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Hi Jackie,

Life is no fun for an 18year old who is spending all their time in the

hospital.

What kind of medical service can they provide at home?

I am surprised that he was evaluated for lung tx with an FEV1 of 39%. That is

a bit high for considering lung transplant.

Is your son on all the best meds? Like zithromax? Nebulized meds? Is he doing

chest physiotherapy?

Have the docs mentioned physical therapy? Often getting more fit, by

walking, stair stepper, bike can increase lung function or at least make you

feel

better and stronger.

I have an article that is excellent about those individuals who choose not to

have a lung transplant. But there are different stages of that. Some say no

and stick with it, others sort of go back and forth on the fence, others

switch to yes when things get rough. Did your son share with you the reason he

does not want a tx? Does he feel it is too expensive? He will be a burden? That

life will end as he knows it ( it will and it will be a great time after).

That the unknown is too hard to deal with? That he knows no one who had a lung

tx and is doing well? Be sure that your son talks to you and his family, to

his docs, to the tx team that evaluated him to get some new and updated info.

Not sure when he had that evaluation. Also, some lung tx centers are not as

experienced in CF lung tx. We are different, we do have different complications,

so finding a center that is CF related more, is the best thing. And I think

meeting with their tx team would be more reassuring to patient and family

hearing their expeierences and success.

I am going to email the article in a separate email, as I think it is very

interesting reading for everyone and also insite into how CF patients facing

lung transplant may react and how their CF team needs to respect that. I also

will let you know that i had a lung tx 6 years ago, my sister 3 years ago. Life

is totally different. Nothing the same as with CF lungs. It is wonderful,

new goals, new adventures and happiness every day that I took that step. I also

wrote a book. I will try to list that below. It is called Taking Flight:

Inspirational Stories of Lung Transplantation. It has many CF stories and other

lung illnesses patients who had a lung tx and what they are doing now and their

thoughts on the process the surgery, the recovery and their donor family. V

ery hard to put it down.

Let me know if I can answer any queistions for you.

Joanne

Joanne M. Schum

Cystic Fibrosis

Bi-lateral Lung Transplant Recipient

September 12, 1997

University of North Carolina Hospitals Chapel Hill

Residence: Upstate New York

email: luckylungsforjo@...

Manager of: Transplant Support - Lung, Heart/Lung, Heart

http://groups.msn.com/TransplantSupportLungHeartLungHeart

" Taking Flight - Inspirational Stories of Lung Transplantation "

Compiled by Joanne Schum

Authored by lung recipients around the world

http://www.trafford.com/robots/02-0497.html

http://www.trafford.com/

>

> Hello,

>

> I have a really hard question to ask, especially since so many members

> seem to be newly diagnosed parents. My 18 (almost 19 :) ) yr old has had a

rapid

> decline in lung function these past 2 years, his FEV 1 is 39. (That's his

> new baseline) I was wondering if anyone has ever had a significant rise in

lung

> function after bottoming out in this number range. I guess I've always been

> an optimistic person, and I can only hope that the inevitable is not really

> happening to my son. He has pleuresy so bad that he is on morphine during

> hospital stays. He used to only use O2 at night, but is now relying on it

pretty

> much 24-7. After going through the entire evaluation process for a lung

> transplant, he has decided it really isn't what he wants to do. His life has

been

> reduced to the hospital just about every 2 weeks, although we are now pushing

> for home health, since there isn't much they can do in the hospital that

> can't be done at home. And at least we don't have to " put up with " the

> inconvienence of having roommates! ( I don't remember who posted it just

> recently, but they were right, it's usually not the child that was the

nusiance,

> but the rest of the family!!)

> Ok, I'm rambling now, so if anyone has had any experiance with where we're

> at in this & %#@!!!! diseade, I'd love to hear about it! Thanks!

> Jacki...mom to a wonderful 18 yr old cf'er

Joanne M. Schum

Cystic Fibrosis

Bi-lateral Lung Transplant Recipient

September 12, 1997

University of North Carolina Hospitals Chapel Hill

Residence: Upstate New York

email: luckylungsforjo@...

Manager of: Transplant Support - Lung, Heart/Lung, Heart

http://groups.msn.com/TransplantSupportLungHeartLungHeart

" Taking Flight - Inspirational Stories of Lung Transplantation "

Compiled by Joanne Schum

Authored by lung recipients around the world

http://www.trafford.com/robots/02-0497.html

http://www.trafford.com/

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