Re: Surgery for Home Noctural Dialysis?

[Guest guest]

First, let me correct a factual mistake in that article on the Dr. Koop

website about this. The article states calcium is limited in the diet, and

that nocturnal hemo removes this restriction. In fact, it's phosphorus, not

calcium they are talking about. Phosphorus is never removed adequately on

regular 3 times per week hemodialysis nor on peritoneal dialysis, and so

very active restriction of phosphorus in the diet is necessary. As far as

hemodialysis goes, phosphorus is a large molecule, and it doesn't move out

of your body's tissues nor through the dialyzer very readily. A regular 4

hour hemodialysis treatment just isn't long enough to remove it to normal

levels, but the 7 or 8 hour nocturnal hemodialysis treatment is much better

at removing it, plus the fact that it's done 6 times per week means

virtually normal serum phosphorus.

Hemodialysis consists of blood being circulated outside the body, through

tubing and a " dialyzer " on a dialysis machine. The blood has to be taken out

of you and returned to you somehow, so, the method of choice is the fistula

I already mentioned. This fistula is the same whether you do your dialysis

at a dialysis centre or at home. It makes no difference.

The basic, conventional way of doing hemodialysis is by going to a dialysis

centre 3 times per week, each time for a 3-4 hour treatment. Some people may

have the opportunity to do their hemodialysis at home depending on whether a

home hemodialysis program exists where they live. This requires usually a

minimum of 6 weeks full-time daytime training, whereas the training for

peritoneal dialysis only takes a few days, a week at the most. Currently

there are three ways of doing hemodialysis at home, where available. One is

to do like our Ray does, which is the same 3 times per week 4 hour per

treatment method as they do in the dialysis centre, except it's done by the

patient and perhaps a helper at home. A second method is to do what is

called " short daily hemodialysis " . This consists of 2 hour treatments 5 or 6

days per week. The third is daily nocturnal hemodialysis, which is what I

do. This consists of 7 to 8 hour treatments 5 or 6 nights per week, while I

sleep. Patients who do the daily nocturnal kind usually have to option to do

a short daily treatment instead whenever they need to, as their personal

activities may demand, but it doesn't work the other way for short daily

hemo patients, because nocturnal hemodialysis requires a bit of additional

training which short daily patients do not have. Nocturnal hemo also

requires a machine which can do this, and not all dialysis machines used in

the home setting can.

If you want additional reading about daily nocturnal hemodialysis, I would

suggest doing a search on google.com for the words quotidian nocturnal

hemodialysis. This is because the medical profession refers to daily as

" quotidian " .

Many people are perfectly happy with conventional hemodialysis in a dialysis

centre. However, for comparison's sake, this is how the various methods

compare:

o- Start dialysis when kidney function (GFR) is about 10%

o- Conventional 3 times per week dialysis is the equivalent of about 10-15%

GFR

o- Short daily hemodialysis is the equivalent of about 20-25% GFR

o- Daily nocturnal hemodialysis is the equivalent of about 30-40% GFR

I don't use the term " home dialysis " for what I do, because peritoneal

dialysis is also referred to as home dialysis.

Pierre

Pierre

Surgery for Home Noctural Dialysis?

>

> Dear Members,

>

> My husband, Gordon, whose creatinine now is 6.8 has an appointment to see

> the surgeon on Tuesday. He wants to use the home nocturnal dialysis, but

> we have little knowledge as whether to use the surgery for hemodialysis or

> peritoneal dialysis. What is your experience with this? Thank you, Gordon

> & Phyllis

>

>

>

> Cy, I have save your reply about Home Nocturnal Hemodialysis from Mar 4,

> 2005:

>

> " I found a very interesting article on home hemo Dr. Koop's web page.

> Check it out!

>

> http://drkoop.com/newsdetail/93/522077.html "

>

>

[Guest guest]

Hi Phyllis,

I am so sorry that Gordon has progressed to the point that he needs to start

dialysis. How is he coping with that knowledge?

I am not yet on dialysis, but near needing that or a transplant and for me,

I was leaning towards PD because my job requires frequent travel. If Gordon

is home based, it sounds like daily nocturnal is the best way to go based on

Pierre's excellent response.

Pierre, I was wondering if you have the statistics for PD on what level that

brings you up to? Your post in reply to Phyllis was excellent and yet

another " keeper! "

In a message dated 9/24/2005 6:03:46 P.M. Pacific Daylight Time,

pjbpiano@... writes:

Dear Members,

My husband, Gordon, whose creatinine now is 6.8 has an appointment to see

the surgeon on Tuesday. He wants to use the home nocturnal dialysis, but we

have little knowledge as whether to use the surgery for hemodialysis or

peritoneal dialysis. What is your experience with this? Thank you, Gordon &

Phyllis

[Guest guest]

I don't have a level for PD, but I know it's about the same as conventional

hemodialysis. It may allow a bit more liberal diet for some in terms of

potassium and fluid (but not necessarily - it's really an individual thing).

However, it's not that good at removing phosphorus. There was a recent study

comparing PD and hemo which concluded that mortality is a bit higher with

PD.

Pierre

Re: Surgery for Home Noctural Dialysis?

>

> Hi Phyllis,

>

> I am so sorry that Gordon has progressed to the point that he needs to

> start

> dialysis. How is he coping with that knowledge?

>

> I am not yet on dialysis, but near needing that or a transplant and for

> me,

> I was leaning towards PD because my job requires frequent travel. If

> Gordon

> is home based, it sounds like daily nocturnal is the best way to go based

> on

> Pierre's excellent response.

>

> Pierre, I was wondering if you have the statistics for PD on what level

> that

> brings you up to? Your post in reply to Phyllis was excellent and yet

> another " keeper! "

>

>

>

> In a message dated 9/24/2005 6:03:46 P.M. Pacific Daylight Time,

> pjbpiano@... writes:

>

> Dear Members,

>

> My husband, Gordon, whose creatinine now is 6.8 has an appointment to see

> the surgeon on Tuesday. He wants to use the home nocturnal dialysis, but

> we

> have little knowledge as whether to use the surgery for hemodialysis or

> peritoneal dialysis. What is your experience with this? Thank you, Gordon

> & Phyllis

>

>

>

>

>

>

>

[Guest guest]

Thanks Pierre!

I had chosen PD to retain my ability to travel, but my Nephrologist now says

no to PD. They want me to have temporary catheter access instead hoping

that I will get a transplant in the near future. I guess that would put me on

3x a week hemo so my function would be about what it is now.

Have you had any communication from your transplant coordinator lately?

Where are you on your list?

In a message dated 9/25/2005 7:29:47 P.M. Pacific Daylight Time,

pgl-groups@... writes:

I don't have a level for PD, but I know it's about the same as conventional

hemodialysis. It may allow a bit more liberal diet for some in terms of

potassium and fluid (but not necessarily - it's really an individual thing).

However, it's not that good at removing phosphorus. There was a recent study

comparing PD and hemo which concluded that mortality is a bit higher with

PD.

Pierre

[Guest guest]

Hi Cy,

Yes and no. It was a blow, and a surprise, but it is just getting harder

and harder to keep up this travel schedule which has only gotten worse. I just

got back Friday from being gone 9 days, and am booked to travel every week

between now and October 21st. The good thing is that it will ground me and

force only one night trips and that will be very helpful.

I know my Neph called the head of the transplant department and has asked

that they push things through as fast as possible. They think it should be

before the end of the year.

I am trying to figure out how my job has transformed into such a heavy

travel schedule. It used to be once or twice a month, and now it is every week I

am on a plane somewhere. I can barely function on weekends now. I have to

say I am looking SO forward to no travel at all for 3 months post transplant!

In a message dated 9/26/2005 1:41:13 P.M. Pacific Daylight Time,

cyashleywebb@... writes:

Hi

I hope not having PD has an option wasn't too much of a blow. Sounds like

they are betting on you getting that transplant mighty quick. I worry about

you and your travels.

All the best,

Cy

[Guest guest]

Hi

I hope not having PD has an option wasn't too much of a blow. Sounds like

they are betting on you getting that transplant mighty quick. I worry about

you and your travels.

All the best,

Cy

Re: Surgery for Home Noctural Dialysis?

>

> Thanks Pierre!

>

> I had chosen PD to retain my ability to travel, but my Nephrologist now

> says

> no to PD. They want me to have temporary catheter access instead hoping

> that I will get a transplant in the near future. I guess that would put

> me on

> 3x a week hemo so my function would be about what it is now.

>

> Have you had any communication from your transplant coordinator lately?

> Where are you on your list?

>

>

>

> In a message dated 9/25/2005 7:29:47 P.M. Pacific Daylight Time,

> pgl-groups@... writes:

>

> I don't have a level for PD, but I know it's about the same as

> conventional

> hemodialysis. It may allow a bit more liberal diet for some in terms of

> potassium and fluid (but not necessarily - it's really an individual

> thing).

> However, it's not that good at removing phosphorus. There was a recent

> study

> comparing PD and hemo which concluded that mortality is a bit higher with

> PD.

>

> Pierre

>

>

>

>

>

>

[Guest guest]

Thank you Sophia! I hope you and Kris can get yours done soon, and

pre-dialysis too.

In a message dated 9/26/2005 5:38:34 P.M. Pacific Daylight Time,

yipee_ladybug@... writes:

Wow , I did not realize you had such a hectic schedule. I echo

Cy's concern about the extensive travel. Please rest yourself well and

I am praying for you for the transplant to come through quickly!

Sophia

[Guest guest]

Wow , I did not realize you had such a hectic schedule. I echo

Cy's concern about the extensive travel. Please rest yourself well and

I am praying for you for the transplant to come through quickly!

Sophia

>

> Hi Cy,

>

> Yes and no. It was a blow, and a surprise, but it is just getting

harder

> and harder to keep up this travel schedule which has only gotten

worse. I just

> got back Friday from being gone 9 days, and am booked to travel

every week

> between now and October 21st. The good thing is that it will ground

me and

> force only one night trips and that will be very helpful.

>

> I know my Neph called the head of the transplant department and has

asked

> that they push things through as fast as possible. They think it

should be

> before the end of the year.

>

> I am trying to figure out how my job has transformed into such a

heavy

> travel schedule. It used to be once or twice a month, and now it is

every week I

> am on a plane somewhere. I can barely function on weekends now.

I have to

> say I am looking SO forward to no travel at all for 3 months post

transplant!

>

>

>

> In a message dated 9/26/2005 1:41:13 P.M. Pacific Daylight Time,

> cyashleywebb@s... writes:

>

> Hi

>

> I hope not having PD has an option wasn't too much of a blow.

Sounds like

> they are betting on you getting that transplant mighty quick. I worry

about

> you and your travels.

>

> All the best,

>

> Cy

>

>

>

>

>

>

[Guest guest]

Hi

I think a temporary catheter is fine in a case like yours, because it will

be temporary. Should there be a change of plans re the transplant (not that

I expect that, but, you know things can happen) and you are on dialysis by

that time, they would simply continue to use the catheter until you can have

a fistula ready. I've seen many people get a fistula after having started

dialysis on a catheter. As I said in my previous post, there's some fairly

strong, recent research which suggests there is less mortality and morbidity

overall with hemodialysis (the opposite of what most people would have

assumed), so, perhaps not being able to go on PD is a blessing in disguise.

No, I haven't spoken to the transplant office since last winter. I was still

15th at that time. I don't know where I am now, and to be honest, I would

rather not know in case I've gone backwards on the list again. I'm doing

fine now, so, it's not like it's urgent that I get one.

Pierre

Re: Surgery for Home Noctural Dialysis?

>

> Thanks Pierre!

>

> I had chosen PD to retain my ability to travel, but my Nephrologist now

> says

> no to PD. They want me to have temporary catheter access instead hoping

> that I will get a transplant in the near future. I guess that would put

> me on

> 3x a week hemo so my function would be about what it is now.

>

> Have you had any communication from your transplant coordinator lately?

> Where are you on your list?

>

>

>

[Guest guest]

,

I am a firm believer that things happen as they should. Just when you

absolutely need a break from traveling...you will be getting one. I know that

all

things will work out for you because you are a blessed person who continues

to bless others with your kindness. You are never far from my thoughts.

Hugs, Rita

[Guest guest]

Hi There Pierre and ,

I have not visited this site for quite some

time now, How are you both going? Just to update you on my progress,

I am still on HD and I have had to come off the TX list. I found by

regular blood test at HD, my PSA level elevated. A biopsy revealed

prostate cancer. I had no physical symptoms. I opted for radical

prostetectamy. That happended six weeks ago today. Every thing is

ticking along again. Hopefully all the cancer is contained and no

further treatment is envisaged. Life is full of little surprises

isn't it? C'est la Vie!!

I notice, Pierre, you are on nocturnal HD and life is ticking

along for you these days. , still not on dialysis, you have

lasted well, someone must be working for you!

Derrick

Sydney Australia

> Hi

>

> I think a temporary catheter is fine in a case like yours, because

it will

> be temporary. Should there be a change of plans re the transplant

(not that

> I expect that, but, you know things can happen) and you are on

dialysis by

> that time, they would simply continue to use the catheter until you

can have

> a fistula ready. I've seen many people get a fistula after having

started

> dialysis on a catheter. As I said in my previous post, there's some

fairly

> strong, recent research which suggests there is less mortality and

morbidity

> overall with hemodialysis (the opposite of what most people would

have

> assumed), so, perhaps not being able to go on PD is a blessing in

disguise.

>

> No, I haven't spoken to the transplant office since last winter. I

was still

> 15th at that time. I don't know where I am now, and to be honest, I

would

> rather not know in case I've gone backwards on the list again. I'm

doing

> fine now, so, it's not like it's urgent that I get one.

>

> Pierre

>

> Re: Surgery for Home Noctural Dialysis?

>

>

> >

> > Thanks Pierre!

> >

> > I had chosen PD to retain my ability to travel, but my

Nephrologist now

> > says

> > no to PD. They want me to have temporary catheter access

instead hoping

> > that I will get a transplant in the near future. I guess that

would put

> > me on

> > 3x a week hemo so my function would be about what it is now.

> >

> > Have you had any communication from your transplant coordinator

lately?

> > Where are you on your list?

> >

> >

> >

[Guest guest]

Derrick:

I am so sorry to hear about the cancer and being taken off the list. Lucky it

sounds as if you caught it early enough. My thoughts and prayers go out to you.

Derrick Hartley derrickh@...> wrote:

Hi There Pierre and ,

I have not visited this site for quite some

time now, How are you both going? Just to update you on my progress,

I am still on HD and I have had to come off the TX list. I found by

regular blood test at HD, my PSA level elevated. A biopsy revealed

prostate cancer. I had no physical symptoms. I opted for radical

prostetectamy. That happended six weeks ago today. Every thing is

ticking along again. Hopefully all the cancer is contained and no

further treatment is envisaged. Life is full of little surprises

isn't it? C'est la Vie!!

I notice, Pierre, you are on nocturnal HD and life is ticking

along for you these days. , still not on dialysis, you have

lasted well, someone must be working for you!

Derrick

Sydney Australia

> Hi

>

> I think a temporary catheter is fine in a case like yours, because

it will

> be temporary. Should there be a change of plans re the transplant

(not that

> I expect that, but, you know things can happen) and you are on

dialysis by

> that time, they would simply continue to use the catheter until you

can have

> a fistula ready. I've seen many people get a fistula after having

started

> dialysis on a catheter. As I said in my previous post, there's some

fairly

> strong, recent research which suggests there is less mortality and

morbidity

> overall with hemodialysis (the opposite of what most people would

have

> assumed), so, perhaps not being able to go on PD is a blessing in

disguise.

>

> No, I haven't spoken to the transplant office since last winter. I

was still

> 15th at that time. I don't know where I am now, and to be honest, I

would

> rather not know in case I've gone backwards on the list again. I'm

doing

> fine now, so, it's not like it's urgent that I get one.

>

> Pierre

>

> Re: Surgery for Home Noctural Dialysis?

>

>

> >

> > Thanks Pierre!

> >

> > I had chosen PD to retain my ability to travel, but my

Nephrologist now

> > says

> > no to PD. They want me to have temporary catheter access

instead hoping

> > that I will get a transplant in the near future. I guess that

would put

> > me on

> > 3x a week hemo so my function would be about what it is now.

> >

> > Have you had any communication from your transplant coordinator

lately?

> > Where are you on your list?

> >

> >

> >

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]

Thank you for your reply; just found out today that Ohio Renal Group, HD and PD,

ties in with Cleveland Clinic. Ohio Renal Group is only licensed for home PD and

the HD centers, and is not licensed to do home hemo!! So! My husband would need

to change to University Hospital in junction with Cleveland Dialysis Center CDC,

which is licensed for home hemo.

In NE Ohio, seems as if every medical group is either tied in with Cleveland

Clinic or University Hospitals.

So the moral of the story: do some long-range planning and determine what your

end-stage preferences are, or one will be looped into the wrong system! My

husband, Gordon, has been going to Cleveland Clinic for 5 years, and now he

should change to receive the dialysis he prefers???

, maybe your recent PD roadblock is a blessing in disguise.

Thank you all for your kindness.

Prayers, Phyllis & Gordon

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

First, let me correct a factual mistake in that article on the Dr. Koop

website about this. The article states calcium is limited in the diet, and

that nocturnal hemo removes this restriction. In fact, it's phosphorus, not

calcium they are talking about. Phosphorus is never removed adequately on

regular 3 times per week hemodialysis nor on peritoneal dialysis, and so

very active restriction of phosphorus in the diet is necessary. As far as

hemodialysis goes, phosphorus is a large molecule, and it doesn't move out

of your body's tissues nor through the dialyzer very readily. A regular 4

hour hemodialysis treatment just isn't long enough to remove it to normal

levels, but the 7 or 8 hour nocturnal hemodialysis treatment is much better

at removing it, plus the fact that it's done 6 times per week means

virtually normal serum phosphorus.

Hemodialysis consists of blood being circulated outside the body, through

tubing and a " dialyzer " on a dialysis machine. The blood has to be taken out

of you and returned to you somehow, so, the method of choice is the fistula

I already mentioned. This fistula is the same whether you do your dialysis

at a dialysis centre or at home. It makes no difference.

The basic, conventional way of doing hemodialysis is by going to a dialysis

centre 3 times per week, each time for a 3-4 hour treatment. Some people may

have the opportunity to do their hemodialysis at home depending on whether a

home hemodialysis program exists where they live. This requires usually a

minimum of 6 weeks full-time daytime training, whereas the training for

peritoneal dialysis only takes a few days, a week at the most. Currently

there are three ways of doing hemodialysis at home, where available. One is

to do like our Ray does, which is the same 3 times per week 4 hour per

treatment method as they do in the dialysis centre, except it's done by the

patient and perhaps a helper at home. A second method is to do what is

called " short daily hemodialysis " . This consists of 2 hour treatments 5 or 6

days per week. The third is daily nocturnal hemodialysis, which is what I

do. This consists of 7 to 8 hour treatments 5 or 6 nights per week, while I

sleep. Patients who do the daily nocturnal kind usually have to option to do

a short daily treatment instead whenever they need to, as their personal

activities may demand, but it doesn't work the other way for short daily

hemo patients, because nocturnal hemodialysis requires a bit of additional

training which short daily patients do not have. Nocturnal hemo also

requires a machine which can do this, and not all dialysis machines used in

the home setting can.

If you want additional reading about daily nocturnal hemodialysis, I would

suggest doing a search on google.com for the words quotidian nocturnal

hemodialysis. This is because the medical profession refers to daily as

" quotidian " .

Many people are perfectly happy with conventional hemodialysis in a dialysis

centre. However, for comparison's sake, this is how the various methods

compare:

o- Start dialysis when kidney function (GFR) is about 10%

o- Conventional 3 times per week dialysis is the equivalent of about 10-15%

GFR

o- Short daily hemodialysis is the equivalent of about 20-25% GFR

o- Daily nocturnal hemodialysis is the equivalent of about 30-40% GFR

I don't use the term " home dialysis " for what I do, because peritoneal

dialysis is also referred to as home dialysis.

Pierre

Pierre

Surgery for Home Noctural Dialysis?

>

> Dear Members,

>

> My husband, Gordon, whose creatinine now is 6.8 has an appointment to see

> the surgeon on Tuesday. He wants to use the home nocturnal dialysis, but

> we have little knowledge as whether to use the surgery for hemodialysis or

> peritoneal dialysis. What is your experience with this? Thank you, Gordon

> & Phyllis

>

>

>

> Cy, I have save your reply about Home Nocturnal Hemodialysis from Mar 4,

> 2005:

>

> " I found a very interesting article on home hemo Dr. Koop's web page.

> Check it out!

>

> http://drkoop.com/newsdetail/93/522077.html "

>

>

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]

Derrick!

It's great to hear from you - but I'm sorry to hear your news. I never

would have imagined they would have done PSA tests with regular HD blood

work. Your decision to go with the radical surgery sounds like a wise one.

How are you feeling now? Are you quite healed from it? How has your life

with HD been going?

I think of you often. You were one of the first folks here to start

dialysis when I first joined this list and you were a big inspiration.

All the best,

Cy

Re: Surgery for Home Noctural Dialysis?

>>

>>

>> >

>> > Thanks Pierre!

>> >

>> > I had chosen PD to retain my ability to travel, but my

> Nephrologist now

>> > says

>> > no to PD. They want me to have temporary catheter access

> instead hoping

>> > that I will get a transplant in the near future. I guess that

> would put

>> > me on

>> > 3x a week hemo so my function would be about what it is now.

>> >

>> > Have you had any communication from your transplant coordinator

> lately?

>> > Where are you on your list?

>> >

>> >

>> >

>

>

>

>

>

> 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]

Phyllis,

How frustrating! I take it this would mean that if the change is possible,

Gordon would have to get a new neph? I'ed be tearing my hair in anger.

What a choice to have to make!

Cy

Surgery for Home Noctural Dialysis?

>

>

>>

>> Dear Members,

>>

>> My husband, Gordon, whose creatinine now is 6.8 has an appointment to see

>> the surgeon on Tuesday. He wants to use the home nocturnal dialysis, but

>> we have little knowledge as whether to use the surgery for hemodialysis

>> or

>> peritoneal dialysis. What is your experience with this? Thank you, Gordon

>> & Phyllis

>>

>>

>>

>> Cy, I have save your reply about Home Nocturnal Hemodialysis from Mar 4,

>> 2005:

>>

>> " I found a very interesting article on home hemo Dr. Koop's web page.

>> Check it out!

>>

>> http://drkoop.com/newsdetail/93/522077.html "

>>

>>

>

>

>

> 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]

Thanks ,

I am on the mend 6 weeks after the op, still a little

way to go but doing well. The prognosis is as good as it gets. I may

have to wait at least a year and maybe two before I get back on the

transplant list. Strabge, having cancer did not worry me as much as

being taken of the tx list.

Catch you down the track

Derrick

Sydney Australia

> > Hi

> >

> > I think a temporary catheter is fine in a case like yours,

because

> it will

> > be temporary. Should there be a change of plans re the transplant

> (not that

> > I expect that, but, you know things can happen) and you are on

> dialysis by

> > that time, they would simply continue to use the catheter until

you

> can have

> > a fistula ready. I've seen many people get a fistula after having

> started

> > dialysis on a catheter. As I said in my previous post, there's

some

> fairly

> > strong, recent research which suggests there is less mortality

and

> morbidity

> > overall with hemodialysis (the opposite of what most people would

> have

> > assumed), so, perhaps not being able to go on PD is a blessing in

> disguise.

> >

> > No, I haven't spoken to the transplant office since last winter.

I

> was still

> > 15th at that time. I don't know where I am now, and to be honest,

I

> would

> > rather not know in case I've gone backwards on the list again.

I'm

> doing

> > fine now, so, it's not like it's urgent that I get one.

> >

> > Pierre

> >

> > Re: Surgery for Home Noctural Dialysis?

> >

> >

> > >

> > > Thanks Pierre!

> > >

> > > I had chosen PD to retain my ability to travel, but my

> Nephrologist now

> > > says

> > > no to PD. They want me to have temporary catheter access

> instead hoping

> > > that I will get a transplant in the near future. I guess that

> would put

> > > me on

> > > 3x a week hemo so my function would be about what it is now.

> > >

> > > Have you had any communication from your transplant

coordinator

> lately?

> > > Where are you on your list?

> > >

> > >

> > >

>

>

>

>

> 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]

Let me tell you, the type of treatment you get for esrd is a lot more

important than the neph you happen to have at any given time. They pretty

much just follow the numbers when you're on dialysis anyway. Things are

pretty standardized. What you're looking for at that point is the quality of

the dialysis centre or the transplant centre, and in the U.S., people do

switch to get the treatment they want (because as you found out, not all

centres offer all types of dialysis). Most people who start dialysis,

whatever kind, don't keep the same nephrologist as before anyway. Your

pre-dialysis neph refers you to a dialysis centre and you go from there with

whatever neph they have (and they change often).

Pierre

> Surgery for Home Noctural Dialysis?

>>

>>

>>>

>>> Dear Members,

>>>

>>> My husband, Gordon, whose creatinine now is 6.8 has an appointment to

>>> see

>>> the surgeon on Tuesday. He wants to use the home nocturnal dialysis, but

>>> we have little knowledge as whether to use the surgery for hemodialysis

>>> or

>>> peritoneal dialysis. What is your experience with this? Thank you,

>>> Gordon

>>> & Phyllis

>>>

>>>

>>>

>>> Cy, I have save your reply about Home Nocturnal Hemodialysis from Mar 4,

>>> 2005:

>>>

>>> " I found a very interesting article on home hemo Dr. Koop's web page.

>>> Check it out!

>>>

>>> http://drkoop.com/newsdetail/93/522077.html "

>>>

>>>

>>

>>

>>

>> 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]

Hi Phyllis and Gordon,

That has to be an unwelcome surprise to find out Gordon will have to change

Nephs to get home hemo. I am so sorry to hear that. Has he made an

appointment yet with a new Neph?

I wish he was not in a place where these decisions needed to be made.

God bless you both as you make this transition to dialysis.

In a message dated 9/27/2005 5:36:11 P.M. Pacific Daylight Time,

pjbpiano@... writes:

So the moral of the story: do some long-range planning and determine what

your end-stage preferences are, or one will be looped into the wrong system! My

husband, Gordon, has been going to Cleveland Clinic for 5 years, and now he

should change to receive the dialysis he prefers???

, maybe your recent PD roadblock is a blessing in disguise.

Thank you all for your kindness.

Prayers, Phyllis & Gordon

[Guest guest]

Thank you all for replying, Pierre, Cy, , and all,

Tuesday, October 11---With tears in my eyes, I never expected the possible

transplant idea: I'm usually praying for others for their transplants. After

being on a transplant list for 5 years with Cleveland Clinic Foundation (CCF),

we received a call from the transplant center, Tuesday, 1:10 a.m., that they had

a kidney for Gordon; twelve hours later, about 2 p.m., surgery began. He's on

strong anti-rejection meds and the medical team is positive about his body's

acceptance. Supposedly, he will be on Cellcept instead of prednisone for one of

the long-term anti-rejection meds.

And on that very day wanting to be a possible donor for her dad, our daughter

received her initial tissue-typing kit; she's continuing with the process.

Gordon's donor was a brain-dead person and we are very grateful for this

anonymous donor and the family.

IHN, Phyllis & Gordon

W4JC@... wrote:

Hi Phyllis and Gordon,

That has to be an unwelcome surprise to find out Gordon will have to change

Nephs to get home hemo. I am so sorry to hear that. Has he made an

appointment yet with a new Neph?

I wish he was not in a place where these decisions needed to be made.

God bless you both as you make this transition to dialysis.

In a message dated 9/27/2005 5:36:11 P.M. Pacific Daylight Time,

pjbpiano@... writes:

So the moral of the story: do some long-range planning and determine what

your end-stage preferences are, or one will be looped into the wrong system! My

husband, Gordon, has been going to Cleveland Clinic for 5 years, and now he

should change to receive the dialysis he prefers???

, maybe your recent PD roadblock is a blessing in disguise.

Thank you all for your kindness.

Prayers, Phyllis & Gordon

[Guest guest]

Wow, that is wonderful news in a way that words just can't express. Tell

Gordon we have 2000 people here pulling for that new kidney!

Please keep us posted.

Pierre

Re: Surgery for Home Noctural Dialysis?

> Thank you all for replying, Pierre, Cy, , and all,

> Tuesday, October 11---With tears in my eyes, I never expected the possible

> transplant idea: I'm usually praying for others for their transplants.

> After being on a transplant list for 5 years with Cleveland Clinic

> Foundation (CCF), we received a call from the transplant center, Tuesday,

> 1:10 a.m., that they had a kidney for Gordon; twelve hours later, about 2

> p.m., surgery began. He's on strong anti-rejection meds and the medical

> team is positive about his body's acceptance. Supposedly, he will be on

> Cellcept instead of prednisone for one of the long-term anti-rejection

> meds.

> And on that very day wanting to be a possible donor for her dad, our

> daughter received her initial tissue-typing kit; she's continuing with the

> process.

> Gordon's donor was a brain-dead person and we are very grateful for this

> anonymous donor and the family.

> IHN, Phyllis & Gordon

>

>

> W4JC@... wrote:

>

> Hi Phyllis and Gordon,

>

> That has to be an unwelcome surprise to find out Gordon will have to

> change

> Nephs to get home hemo. I am so sorry to hear that. Has he made an

> appointment yet with a new Neph?

>

> I wish he was not in a place where these decisions needed to be made.

>

> God bless you both as you make this transition to dialysis.

>

>

>

> In a message dated 9/27/2005 5:36:11 P.M. Pacific Daylight Time,

> pjbpiano@... writes:

>

> So the moral of the story: do some long-range planning and determine what

> your end-stage preferences are, or one will be looped into the wrong

> system! My

> husband, Gordon, has been going to Cleveland Clinic for 5 years, and now

> he

> should change to receive the dialysis he prefers???

> , maybe your recent PD roadblock is a blessing in disguise.

> Thank you all for your kindness.

> Prayers, Phyllis & Gordon

>

>

>

>

>

>

[Guest guest]

Phyllis and Gordon,

What wonderful news, I will continue to pray for your family as Gordon recovers.

Please keep us posted on his progress. I have just started this journey with

IgAN, and I can only imagine what some of things things you were feeling and

going through. God's blessings to you and your family and to the family of your

donor.

Pam

Phyllis pjbpiano@...> wrote:

Thank you all for replying, Pierre, Cy, , and all,

Tuesday, October 11---With tears in my eyes, I never expected the possible

transplant idea: I'm usually praying for others for their transplants. After

being on a transplant list for 5 years with Cleveland Clinic Foundation (CCF),

we received a call from the transplant center, Tuesday, 1:10 a.m., that they had

a kidney for Gordon; ...

[Guest guest]

Phyllis and Gordon,

Congratulation and we wish you the best with new kidney and quick recovery.

God Bless You.

Jolanta and Jozef

Phyllis pjbpiano@...> wrote:

Thank you all for replying, Pierre, Cy, , and all,

Tuesday, October 11---With tears in my eyes, I never expected the possible

transplant idea: I'm usually praying for others for their transplants. After

being on a transplant list for 5 years with Cleveland Clinic Foundation (CCF),

we received a call from the transplant center, Tuesday, 1:10 a.m., that they had

a kidney for Gordon; twelve hours later, about 2 p.m., surgery began. He's on

strong anti-rejection meds and the medical team is positive about his body's

acceptance. Supposedly, he will be on Cellcept instead of prednisone for one of

the long-term anti-rejection meds.

And on that very day wanting to be a possible donor for her dad, our daughter

received her initial tissue-typing kit; she's continuing with the process.

Gordon's donor was a brain-dead person and we are very grateful for this

anonymous donor and the family.

IHN, Phyllis & Gordon

W4JC@... wrote:

Hi Phyllis and Gordon,

That has to be an unwelcome surprise to find out Gordon will have to change

Nephs to get home hemo. I am so sorry to hear that. Has he made an

appointment yet with a new Neph?

I wish he was not in a place where these decisions needed to be made.

God bless you both as you make this transition to dialysis.

In a message dated 9/27/2005 5:36:11 P.M. Pacific Daylight Time,

pjbpiano@... writes:

So the moral of the story: do some long-range planning and determine what

your end-stage preferences are, or one will be looped into the wrong system! My

husband, Gordon, has been going to Cleveland Clinic for 5 years, and now he

should change to receive the dialysis he prefers???

, maybe your recent PD roadblock is a blessing in disguise.

Thank you all for your kindness.

Prayers, Phyllis & Gordon

[Guest guest]

Phyllis,

I am so happy for you and for your husband! I'm glad to hear that the

doctors are very positive about the transplant, and that the operation

went well.

Sophia

>

> Hi Phyllis and Gordon,

>

> That has to be an unwelcome surprise to find out Gordon will have to

change

> Nephs to get home hemo. I am so sorry to hear that. Has he made

an

> appointment yet with a new Neph?

>

> I wish he was not in a place where these decisions needed to be

made.

>

> God bless you both as you make this transition to dialysis.

>

>

>

> In a message dated 9/27/2005 5:36:11 P.M. Pacific Daylight Time,

> pjbpiano@y... writes:

>

> So the moral of the story: do some long-range planning and

determine what

> your end-stage preferences are, or one will be looped into the wrong

system! My

> husband, Gordon, has been going to Cleveland Clinic for 5 years, and

now he

> should change to receive the dialysis he prefers???

> , maybe your recent PD roadblock is a blessing in disguise.

> Thank you all for your kindness.

> Prayers, Phyllis & Gordon

>

>

>

>

>

>

[Guest guest]

Phyllis:

I am so happy for you and Gordon. May all you prayers continue to be answered,

and welcome Gordon to our tx club for me.

Phyllis pjbpiano@...> wrote:

Thank you all for replying, Pierre, Cy, , and all,

Tuesday, October 11---With tears in my eyes, I never expected the possible

transplant idea: I'm usually praying for others for their transplants. After

being on a transplant list for 5 years with Cleveland Clinic Foundation (CCF),

we received a call from the transplant center, Tuesday, 1:10 a.m., that they had

a kidney for Gordon; twelve hours later, about 2 p.m., surgery began. He's on

strong anti-rejection meds and the medical team is positive about his body's

acceptance. Supposedly, he will be on Cellcept instead of prednisone for one of

the long-term anti-rejection meds.

And on that very day wanting to be a possible donor for her dad, our daughter

received her initial tissue-typing kit; she's continuing with the process.

Gordon's donor was a brain-dead person and we are very grateful for this

anonymous donor and the family.

IHN, Phyllis & Gordon

W4JC@... wrote:

Hi Phyllis and Gordon,

That has to be an unwelcome surprise to find out Gordon will have to change

Nephs to get home hemo. I am so sorry to hear that. Has he made an

appointment yet with a new Neph?

I wish he was not in a place where these decisions needed to be made.

God bless you both as you make this transition to dialysis.

In a message dated 9/27/2005 5:36:11 P.M. Pacific Daylight Time,

pjbpiano@... writes:

So the moral of the story: do some long-range planning and determine what

your end-stage preferences are, or one will be looped into the wrong system! My

husband, Gordon, has been going to Cleveland Clinic for 5 years, and now he

should change to receive the dialysis he prefers???

, maybe your recent PD roadblock is a blessing in disguise.

Thank you all for your kindness.

Prayers, Phyllis & Gordon

[Guest guest]

What great timing! Just before the winter holidays... Gordon will be up and

going full speed for Thanksgiving.

Congrats to both of you. I know it's been a long haul for your family.

Cy

Re: Surgery for Home Noctural Dialysis?

> Thank you all for replying, Pierre, Cy, , and all,

> Tuesday, October 11---With tears in my eyes, I never expected the possible

> transplant idea: I'm usually praying for others for their transplants.

> After being on a transplant list for 5 years with Cleveland Clinic

> Foundation (CCF), we received a call from the transplant center, Tuesday,

> 1:10 a.m., that they had a kidney for Gordon; twelve hours later, about 2

> p.m., surgery began. He's on strong anti-rejection meds and the medical

> team is positive about his body's acceptance. Supposedly, he will be on

> Cellcept instead of prednisone for one of the long-term anti-rejection

> meds.

> And on that very day wanting to be a possible donor for her dad, our

> daughter received her initial tissue-typing kit; she's continuing with the

> process.

> Gordon's donor was a brain-dead person and we are very grateful for this

> anonymous donor and the family.

> IHN, Phyllis & Gordon

>

>

> W4JC@... wrote:

>

> Hi Phyllis and Gordon,

>

> That has to be an unwelcome surprise to find out Gordon will have to

> change

> Nephs to get home hemo. I am so sorry to hear that. Has he made an

> appointment yet with a new Neph?

>

> I wish he was not in a place where these decisions needed to be made.

>

> God bless you both as you make this transition to dialysis.

>

>

>

> In a message dated 9/27/2005 5:36:11 P.M. Pacific Daylight Time,

> pjbpiano@... writes:

>

> So the moral of the story: do some long-range planning and determine what

> your end-stage preferences are, or one will be looped into the wrong

> system! My

> husband, Gordon, has been going to Cleveland Clinic for 5 years, and now

> he

> should change to receive the dialysis he prefers???

> , maybe your recent PD roadblock is a blessing in disguise.

> Thank you all for your kindness.

> Prayers, Phyllis & Gordon

>

>

>

>

>

>