Newbie

[Guest guest]

My name is and I live in SC. Welcome to the group, you

will find a lot of intelligent compassionate and suportive people

around here. I beleive all of us had quite of bit of difficulty

getting the appropriate diagnosis. WE all know how frustrating it

can be.

A tp ict; Total Pancreaectomy with Islet Cell Transplant. I was

told recently that this is the procedure I will need. The entire

pancrease is removed. The Ilset of Longerhans are the cells that

produce insulin. They are removed from my pancreas and transplanted

into a part of my liver. Reduces the risk of becoming a brittle

diabetic.

Warmly;

[Guest guest]

Hi Tina,

Welcome to the group! I know where you're coming from with regards

to the concern of dying. BUT, the way I looked, and continue to look

at it, is I had a greater chance dying just from living in the trash

can of a body I had than on an operating table. I didn't have any

comorbidities, which worked to my advantage, but you never know. You

just have to weigh your options. The night before my surgery I got

really scared and started talking to my hubby about if anything

happened where I would want to be buried and all that, he just

looked at me and said he had 150% faith in the doctor and not to

talk like that. It got me through! Just make sure the doctor that

performs the surgery has his credentials and plenty of experience in

the field! But, since you're using Tricare you should have a simple

enough time with that. Hang in there, we're there for you!

Marla

Open GB

February 12, 2003

360/189/185

Fountain Valley, CA

Dr. Chin

> Hi, my name is Tina and I am in the " process " of having the

surgery.

> I was all doen with everything and on the waiting list at Wilford

> Hall in San when my husband got orders to North Dakota. So

> now I am starting all over per say and waiting again. It is much

> easier here though since it will not be done on base. I am very

> excited but this weekend, I was reading over another website and

> came across a memorial page. There were ALOT of people on it and

it

> scared me but like my husband said, there are many more that are

> happy and healthy now. I am very worried about blood clots. That

> seemed to be a big risk. I have no other co-mobidities except for

> sleep apnea where I wear the c-pap machine. The doctor also took

me

> off of birth control because he says they promote blood clots. Has

> anyone else ever heard of that? I just wanted to say hello and

> hopefully get to chat with some of you. I have been reading posts

> for almost a month now and you have been very helpful. Best of

luck

> to everyone out there!!

>

> Tina

[Guest guest]

Congratulations on your upcoming baby ! We are awaiting the arrival of my

granddaughter (who is taking her sweet time), and we were also told she has

clubfeet.

DeeDee

California

[Guest guest]

Hello, I have a 4 month son,, with one clubfoot, on the left.

I had one ultrasound at about 20 weeks and nothing showed that there

was anything wrong with his feet. It was a surprise at his delivery.

As I was lying in the bed (getting stitched up) I could see him as

they were cleaning him off. Somehow, when I saw his foot then, I knew

immediately that something was wrong. We have been taking it in

stride. He had a very difficult time nursing and gaining weight so

thoughts about his foot took a backseat. We knew that it would be

corrected and it was more important to focus on his eating. We just

switched doctors last week, to one who strictly does the Ponseti

method and is back in casts for the first time since he was a

month old. I am happy with who he is, he is a sweet little boy with

feet that are just out of alignment right now (as my husband puts

it.) I wouldn't change anything for the world, except for having

found a Ponseti doctor earlier. Enjoy your pregnancy!

>

> Hello all. I am new to this group. I am 23 weeks along and at my 20

> week u/s the tech told me my dear Evan had club feet. We did

another

> u/s, level 2, and confirmed that he did indeed on both feet.

>

> Just starting research and what on this condition.

>

> Basically he has another u/s to make sure he is growing properly in

> another 3 weeks so to be sure he has not other conditions. But

really

> it seems like it is a waiting game. Just have to wait and see what

the

> ds's feet turn out like when he is born?

>

> Is that pretty much how it went w/all of you?

>

> Thanks in advance for all your help and support. I feel helpless at

> this point.

>

[Guest guest]

That's pretty much the way it goes. Just be assured that even if

your son is born with clubfeet, it is correctable. Have you looked

into the different methods of treatment?..specifically the Ponseti

method? I am 38 weeks pregnant and my son was diagnosed with a

clubfoot at the 18 week ultrasound (and later had 2 more ultrasounds

to make sure everything else was ok). It is a waiting game as far as

waiting to see just how the foot looks, the severity of it. But I

have had this time to research different methods of treatment and am

convinced that the Ponseti method is the absolute best.

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

You can check this website for more info. Best of luck to you!

>

> Hello all. I am new to this group. I am 23 weeks along and at my

20

> week u/s the tech told me my dear Evan had club feet. We did

another

> u/s, level 2, and confirmed that he did indeed on both feet.

>

> Just starting research and what on this condition.

>

> Basically he has another u/s to make sure he is growing properly

in

> another 3 weeks so to be sure he has not other conditions. But

really

> it seems like it is a waiting game. Just have to wait and see what

the

> ds's feet turn out like when he is born?

>

> Is that pretty much how it went w/all of you?

>

> Thanks in advance for all your help and support. I feel helpless

at

> this point.

>

[Guest guest]

Thanks for the congrats. Yes, Evan will be our first!

Is there any history on how/why this happens?

" Waiting game " ..yes, I mean about whether

anything else might be wrong. I have another u/s on Dec. 1st.

Thanks for all the words of encourgagement! It does help to hear from others.

[Guest guest]

Hi there. That was how it was for us too. We found out during my 20-

wk ultrasound and we followed her development with followup

ultrasounds every 4 weeks - the feet stayed the same. Our baby was

born 10 days early and her feet were clubfeet - but she was

adorable, even those feet! You should definitely have her treated by

the Ponseti method. We looked into doctors and decided to go to

Iowa to be treated by Dr. Ponseti himself. Dr. Ponseti's secretary,

Joyce, was really nice in answering all our questions! It's great

that you know early - this way you can have everything ready when

your baby is born. We ended up going to Iowa when she was 3.5 weeks

old. She's now almost 3 months and her feet are fully corrected and

she is wearing the P/M bar to maintain the correction.

Don't worry about it too much and enjoy your pregnancy!

Yuuko and

> >

> > Hello all. I am new to this group. I am 23 weeks along and at my

> 20

> > week u/s the tech told me my dear Evan had club feet. We did

> another

> > u/s, level 2, and confirmed that he did indeed on both feet.

> >

> > Just starting research and what on this condition.

> >

> > Basically he has another u/s to make sure he is growing properly

> in

> > another 3 weeks so to be sure he has not other conditions. But

> really

> > it seems like it is a waiting game. Just have to wait and see

what

> the

> > ds's feet turn out like when he is born?

> >

> > Is that pretty much how it went w/all of you?

> >

> > Thanks in advance for all your help and support. I feel helpless

> at

> > this point.

> >

>

[Guest guest]

Thank you guys for all of your input. It was greatly reassuring.

> > >

> > > Hello all. I am new to this group. I am 23 weeks along and at

my

> > 20

> > > week u/s the tech told me my dear Evan had club feet. We did

> > another

> > > u/s, level 2, and confirmed that he did indeed on both feet.

> > >

> > > Just starting research and what on this condition.

> > >

> > > Basically he has another u/s to make sure he is growing

properly

> > in

> > > another 3 weeks so to be sure he has not other conditions. But

> > really

> > > it seems like it is a waiting game. Just have to wait and see

> what

> > the

> > > ds's feet turn out like when he is born?

> > >

> > > Is that pretty much how it went w/all of you?

> > >

> > > Thanks in advance for all your help and support. I feel

helpless

> > at

> > > this point.

> > >

> >

>

[Guest guest]

Hi, and welcome!

We're glad you're here. Congratulations on the upcoming arrival of

little Evan! Is he your first?

I know how overwhelming and upsetting it was to hear the news .. We

have all been there before.. either after an ultrasound and at

delivery, and know how you feel.. afraid of the unknown, what it

means for your baby, wondering how/why it happened, etc.

It might not seem so now, but you truly are fortunate to have found

out before he was born, so you can have time to learn about the

condition and treatment, and be prepared emotionally as well as armed

with facts and a game plan, instead of facing the start of the

learning curve in the delivery room.

As a parent of a child who is now 5 (and whose clubfoot surprised us

at delivery) I want to give you a word of encouragement. Clubfoot is

not a minor issue by any means, but it also isn't as bad as it

sounds. I mean that literally.. irrationally, even just the

word " clubfoot " sent me into despair me at first. Looking back, I

wish I could've seen a snapshot into the future of my daughter.

Seeing how normal, happy and active she is, snd how well she's doing,

it would've saved me much heartache. I hope that hearing from the

parents here will help you in that way too. This truly is a defect

that can be well corrected. As Dr. Ponseti says, with good treatment,

clubfoot is no handicap, and compatible with normal activity.

As far as it being a " waiting game " now .. do you mean about whether

anything else might be wrong? Clubfoot can indeed be associated with

other conditions, but in most cases it is isolated, with the baby

healthy in every other way. I have known of many, many parents over

the last several years who have been terrible scared after ultrasound

diagnoses that there " Might Be Something Else Wrong " and there almost

never is.

I think it's common to worry Will my child run and play? Will he

limp? Will he look and move normally? How bad IS this? Will he or she

be able to do the things other children do? With good treatment,

absolutely!

What's fortunate is that, as birth defects go, clubfoot is a very

correctable one. It is still a foot with the parts there..

it's just twisted, into a sort of three dimensional puzzle, but one

which can be " undone " by someone who knows what they are doing. It's

VERY important, however, to find a doctor skilled enough to

accomplish it well .. so rather than worry, I'd recommend throwing

yourself into that effort and search.. and be

optimistic! Your baby is being born at an excellent time, when great

progress has been made in clubfoot treatment, in recognition and

understanding of the value of the Ponseti method (which you can read

about in the link below).

My daughter has unilateral left clubfoot, which has been corrected

with the Ponseti method. She is now in kindergarten and thriving. She

takes ballet, runs, rides a bike, climbs, plays hopscotch, tiptoes

and squats, climbs, swims, wears cute sandals, goes barefoot.. No one

would have any idea anything was ever wrong. Her foot is normal

looking, slender and flexible, and except for being one size smaller,

looks the same as her other, normal foot. Even people who fit her in

shoe stores can't tell. One calf is thinner, but it is not something

that jumps out at you.

Your baby will be born, you will love him .. you will be strong! You

will go through what you need to do, with castings and the nighttime

brace. It's really not that bad.

Please don't let dread or worry sap the joy out of your pregnancy and

early days with your baby. You can do it, and your baby will be OK. I

know that's hard to imagine now, but in a few months/years, you'll be

here saying the same to other parents.

Please check out this website:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

And this one:

http://members.tripod.com/ponseti_links-ivil/

My this got long. I hope this helps! Please keep us posted.

Take care,

and Claire

6/29/00

>

> Hello all. I am new to this group. I am 23 weeks along and at my 20

> week u/s the tech told me my dear Evan had club feet. We did

another

> u/s, level 2, and confirmed that he did indeed on both feet.

>

> Just starting research and what on this condition.

>

> Basically he has another u/s to make sure he is growing properly in

> another 3 weeks so to be sure he has not other conditions. But

really

> it seems like it is a waiting game. Just have to wait and see what

the

> ds's feet turn out like when he is born?

>

> Is that pretty much how it went w/all of you?

>

> Thanks in advance for all your help and support. I feel helpless at

> this point.

>

[Guest guest]

Hi

My name is and my 7wk old son was diagnosed 20wks along.

We were upset and scared, and I felt guilty and helpless. After a brief pity

party, we

got all the information we could on clubfeet and chose are plan of attack on

the issue, that

made me feel much better. We chose the non-surgical route of serial

castings, started by

Dr. Ponseti.

Hope this has helped a little

's #1 fan

[Guest guest]

Congratulations on the upcoming birth of Evan! You certainly have

found a great group that will be able to help you support you and

your family. Enjoy the rest of your pregnancy as it goes by quickly!!

(as does the first year). Please keep your questions coming! we are

here to help you!

take care,

kathleen

mom to david bcf fab 12/7

>

> Hello all. I am new to this group. I am 23 weeks along and at my

20

> week u/s the tech told me my dear Evan had club feet. We did

another

> u/s, level 2, and confirmed that he did indeed on both feet.

>

> Just starting research and what on this condition.

>

> Basically he has another u/s to make sure he is growing properly

in

> another 3 weeks so to be sure he has not other conditions. But

really

> it seems like it is a waiting game. Just have to wait and see what

the

> ds's feet turn out like when he is born?

>

> Is that pretty much how it went w/all of you?

>

> Thanks in advance for all your help and support. I feel helpless

at

> this point.

>

[Guest guest]

> Thanks for the congrats. Yes, Evan will be our first!

> Is there any history on how/why this happens?

> " Waiting game " ..yes, I mean about whether

> anything else might be wrong. I have another u/s on Dec. 1st.

> Thanks for all the words of encourgagement! It does help to hear

from others.

Hi,

Clubfoot is a congenital defect (a defect appearing at birth) with

unknown cause, due to a combination of genetic and/or environmental

factors. No one knows precisely what triggers it. It can run in

families, but it also 'just happens' out of the blue. Many of us

don't know of other cases of it in our families.

My advice, as someone who worried A LOT, is not to

spend a lot of time wondering 'how it happened', what event or what

you did to 'cause it'. There's no one or one thing to blame. It's

just something that happens, like many things in life, and you do

what you need to do to help your baby.

Here is some information from the Global Health Booklet on Clubfoot

Management, page 31

" What causes clubfoot?

Parents may be concerned that they have done something wrong and

caused their child's clubfoot. Doctors agree that clubfoot is not

caused by anything the family did or did not do.

The cause of clubfoot is not exactly known. Doctors know that

clubfoot is more common in certain families. The usual incidence of

clubfoot is about 1 in 1,000 births. The chances of having a second

child with clubfoot is approximately 1 in 30. In summary, there is no

reason for parents to feel guilty about having a child with clubfoot.

What is the future of children with clubfoot?

The child with a clubfoot corrected by Ponseti management can be

expected to have a nearly normal foot. Some minor effects may be

noticed. "

http://www.global-help.org/publications/cf-english.pdf

And this, from the introduction to Dr. Ponseti's 1995 book, excerpted

in the Files section of the nosurgery site:

" In Caucasians, the disorder occurs in about one per thousand; among

the Japanese, it occurs half as frequently; in South African blacks

it occurs three times as frequently; and in Polynesians it occurs six

times as frequently. The ratio of male to female is 3 to 1, and 40

per cent of cases are bilateral.

The congenital clubfoot appears to be of genetic origin (Rebbeck et

al.1993). In a study based on 635 patients from Exeter, England,

Ruth WynneDavies (1964a, calculated that if one child in a family

has the deformity the chance of a second child having it is 1 in 35.

Idelberger (1939) examined 174 pairs of twins with clubfoot. In 32.5

per cent (1 in 3) of identical (monozygotic) twins, both had

clubfeet, whereas in only 2.9 per cent of fraternal twins

(dizygotic), both had clubfeet. "

May we ask where you are located? Maybe we can help steer you toward

a doctor to consult ahead of time..

Hope this helps,

and Claire

[Guest guest]

I really doubt anything else will be wrong. On the whole, club foot is a

fluke....and hey, you know if there are other problems, not like there's much

you could do before he's born so just relax and enjoy, cross those other bridges

when you get to them.

s.

Re: Re: Newbie

Thanks for the congrats. Yes, Evan will be our first!

Is there any history on how/why this happens?

" Waiting game " ..yes, I mean about whether

anything else might be wrong. I have another u/s on Dec. 1st.

Thanks for all the words of encourgagement! It does help to hear from others.

[Guest guest]

Hi

First I want to thank Beth for her help and patience in helping me join the

group by ironing out the glitchs with yahoo. My name is Pat , 61 yrs of

good living and I was dx in 2005. Still able to work, thank God, but at a slower

pace. Had a hard time accepting it and was in denial for 3 yrs. Internal

specialist then treated me for Bronchiectasis,didnt help. COPD, took myself off

that one as I felt worse. Had more tests than I can count. Finally he gave up,

then my doc got me in to see a pulmonary specialist at St. ph Hospital in

Hamilton Ont Canada. He showed us my cat scans and pointed out all the fibrosis.

Did more exercise tests, then did a Bronchoscopy. Stayed awake watched the whole

thing. Fascinating. He said I am too healthy for a lung transplant. My wife

Corrie is my rock. She is so loving and supportive and giving. After reading the

posts for the past month and a half we are truly in awe at how strong and

determined and supportive you all are. It is truly amazing. I wanted to be able

to try and help out in any way I could. We talked to my pulmo doc re clinical

trials and finally signed 18 pages of release forms for a class 2 clinical

trial. More about that later. The outcome with this monster disease might be

predetermined but he has a battle on his hands. Must be the Irish, Newfie

descent in me.My screen name is not very original as I was upset with yahoo and

took first one it suggested. My friends call me Merf.

Merf dx IPF 05

[Guest guest]

Merf

welcome, sorry you need us, glad you found us

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: NewbieTo: Breathe-Support Date: Friday, June 19, 2009, 3:59 PM

HiFirst I want to thank Beth for her help and patience in helping me join the group by ironing out the glitchs with yahoo. My name is Pat , 61 yrs of good living and I was dx in 2005. Still able to work, thank God, but at a slower pace. Had a hard time accepting it and was in denial for 3 yrs. Internal specialist then treated me for Bronchiectasis, didnt help. COPD, took myself off that one as I felt worse. Had more tests than I can count. Finally he gave up, then my doc got me in to see a pulmonary specialist at St. ph Hospital in Hamilton Ont Canada. He showed us my cat scans and pointed out all the fibrosis. Did more exercise tests, then did a Bronchoscopy. Stayed awake watched the whole thing. Fascinating. He said I am too healthy for a lung transplant. My wife Corrie is my rock. She is so loving and supportive and giving. After reading the posts for the past month and a half we are truly in awe at how strong and determined

and supportive you all are. It is truly amazing. I wanted to be able to try and help out in any way I could. We talked to my pulmo doc re clinical trials and finally signed 18 pages of release forms for a class 2 clinical trial. More about that later. The outcome with this monster disease might be predetermined but he has a battle on his hands. Must be the Irish, Newfie descent in me.My screen name is not very original as I was upset with yahoo and took first one it suggested. My friends call me Merf. Merf dx IPF 05

[Guest guest]

Merf,

Welcome!!! I'm so glad you managed to clear the Yahoo blockade and join us. It sounds like you have the spirit to fight this thing as hard as anybody here. Your difficulty in being properly diagnosed is unfortunately not unique. I was mis-diagnosed for over a year, with bronchitis, asthma etc etc etc.

Anyway I'm so glad you are here and hope that you find the suport and friendship that I have.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, June 19, 2009 3:59:28 PMSubject: Newbie

HiFirst I want to thank Beth for her help and patience in helping me join the group by ironing out the glitchs with yahoo. My name is Pat , 61 yrs of good living and I was dx in 2005. Still able to work, thank God, but at a slower pace. Had a hard time accepting it and was in denial for 3 yrs. Internal specialist then treated me for Bronchiectasis, didnt help. COPD, took myself off that one as I felt worse. Had more tests than I can count. Finally he gave up, then my doc got me in to see a pulmonary specialist at St. ph Hospital in Hamilton Ont Canada. He showed us my cat scans and pointed out all the fibrosis. Did more exercise tests, then did a Bronchoscopy. Stayed awake watched the whole thing. Fascinating. He said I am too healthy for a lung transplant. My wife Corrie is my rock. She is so loving and supportive and giving. After reading the posts for the past month and a half we are truly in awe at how strong and determined and

supportive you all are. It is truly amazing. I wanted to be able to try and help out in any way I could. We talked to my pulmo doc re clinical trials and finally signed 18 pages of release forms for a class 2 clinical trial. More about that later. The outcome with this monster disease might be predetermined but he has a battle on his hands. Must be the Irish, Newfie descent in me.My screen name is not very original as I was upset with yahoo and took first one it suggested. My friends call me Merf. Merf dx IPF 05

[Guest guest]

Merf... I shall consider myself an instant friend!

You are in the best place you can be as we fight our common disease.

I'll be reading your posts online...

Welcome,

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Newbie

HiFirst I want to thank Beth for her help and patience in helping me join the group by ironing out the glitchs with yahoo. My name is Pat , 61 yrs of good living and I was dx in 2005. Still able to work, thank God, but at a slower pace. Had a hard time accepting it and was in denial for 3 yrs. Internal specialist then treated me for Bronchiectasis, didnt help. COPD, took myself off that one as I felt worse. Had more tests than I can count. Finally he gave up, then my doc got me in to see a pulmonary specialist at St. ph Hospital in Hamilton Ont Canada. He showed us my cat scans and pointed out all the fibrosis. Did more exercise tests, then did a Bronchoscopy. Stayed awake watched the whole thing. Fascinating. He said I am too healthy for a lung transplant. My wife Corrie is my rock. She is so loving and supportive and giving. After reading the posts for the past month and a half we are truly in awe at how strong and determined and supportive you all are. It is truly amazing. I wanted to be able to try and help out in any way I could. We talked to my pulmo doc re clinical trials and finally signed 18 pages of release forms for a class 2 clinical trial. More about that later. The outcome with this monster disease might be predetermined but he has a battle on his hands. Must be the Irish, Newfie descent in me.My screen name is not very original as I was upset with yahoo and took first one it suggested. My friends call me Merf. Merf dx IPF 05

[Guest guest]

Merf

nonin just came out with a $99.-- oximeter

and the other members on the board know about one for less than that

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: NewbieTo: Breathe-Support Date: Saturday, June 20, 2009, 3:11 PM

The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much.

Merf IPF 05

[Guest guest]

Bruce

saw it advertised in the pulmonary paper

then my nonin 9500 was acting funny, so i looked it up on line for tech support and saw the GO2 on line

didn't pursue it

the batteries in my nonin are relatively new -- maybe a month

so i opened it up, reversed the batteries, and it is working again

this just happened on Saturday

now i am wondering about the longevity of the device, can it be repaired? or will it need to be replaced?

glad to read that you participated in some of the development of the new product--at the interview level

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: NewbieTo: Breathe-Support Date: Sunday, June 21, 2009, 11:18 PM

PinkI was unaware of that until you informed us even though I wasinterviewed long ago by the consulting company Nonin involved in thedevelopment. Glad to see they came out with a lower priced product.There are actually two versions of the GO2 with the GO2 approved formedical use and the Go2Achieve not approved even thought the twoproducts look identical and have identical specs. I think they may havethe two versions just for the basis of one which requires a prescriptionand one which does not.>>> Subject: Re: Newbie> To: Breathe-Support@ yahoogroups. com> Date: Saturday, June 20, 2009, 3:11 PM>>>>>>>>>> The pulmo doc didn't say any thing about visible scarring. Everythinglooked nice and pink to me.I am very fortunate that I don't have anyother diseases. And hope it stays that way. With our health care systemwe are covered for just about every thing. When we go in to hospital weare covered and all doctor

orderd tests are covered. Most meds arecovered. If not our pharamacist tries to get a generic brand or acheaper one, but the same. I do have a question regarding oximeters. Ihear everybody saying to get one. At my 6mw my sat went down to 90. Doesthis mean I need one. My wife has been trying to get a price on themaround here and they are hard to find. When she did price was from$450.00 to $1100.00. That seems like way to much.> Merf IPF 05>