Coming out of Lurkdom....

[Guest guest]

Hi everyone ** sorry this may be long! **

I have been lurking for a while and decided it's about time I

introduced myself :-)) I have been a member for a few months and

have found this group so helpful and learnt heaps. We live down

under in New Zealand (any other kiwis on this group???)

My hubby Dennis was diagnosed with IGA in April after having a

biopsy. At that stage he was told his kidney function was 50%, and

that a transplant would be inevitable, but they couldn't put a

timeline on it ... possibly two years, or five, but probably within

10. We were quite shocked at the % then, but they didn't seem

phased at all - they told us you can get down to 10% before dialysis

is required. (Obviously I have learnt more since then through

this website). He had probably had the disease for 10 years already

at that stage, as he had periodic episodes of blood in his urine

when he would get flu-like symptoms, say every couple of years. He

also had high blood pressure and was on two medications for this.

We didn't really get given much information at all at the time of

the biopsy. Only because we were asking the registrar heaps of

questions he gave us a book called " Living with Kidney Failure " by

the NZ Kidney Foundation, which he said they don't usually hand out

at that early stage (too much information perhaps!).

Since the diagnosis we have seen the specialist once in June. He

had a slight decline then to about 40%. We were told we'd see him

again in November (we see him in an outpatients clinic as he comes

over to our area a couple of times a year). At this stage he was

going to change one of Dennis' BP medications as it was causing him

to have an irritating cough (Inhibace). The medication he wanted

to try him on (Candesartan) had to be approved by the Ministry of

Health, which I ended up chasing up through our local GP, as the

approval never came through. I don't think it got followed up along

the way somewhere! The other main concern Dennis had was the

fatigue! He is still working fulltime, but nowhere near to the

extent that he has been able to in the past. He is self-employed as

an engineer (fitter/welder). We were told that when his

haemoglobin got down to 100 g/L he would be eligible for

erythropoeitin (epo) injection which would give him a boost. At

his June appt his Hg was 130. Not sure of his creatinine.

By this stage our GP was wanting to do monthly blood tests to keep

track of his function. They continued to show a decline

unfortunately. We use a different scale down here, so a lot of the

figures I read on this site have no relation to what I am

getting ... e.g. July his creatinine was 0.35 mmol/L (recommended

range is 0.05-0.11). I have tried to do the conversion but can't

get it to work out! Never mind. Our GP told us that it's a worry

at 0.45. Dialysis is a definite at 0.5, or between 0.45-0.5,

depending on how unwell you are feeling.

August creat was 0.39, Hg 104.

This week's blood test creat was 0.46, Hg 102, and 20% function.

This prompted a phone call to Dennis at work from the specialist!

Looks like things are moving along a bit, and we are now expecting

to hear from the transplant coordinator and the dialysis coordinator

shortly!

And Dennis has to decide what type of dialysis to prepare for, and

let the spec. know in November! And have the fistula prepared now

if that's the type of dialysis he wants. He still thinks it'll be

about 12 months before tx is necessary tho.

Just to enlighten you a little, we live in a small town on the west

coast, south island. The neph is based about three hours away on

the other side of the island, hence the visits to the coast several

times a year.

We still have a lot to find out about dialysis, I'm not even sure if

there are facilities on the coast. Apparently you can do it at

home. The neph was telling Dennis they have the best results with

overnight dialysis while you are asleep ... I've read some of the

earlier posts about that so found it quite interesting that it was

suggested. And I'm not sure how fussed I am about home dialysis!!

Oh well, sorry to have rambled on so much, just quite a

lot to take in I guess. BTW I am intending to get tested as a

possible donor, as are a few family members/friends, hopefully!

thanks to you all for your wisdom and support

cheers from NZ

[Guest guest]

Hi ,

Welcome to you and Dennis, although I am so sorry he has progressed enough to

find your way here and to be having to consider dialysis options. It has to be

hard to watch your spouse declining like he unfortunately has.

I completely understand the fatigue factor being hard to deal with. The

encouragement I can offer you there is that if he soon starts Epo injections for

the anemia, that does help tremendously and it sounds like he is right at the

point of that being started.

I hope you are a match and able to donate a kidney to him. What a tremendous

blessing you are to be willing to give your kidney to your husband. That is an

amazing love.

I am not sure if you have found your way to our sister site yet at www.igan.ca,

but if not, there is a great accounting of both PD ('s story) and

hemodialysis (Pierre, our founder's story) that you and Dennis may find helpful.

I am glad you came out of lurkdom and posted!

Welcome again,

In a message dated 10/7/2004 2:21:33 AM Eastern Daylight Time, " Cadigan "

writes:

>

>

>

>Hi everyone   ** sorry this may be long! **

>I have been lurking for a while and decided it's about time I

>introduced myself  :-))  I have been a member for a few months and

>have found this group so helpful and learnt heaps.   We live down

>under in New Zealand (any other kiwis on this group???)

>My hubby Dennis was diagnosed with IGA in April after having a

>biopsy.  At that stage he was told his kidney function was 50%, and

>that a transplant would be inevitable, but they couldn't put a

>timeline on it ... possibly two years, or five, but probably within

>10.  We were quite shocked at the % then, but they didn't seem

>phased at all - they told us you can get down to 10% before dialysis

>is required.  (Obviously I have learnt more since then through

>this website).  He had probably had the disease for 10 years already

>at that stage, as he had periodic episodes of blood in his urine

>when he would get flu-like symptoms, say every couple of years.  He

>also had high blood pressure and was on two medications for this.  

>We didn't really get given much information at all at the time of

>the biopsy.  Only because we were asking the registrar heaps of

>questions he gave us a book called " Living with Kidney Failure " by

>the NZ Kidney Foundation, which he said they don't usually hand out

>at that early stage (too much information perhaps!).

>Since the diagnosis we have seen the specialist once in June.  He

>had a slight decline then to about 40%.  We were told we'd see him

>again in November (we see him in an outpatients clinic as he comes

>over to our area a couple of times a year).  At this stage he was

>going to change one of Dennis' BP medications as it was causing him

>to have an irritating cough (Inhibace).   The medication he wanted

>to try him on (Candesartan) had to be approved by the Ministry of

>Health, which I ended up chasing up through our local GP, as the

>approval never came through.  I don't think it got followed up along

>the way somewhere!   The other main concern Dennis had was the

>fatigue!  He is still working fulltime, but nowhere near to the

>extent that he has been able to in the past.  He is self-employed as

>an engineer (fitter/welder).    We were told that when his

>haemoglobin got down to 100 g/L he would be eligible for

>erythropoeitin (epo) injection which would give him a boost.   At

>his June appt his Hg was 130.  Not sure of his creatinine.

>By this stage our GP was wanting to do monthly blood tests to keep

>track of his function.   They continued to show a decline

>unfortunately.   We use a different scale down here, so a lot of the

>figures I read on this site have no relation to what I am

>getting ... e.g. July his creatinine was 0.35 mmol/L  (recommended

>range is 0.05-0.11).  I have tried to do the conversion but can't

>get it to work out!  Never mind.  Our GP told us that it's a worry

>at 0.45.   Dialysis is a definite at 0.5, or between 0.45-0.5,

>depending on how unwell you are feeling.

>August creat was 0.39,  Hg 104.

>This week's blood test creat was 0.46, Hg 102, and 20% function.  

>This prompted a phone call to Dennis at work from the specialist!  

>Looks like things are moving along a bit, and we are now expecting

>to hear from the transplant coordinator and the dialysis coordinator

>shortly!  

>And Dennis has to decide what type of dialysis to prepare for, and

>let the spec. know in November!   And have the fistula prepared now

>if that's the type of dialysis he wants.  He still thinks it'll be

>about 12 months before tx is necessary tho.

>Just to enlighten you a little, we live in a small town on the west

>coast, south island.  The neph is based about three hours away on

>the other side of the island, hence the visits to the coast several

>times a year.  

>We still have a lot to find out about dialysis, I'm not even sure if

>there are facilities on the coast.  Apparently you can do it at

>home.  The neph was telling Dennis they have the best results with

>overnight dialysis while you are asleep ... I've read some of the

>earlier posts about that so found it quite interesting that it was

>suggested.  And I'm not sure how fussed I am about home dialysis!!

>Oh well, sorry to have rambled on so much, just quite a

>lot to take in I guess.  BTW I am intending to get tested as a

>possible donor, as are a few family members/friends, hopefully!

>thanks to you all for your wisdom and support

>cheers from NZ

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>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

I'm glad you were confortable enough with our group to de-lurk.

Sorry to hear that your husband has progressed so quickly. It happens to

some, and there is unfortunately no rhyme or reason to explain it. We're

here to help in any way we can, even if it's just to listen.

That book " Living with Kidney Failure " is a popular one, and a good one too.

The Kidney Foundation of Canada also gives it out to patients via the

pre-dialysis classes. I guess the whole British Commonwealth uses the same

one. Not sure about the U.S., but I suspect they do too, with some words

spelled differently.

I know what that fatigue is like. I experienced it, and nobody really

understood the extent of it. To this day, I'm convinced many people thought

I was just a malingerer until I actually had to start dialysis. I had no

energy at all. Not every approaching renal failure gets the fatigue to the

same extent, but it can be pretty bad. Your husband is lucky to have your

support.

I think I can help relate the numbers to what we see more commonly on here.

In the U.S., serum creatinine is measured in milligrams per deciliter. In

Canada, where I live, and most of the rest of the world, it's measured in

the SI system (SI stands for Systeme International, which basically just

means the standardised metric system of measurement). In the SI system,

serum creatinine is measured in micromoles per liter. This is abbreviated as

the Greek symbol for micro (a little " u " with a tail on it), but, since

that's hard to type on a computer, most of the time, it's abbreviated as

mmol/litre. So, when I started dialysis, my creatinine was about 500 mmol/L.

Now, in New Zealand and I think Australia too, they seem to use the same

system, except, instead of using micromoles per litre, they express the

number in millimoles per litre. The abbrevation for millimoles is of course,

mmol, so, the same as the one often used for micromoles (on the internet,

you will see micromoles abbreviated as umol/L or mmol/L. To convert from

your NZ measurements to SI, just move the decimal point 3 places to the

right, where 0.5 becomes 500. Then, if you want to compare with the same

number would be in the U.S.A, use the standard conversion from SI to mg/dl.

That's all there is to it. The other numbers are the same as they would be

in Canada, the U.K., Europe and other places, as far as I know. Your

husband's hemoglobin number appears to be the same as mine, for example.

It sounds like your husband is choosing hemodialysis, which is the one where

you need a fistula. That's the kind I chose. If so, it's important to get

the fistula surgery done as soon as possible, because it can take up to 4

months to mature before use. I had my surgery in April, and I ended up

started dialysis in October. Things get a little unpredictable nearing the

end. You can be on dialysis sooner or later than expected, and serum

creatinine can jump around up and down. I don't know about NZ, but here in

Canada, home hemodialysis, when and where available (it's hard to get into

that program here), requires that a spouse or partner of some kind be

trained along with the patient. By the end, you will virtually be a dialysis

technician. Home dialysis obviously also requires that the patient and

partner be able to insert the needles.

I want to say that it is absolutely wonderful that you intend to be a

potential donor. I'm sure your husband will be most appreciative of that,

even if you don't end up matching.

Thanks for posting. It's unfortunate that your husband has this, but I'm

always interested in hearing other people's stories.

Pierre

Coming out of Lurkdom....

>

>

>

> Hi everyone ** sorry this may be long! **

> I have been lurking for a while and decided it's about time I

> introduced myself :-)) I have been a member for a few months and

> have found this group so helpful and learnt heaps. We live down

> under in New Zealand (any other kiwis on this group???)

> My hubby Dennis was diagnosed with IGA in April after having a

> biopsy. At that stage he was told his kidney function was 50%, and

> that a transplant would be inevitable, but they couldn't put a

> timeline on it ... possibly two years, or five, but probably within

> 10. We were quite shocked at the % then, but they didn't seem

> phased at all - they told us you can get down to 10% before dialysis

> is required. (Obviously I have learnt more since then through

> this website). He had probably had the disease for 10 years already

> at that stage, as he had periodic episodes of blood in his urine

> when he would get flu-like symptoms, say every couple of years. He

> also had high blood pressure and was on two medications for this.

> We didn't really get given much information at all at the time of

> the biopsy. Only because we were asking the registrar heaps of

> questions he gave us a book called " Living with Kidney Failure " by

> the NZ Kidney Foundation, which he said they don't usually hand out

> at that early stage (too much information perhaps!).

> Since the diagnosis we have seen the specialist once in June. He

> had a slight decline then to about 40%. We were told we'd see him

> again in November (we see him in an outpatients clinic as he comes

> over to our area a couple of times a year). At this stage he was

> going to change one of Dennis' BP medications as it was causing him

> to have an irritating cough (Inhibace). The medication he wanted

> to try him on (Candesartan) had to be approved by the Ministry of

> Health, which I ended up chasing up through our local GP, as the

> approval never came through. I don't think it got followed up along

> the way somewhere! The other main concern Dennis had was the

> fatigue! He is still working fulltime, but nowhere near to the

> extent that he has been able to in the past. He is self-employed as

> an engineer (fitter/welder). We were told that when his

> haemoglobin got down to 100 g/L he would be eligible for

> erythropoeitin (epo) injection which would give him a boost. At

> his June appt his Hg was 130. Not sure of his creatinine.

> By this stage our GP was wanting to do monthly blood tests to keep

> track of his function. They continued to show a decline

> unfortunately. We use a different scale down here, so a lot of the

> figures I read on this site have no relation to what I am

> getting ... e.g. July his creatinine was 0.35 mmol/L (recommended

> range is 0.05-0.11). I have tried to do the conversion but can't

> get it to work out! Never mind. Our GP told us that it's a worry

> at 0.45. Dialysis is a definite at 0.5, or between 0.45-0.5,

> depending on how unwell you are feeling.

> August creat was 0.39, Hg 104.

> This week's blood test creat was 0.46, Hg 102, and 20% function.

> This prompted a phone call to Dennis at work from the specialist!

> Looks like things are moving along a bit, and we are now expecting

> to hear from the transplant coordinator and the dialysis coordinator

> shortly!

> And Dennis has to decide what type of dialysis to prepare for, and

> let the spec. know in November! And have the fistula prepared now

> if that's the type of dialysis he wants. He still thinks it'll be

> about 12 months before tx is necessary tho.

> Just to enlighten you a little, we live in a small town on the west

> coast, south island. The neph is based about three hours away on

> the other side of the island, hence the visits to the coast several

> times a year.

> We still have a lot to find out about dialysis, I'm not even sure if

> there are facilities on the coast. Apparently you can do it at

> home. The neph was telling Dennis they have the best results with

> overnight dialysis while you are asleep ... I've read some of the

> earlier posts about that so found it quite interesting that it was

> suggested. And I'm not sure how fussed I am about home dialysis!!

> Oh well, sorry to have rambled on so much, just quite a

> lot to take in I guess. BTW I am intending to get tested as a

> possible donor, as are a few family members/friends, hopefully!

> thanks to you all for your wisdom and support

> cheers from NZ

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> 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 Jing

I'm so pleased you are feeling so much better now after your

transplant. I did follow your journey with interest. Hopefully we

can avoid dialysis altogether.

I can't remember who your donor was sorry ... just wondering about

their recovery period and how the operation went for them. I have

read it can be harder on the donor, and as a potential one myself am

interested in that side of the story as well!

cheers

> Welcome, ! Hope you can be tested soon so Dennis won't have

to do dialysis. As Pierre said, transplant will restore 100% kidney

function and only 20% with dialysis. I just had my tx a month ago

today and my energy level is so much better. I never thought I was

that tired until I found out how it is to feel good. Wishing you and

Dennis the best.

>

> Take care,

> Jing

>

[Guest guest]

Hi Rita

another familiar name! Thanks for your good wishes ... I agree with

you, this site has been wonderful, there are a lot of very

knowledgeable people on here and it's great that you all take the

time to share your information and support.

Will certainly keep you posted as we go along our journey ... as

Dennis told his mother (she was a little upset!) this is just

a " glitch in my highway of life - three months after (tx) I'll be

good as gold again " - well, we are thinking positive anyway!! He

feels lucky really this is what he's been given to deal with ... we

recently had to visit a close friend in Oz with a brain tumour, who

was given 3-12 mths to live, only 44 with a 12 yr old son.

Hopefully he will prove them wrong, he is an inspiration to us with

his positive attitude. He was told he'd never drive or work again -

well he drove us around when we were there and is going back to work

parttime this week. So that keeps our situation in perspective

really.

cheers

> Hi ,

>

> Welcome! I am so happy you decided to speak up but am very sorry

about your hubby's declining health. This site has been and

continues to be worth it's weight in gold. I think you are amazing

to offer yourself as a donor. I truly hope it all works out.

Please continue to keep us posted. Rita