Re: Nocturnal hemodialysis

[Guest guest]

Thank you Pierre for taking the time to share your experience. You really are

passing

on a gift.

peace,

[Guest guest]

Pierre - how wonderful for you. Such a simple thing to enjoy that so many

take for granted. Enjoy those tomatoes and cheddar cheese - Sounds

absolutely heavenly! You need to share your recipe sometime! Hugs, Rita

[Guest guest]

I enjoy sharing the experience. This afternoon, it suddenly dawned on me

that I could now eat things like my special tomato macaroni with cheese, so

I made some. Nothing " diet " about it whatsoever. It was great. Didn't have

to worry about the tomatoes, didn't have to worry about the tons of cheddar

and mozzarella! Of course, tonight, if for some reason I couldn't get my

dialysis, I could be in some difficulty :-)

Pierre

Re: Nocturnal hemodialysis

> Thank you Pierre for taking the time to share your experience. You really

> are passing

> on a gift.

> peace,

>

>

>

>

[Guest guest]

I am glad you are able to sleep well on Nocturnal Pierre. I was concerned

about you being able to get adequate rest.

Your labs look just fantastic, and the freedom to eat what you want must be

fantastic!

Thank you for sharing the history of nocturnal. It makes perfect sense. I

only know I am thankful you are on it but still looking forward to the day you

have your new kidney and are off dialysis completely.

In a message dated 6/22/2005 10:46:23 A.M. Pacific Daylight Time,

pgl-groups@... writes:

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.

[Guest guest]

I LOVE listening to you talk about food Pierre! When I was reading your

earlier post, I was imagining what a perfectly awful time the three cats

would create with the needle lines. The alarms would be going off more than

the darn car alarms in the parking lot behind my unit. However, I think I

could quite happily swap off sleeping with the three beasties for macaroni

like that!

Cy

Re: Nocturnal hemodialysis

>

>

>> Thank you Pierre for taking the time to share your experience. You really

>> are passing

>> on a gift.

>> peace,

>>

>>

>>

>>

>

>

>

> 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]

My recipe is pretty rich. You guys might end up on dialysis just from

smelling it :-)

Pierre

Re: Re: Nocturnal hemodialysis

> Pierre - how wonderful for you. Such a simple thing to enjoy that so

> many

> take for granted. Enjoy those tomatoes and cheddar cheese - Sounds

> absolutely heavenly! You need to share your recipe sometime! Hugs, Rita

>

>

[Guest guest]

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

Re: Nocturnal hemodialysis

>

> I am glad you are able to sleep well on Nocturnal Pierre. I was concerned

> about you being able to get adequate rest.

>

> Your labs look just fantastic, and the freedom to eat what you want must

> be

> fantastic!

>

> Thank you for sharing the history of nocturnal. It makes perfect sense.

> I

> only know I am thankful you are on it but still looking forward to the

> day you

> have your new kidney and are off dialysis completely.

>

>

>

> In a message dated 6/22/2005 10:46:23 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> 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.

>

>

>

>

>

>

[Guest guest]

Oh Pierre! The last lines of your post made my heart quicken. May this

rush of positive changes continue... and that transplant come SOON!

Cy

Re: Nocturnal hemodialysis

>

>

>>

>> I am glad you are able to sleep well on Nocturnal Pierre. I was concerned

>> about you being able to get adequate rest.

>>

>> Your labs look just fantastic, and the freedom to eat what you want must

>> be

>> fantastic!

>>

>> Thank you for sharing the history of nocturnal. It makes perfect sense.

>> I

>> only know I am thankful you are on it but still looking forward to the

>> day you

>> have your new kidney and are off dialysis completely.

>>

>>

>>

>> In a message dated 6/22/2005 10:46:23 A.M. Pacific Daylight Time,

>> pgl-groups@... writes:

>>

>> 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.

>>

>>

>>

>>

>>

>>

[Guest guest]

Pierre , I am glad that you can sleep through the dialysis. I am praying that

you will have your transplant before August.. that would be great!!!!! You

really deserve it. I will be praying and wishing you a new kidney! Jill

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

Re: Nocturnal hemodialysis

>

> I am glad you are able to sleep well on Nocturnal Pierre. I was concerned

> about you being able to get adequate rest.

>

> Your labs look just fantastic, and the freedom to eat what you want must

> be

> fantastic!

>

> Thank you for sharing the history of nocturnal. It makes perfect sense.

> I

> only know I am thankful you are on it but still looking forward to the

> day you

> have your new kidney and are off dialysis completely.

>

>

>

> In a message dated 6/22/2005 10:46:23 A.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> 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.

>

>

>

>

>

>

[Guest guest]

In a message dated 6/23/2005 5:24:15 A.M. Pacific Daylight Time,

pgl-groups@... writes:

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

Pierre - this is very encouraging news. Keeping you in my prayers...hugs,

Rita

[Guest guest]

Pierre,

The last two lines of your email were exciting to read. I'm certainly

praying that you won't have to wait much longer. Your posts are so

amazing. Thank you for sharing your experiences. You truly are an

inspiration and a blessing to the rest of us, especially those of us

who are new on this journey. I'm so excited you can enjoy so many

wonderful foods again. Hope you are able to sleep tonight as well.

B., Elisabet's mom

> 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

[Guest guest]

Thanks B, and everyone.

You know, not that I would refuse to check into the hospital if they ever

call me in, but, I'm of two minds about getting a transplant during the

summer. Summer is relatively short up here, and I'm not sure I want to spend

too much of it in the hospital. On the other hand, the Fall is pretty nice

too. Ah what the heck, I'll take it whenever it comes :-)

Pierre

Re: Nocturnal hemodialysis

> Pierre,

>

> The last two lines of your email were exciting to read. I'm certainly

> praying that you won't have to wait much longer. Your posts are so

> amazing. Thank you for sharing your experiences. You truly are an

> inspiration and a blessing to the rest of us, especially those of us

> who are new on this journey. I'm so excited you can enjoy so many

> wonderful foods again. Hope you are able to sleep tonight as well.

>

> B., Elisabet's mom

>

>

>

>> 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]

Just in case that transplant arises and interferes with your summer, you are

more than welcome to hang in California post transplant

Cy

Re: Nocturnal hemodialysis

>

>

>> Pierre,

>>

>> The last two lines of your email were exciting to read. I'm certainly

>> praying that you won't have to wait much longer. Your posts are so

>> amazing. Thank you for sharing your experiences. You truly are an

>> inspiration and a blessing to the rest of us, especially those of us

>> who are new on this journey. I'm so excited you can enjoy so many

>> wonderful foods again. Hope you are able to sleep tonight as well.

>>

>> B., Elisabet's mom

>>

>>

>>

>>> 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]

Pierre,

Out of all the things you have shared regarding your dialysis, this is

the best thing I have read that you have said.

I pray you won't need a dialysis appointment in August because you

will have your new kidney by then!

Re: Nocturnal hemodialysis

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

[Guest guest]

I second that Pierre! You have an open invitation to visit and enjoy

our CA sunshine.

Re: Nocturnal hemodialysis

Just in case that transplant arises and interferes with your summer,

you are

more than welcome to hang in California post transplant

C

[Guest guest]

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

Re: Nocturnal hemodialysis

>

> Just in case that transplant arises and interferes with your summer,

> you are

> more than welcome to hang in California post transplant

> C

>

>

>

[Guest guest]

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'm so happy to hear that your nocturnal dialysis is going well! You

truly continue to inspire us all. :-)

Amy G.

Re: Nocturnal hemodialysis

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 Pierre,

I know exactly what you mean.

When I met with the transplant surgeon recently, because Kris is

donating his kidney with me, it's really like elective surgery. I have a

little leeway - at 13% function - when I want to get this operation done.

The surgeon actually suggested having the operation done THIS

summer....like next month. Mainly because it seems there must be a

lot of free time in operating rooms or something. Anyways, I am very

reluctant to have my transplant done so early, since it does mean

missing my summer here in Calgary, when I can do all those outdoorsy

things.

I will agree with Cy and that spending post-tx in California (esp

San Diego) is VERY fine indeed....Sunny and 25 deg C by the beach

every day!

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]

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]

What a great idea! Let's all keep our fingers crossed.

Betsy

> 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

>

[Guest guest]

Cy, that would definitely be answered prayer!

In a message dated 6/25/2005 1:31:10 P.M. Pacific Daylight Time,

cyashleywebb@... writes:

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

[Guest guest]

I hope we can all get transplants this summer, Cy!

And as soon as the doc would let me post-tx, I will try to come to CA!

Sophia

> 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@s... 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]

Sophia:

The other way to look at that is to enjoy your summer healthy and with more

energy. There is no rule against being outside and walking - but there is one

about lifting weight (more than about 2 or 3 kilos is out of the question for 3

months).

Something to think about.

yipee_ladybug yipee_ladybug@...> wrote:

Hi Pierre,

I know exactly what you mean.

When I met with the transplant surgeon recently, because Kris is

donating his kidney with me, it's really like elective surgery. I have a

little leeway - at 13% function - when I want to get this operation done.

The surgeon actually suggested having the operation done THIS

summer....like next month. Mainly because it seems there must be a

lot of free time in operating rooms or something. Anyways, I am very

reluctant to have my transplant done so early, since it does mean

missing my summer here in Calgary, when I can do all those outdoorsy

things.

I will agree with Cy and that spending post-tx in California (esp

San Diego) is VERY fine indeed....Sunny and 25 deg C by the beach

every day!

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]

Wouldn't that be something?

Kathleen

Day #14 on the waiting list

> 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