Re: transplants- am I being too sensitive????????????

[Guest guest]

Thanks everyone for your suggestions- OMG I do NOTknow what I would do without

this group. You are the best !! I am going to see my rheumy on Tuesday and I am

going to ask him about a liquid diet. Right now most of my meds he is

prescribing. Since I am still in a flare up of Sjogren's Syndrome and have to

have blood tests every 2 weeks he would be the best person to advise me. My

liver enzymes have been abnormal along with a few other things. On Friday, I was

talking to a friend at pulmonary maintenance who just got listed (she's number

1) and we have same nurse and pulmo-dudette. She said once you start getting

even sicker the lbs will drop off no matter what you eat. Four years ago when

diagnosed she was 200lbs and is 5'3 " . Now they are bugging her because she is

underweight. They told her to eat all the ice cream she wants

I am also going to try to exercise more. On the non-maintenance days I always go

out at lunch time and there is a mall next to the building where I work. I could

" mall walk " easily. Again I can't thank you all enough for your feedback.

nne, ILD 6/09, Sjogrens,polymiositis 11/09

> >

> > Hi everyone,

> > It's nne, haven't posted for awhile and debated bringing up this

> topic, but this is the group I trust who will be honest with me. I was

> seen by a pulmo-dudette at NY Presbyterian in October and after a series

> of blood tests finally got a diagnosis of fibrotic NSIP caused by

> Sjogren's Syndrome an auto immune disease. I was told I was over weight

> and need to get the Sjogren's under control before I could be considered

> for a transplant. I lost about 7 lbs. I am taking 30mg of prednisone and

> 20 mg Methotrexate, Restasis for dry eyes, evoxac for dry mouth,zoloft

> for depression 100mg. Well for the past 3 weeks I have been " stuck " on

> 193 lbs- I can't seem to loose any more weight. Two weeks ago, the nurse

> coordinator leaves a message on my cell asking me to call back to let

> her know how much weight I lost. I call back and she said I am still

> obese, bmi of 31 which can't be more than 30. I asked her what my weight

> needs to be she said 170 (i'm 5' 5 " ). I laughed and said it's been over

> 20 years since I have been 170. Then she said how about 180 (?) I got

> REALLY annoyed- I said are we negotiating-how about 185. Meanwhile she

> must have called me obese at least another 5 times!!!!(I'm too sensitive

> right?) Anyway she said she would call back when she spoke to the

> doctor. The next day she leaves a message that dr said wait until Feb

> 11, day before follow up appt, and if I am not at least 180 to postpone

> appt. This weight issue is really getting to me. Anyway the last thing I

> want to watch is a webinar with NY Presbyterian!!!!!

> >

>

[Guest guest]

nne

Just don't be too surprised or disappointed if the rheumatologist

opposes the idea. Many doctors have never faced the personal challenge

of losing weight and see it as much easier than it is. On the other hand

he might be very open. Mainly explain what you've done, the additional

you intend to try (including more exercise). Then say if you don't see

more progress soon you really see no alternative and ask if he'd monitor

your blood for you if you did so. I'm not saying to go against your

doctors' recommendations but just preparing you for the possibility that

he doesn't fully understand the challenge. Some doctors are quite

understanding of it and to others its simply a matter of will power.

Hopefully he'll have some additional suggestions too.

> > >

> > > Hi everyone,

> > > It's nne, haven't posted for awhile and debated bringing up

this

> > topic, but this is the group I trust who will be honest with me. I

was

> > seen by a pulmo-dudette at NY Presbyterian in October and after a

series

> > of blood tests finally got a diagnosis of fibrotic NSIP caused by

> > Sjogren's Syndrome an auto immune disease. I was told I was over

weight

> > and need to get the Sjogren's under control before I could be

considered

> > for a transplant. I lost about 7 lbs. I am taking 30mg of prednisone

and

> > 20 mg Methotrexate, Restasis for dry eyes, evoxac for dry

mouth,zoloft

> > for depression 100mg. Well for the past 3 weeks I have been " stuck "

on

> > 193 lbs- I can't seem to loose any more weight. Two weeks ago, the

nurse

> > coordinator leaves a message on my cell asking me to call back to

let

> > her know how much weight I lost. I call back and she said I am still

> > obese, bmi of 31 which can't be more than 30. I asked her what my

weight

> > needs to be she said 170 (i'm 5' 5 " ). I laughed and said it's been

over

> > 20 years since I have been 170. Then she said how about 180 (?) I

got

> > REALLY annoyed- I said are we negotiating-how about 185. Meanwhile

she

> > must have called me obese at least another 5 times!!!!(I'm too

sensitive

> > right?) Anyway she said she would call back when she spoke to the

> > doctor. The next day she leaves a message that dr said wait until

Feb

> > 11, day before follow up appt, and if I am not at least 180 to

postpone

> > appt. This weight issue is really getting to me. Anyway the last

thing I

> > want to watch is a webinar with NY Presbyterian!!!!!

> > >

> >

>

[Guest guest]

Hi Joyce,

The problem I have with the weight issue is that I have been working out for

awhile even before this happened. Lately there have been numerous studies done

that indicate that BMI should not be the only criteria that should be used to

determine obesity and health. The fact that I graduated Pulmonary Rehab

improving by 25% over the initial eval- that speaks volumes to me. Open lung

biopsy- no problem-in and out of hospital in 24 hours. In fact the resperatory

techs, each with 30 years experience, were saying I was doing better with my 30%

PFTS than some dropouts they have who are 50-60%. I have a friend skinny as a

rail with high blood pressure and diabetes-neither of which I have and that are

supposedly caused by obesity most of the time.

I KNOW you can't fight city hall, so I accept whatever happens- if it's meant to

be it will happen. I am doing everything in my power to lose the weight and

trying some new things this week.

nne

>

>

>

> Subject: Re: re: transplants- am I being too

sensitive????????????

> To: Breathe-Support

> Date: Thursday, January 28, 2010, 11:32 PM

>

>

>  

>

>

>

>

>

>

> Hi nne,

> I'm struggling too. I'm 5'4 " 189lb and considered obese too. It's an ugly

word, but its medical terminology. I need to weigh 160 to qualify for the wait

list. Maybe there is some flexibility in the weight range, but they haven't

told me that. Being as healthy and physically fit as possible is the minimum

criteria to be placed on the national transplant waiting list. The doctor isn't

setting this qualification criteria the transplant center does.

>  

> I still have 25lbs to go and I'm losing about 1lb/week. I figure when I reach

a plateau I'll just need to start cutting more calories. This is only my second

week at pulmo rehab, so I'm hoping that will help with the weight loss too. 

>  

> I've never been a thin person and accept for yo-yo dieting I didn't eat like a

thin person either. Now my life depends on making this lifestyle change and

its not easy; but I'm working it by taking it one-day-a-time.

>  

> C_53_Familial IPF_5/09, Washington

> HOPE doesn't disappoint!

>

>

>

>

>

>

>

> From: teddyspenguins <teddyspenguins@ yahoo.com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Thu, January 28, 2010 1:12:09 PM

> Subject: re: transplants- am I being too sensitive???

?????????

>

>  

>

> Hi everyone,

> It's nne, haven't posted for awhile and debated bringing up this topic,

but this is the group I trust who will be honest with me. I was seen by a

pulmo-dudette at NY Presbyterian in October and after a series of blood tests

finally got a diagnosis of fibrotic NSIP caused by Sjogren's Syndrome an auto

immune disease. I was told I was over weight and need to get the Sjogren's under

control before I could be considered for a transplant. I lost about 7 lbs. I am

taking 30mg of prednisone and 20 mg Methotrexate, Restasis for dry eyes, evoxac

for dry mouth,zoloft for depression 100mg. Well for the past 3 weeks I have been

" stuck " on 193 lbs- I can't seem to loose any more weight. Two weeks ago, the

nurse coordinator leaves a message on my cell asking me to call back to let her

know how much weight I lost. I call back and she said I am still obese, bmi of

31 which can't be more than 30. I asked her what my weight needs to be she said

170 (i'm 5' 5 " ). I

> laughed and said it's been over 20 years since I have been 170. Then she said

how about 180 (?) I got REALLY annoyed- I said are we negotiating- how about

185. Meanwhile she must have called me obese at least another 5 times!!!!(I' m

too sensitive right?) Anyway she said she would call back when she spoke to the

doctor. The next day she leaves a message that dr said wait until Feb 11, day

before follow up appt, and if I am not at least 180 to postpone appt. This

weight issue is really getting to me. Anyway the last thing I want to watch is a

webinar with NY Presbyterian! !!!!

>