new to group

[Guest guest]

Christy,

Good luck with everything, and keep us informed.

Betsy

> Betsy:

> Again thanks so much for sharing. The weight thing is really weird

> but makes

> sense. You probably couldn't give a 100 pound person the kidney of a

> 200 pound

> person. I gained a lot of weight 6 years ago when I quit smoking and

> have

> continued to gain so I am at 180 right now. My sister was 350 when

> she was

> diagnosed. She is 274 now which is 6 months later. I have been so

> upset that I could

> not get this weight off. So I finally hired the trainer. I better get

> to the

> Dr. soon so I can figure out how much weight I really need to loose

> or NOT.

>

> I thank the Lord for leading me to this site and thank you for being

> so

> gracious and sharing.

>

> Christy

> Northridge, Ca

>

>

>

[Guest guest]

:

WOW!! Thank you for the information. I am going to print this and then look

into it more in a day or so. This web-site has given me great insight thus

far. My sister is going to a Neph in Whittier and I can't spell his name. I am

kinda looking for a Neph at UCI. She goes to Brea for her Dialysis. She didn't

find out until this past June or July that she had this disease. The Dr.

negligance was unvelievable. Enough of that though.

I am on a Mission to help her and gather all the postive things I can along

with that. She lives in Anaheim so UCI is not far at all from her. We are

looking into a second opinion right now just trying to find the right Dr. to do

that task.She is on Medicare now and I am not sure they will pay for the

second opinion. Has to be done though.

I am looking for a Neph at the same time to do the work up on me. I was

referred to a web-site that gives info on that. I will follow up on this stuff

in

a day or so. I have my plate so full things are falling off at the moment.

Many thanks to you,

Christy

[Guest guest]

Hi Jolanta,

A very warm welcome to you and your husband. I am very sorry he has been

diagnosed with IgAN.

His is one of those miracle cases where Prednisone treatment seems to have

been extremely effective. I am so glad he responded well. If he can keep his

levels where they are, there is no reason he should not remain stable for a

very long time. I had IgAN for about 30 years and I am not yet on dialysis.

I pray he remains stable for decades to come.

Welcome again,

In a message dated 1/28/2005 9:04:32 A.M. Pacific Standard Time,

jolantamalobecki@... writes:

Hi All,

My name is Jolanta. My husband was diagnosed with igan in May last

year. He is 52. We leave in Massachusets and in US for 22 years. We

both emigrants from Poland. We have one son, 28 years old. When my

husband was in his mid 20's there was bllod in his urine(microscopic)

and allways since then. The February last year when he had his lab

tests done before colonoscopy, there was protein in his urine. His

PCP called him to do more tests and his 24 hrs protein spillage was

1.8mg and creatinine clerance 73. He scheduled an appointment with

nephrologist which was in May. Nephrologist run new and more tests.

Protein spillage 1.3mg but CC droped down to 59, serom creatinine 1.7,

BP elevated 140's/80's. Biopsy was sheduled for mid May. Biopsy

confirmed that he has igan. We both were devastatad with the news.

In June he was going for a month to Poland. We didn't know what to do.

His nephrologist start treatment right away. Last day of May, 3 days

intravenous pulse prednisone therapy was started fallowed by oral

40mg every other day for 6 months. Protein spillage continued

decreasing and in September was to low to calculate. Now he is of

prednisone since Dec.4 and the numbers are pretty stable. CC~60,

serum creatinine 1.3, BUN 14. He is also on law protein diet and very

low sodium. I forgot to mention that he is taking also one ACE for

bllod pressure. I'm sorry for such a long post. Any one with similar

expirance? Thank you. Jolanta

[Guest guest]

Hi Jolanta,

A very warm welcome to you and your husband. I am very sorry he has been

diagnosed with IgAN.

His is one of those miracle cases where Prednisone treatment seems to have

been extremely effective. I am so glad he responded well. If he can keep his

levels where they are, there is no reason he should not remain stable for a

very long time. I had IgAN for about 30 years and I am not yet on dialysis.

I pray he remains stable for decades to come.

Welcome again,

In a message dated 1/28/2005 9:04:32 A.M. Pacific Standard Time,

jolantamalobecki@... writes:

Hi All,

My name is Jolanta. My husband was diagnosed with igan in May last

year. He is 52. We leave in Massachusets and in US for 22 years. We

both emigrants from Poland. We have one son, 28 years old. When my

husband was in his mid 20's there was bllod in his urine(microscopic)

and allways since then. The February last year when he had his lab

tests done before colonoscopy, there was protein in his urine. His

PCP called him to do more tests and his 24 hrs protein spillage was

1.8mg and creatinine clerance 73. He scheduled an appointment with

nephrologist which was in May. Nephrologist run new and more tests.

Protein spillage 1.3mg but CC droped down to 59, serom creatinine 1.7,

BP elevated 140's/80's. Biopsy was sheduled for mid May. Biopsy

confirmed that he has igan. We both were devastatad with the news.

In June he was going for a month to Poland. We didn't know what to do.

His nephrologist start treatment right away. Last day of May, 3 days

intravenous pulse prednisone therapy was started fallowed by oral

40mg every other day for 6 months. Protein spillage continued

decreasing and in September was to low to calculate. Now he is of

prednisone since Dec.4 and the numbers are pretty stable. CC~60,

serum creatinine 1.3, BUN 14. He is also on law protein diet and very

low sodium. I forgot to mention that he is taking also one ACE for

bllod pressure. I'm sorry for such a long post. Any one with similar

expirance? Thank you. Jolanta

[Guest guest]

Hi Jolanta,

A very warm welcome to you and your husband. I am very sorry he has been

diagnosed with IgAN.

His is one of those miracle cases where Prednisone treatment seems to have

been extremely effective. I am so glad he responded well. If he can keep his

levels where they are, there is no reason he should not remain stable for a

very long time. I had IgAN for about 30 years and I am not yet on dialysis.

I pray he remains stable for decades to come.

Welcome again,

In a message dated 1/28/2005 9:04:32 A.M. Pacific Standard Time,

jolantamalobecki@... writes:

Hi All,

My name is Jolanta. My husband was diagnosed with igan in May last

year. He is 52. We leave in Massachusets and in US for 22 years. We

both emigrants from Poland. We have one son, 28 years old. When my

husband was in his mid 20's there was bllod in his urine(microscopic)

and allways since then. The February last year when he had his lab

tests done before colonoscopy, there was protein in his urine. His

PCP called him to do more tests and his 24 hrs protein spillage was

1.8mg and creatinine clerance 73. He scheduled an appointment with

nephrologist which was in May. Nephrologist run new and more tests.

Protein spillage 1.3mg but CC droped down to 59, serom creatinine 1.7,

BP elevated 140's/80's. Biopsy was sheduled for mid May. Biopsy

confirmed that he has igan. We both were devastatad with the news.

In June he was going for a month to Poland. We didn't know what to do.

His nephrologist start treatment right away. Last day of May, 3 days

intravenous pulse prednisone therapy was started fallowed by oral

40mg every other day for 6 months. Protein spillage continued

decreasing and in September was to low to calculate. Now he is of

prednisone since Dec.4 and the numbers are pretty stable. CC~60,

serum creatinine 1.3, BUN 14. He is also on law protein diet and very

low sodium. I forgot to mention that he is taking also one ACE for

bllod pressure. I'm sorry for such a long post. Any one with similar

expirance? Thank you. Jolanta

[Guest guest]

Hi Jolanta

I'm 51, almost the same age as your husband. I'm on dialysis now (I was 49

when I started), but I had the symptoms of IgA nephropathy for well over 25

years before that. I managed that without any treatment at all for most of

that time, and only blood pressure medications since about 1993 - absolutely

nothing else. So, it's possible that with the more aggressive treatments

patients get nowadays, your husband's kidney function could last a long,

long time. Unfortunately, nobody can really predict these things, but I

think the fact that your husband's numbers have improved is a very good

sign.

Best of luck to him.

Pierre

Re: new to group

>

>

> Hi ,

>

> Thank You so much for your respond & very warm welcome to the group. We

are hoping for the best,but my husband had IGA propably for 28 years before

he knew about it. When proteine showed in his urine he finally was dignosed

with IGA. His biopsy showed same focal demage, scars and crescents.

>

> As You know, now his creatninie is 1.2 ( before 1.7 ) he dosn't spill any

proteine. You mentioned that he is fortunate to have this kind of response .

We both would be very thankfull if You or samone else could tell as more

about this kind of treatment and chances to survive.

> Some study sugest that patient with IGA can rich remission or full

remission. We would like to get some confirmation in this metter.

>

> We also would like to know what is your kidney condition and what kind of

tretment You are receiving to allow you to stay so long without dialysies.

>

> Thank you again for your support. I will include You and Pierre and others

in my daily prayers. God bless You.

>

> Jolanta

>

>

[Guest guest]

Hi Jolanta

I'm 51, almost the same age as your husband. I'm on dialysis now (I was 49

when I started), but I had the symptoms of IgA nephropathy for well over 25

years before that. I managed that without any treatment at all for most of

that time, and only blood pressure medications since about 1993 - absolutely

nothing else. So, it's possible that with the more aggressive treatments

patients get nowadays, your husband's kidney function could last a long,

long time. Unfortunately, nobody can really predict these things, but I

think the fact that your husband's numbers have improved is a very good

sign.

Best of luck to him.

Pierre

Re: new to group

>

>

> Hi ,

>

> Thank You so much for your respond & very warm welcome to the group. We

are hoping for the best,but my husband had IGA propably for 28 years before

he knew about it. When proteine showed in his urine he finally was dignosed

with IGA. His biopsy showed same focal demage, scars and crescents.

>

> As You know, now his creatninie is 1.2 ( before 1.7 ) he dosn't spill any

proteine. You mentioned that he is fortunate to have this kind of response .

We both would be very thankfull if You or samone else could tell as more

about this kind of treatment and chances to survive.

> Some study sugest that patient with IGA can rich remission or full

remission. We would like to get some confirmation in this metter.

>

> We also would like to know what is your kidney condition and what kind of

tretment You are receiving to allow you to stay so long without dialysies.

>

> Thank you again for your support. I will include You and Pierre and others

in my daily prayers. God bless You.

>

> Jolanta

>

>

[Guest guest]

Ann,

Welcome to a wonderful, compassionate group of "sisters."

You mention NYC - is Mom going through Sloan Kettering? I'm from NY, but Long Island and was just curious.

My prayers are with you and Mom for her recovery. I had a double mastectomy at 46 in 2004 and have never felt more alive and well.

Should you need any advice after Mom's surgery, please feel free...we're always here to help.

Best,

[Guest guest]

Ann,

Welcome to the group. I will keep your Mother and you in my prayers. Please let us know how things go.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.comCinDWood Craftshttp://www.cindwoodcrafts.com

New to group

Hello, my name is Ann and I am new to this group. Twenty years ago my mother was diagnosed with breast cancer, went through a lumpectomy and radiation. Now, at the age of 84 she is facing the possibility of breast cancer again. She is now in NYC, will undergo a tissue biopsy under general anesthesia on Thurs. A couple of weeks ago she noticed a sudden change in her right breast (a dimpling, I think), she went through a needle biopsy and that showed "atypical" cells. Her doctor consulted with a radiologist and a breast oncologist, all three are very concerned that her cancer is back and that it is lying in or behind scar tissue there from her first bout with breast cancer. So, she undergoes more invasive tissue biopsy this week. The doctors will test the tissue while she is still under anesthesia and if it comes back positive they will do a mastectomy right then, before they wake her up. I'm quite concerned...the breast cancer was quite an ordeal for her 20 years ago, she is now 84. So I can't imagine what this will be like for her. She isn't dreading the diagnosis, she is dreading the whole surgical thing.....pain, healing, getting back on your feet, etc.

Anyway, I look forward to getting to know all of you.

Ann

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Thanks nne, I'll keep the group posted. Ann & nne Svihlik wrote: Ann, Welcome to the group. I will keep your Mother and you in my prayers. Please let us know how things go. Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.comCinDWood Craftshttp://www.cindwoodcrafts.com

New to group Hello, my name is Ann and I am new to this group. Twenty years ago my mother was diagnosed with breast cancer, went through a lumpectomy and radiation. Now, at the age of 84 she is facing the possibility of breast cancer again. She is now in NYC, will undergo a tissue biopsy under general anesthesia on Thurs. A couple of weeks ago she noticed a sudden change in her right breast (a dimpling, I think), she went through a needle biopsy and that showed "atypical" cells. Her doctor consulted with a radiologist and a breast oncologist, all three are very concerned that her cancer is back and that it is lying in or behind scar tissue there from her first bout with breast cancer. So, she undergoes more invasive tissue biopsy this week. The doctors will test the tissue while she is still under anesthesia and if it comes back positive they will do a mastectomy right then, before they wake her

up. I'm quite concerned...the breast cancer was quite an ordeal for her 20 years ago, she is now 84. So I can't imagine what this will be like for her. She isn't dreading the diagnosis, she is dreading the whole surgical thing.....pain, healing, getting back on your feet, etc. Anyway, I look forward to getting to know all of you. Ann How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Yahoo! Mail goes everywhere you do. Get it on your phone.

[Guest guest]

Ann,

So sorry to hear that your mother has to go through this again. I think it's especially hard with breast cancer (or am I wrong?) because, for me at least, I feel good. I know I needed surgery and will need treatment, but other than the surgery, the recovery and healing, I still feel good. Now, I probably won't say that once chemo starts and then radiation. I know this isn't a piece of cake, even at 54... can't imagine going through it at 84. We'll be thinking of you and your mother. Keep us posted on how things go.

Barb

New to group

Hello, my name is Ann and I am new to this group. Twenty years ago my mother was diagnosed with breast cancer, went through a lumpectomy and radiation. Now, at the age of 84 she is facing the possibility of breast cancer again. She is now in NYC, will undergo a tissue biopsy under general anesthesia on Thurs. A couple of weeks ago she noticed a sudden change in her right breast (a dimpling, I think), she went through a needle biopsy and that showed "atypical" cells. Her doctor consulted with a radiologist and a breast oncologist, all three are very concerned that her cancer is back and that it is lying in or behind scar tissue there from her first bout with breast cancer. So, she undergoes more invasive tissue biopsy this week. The doctors will test the tissue while she is still under anesthesia and if it comes back positive they will do a mastectomy right then, before they wake her up. I'm quite concerned...the breast cancer was quite an ordeal for her 20 years ago, she is now 84. So I can't imagine what this will be like for her. She isn't dreading the diagnosis, she is dreading the whole surgical thing.....pain, healing, getting back on your feet, etc.

Anyway, I look forward to getting to know all of you.

Ann

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Thanks Barb, I think she feels good too, at this point. How she'll feel a week from now is an entirely different story. She just wishes she didn't have to go through all of this, a wish the whole family shares. She's 84, but sharp as a tack and otherwise very very healthy. I hope that works in her favor. I'll keep everyone posted, thanks for your good wishes. AnnBarb Roy wrote: Ann, So sorry to hear that your mother has to go through this again. I think it's especially hard with breast cancer (or am I wrong?) because, for me at least, I feel good. I know I needed surgery and will need treatment, but other than the surgery, the recovery and healing, I still feel

good. Now, I probably won't say that once chemo starts and then radiation. I know this isn't a piece of cake, even at 54... can't imagine going through it at 84. We'll be thinking of you and your mother. Keep us posted on how things go. Barb New to group Hello, my name is Ann and I am new to this group. Twenty years ago my mother was diagnosed with breast cancer, went through a lumpectomy and radiation. Now, at the age of 84 she is facing the possibility of breast cancer again. She is now in NYC, will undergo a tissue biopsy under general anesthesia on Thurs. A couple of weeks ago she noticed a sudden change in her right breast (a dimpling, I think), she went through a needle biopsy and that showed "atypical" cells. Her doctor consulted with a radiologist and a breast oncologist, all three are very concerned that her cancer is back and that it is lying in or behind scar tissue there from her first bout with breast cancer. So, she undergoes more invasive tissue biopsy this week. The doctors will test the tissue while she is still under anesthesia and if it comes back positive they will do a mastectomy right then, before they wake her up. I'm quite concerned...the

breast cancer was quite an ordeal for her 20 years ago, she is now 84. So I can't imagine what this will be like for her. She isn't dreading the diagnosis, she is dreading the whole surgical thing.....pain, healing, getting back on your feet, etc. Anyway, I look forward to getting to know all of you. Ann How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Yahoo! Mail goes everywhere you do. Get it on your phone.

[Guest guest]

Hi there,

I am pretty sure a lot of us have met through the NTH group and Thyroidless.

My main question right now is what is the effect of taking T3 only when you don't have a thyroid?

I had my thyroid removed due to Hashimoto's <yes I know, so sorry now but no going back> in 2007.

I was diagnosed with Celiac disease in 2001 but think the event that led to the diagnosis was actually an adrenal crisis.... Hospital for 4 days, BP 80/40, temp 94, blue lips/fingers, major weight loss, etc.

Following thyroidectomy I started to have many more issues and was diagnosed with Narcolepsy in 2008 and started Ritalin. I think this really strained my adrenals I started on Armour thyroid July of 2009 and my adrenal symptoms went wild. I now think I have 's. I have all the symptoms except for vomiting. I had an ACTH stim test and failed spectacularly though no one is sure if it was due to adrenal suppress from Ritalin or what....

Currently I am taking 45mg of HC daily dosed at 2 hour intervals.

Florinef 1/4 tab to be increased this Monday to 1/2

Thyroid-s 1 1/2 grains

Cytomel 6.25mcg

Sea salt 4-5 teaspoons daily

Stopped Ritalin last Monday!!! Haven't driven into anything either

I also take the regular vitamins, calcium, iron etc.

I am waiting to get blood work done hopefully this tuesday to look at my iron/ferritin, RT3, FT3, FT4, TSH, CMP but am waiting on the requisition form.

My long winded question... what is the likely hood of me having a RT3 issue? I have been low cortisol most likely my whole life. In 2003 my ferritin was TWO. I was on synthroid/cytomel from 2003-2009. I don't tolerate much thyroid-s. My temps have been averaging 98.1 but my Basal temps are all over the place. I have tons of hypothyroid symptoms, dry skin, tired, hair loss, joint pain....

How safe is it for me to be on T3 only with no thyroid? I know NDT provides T1, T2, T3, T4 and calcitonin. Are these ok to be without? I know I need to get the labs done but was hoping for some ideas! Thanks

Kitty