Re: I just got back from Lexington

[Guest guest]

I cannot weigh over 190 lbs. for my 5' 7" body.

The transplant Dr told me I needed to loose 60 more lbs. to fit into the weight criteria for transplant. He said that weight criteria was very strict for transplant recipients. I weighed 220, then and am 5'7", too.

kiss kiss.

~Ginger~

Dx. IPF/'04

[Guest guest]

Hey, Everybody: I just thought I would share some bittersweet news with you all. I seen the Pulmonologist today up in Lexington, KY and he said that there is a possibility that I was misdiagnosed with having IPF. He said he wouldn't say if I did or if I didn't until he ran some more tests. He wants me back in two weeks at the University of Kentucky Hospital for a Special type of Cat Scan and he wants other types of breathing tests done. He ordered blood work to look for diseases. I had the blood work done today. The down side to all of this is, these dang men around this town that call themselves Dr's waited so long to find out that my oxygen levels were so low, that my heart has enlarged from lack of oxygen. Like three years of lack of oxygen. I am so mad. But at the same time I am hopeful for a new and better diagnosis. He said if it is the type of lung disease he thinks it is, there is treatment

and I should get better as time passes without me smoking. He even gave me the information I needed about what weight I needed to be at in order to be eligible for a lung transplant. I cannot weigh over 190 lbs. for my 5' 7" body. He said if he were I, he would start trying to loose the weight immediately. I assume, just in case it does turn out to be IPF. Does anybody know how denise done on her biopsy? I have been so busy the last two days, that I haven't been able to ready any posts. Barb in KY Sher K Bauman wrote: Grey, you will be in my prayers. I pray for all of us to find our

own strengths. Sher PF 5-06 Questions I just received the information from the Pulmonary Foundation.Wow. A downer to read. Questions: 1. Why is exercise important? 2. I'm waiting to begin pulmonary therapy and I wonder if you find this

helpful/necessary/beneficial? I know "it depends" on the who, what and so on. 3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a temporary thing. Thanks so much.--Sher

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Barb, I hate to wish you had another disease, but I hope it turns out you do and a treatment can be used. I will pray for you. Have you been suceeding on the smoking? It's a hard row and I'm so proud of you!! Have they set up the CT scan yet? If not hopfully soon because you will be on pins and needles until you here from the Dr again. IPF-7/05Barbara Soice wrote: Hey, Everybody: I just thought I would share some bittersweet news with you all. I seen the Pulmonologist today up in Lexington, KY and he said that there is a possibility that I was misdiagnosed with having IPF. He said he wouldn't say if I did or if I didn't until he ran some more tests. He wants me back in two weeks at the University of Kentucky Hospital for a Special type of Cat

Scan and he wants other types of breathing tests done. He ordered blood work to look for diseases. I had the blood work done today. The down side to all of this is, these dang men around this town that call themselves Dr's waited so long to find out that my oxygen levels were so low, that my heart has enlarged from lack of oxygen. Like three years of lack of oxygen. I am so mad. But at the same time I am hopeful for a new and better diagnosis. He said if it is the type of lung disease he thinks it is, there is treatment and I should get better as time passes without me smoking. He even gave me the information I needed about what weight I needed to be at in order to be eligible for a lung transplant. I cannot weigh over 190 lbs. for my 5' 7" body. He said if he were I, he would start trying to loose the weight immediately. I assume, just in case it does turn out to be IPF. Does anybody know how denise done on her biopsy? I have been so busy the last two days, that I haven't been able to ready any posts. Barb in KY Sher K Bauman wrote: Grey, you will be in my prayers. I pray for all of us to find our own strengths. Sher PF 5-06 Questions I just received the information from the Pulmonary Foundation.Wow. A downer to read. Questions: 1. Why is exercise important? 2. I'm waiting to begin pulmonary therapy and I wonder if you find this helpful/necessary/beneficial? I know "it depends" on the who, what and so on. 3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a

temporary thing. Thanks so much.--Sher Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

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[Guest guest]

Barb,

So glad to see you posting and ever so glad that you saw a REAL DOCTOR today. Some small town docs are terrific but some are just lazy! Guess that holds true of city docs, too.

How long is the drive to Lexington. That is a beautiful drive. Especially on a lovely spring day. See any horse farms?

I know that you feel better knowing that at least something is happening! I wonder how many people are just sent home to die when there is treatment available.

Hugs to you!

Joyce > Grey, you will be in my prayers. I pray for all of us to find our own strengths. Sher PF 5-06> Questions> > > I just received the information from the Pulmonary Foundation.Wow. A downer to read.> Questions: > 1. Why is exercise important?> 2. I'm waiting to begin pulmonary therapy and I wonder if you find this helpful/necessary/beneficial? > I know "it depends" on the who, what and so on.> 3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a temporary thing.> Thanks so much.--Sher> > >

[Guest guest]

OH NO ! that means at 5'3 " I better stop eating. I have lost some but not near enough.

I can't make up my mind about the transplant. The quality is what I'm concerned about. Anyone got Ideas on that ??? God Bless Peggy

on 5/9/06 10:48 PM, TongueDancer2U@... at TongueDancer2U@... wrote:

I cannot weigh over 190 lbs. for my 5' 7 " body.

The transplant Dr told me I needed to loose 60 more lbs. to fit into the weight criteria for transplant. He said that weight criteria was very strict for transplant recipients. I weighed 220, then and am 5'7 " , too.

kiss kiss.

~Ginger~

Dx. IPF/'04

[Guest guest]

Ginger: Just send me the extra 40lbs because I've shrunk 1" lately because of back. That will still keep me at around 160# then we will all work( lol ). IPF 7/05TongueDancer2U@... wrote: I cannot weigh over 190 lbs. for my 5' 7" body. The transplant Dr told me I needed to loose 60 more lbs. to fit into the weight criteria for transplant. He

said that weight criteria was very strict for transplant recipients. I weighed 220, then and am 5'7", too. kiss kiss. ~Ginger~ Dx. IPF/'04

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[Guest guest]

Peggy,

Even thought I am going for evaluation, I too am hesitant about transplant. I have ethical questions which I plan to discuss with someone while I am there. Then the statistics are not great. I have known of people who just spend the next few months in and out of hospitals and nearly helpless after transplant....and I have also heard of the great sucess stories. It is the unknown that I have problems dealing with. I have really drug my feet on this.

Joyce > > > I cannot weigh over 190 lbs. for my 5' 7" body.> The transplant Dr told me I needed to loose 60 more lbs. to fit into the> weight criteria for transplant. He said that weight criteria was very strict> for transplant recipients. I weighed 220, then and am 5'7", too.> kiss kiss. > ~Ginger~> Dx. IPF/'04> > >

[Guest guest]

Barbara...yes, bittersweet news. The waiting is the hardest right now, isn't it? Courage!

Sher pf 5-06

Questions

I just received the information from the Pulmonary Foundation.Wow. A downer to read.

Questions:

1. Why is exercise important?

2. I'm waiting to begin pulmonary therapy and I wonder if you find this helpful/necessary/beneficial?

I know "it depends" on the who, what and so on.

3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a temporary thing.

Thanks so much.--Sher

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

I wonder how we could locate some transplant patients or find a site that tells about after transplant.

A few weeks ago on a TV game show, DEAL or NO DEAL there was a young girl 23 24 years old a CF patient that had just had two lungs transplanted two months ago.. She was jumping around and you would never know.

She and her family were so very happy. That's what I want energetic " YOUNG " wouldn't be out of possibilities. (LOL major joke)But I would be happy with being able to be me again for a while. God help us with these decisions

I'm sure when the decision is to be made we'll know what to do.

Bless you, Peggy 9/04 ipf

on 5/10/06 7:41 AM, janne5303 at joycedalton29@... wrote:

Peggy,

Even thought I am going for evaluation, I too am hesitant about transplant. I have ethical questions which I plan to discuss with someone while I am there. Then the statistics are not great. I have known of people who just spend the next few months in and out of hospitals and nearly helpless after transplant....and I have also heard of the great sucess stories. It is the unknown that I have problems dealing with. I have really drug my feet on this.

Joyce

>

> In a message dated 5/9/2006 7:13:54 PM Central Daylight Time,

> babs594@... writes:

> I cannot weigh over 190 lbs. for my 5' 7 " body.

> The transplant Dr told me I needed to loose 60 more lbs. to fit into the

> weight criteria for transplant. He said that weight criteria was very strict

> for transplant recipients. I weighed 220, then and a

[Guest guest]

Hey, Joyce: It is about a 2 1/2 hr. drive to Lexington. Yep, seen some horse farms and cow farms too. Got behind a couple of "farmer johns" on the way up. I think I might have a lead foot. I do feel better seeing a Dr. that wants to get to the bottom of my fibrosis. I tell ya, it is going to be a long two weeks, before I get to talk to him again. The first question I gave him was, "are you familiar with Idiopathic Pulmonary Fibrosis?" and he said, "unfortunately, I am". I have a feeling, I might have a good dr. here. Hope so. Thanks for writing me. I hope you are doing well. Barb in KYjanne5303 wrote: Barb, So glad to see you posting and ever so glad that you saw a REAL DOCTOR today. Some small town docs are terrific but some are just lazy! Guess that holds true of city docs, too. How long is the drive to Lexington. That is a beautiful drive. Especially on a lovely spring day. See any horse farms? I know that you feel better knowing that at least something is happening! I wonder how many people are just sent home to die when there is treatment available. Hugs to you! Joyce > Grey, you will be in my prayers. I pray for all of us to find our own strengths. Sher PF 5-06> Questions> > > I just received the information from the Pulmonary Foundation.Wow. A downer to read.> Questions: > 1. Why is exercise important?> 2. I'm waiting to begin pulmonary therapy and I wonder if you

find this helpful/necessary/beneficial? > I know "it depends" on the who, what and so on.> 3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a temporary thing.> Thanks so much.--Sher> > >

[Guest guest]

Hey, : Nope, I haven't succeeded in quitting smoking. Four days free of it and then I lit up. My chest hurts me now when I smoke so, I think this is my last pack and back on the Commit Lozenges. Yes, the cat scan and the breathing tests are already set up for the 22nd of this month. Take care and thanks for writing. Barb in KYlinda arnold wrote: Barb, I hate to wish you had another disease, but I hope it turns out you do and a treatment can be used. I will pray for you. Have you been suceeding on the smoking? It's a hard row and I'm so proud of you!! Have they set up the CT scan yet? If not hopfully soon because you will be on pins and needles until you here from the Dr again.

IPF-7/05Barbara Soice wrote: Hey, Everybody: I just thought I would share some bittersweet news with you all. I seen the Pulmonologist today up in Lexington, KY and he said that there is a possibility that I was misdiagnosed with having IPF. He said he wouldn't say if I did or if I didn't until he ran some more tests. He wants me back in two weeks at the University of Kentucky Hospital for a Special type of Cat Scan and he wants other types of breathing tests done. He ordered blood work to look for diseases. I had the blood work done today. The down side to all of this is, these dang men around this town that call themselves Dr's waited so long to find out that my oxygen levels were so low, that my heart has enlarged from lack of oxygen. Like three years of

lack of oxygen. I am so mad. But at the same time I am hopeful for a new and better diagnosis. He said if it is the type of lung disease he thinks it is, there is treatment and I should get better as time passes without me smoking. He even gave me the information I needed about what weight I needed to be at in order to be eligible for a lung transplant. I cannot weigh over 190 lbs. for my 5' 7" body. He said if he were I, he would start trying to loose the weight immediately. I assume, just in case it does turn out to be IPF. Does anybody know how denise done on her biopsy? I have been so busy the last two days, that I haven't been able to ready any posts. Barb in KY Sher K Bauman wrote: Grey, you will be in my prayers. I pray for all of us to find our own strengths. Sher PF 5-06 Questions I just received the information from the Pulmonary Foundation.Wow. A downer to read. Questions: 1. Why

is exercise important? 2. I'm waiting to begin pulmonary therapy and I wonder if you find this helpful/necessary/beneficial? I know "it depends" on the who, what and so on. 3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a temporary thing. Thanks so much.--Sher Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

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[Guest guest]

Barbara I am sorry to hear they didn't find out earlier, but at the same time very glad to know that your condition could be better than IPF. What condition does he suspect you could have? All the best Noelle Barbara Soice escribió: Hey, Everybody: I just thought I would share some bittersweet news with you all. I seen the Pulmonologist today up in Lexington, KY and he said that there is a possibility that I was misdiagnosed with having IPF. He said he wouldn't say if I did or if I didn't until he ran some more tests. He wants me back in two weeks at the University of Kentucky Hospital for a Special type of Cat Scan and he wants other types of breathing tests done. He ordered

blood work to look for diseases. I had the blood work done today. The down side to all of this is, these dang men around this town that call themselves Dr's waited so long to find out that my oxygen levels were so low, that my heart has enlarged from lack of oxygen. Like three years of lack of oxygen. I am so mad. But at the same time I am hopeful for a new and better diagnosis. He said if it is the type of lung disease he thinks it is, there is treatment and I should get better as time passes without me smoking. He even gave me the information I needed about what weight I needed to be at in order to be eligible for a lung transplant. I cannot weigh over 190 lbs. for my 5' 7" body. He said if he were I, he would start trying to loose the weight immediately. I assume, just in case it does turn out to be IPF. Does anybody know how denise done on her

biopsy? I have been so busy the last two days, that I haven't been able to ready any posts. Barb in KY Sher K Bauman wrote: Grey, you will be in my prayers. I pray for all of us to find our own strengths. Sher PF 5-06 Questions I just received the information from the Pulmonary Foundation.Wow. A downer to read. Questions: 1. Why is exercise important? 2. I'm waiting to begin pulmonary therapy and I wonder if you find this helpful/necessary/beneficial? I know "it depends" on the who, what and so on. 3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a temporary thing. Thanks so much.--Sher Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com

[Guest guest]

Hey, Noell: The new dr. won't tell me what he thinks it is until he has run all the tests. He has stated though that it is definitely pulmonary fibrosis. Just looking for the cause now. Barb in Ky pf/11-05Noelle Cajigas wrote: Barbara I am sorry to hear they didn't find out earlier, but at the same time very glad to know that your condition could be better than IPF. What condition does he suspect you could have? All the best Noelle Barbara Soice escribió: Hey, Everybody: I just thought I

would share some bittersweet news with you all. I seen the Pulmonologist today up in Lexington, KY and he said that there is a possibility that I was misdiagnosed with having IPF. He said he wouldn't say if I did or if I didn't until he ran some more tests. He wants me back in two weeks at the University of Kentucky Hospital for a Special type of Cat Scan and he wants other types of breathing tests done. He ordered blood work to look for diseases. I had the blood work done today. The down side to all of this is, these dang men around this town that call themselves Dr's waited so long to find out that my oxygen levels were so low, that my heart has enlarged from lack of oxygen. Like three years of lack of oxygen. I am so mad. But at the same time I am hopeful for a new and better diagnosis. He said if it is the type of lung disease he thinks it is, there is treatment and I should get better as time passes

without me smoking. He even gave me the information I needed about what weight I needed to be at in order to be eligible for a lung transplant. I cannot weigh over 190 lbs. for my 5' 7" body. He said if he were I, he would start trying to loose the weight immediately. I assume, just in case it does turn out to be IPF. Does anybody know how denise done on her biopsy? I have been so busy the last two days, that I haven't been able to ready any posts. Barb in KY Sher K Bauman wrote: Grey, you will be in my prayers. I pray for all of us to find our own strengths. Sher PF

5-06 Questions I just received the information from the Pulmonary Foundation.Wow. A downer to read. Questions: 1. Why is exercise important? 2. I'm waiting to begin pulmonary therapy and I wonder if you find this

helpful/necessary/beneficial? I know "it depends" on the who, what and so on. 3. I checked out Puritan and the price for NAC w/them is about half what I just paid. Is this something that you find is a long term supplement? I hate to buy in bulk only to find it's a temporary thing. Thanks so much.--Sher Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. LLama Gratis a cualquier PC del Mundo.Llamadas a fijos y móviles desde 1 céntimo por minuto.http://es.voice.yahoo.com __________________________________________________