as I talked about before. That trade off is

time,

> plus

> the necessity of having a more or less set routine. For example,

last

> night,

> I started my setup procedure at exactly 9:30pm. I took my time doing

it,

> but

> I didn't waste any time either. By the time I had my needles in,

> connected

> to the bloodlines, and then pressed the start treatment button, it

was

> exactly 11pm. I think I could have shaved 20 minutes off that by

working

> faster. I stayed awake for about an hour and then I dozed off. I

slept on

> and off, but mostly slept, and then I suddenly woke up with only 2

> minutes

> left in the treatment. That was 6am (7 hour tx), and then it took

another

> 30

> minutes for the take-off procedure (which is mostly taken up by the

> necessity of holding each site for 10 minutes before bandaging). So,

that

> brought me to about 6:30am. Then, I poked around another half hour

while

> I

> took the tubing and such off the machine, set the machine in it's

acid

> clean

> mode, and then in it's heat disinfect mode, until I finally turned

off

> the

> water. I am able to do other things during that time (like making

coffee

> and

> even having breakfast), but, I guess it was past 7 by the time it

was all

> over.

>

> Now, that may seem like a lot of time, but, because of the quick

post-tx

> recovery, I don't lose half a day just crashing afterwards, so, it

seems

> like a net gain in time (like I'm gaining entire days), despite the

> longer

> treatment time and having to set everything up myself.

>

> But I have to say again, I am SO enjoying eating normally! For

breakfast,

> I

> went out and bought a freshly-baked baguette, and I ate some with

> home-made

> baked beans (I made them from scratch the other day), and a couple of

> breakfast sausages. I've never eaten beans for breakfast since my

army

> days,

> but, I must have had a craving for protein :-)

>

> I would say that so far, I only have reverse dietary restrictions.

By

> that,

> I mean there's isn't much I can't eat, but I do have to eat enough

protein

> (more than before), and the dietician phoned on Friday to say I had

to eat

> more high-phosphorus foods. She suggested more cheese, and cola as

good

> sources. This is despite adding a whole bottle of sodium phosphate to

my

> dialysate concentrate since starting the nocturnal hemo. I will be

taking

> repeat bloodwork myself on Wednesday, and then I will have a better

idea

> how

> I'm doing.

>

> Plus, I no longer have to keep track of my fluid intake. I just know

now

> from experience that there's no way I can drink more than I can

handle in

> just one day.

>

> Pierre

>

>

>

>

>

>

>

[Guest guest]

Hi ,

This is very true. I was probably thinking sports (like golf) and dancing

when I felt it would interfere with my summer.

How soon after the tx operation did you start walking?

Sophia

> > >> Last night, I slept pretty well again. To be honest, it almost

seems

> > > shorter

> > >> than a 2-3 hour daytime treatment. Only one alarm last night,

and

> > > again, it

> > >> happened within the first 30 minutes of the treatment.

> > >>

> > >> Last night was my first night having to add sodium phosphate

to

> my

> > >> dialysate. Flashback to 2001, when I started on a renal diet and

> > > started

> > >> limiting phosphorus. October 2002, started dialysis and

continued

> > > limiting

> > >> phosphorus (which to me, seems like the hardest thing to limit -

> > > little

> > >> cheese, no ice cream, no legumes, etc.). Phosphorus is not

> > > immediately risky

> > >> like potassium is, but it's potentially the one with the most

> > > serious

> > >> consequences in the long term. June 2005 - now I'm actually

> > > *supplementing*

> > >> myself with extra phosphorus by adding a whole bottle of it to

my

> > > dialysate

> > >> concentrate. It just seems so incredible to me! I'm also

> > > supplementing with

> > >> calcium in the same way (but calcium isn't as exciting, since it

> has

> > > little

> > >> impact on diet either way).

> > >>

> > >> My nurse keeps talking about my having an appointment in

> August,

> > > " if I

> > >> haven't been transplanted by then " . I'm actually getting pretty

> > > close, so

> > >> there's a better than even chance.

> > >>

> > >> 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

> > >

[Guest guest]

It took me a month to get back on the treadmill for more than 10-15 minutes. It

just felt weird - not in a bad way, just weird. I was also paranoid that the

pounding on the treadmill would break it (it didn't). It was also a cold winter

when I had it done.

yipee_ladybug yipee_ladybug@...> wrote:

Hi ,

This is very true. I was probably thinking sports (like golf) and dancing

when I felt it would interfere with my summer.

How soon after the tx operation did you start walking?

Sophia

> > >> Last night, I slept pretty well again. To be honest, it almost

seems

> > > shorter

> > >> than a 2-3 hour daytime treatment. Only one alarm last night,

and

> > > again, it

> > >> happened within the first 30 minutes of the treatment.

> > >>

> > >> Last night was my first night having to add sodium phosphate

to

> my

> > >> dialysate. Flashback to 2001, when I started on a renal diet and

> > > started

> > >> limiting phosphorus. October 2002, started dialysis and

continued

> > > limiting

> > >> phosphorus (which to me, seems like the hardest thing to limit -

> > > little

> > >> cheese, no ice cream, no legumes, etc.). Phosphorus is not

> > > immediately risky

> > >> like potassium is, but it's potentially the one with the most

> > > serious

> > >> consequences in the long term. June 2005 - now I'm actually

> > > *supplementing*

> > >> myself with extra phosphorus by adding a whole bottle of it to

my

> > > dialysate

> > >> concentrate. It just seems so incredible to me! I'm also

> > > supplementing with

> > >> calcium in the same way (but calcium isn't as exciting, since it

> has

> > > little

> > >> impact on diet either way).

> > >>

> > >> My nurse keeps talking about my having an appointment in

> August,

> > > " if I

> > >> haven't been transplanted by then " . I'm actually getting pretty

> > > close, so

> > >> there's a better than even chance.

> > >>

> > >> 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

> > >

[Guest guest]

That would be so awesome!

W4JC@... wrote:Let us know and we will definitely work it out!

Re: Nocturnal hemodialysis

Can past transplantee's get time as well. I feel a tickle in my

throat.

cough...cough....

Cy Webb cyashleywebb@...> wrote:

Was driving on the 101 yesterday and musing... Could it possibly be

that

this is the summer for transplants for Pierre & & Sophia &

Kathleen???

Maybe we should make this a northern CA post-transplant bed and

breakfast

Cy

Re: Nocturnal hemodialysis

>

> The offer is a serious on Pierre!

>

> You will really have to adjust your diet to eat more protein and

> phosphorus.

> It seems so funny to hear you needing to eat more of so many things

that

> are

> so limited or even forbidden for me. I really hope you can enjoy

your

> new

> dietary freedom.

>

> To hear that you were able to get out and enjoy a walk in the morning

just

> sounds so good too. I can almost hear how much better you feel in

the

> tone of

> your emails and I could not be happier for you.

>

> Between you and Rita, I think I am on cloud 9 today :-)

>

>

>

> In a message dated 6/25/2005 8:11:43 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> You two better hope I don't take you up on it, now that I can eat!

> :-)

>

> Things are still going well after the first week on nocturnal hemo.

Last

> night, I upped my treatment time from 6 to 7 hours, so I wouldn't

have to

> wake up so early. I had no difficulty with it, because, I mostly

sleep

> anyway. It's not a constant sleep, so far. I do wake up every once

in a

> while and I take a quick glance at the display screen and the air

> chambers

> levels, but overall, I sleep through most of the treatment. Because

of

> that,

> it ends up seeming like it's much shorter than the average 3-4 hour

> dialysis

> treatment.

>

> I had zero alarms last night, which is pretty good. This morning, a

mere

> hour after coming off treatment, I took the dog out for his morning

walk

> and

> we walked twice as far as we usually do. I just felt so good, and

it's a

> beautiful summer morning. There's no way I would go for walks like

that

> after my in-centre dialysis. It's like there's no recovery time at

all,

> which is probably due to how little fluid needs to be remove per

minute.

> If

> it wasn't that were now under sweltering heat already this morning,

I

> would

> probably be out on my bike right now.

>

> There is a trade-off, as I talked about before. That trade off is

time,

> plus

> the necessity of having a more or less set routine. For example,

last

> night,

> I started my setup procedure at exactly 9:30pm. I took my time doing

it,

> but

> I didn't waste any time either. By the time I had my needles in,

> connected

> to the bloodlines, and then pressed the start treatment button, it

was

> exactly 11pm. I think I could have shaved 20 minutes off that by

working

> faster. I stayed awake for about an hour and then I dozed off. I

slept on

> and off, but mostly slept, and then I suddenly woke up with only 2

> minutes

> left in the treatment. That was 6am (7 hour tx), and then it took

another

> 30

> minutes for the take-off procedure (which is mostly taken up by the

> necessity of holding each site for 10 minutes before bandaging). So,

that

> brought me to about 6:30am. Then, I poked around another half hour

while

> I

> took the tubing and such off the machine, set the machine in it's

acid

> clean

> mode, and then in it's heat disinfect mode, until I finally turned

off

> the

> water. I am able to do other things during that time (like making

coffee

> and

> even having breakfast), but, I guess it was past 7 by the time it

was all

> over.

>

> Now, that may seem like a lot of time, but, because of the quick

post-tx

> recovery, I don't lose half a day just crashing afterwards, so, it

seems

> like a net gain in time (like I'm gaining entire days), despite the

> longer

> treatment time and having to set everything up myself.

>

> But I have to say again, I am SO enjoying eating normally! For

breakfast,

> I

> went out and bought a freshly-baked baguette, and I ate some with

> home-made

> baked beans (I made them from scratch the other day), and a couple of

> breakfast sausages. I've never eaten beans for breakfast since my

army

> days,

> but, I must have had a craving for protein :-)

>

> I would say that so far, I only have reverse dietary restrictions.

By

> that,

> I mean there's isn't much I can't eat, but I do have to eat enough

protein

> (more than before), and the dietician phoned on Friday to say I had

to eat

> more high-phosphorus foods. She suggested more cheese, and cola as

good

> sources. This is despite adding a whole bottle of sodium phosphate to

my

> dialysate concentrate since starting the nocturnal hemo. I will be

taking

> repeat bloodwork myself on Wednesday, and then I will have a better

idea

> how

> I'm doing.

>

> Plus, I no longer have to keep track of my fluid intake. I just know

now

> from experience that there's no way I can drink more than I can

handle in

> just one day.

>

> Pierre

>

>

>

>

>

>

>