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

[Guest guest]

Beth,I have a question for you and you may say no so there is no hard feelings about it... but... my sister who lives in England will be in Duke Hospital in Feb with her husband who is having surgery. She is a very inquisitive person and knows of what I am going through and I have talked much about this support group. What I wondering was.. if she should happen to the area where pulmonary rehab is would it be alright if she inquired if you were there working out. I am sure she would love to speak to you and you would love to meet her. She is awesome.To: Breathe-Support Sent: Thu, January 28, 2010 9:22:04 PMSubject: Re: re: transplants- am I being too sensitive???????????? Thanks Joyce. I have to admit to being very pleased with myself. I think that once we're older than 45 or 50 it gets so

much harder to lose significant amounts of weight. Add that to how difficult it is to lose weight when we're limited by our lung disease and every pound lost becomes a major victory. I'm so happy to have the program at Duke to participate in. It gets me out every day, exercising and interacting with all kinds of people. I've made friends and haven't struggled with seasonal depression this year the way I usually do. My counselor attributes it at least partially to the daily exercise. It really has made and continues to make a tremendous difference in my life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis

11/08 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 28, 2010 5:33:51 PMSubject: Re: re: transplants- am I being too sensitive??? ????????? mary beth i didn't realize it was 30 pounds that is so wonderful!!! i bet you feel so much better i guess i should go to the wellness center more than 2 or 3 times a week besides the physical health, it would get me out of this moody slump i have been in Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: re: transplants- am I being too sensitive??? ?????????To: Breathe-Support@ yahoogroups. comDate: Thursday, January 28, 2010, 4:21 PM nne, I'm sorry you're feeling so lousy about all this. Trying to lose weight while on prednisone is very difficult. But

they won't transplant you until you are at a safer weight. As unpleasant as that is it is a fact. It's not personal so please don't take it that way. I say this as someone who is heavier than you are so I'm not unfamiliar with the struggle. My suggestion would be a low carb/diabetic type diet. Are you exercising at all? That is what I'm finding makes the biggest difference for me. I can cut my calorie intake severely and I won't lose weight until I start exercising. I've lost a bit over 30 pounds since September, working out 5 days a week in the gym at the Duke Center for Living. I would not have lost an ounce of that without working out. So that brings me to the other suggestion which is rehab. If you haven't been through rehab ask for a referral. If you've already done rehab, do a maintanance or wellness program. You can do this, we can both do

this! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: teddyspenguins <teddyspenguins@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 28, 2010 4:12:09 PMSubject: 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! !!!!

[Guest guest]

the web seminar discussed the need to be physically fit for transplant

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

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. comSent: Thu, January 28, 2010 1:12:09 PMSubject: 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! !!!!

[Guest guest]

i always had a hunch that when the lungs got really bad, to the stage where they really need to be transplanted, losing weight would happen because of loss of appetite or the inability to eat and breathe at the same time

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: transplants- am I being too sensitive????????????To: Breathe-Support Date: Sunday, January 31, 2010, 12:00 AM

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,polymiosit is 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: what do you mean by "a flare up of Sjogren's Syndrome"?

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Counting my blessings: #35 - Dogs playing in the snow.

Consider what a great forest is set ablaze by a small spark. ( 3:5)

To: Breathe-Support Sent: Sun, January 31, 2010 12:00:46 AMSubject: Re: transplants- am I being too sensitive????????????

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,polymiosit is 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! !!!!> >>