Re: New here

[Guest guest]

Hi Mia. Welcome to the group. I haven't had to face any decisions regarding

transplant and/or dialysis yet, so I wouldn't presume to be able to talk

about it, but we have members who have. When you say you have to decide, do

you mean that you have a donor available? I think most people would go for

the transplant if available, since you can lead a much more normal life on a

daily basis, but hopefully, others who have already been through that phase

will be able to comment. I would think that unless you have a kidney

available right now, you would have to go on dialysis anyway in the

meantime. Many people report that they feel much better once they start

dialysis. I'm not quite to that point yet, but the nausea and fatigue I feel

all the time aren't very pleasant. Sometimes it can be worse to be pre-end

stage - close to needing dialysis, but not quite there. How do you feel at

present?

Pierre

New here

> Hello everyone, my name is Mia I am 26 and was diagnosed with IGAN in

> 1996. I am currently preparing to be placed on the transplant list

> through Loma hospital. I have a fistula in my left wrist but

> have not yet started dialysis.(my creatin is 8.3) My doctor is

> giving me the choice of getting a transplant now or going on dialysis

> for a while and seeing how my body reacts. I am stuck on this tough

> decision. I have been married for almost 8 years and I have 3 small

> children ages 6,5,4. (our oldest daughter passed away, she would be 7)

> so I have their lives to consider as well. I am hoping to talk to

> others who may have faced this decision and hear their ideas &

> opinions. Thank you for your time, sorry this is so long! )

>

>

[Guest guest]

Thank you for your response. Most of the time I feel worn out, I am

always so tired and weak (taking Procrit to try to help)and I get the

uric acid crystals in my ankle joints quite often... which puts me in

bed for up to a week at a time unable to walk. These things are such

a hassle and difficult to deal with while trying to raise my 3 small

children and go to college. I want the option that will make me feel

the best overall. I have some possible donors (brother & friends)

that have the same blood type (O+) but have not been tested

otherwise. I am really torn on what to do. My doctor is pushing for

the transplant. Every time I mention the chance of going into

remission she just laughs and says it's not likely. I am worried

about life on anti-rejection drugs, but also of one on a machine 3

times a week. Thanks for listening...

Mia

> Hi Mia. Welcome to the group. I haven't had to face any decisions

regarding

> transplant and/or dialysis yet, so I wouldn't presume to be able to

talk

> about it, but we have members who have. When you say you have to

decide, do

> you mean that you have a donor available? I think most people would

go for

> the transplant if available, since you can lead a much more normal

life on a

> daily basis, but hopefully, others who have already been through

that phase

> will be able to comment. I would think that unless you have a kidney

> available right now, you would have to go on dialysis anyway in the

> meantime. Many people report that they feel much better once they

start

> dialysis. I'm not quite to that point yet, but the nausea and

fatigue I feel

> all the time aren't very pleasant. Sometimes it can be worse to be

pre-end

> stage - close to needing dialysis, but not quite there. How do you

feel at

> present?

> Pierre

>

> New here

>

>

> > Hello everyone, my name is Mia I am 26 and was diagnosed with

IGAN in

> > 1996. I am currently preparing to be placed on the transplant list

> > through Loma hospital. I have a fistula in my left wrist but

> > have not yet started dialysis.(my creatin is 8.3) My doctor is

> > giving me the choice of getting a transplant now or going on

dialysis

> > for a while and seeing how my body reacts. I am stuck on this

tough

> > decision. I have been married for almost 8 years and I have 3

small

> > children ages 6,5,4. (our oldest daughter passed away, she would

be 7)

> > so I have their lives to consider as well. I am hoping to talk to

> > others who may have faced this decision and hear their ideas &

> > opinions. Thank you for your time, sorry this is so long! )

> >

> >

[Guest guest]

Mia, I am Pam, the mother of a now 17-year-old with this disease. I

also have a friend who has been on dialysis for 25 years, starting at

age 26. She had a graft in there somewhere. I want to have her log

onto this site and maybe chat with you about her experiences. She

has some strong feelings about grafts, and the different types of

dialysis. Good luck to you. I can't imagine how difficult it is

rearing three small children and going through this. You will come

out the other end just great and look back on this time with, I'm

sure, mixed emotions. Pam

> > Hi Mia. Welcome to the group. I haven't had to face any decisions

> regarding

> > transplant and/or dialysis yet, so I wouldn't presume to be able

to

> talk

> > about it, but we have members who have. When you say you have to

> decide, do

> > you mean that you have a donor available? I think most people

would

> go for

> > the transplant if available, since you can lead a much more

normal

> life on a

> > daily basis, but hopefully, others who have already been through

> that phase

> > will be able to comment. I would think that unless you have a

kidney

> > available right now, you would have to go on dialysis anyway in

the

> > meantime. Many people report that they feel much better once they

> start

> > dialysis. I'm not quite to that point yet, but the nausea and

> fatigue I feel

> > all the time aren't very pleasant. Sometimes it can be worse to

be

> pre-end

> > stage - close to needing dialysis, but not quite there. How do

you

> feel at

> > present?

> > Pierre

> >

> > New here

> >

> >

> > > Hello everyone, my name is Mia I am 26 and was diagnosed with

> IGAN in

> > > 1996. I am currently preparing to be placed on the transplant

list

> > > through Loma hospital. I have a fistula in my left wrist

but

> > > have not yet started dialysis.(my creatin is 8.3) My doctor is

> > > giving me the choice of getting a transplant now or going on

> dialysis

> > > for a while and seeing how my body reacts. I am stuck on this

> tough

> > > decision. I have been married for almost 8 years and I have 3

> small

> > > children ages 6,5,4. (our oldest daughter passed away, she

would

> be 7)

> > > so I have their lives to consider as well. I am hoping to talk

to

> > > others who may have faced this decision and hear their ideas &

> > > opinions. Thank you for your time, sorry this is so long! )

> > >

> > >

[Guest guest]

Welcome Mia,

I assume that when you say he's giving you a choice of transplant now, you have someone who is willing and able to donate a kidney to you. Is that correct? If so, have they gone thru all the testing to make sure they are able to donate? That takes a while.

Having been on dialysis for a while, and after studying the literature related to dialysis and transplant, my own personal recommendation would be that if one is nearing end-stage (dialysis or transplant), I would suggest having a preemptive transplant performed. In other words, my suggestion is to have the transplant before having to go on dialysis. This is my own opinion, but I feel that it is the best choice.

By the way, I am on Loma 's waiting list and have been for 2 1/2 years.

Marty

New here

Hello everyone, my name is Mia I am 26 and was diagnosed with IGAN in 1996. I am currently preparing to be placed on the transplant list through Loma hospital. I have a fistula in my left wrist but have not yet started dialysis.(my creatin is 8.3) My doctor is giving me the choice of getting a transplant now or going on dialysis for a while and seeing how my body reacts. I am stuck on this tough decision. I have been married for almost 8 years and I have 3 small children ages 6,5,4. (our oldest daughter passed away, she would be 7)so I have their lives to consider as well. I am hoping to talk to others who may have faced this decision and hear their ideas & opinions. Thank you for your time, sorry this is so long! )

[Guest guest]

Mia, are they treating you for the uric acid? I had a lot of problems with gout (uric acid crystals in major toe joint/ball of foot) when I was predialysis. They put me on allopurinol and the problem went away. It also helps to avoid rich foods, cheeses, alfredo sauce, cream cheese, etc.

Marty

New here> > > > Hello everyone, my name is Mia I am 26 and was diagnosed with IGAN in> > 1996. I am currently preparing to be placed on the transplant list> > through Loma hospital. I have a fistula in my left wrist but> > have not yet started dialysis.(my creatin is 8.3) My doctor is> > giving me the choice of getting a transplant now or going on dialysis> > for a while and seeing how my body reacts. I am stuck on this tough> > decision. I have been married for almost 8 years and I have 3 small> > children ages 6,5,4. (our oldest daughter passed away, she would be 7)> > so I have their lives to consider as well. I am hoping to talk to> > others who may have faced this decision and hear their ideas & > > opinions. Thank you for your time, sorry this is so long! )> >> >

[Guest guest]

Thank you so much I would love to talk to her.

Mia

> > > Hi Mia. Welcome to the group. I haven't had to face any

decisions

> > regarding

> > > transplant and/or dialysis yet, so I wouldn't presume to be

able

> to

> > talk

> > > about it, but we have members who have. When you say you have

to

> > decide, do

> > > you mean that you have a donor available? I think most people

> would

> > go for

> > > the transplant if available, since you can lead a much more

> normal

> > life on a

> > > daily basis, but hopefully, others who have already been

through

> > that phase

> > > will be able to comment. I would think that unless you have a

> kidney

> > > available right now, you would have to go on dialysis anyway in

> the

> > > meantime. Many people report that they feel much better once

they

> > start

> > > dialysis. I'm not quite to that point yet, but the nausea and

> > fatigue I feel

> > > all the time aren't very pleasant. Sometimes it can be worse to

> be

> > pre-end

> > > stage - close to needing dialysis, but not quite there. How do

> you

> > feel at

> > > present?

> > > Pierre

> > >

> > > New here

> > >

> > >

> > > > Hello everyone, my name is Mia I am 26 and was diagnosed with

> > IGAN in

> > > > 1996. I am currently preparing to be placed on the transplant

> list

> > > > through Loma hospital. I have a fistula in my left

wrist

> but

> > > > have not yet started dialysis.(my creatin is 8.3) My doctor

is

> > > > giving me the choice of getting a transplant now or going on

> > dialysis

> > > > for a while and seeing how my body reacts. I am stuck on this

> > tough

> > > > decision. I have been married for almost 8 years and I have 3

> > small

> > > > children ages 6,5,4. (our oldest daughter passed away, she

> would

> > be 7)

> > > > so I have their lives to consider as well. I am hoping to

talk

> to

> > > > others who may have faced this decision and hear their ideas &

> > > > opinions. Thank you for your time, sorry this is so long! )

> > > >

> > > >

[Guest guest]

Thank you for your response. I was given a round of steroids for the

uric acid deposits, but it made me sick, so the next time they tried

an anti-inflammatory drug which didn't help either, so I was given

pain killers and told to sleep it off. I am now currently on

Catapress (the patch)-for BP, Clonidine- for BP, Procrit (injections)-

for anemia, Phoslo- Phosphorus blocker, Rocaltrol-cant remember what

its for, Protonix- for ulcer, Terazosin-BP again, Hydrochlorothiazide-

for edema & Zoloft- I guess the Zoloft is because taking all of this

other stuff is making me sad he he. So when I am given a new drug

and it doesn't work I often wonder if it is because it is reacting

with all of these other drugs.... sigh... such an ordeal... Thanks

for the input!

Mia

> > Hi Mia. Welcome to the group. I haven't had to face any

decisions

> regarding

> > transplant and/or dialysis yet, so I wouldn't presume to be

able to

> talk

> > about it, but we have members who have. When you say you have

to

> decide, do

> > you mean that you have a donor available? I think most people

would

> go for

> > the transplant if available, since you can lead a much more

normal

> life on a

> > daily basis, but hopefully, others who have already been

through

> that phase

> > will be able to comment. I would think that unless you have a

kidney

> > available right now, you would have to go on dialysis anyway in

the

> > meantime. Many people report that they feel much better once

they

> start

> > dialysis. I'm not quite to that point yet, but the nausea and

> fatigue I feel

> > all the time aren't very pleasant. Sometimes it can be worse to

be

> pre-end

> > stage - close to needing dialysis, but not quite there. How do

you

> feel at

> > present?

> > Pierre

> >

> > New here

> >

> >

> > > Hello everyone, my name is Mia I am 26 and was diagnosed with

> IGAN in

> > > 1996. I am currently preparing to be placed on the transplant

list

> > > through Loma hospital. I have a fistula in my left

wrist but

> > > have not yet started dialysis.(my creatin is 8.3) My doctor

is

> > > giving me the choice of getting a transplant now or going on

> dialysis

> > > for a while and seeing how my body reacts. I am stuck on this

> tough

> > > decision. I have been married for almost 8 years and I have 3

> small

> > > children ages 6,5,4. (our oldest daughter passed away, she

would

> be 7)

> > > so I have their lives to consider as well. I am hoping to

talk to

> > > others who may have faced this decision and hear their ideas &

> > > opinions. Thank you for your time, sorry this is so long! )

> > >

> > >

>

>

>

[Guest guest]

Hi Mia. You're very welcome. If it were me, I would think that

transplant would be the better solution if it's available. That's

what would give you the best chance of leading a completely normal

life, in my opinion. No guarantee that any of your close relatives

would match anyway, until they get worked up for it.

My hat goes off to you for being able to raise 3 small children and

go to college too.

There are too web sites that I recommend and that might help you make

a decision like that:

http://www.kidneydirections.com/

http://www.kidneypatientguide.org.uk/

Pierre

> Thank you for your response. Most of the time I feel worn out, I am

> always so tired and weak (taking Procrit to try to help)and I get

the

> uric acid crystals in my ankle joints quite often... which puts me

in

> bed for up to a week at a time unable to walk. These things are

such

> a hassle and difficult to deal with while trying to raise my 3

small

> children and go to college. I want the option that will make me

feel

> the best overall. I have some possible donors (brother & friends)

> that have the same blood type (O+) but have not been tested

> otherwise. I am really torn on what to do. My doctor is pushing for

> the transplant. Every time I mention the chance of going into

> remission she just laughs and says it's not likely. I am worried

> about life on anti-rejection drugs, but also of one on a machine 3

> times a week. Thanks for listening...

> Mia

>

[Guest guest]

Hi Mia;

My partner and I have been on vacation so I haven't

checked my mail recently but I wanted to add my voice

to those supporting a transplant. J was on dialysis

for several years and since his transplant his life

has improved immeasurably.

He sees himself as entirely healthy, (despite a few

recent complications) and for that reason won't even

acknowledge this group's existence. The group has been

a great help to me and through me to him so he's

softening on that stance -- maybe he'll sign on one

day, we'll see.

Anyway, J. is also on allopurinol for gout and as I

believe Marty pointed out, the other drugs only treat

the symptoms, the allopurinol makes it go away. Ask

your doctors.

I can't imagine spending the many hours a week it

takes to have dialysis when a transplant is available.

Aside from watching J's diet and making sure we always

have a bag with his meds in the car when we go

anywhere for more than a few hours, you'd never know

he had ever suffered from IgA, in fact, we have

friends who don't know.

We've had a few recent ups and downs but even if the

worst were to happen and he lost the graft he would

return to dialysis and hope for another transplant.

(By the way, in case anybody else is reading this,

we're still waiting on test results from the biopsy to

see if theIgA has returned.) You've had good advice

from Pierre and everyone else, I just wanted to chime

in with my support. Surgery is always scary but a

transplant can mean a whole new life, and they leave

the old kidneys exactly where they are so if you ever

did have any chance of remission, that would not be

altered by a transplant. It's the stuff of science

fiction but I always think of a scene from a star trek

movie where Dr. McCoy hears a woman in the 20th

century is suffering from kidney failure, hears she's

about to be operated on and is horrified by the

barbarism of 20th century medicine, he gives he a pill

and her kidney function is resotred.

Anyway, must run. All the best.

s.

--- Marty Hall wrote:

> Rocaltrol helps your body absorb calcium from your

> intestine and put it into your bones. Also lowers

> secondary hyperparathyroidism (PTH).

>

> The pain pills for uric acid deposits will only

> treat the symptoms, they won't treat the cause which

> is too much uric acid in your bloodstream.

>

_______________________________________________________

[Guest guest]

--- Hi Trudy,

Welcome, Im sorry to hear about your father and how hard it must

be for your mother.You will get wonderful answers to your question

here.I can tell you that mom is on both the aricept and namenda.The

aricept was added early on in the disease but the namenda was added

last winter.I cant really say as I noticed a difference one way or

another with mom when we put her on the namenda.It really didnt seem

to make a difference.My very best to you and once again a heartfelt

welcome Ron

In LBDcaregivers , " truulon " wrote:

>

> Hello everyone. I've been so caught up reading all this

information,

> I haven't gotten around to posting until now. My 88 year old

father

> has LBD and his main care giver is my 86 year old mother. Of

course,

> I'm helping a lot, but she's the one living with him.

>

> My dad was diagnosed with Alzheimer's some years ago, but the

> symptoms just didn't quite ring true. About a month ago I ran

across

> the LBD site and couldn't believe my eyes. They symptoms fit him

to a

> tee! I printed out the information and gave it to his doctor. He

> agreed and also, due to my father's recent decline, recommended

> Hospice. They have been a Godsend. I worry so much about my

mother's

> stress level.

>

> The only thing I can really think of to ask right now is in

regards

> to his taking Namenda. He's been on Aricept for many years and

> Namenda was added a couple years ago. Some of the info I'm reading

> leads me to wonder if it's doing more harm than good. Any

thoughts?

>

> At this point he hallucinates quite a bit, but they don't seem too

> bothersome to him. His biggest problem is falling. He fell today

even

> though he was using his walker. When the body weakness comes he

has

> to sit down or he will fall down. I'm afraid it's time to

introduce a

> wheelchair.

>

> Thank you all for being here. I will continue reading all your

posts.

> This forum is wonderful.

>

> Trudy

>

[Guest guest]

Trudy,

Welcome, Hope we can be of some help. The last year of Mom's life she was in a

nh and I kept her in a wheelchair. The nh wasn't the best and they didn''t

watch anyone close enough that Mom wouldn't have fallen.

I used the little pillow that fit from arm to arm and she used it like a tray

and felt more secure with it on than off.

She had gone from a cane to a walker. After the hospital to " fix her sleep

meds, " she couldn't walk from all the meds.. And it took a lot to get the nh to

remove drugs. So the wheelchair was the only answer I had.

Hope this helps.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

New here

Hello everyone. I've been so caught up reading all this information,

I haven't gotten around to posting until now. My 88 year old father

has LBD and his main care giver is my 86 year old mother. Of course,

I'm helping a lot, but she's the one living with him.

My dad was diagnosed with Alzheimer's some years ago, but the

symptoms just didn't quite ring true. About a month ago I ran across

the LBD site and couldn't believe my eyes. They symptoms fit him to a

tee! I printed out the information and gave it to his doctor. He

agreed and also, due to my father's recent decline, recommended

Hospice. They have been a Godsend. I worry so much about my mother's

stress level.

The only thing I can really think of to ask right now is in regards

to his taking Namenda. He's been on Aricept for many years and

Namenda was added a couple years ago. Some of the info I'm reading

leads me to wonder if it's doing more harm than good. Any thoughts?

At this point he hallucinates quite a bit, but they don't seem too

bothersome to him. His biggest problem is falling. He fell today even

though he was using his walker. When the body weakness comes he has

to sit down or he will fall down. I'm afraid it's time to introduce a

wheelchair.

Thank you all for being here. I will continue reading all your posts.

This forum is wonderful.

Trudy