Re: New Here

[Guest guest]

Kathy,

Welcome to the group. My ten year old was diagnosed with the aggressive type

IgAN last summer. His dr. put him on Prednisone, Enalipril and lots of Fish

Oil. He is now being weaned off of the Pred. ....April 26 will be the last

day of Prednisone. We havent had many problems with the drug. I am thankful

and willing to deal with any side effects if it can slow this disease down. Its

worked!

Now, how it affected my son. On Prednisone he gained about twenty pounds.

It was a good thing because he had gotten so skinny I was wondering if he was

anorexic. He just didnt want to eat...turns out it was IgAN. He is chubby now

and has the 'moon face', but it hasnt bothered him much. He is now losing

weight and losing the round face because he is being weaned off it. Just

remember to keep fresh fruits and veggies for your son to snack on because being

on

Pred. he will be hungry all the time. I joke with my son that he is like an

infant, he has hourly feedings...LOL...That is slowing down now though

Cade has had headaches on Prednisone. I give him a regular tylenol and it

usually helps.

Also, this past weekend he had leg cramps, in the calf that was really

bothering him. This group suggests ice packs. I didnt see that until the day

after, but thought I'd pass it on to you in case your son experiences Prednisone

leg cramps.

A positive for me of Pred is that it seems to turn them into chatter boxes.

My son is an introvert and doesnt talk much. Being on Prednisone he doesnt

stop talking....lol...I've enjoyed it most of the time...lol

There is an email group like this one for kids. Its called kid talk and its

for kids who have kidney diseases. My son is a member and would probably

enjoy emailing your son if that is something you would be interested in. I had

Cade join so that he knows he's not the only kid going through this. If you

need info on this to join, let me know.

Have a great day everyone,

Angel....Cades mom

[Guest guest]

Tara

Thanks you so much, your message has given me immense hope. It helps to hear

others stories and see that things do get better.

Kathy

" Newman, Tara " wrote:

Hi Kathy. My name is Tara and I also have a 9 year old daughter, Allie Beth

who after one year aS of March 19th, 2005 her nephs believe she is also in

remission. She has been on prednisone one year as of March 19th. We are

now on the road of being tapered off. We're down to 5ml every other day.

I'm not very familiar with imuran, but she also took cytoxan (a form of

chemo) for three months. She's been on as many as sixteen pills a day, but

now we're down to 7 pills and the liquid prednisone. She takes four fish

oil gel caps, one vitamin E, one multi vitamin and enalapril. It's all very

scarey as a mother I know. I found that this whole life style change for

her as well as our whole family has strengthened my faith in God and having

wonderful doctors has helped tremendously too. Be strong for your son and

hang in there, better times are to follow. Try looking a month or six

months down the road, sometimes it gets very overwhelming focusing on day to

day things. Also, children are more resilient than we think. My daughter

goes to school everyday, scored four distinguished on her portfolio pieces,

made it to the regional academic competition, played basketball, and many

other things. Be strong and everyone here is wonderful. It's hard, hang in

there.

Tara, mom to Allie Beth

new here

Hi,

I am new to the group. My son (10) had HSP 2 years ago, with skin,

joint, intestinal and kidney problems. Since then he has had

hematuria and recently joint pains again. Two weeks ago he had a

kidney biopsy and was diagnosed with IgAN. His nephrologist says it is

quite bad and wants to treat it agressively, and has started him on

prednisone and wants to include imuran as well in a couple of weeks.

I was very stressed putting him on prednisone but it seems that many

in this group are as well. I have been reading posts on this web site

for the last week and they have been very helpful.

Kathy

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]

Kathy, I don't know what your son's labs or anything looks like. There are

many more people here that can explain labs better than I can. My

daughter's kidneys were only functioning at 1/3 of what they should have

been. She was severely anemic, her hemoglobin was a little less than 8.

She had 3+ protein in her urine. It's been very overwhelming. I cried a

lot off and on and still do. Allie Beth is my hero everyday. She does so

much better than most grown ups do. Hang in there, better times are yet to

come.

Tara, mom to Allie Beth

new here

Hi,

I am new to the group. My son (10) had HSP 2 years ago, with skin,

joint, intestinal and kidney problems. Since then he has had

hematuria and recently joint pains again. Two weeks ago he had a

kidney biopsy and was diagnosed with IgAN. His nephrologist says it is

quite bad and wants to treat it agressively, and has started him on

prednisone and wants to include imuran as well in a couple of weeks.

I was very stressed putting him on prednisone but it seems that many

in this group are as well. I have been reading posts on this web site

for the last week and they have been very helpful.

Kathy

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]

I attempted to respond, but it obviously didn't go through, guess I will

try this again. LOL

I appreciate everything you said because that is exactly how it feels,

overwhelming. There shouldn't have to be a reason to switch doctors,

however there are doctors out there that really don't give a damn about

thier patients. And that is exactly how I feel with the ENT that is

currently " treating " my thyroid. And I can relate to never seeing him,

because that is exactly what I am going through now, I speak with the

nurse more than I speak with the doctor. She does all the labs, phone

calls, visits, etc. and it makes me wonder why I even bother asking

making the apt. w/ him, I should just say " I need to make an apt. w/ the

nurse. "

I'll be honest with you, I have had a hard time dealing with all of this

since I was " diagnosised " . Every time I asked a question, I didn't get a

strait response. I wasn't sure what I was supposed to do, all I knew was

that they had found a nodule, then the ENT said that I had

hyperthyroidism, then I was told I had 1 of 2 options, either RAI or

surgery. When I decided that I wanted more info about both treatments,

the ENT went into " you have 1 of 2 options " , and not once do I ever

remember getting a strait forward response from him. Then after the RAI

treatment, the doctor told me " you could take anywhere from a few weeks

to 1-3 yrs. before you start taking medications. We will continuously

take blood tests and monitor your levels. "

It was just a few short weeks ago that I went in again and had more labs

taken, once again, " everything is fine, we won't need to see you again

for a year " I am so sick of hearing that I can't see strait. I want more

than that, and if it means me having to find another doctor then that is

exactly what I am going to do.

> > > > > >

> > > > > >

> > > > > > Hello all, my name is Charity, I am 29 yrs. old. I guess it

> is

> > > > > time to

> > > > > > tell you all why I joined the group...LOL...kind of an odd

> > > story,

> > > > > but I

> > > > > > am hoping that you all will understand because I feel like

> I am

> > > > > loosing

> > > > > > my mind over all of this.

> > > > > >

> > > > > > About a year and a half ago I went to my doctor for

> the " yearly "

> > > > > check

> > > > > > up, and she found a lump in my throat, so she sent me to an

> ENT

> > > > > > specialist, who diagnosed me with nodules and

> hyperthyroidism.

> > > > > After

> > > > > > much convincing and talking by this ENT dr., he finally

> > > convinced

> > > > > me

> > > > > > that the best route for me would be taking radioactive

> iodine.

> > > The

> > > > > > whole way to the hospital I kept thinking to myself that I

> > > > > shouldn't be

> > > > > > doing this, but I went through with it anyhow. After doing

> the

> > > > > iodine

> > > > > > treatment, I was told by the ENT specialist that I would

> need to

> > > > > come in

> > > > > > every 3 months for TH tests to see how my levels are doing.

> > > Which

> > > > > I have

> > > > > > done faithfully, so far he hasn't prescribed medications,

> > > however

> > > > > in the

> > > > > > recent weeks I have been feeling fatigued and irritable, so

> I

> > > > > called the

> > > > > > ENT dr. and made an appointment, afterwards he called me

> back

> > > and

> > > > > told

> > > > > > me that all of my levels are " normal " and that I wouldn't

> need

> > > to

> > > > > be

> > > > > > seen again for another year.

> > > > > >

> > > > > > I'm not sure what I'm doing, what caused this, what I'm

> supposed

> > > > > to be

> > > > > > asking, or anything else for that matter. Anyhow, thanks for

> > > > > letting me

> > > > > > join the group, I look forward to getting to know everybody.

> > > > > >

> > > > > > Charity J. Thornhill

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

It appears we both had posting problems yesterday. lol A real bummer

when you spend all the time to write...only to have it go " poof! " ;-D

I'm curious, you said that your doctor found a nodule. Did they

perform any imaging tests? If so, are they on record (get a copy of

it)?

If so, I'd want it and take it too, along with your visit with the

new doctor.

I know how difficult all this is. I think obtaining your records and

moving onto another doctor is your best next step.

If a doctor isn't fully in the know or think they've slipped

somewhere...don't think they care to admit it. Feeling as bad as you

do and then told, essentially, that he doesn't want to see you in for

labs for another year...tells me that he's done with this matter.

After RAI, did anyone outside the ENT tell you that it may take up to

3 years before medication? Have you called your E.N.T.'s office yet,

requesting the numbers from your lab? I'd get down there, requesting

them.

I think poorly of a doctor who can't take the necessary time with

their patients. My new doctor, after receiving my CBC

results...called me straight away with the results. He even read me

the numbers, without my having to ask for them. Good man...he had me

figured out from our visit. lol

He also said he wanted to see me back in two months for hormonal

issues/other issues. That was nice, too. He took the pressure off, in

doing that.

If you ask a straight forward question, you should get a simple

answer. Now, if he is trying to work on the answer, he should tell

you this. If he doesn't know and think he may never know, in honesty

and thoughtfulness, should tell you that you'd be better served by

somebody who has more understanding of the condition.

When somebody comes to me for answers (in my small community, I'm

considered " progressive " in some areas)I will tell them what I know,

if I don't know, tell them I'll look into the matter (and do!) or

direct them to a person or possible site that may hold the answer or

better at explaining.

As a caring human being, I'm not going to lead anybody on. I think

doctors need to take this same approach.

Any person (doctors included)...if they can't be honest with

themselves, then they will have a difficult time being honest with

others.

Keep us posted.

Best,

~Kate

> >

> > I think I understand well what you are feeling like, in this

> > situation.

> >

> > I haven't been diagnosed but the problems remain. I ended up

changing

> > doctors very recently. I'll tell you why but first, will tell you

how

> > I felt about changing doctors before I did:

> >

> > Having to start all over. Where do I begin!? That is, in trying to

> > explain to him everything that has been happening. Overwhelming!

> >

> > In the past, I always thought it best to stick with the doctor who

> > knows most about you. A good thought but it may turn out to not

serve

> > our best interest: our health, our life.

> >

> > When you have an existing problem that is very discomforting, it's

> > terrible to have a doctor show you " the hand. "

> > You begin to doubt yourself. You'll go between that and then, to

the

> > opposite side. Yet, how can you get your doctor to listen!?

> > You feel like you've been let down, that your life is going to

fall

> > in-between the cracks. Feeling helpless and become cynical. All

this

> > can lead to a great deal of stress. Not to mention how you are

> > feeling with symptoms alone.

> >

> > I switched doctors because my doctor seemed disconnected, not

hearing

> > what I was saying or quickly diagnosing me. I understand a doctor

> > trying to relieve your worry but unless they've thoroughly looked

> > into the matter...is NOT comforting.

> > She was hurried. I brought in a family member, for support and

> > noticed she slowed down. I thought, maybe she had a bad day last I

> > saw her. Then, I went in again-alone. Back to her old self. Last I

> > saw her, I had my husband with me. She changed her " tune " again.

> >

> > Then, I wrote her a letter, laying out everything that had been

going

> > on. Things that I couldn't bring myself to tell her, due to her

> > hurry/my nerves (but left that part out) and as well, having gone

to

> > the E.N.T. - she couldn't know everything. I was trying to paint

her

> > a clear picture.

> > The response I got back? Her nurse called me to say that my doctor

> > didn't want to treat the problems with my neck/throat...but would

see

> > me for hormonal/allergies.

> > The time I spent writing that letter and hating every minute of

> > it...and she didn't have the decency to call me herself.

> >

> > That was my que and who knows, maybe that was her intent. I think

it

> > was over her head and maybe she knew she wasn't the doctor for

me. If

> > that was the case, she handled it wrong. Wrong either way.

> >

> > I changed doctors and this is what I told him, right off the bat:

my

> > background (strong suit) in school was math/science and

mechanics. I

> > need to understand, fully informed about what I'm dealing with.

> > The " inner workings. " I think he understood perfectly. I am not

> > looking for instant answers but someone willing to get to the

bottom

> > of it, not think poorly of me for doing my own research and keep

me

> > informed v/v.

> > Once I gave him a glimpse into my personality, the rest went

nicely.

> > He told me what tests could be run and why. If this happens, why

it

> > might happen. Yet he did tell me at one point (on something else),

> > basically right now I am telling you I don't know the answer. I

> > appreciated his honesty, taking the time (not hurried) and not

having

> > the feeling that he thought I was " loopy. " I had the feeling that

he

> > trusted me. I need to feel like I can trust him, too. Open,

> > comfortable communication is IMPERATIVE.

> >

> > I wrote him a short list of symptoms and I asked him, how do you

feel

> > about my writing this up and you reading it? He replied, that it

made

> > it easier for him. Good...that was my point and is easier for me

too.

> > My last doctor didn't seem to care for it.

> > That's the way it seems to be: either they like it or don't.

> >

> > I would ask your friend for a doctor's referral.

> > If it makes it easier on you: on your computer (Word), list your

> > symptoms, concerns, questions etc., print and provide it to the

new

> > doctor.

> >

> > It may very well be that he/she won't be able to take care of the

> > entire matter right off the bat but just as long as he/she truly

> > reads what you've written and makes a plan of " attack " ...that's a

> > good first step.

> >

> > Tell him/her that it is important for you to get down to the

bottom

> > of this, that you understand what is happening and why. Then, know

> > your options.

> >

> > Your first step must be in obtaining your labs and/or other

medical

> > records, if you so desire.

> > I requested mine many months ago. Interesting reading, what the

> > doctor was thinking. Get to see some of their " personality " shine

> > through too.

> >

> > Just take it one step at a time, try not to allow yourself to get

> > overwhelmed. I KNOW, when you feel so bad...you want it fixed NOW

or

> > better yet...to all go away NOW. It might take more time to get to

> > the bottom of this but I do believe you will have better success

with

> > this seeing a new doctor.

> >

> > Know this, you are not alone. Many, MANY people have gone through

the

> > same situation, many sharing your same condition. If a doctor

> > isn't " equipped " to figure it out or too damn

disinterested/arrogant

> > to care...it is NOT your fault.

> >

> > Find a good doctor. If you can trust him/her and trust his/her

> > diagnosis...you'll feel much better.

> >

> > Get your thyroid test numbers and list them here. Patients are the

> > most informed, in regard to their condition.

> >

> > Best to you and keep that chin up,

> > ~Kate

[Guest guest]

-Frances

I'm sorry to hear about your dog and your cancer. I wasn't always

a strong person and at times still not. I have my days of good and

bad. You'll become stronger just like I did.

One day you'll look back at the long road you went down just like

I'm looking at how many chemos are behind me now. Only three more to

go.

I'm still facing radiation then reconstruction but I look forward

to the day that my Doctor tells me I can return to work and to my

normal life before I was told I had breast cancer.

I'll keep you in my prayers. Stay strong, have a great day and may

God bless and watch over you. Cat

>

> > Then in the middle of my chemo my dog Phantom got very sick,

Oct 18 we had to put him to sleep. We were with him when we had to

do it, I was depressed so much.

> > My husband picked Phantom's ashes up today Oct. 25. I still

find my self crying but I know he's not in any pain and he's not

suffering anymore. But I still miss him here with me.

> Cat, sorry you're " part of the team. " You're a stronger

person than

> I am, though. I was diagnosed in June and started chemo. My dog

was

> hit by a car in mid-July and I still have not dealt with that

> emotionally. I've just had to stay mad at her for disobeying. I

> haven't the energy for anything else.

> -Frances

> --

> -Frances Bartels *** ki0dz@... (((#))) ^ ^

> http://www.qsl.net/ki0dz Central Ohio | ^ - ^

> Watkins Products www.watkinsonline.com #092389 ------- (o o)

> Internet ONLY $9.99/mo. **Free accelerator** |ooOoo| >{ | }<

> http://continue.to/internet ------- RRR)

*

>

[Guest guest]

Maya,

My problems all started after surgery. The day after surgery, a nurse was

messing around with my IV. When she gave me my meds I told her that it was

burning in my hand bad. She told me that I should taste it and I told her I

could not taste it but I could feel it in my hand.

When I was released and the next day my hand was swollen up to my elbow. That

was very scary. My Surgeon said the nurse must have pulled my IV out of my vein

and shot the meds into my hand resulting in to a blood clot.

I was put on a blood thinner which is why I bleed in my right breast. I'm

trying to stay positive and trust God that I will one day have beautiful girls

sitting on my chest again.

My last chemo will be Dec. 5 and then radiation. I don't know how many

treatments my Dr. will tell me I need. I probably will not have recon. surgery

until the new year. Thanks for the hugs and hugs back to you. Have a great day

and God bless you and everybody, Cat

mbrand@... wrote:

Date: Thu, 26 Oct 2006 2:01:48 -0400

To: breastcancer2

Subject: Re: New here

CC: Cath

Hi Cat,

Big Hug coming your way. I too had the expanders and suffered some discomfort,

but nothing like what you describe. I can say that I'm about 6 months out from

my recon and love my girls. They look great and day by day I feel increasing

better. I wish the same for you.

Maya

---- Cath wrote:

> Hi , my name is Cat,

>

> I found out I had Breast Cancer June 28. I had surgery on Aug. 1, I had

Radical mastectomy on both breast. My cancer was in the left breast, which was

Invasive ductal carcinoma, grade III, and focal high-grade ductal carcinoma in

situ. I .had 8 lymph nodes which turned out to be negative, thank God.

> Had chest expanders the day of my surgery. Started 16 weeks of chemo Aug. 30.

Turned 48 on Sept 3. The first 4 rounds of chemo I was so sick after each

treatment.

> After my second chemo on my free week I went in to have my expanders filled

and I had complications that night. My right breast swelled up in to my arm pit

and neck and the pain had me in tears.

> My plastic Surgeon said he must had hit a blood vessel which caused the

bleeding. He took out 100cc out and put pressure on it to drain it so now my

left breast has 450Cs, right breast has 350cc so I'm lopsided and there's still

pain there.

> Then in the middle of my chemo my dog Phantom got very sick, Oct 18 we had to

put him to sleep. We were with him when we had to do it, I was depressed so

much.

> My husband picked Phantom's ashes up today Oct. 25. I still find my self

crying but I know he's not in any pain and he's not suffering anymore. But I

still miss him here with me.

> I started my second round of chemo Oct. 24. I'm felling good today not sick

like I was on the first round. Three more to go, my last one will be Dec. 5.

Then I'll meet the Doctor who will decide how much radiation treatments that I

will need.

> I don't know when I will get breast implants. The worst part of chest

expanders is that, the chest muscles that lay flat on your rib cage are pulled

up on top of the chest expanders and are stretched which is painful.

> I know some day when I get my implants and all well and this will be behind

me. I miss working, sleeping in my bed, sleeping on my side or just being able

to go places, out to eat, I miss all that.

> I have my family with me but don't get to see our girls too much. My Mom has

been here with us helping out since the beginning. We all plan on walking in the

Breast Cancer walks next year. Thanks for being here for me and all the others

who need someone to e-mail. Have a great day and God Bless you, Cat

>

>

>

>

> ---------------------------------

> All-new Yahoo! Mail - Fire up a more powerful email and get things done

faster.

>

>

[Guest guest]

Pamela, I just went through that, my thoughts are with you and I will

include you in my prayers.

Lynnette

>

> Hi Everyone,

>

> I am new here. My name is Pamela, I am almost 31 and a single mom of

3.

> I just joined. I have a strong family history of breast cancer and I

> have had cervical cancer before. The doctor sent me for a routine

> mammgram based on my family history. I am currently undergoing

testing

> for breast cancer after a mammogram just revealed a massive dense

mass

> in my left breast.

>