Re: My mom's latest check-up...feedback needed...

[Guest guest]

Leanne,

Thank you for responding. I could not agree with your more on the

front of frustration regarding this disease. It literally can be

consuming. My mom does have a pulse ox and is still working for

now. She is an ordained pastor, so she stays extremely busy. She

stays on her oxygen 24/7, attends pulmonary rehab once a week and

does what she can too lose the weight. My mother attended Duke and

Duke saved my dad's life when he had cancer, so there was no other

option in my mom's opinion for treatment when she was diagnosed with

this disease. We can not say enough about the physicians and staff

there. Now if only they could figure this out...that would be even

better, haha.

Peace,

Caroline

> My mom was at Duke last week for her check-up and for

the screening

> process for the Perfenidone Phase 3 trial. According to their

> results, the IPF has currently stopped progressing. Her lung

> function has actually improved so much so, that she doesn't even

> qualify for the trial. We are all praising god right now, but also

> extremely confused. The testing equipment that they used for the

> screening is completely different from what they use for her

routine

> appointments. Could their be a margin of error from some machine

to

> another? She doesn't feel any better and her oxygen still bottoms

> out with the most minimal of activities..I am sorry..I am just

> really confused? The only thing she has done differently is being

> taken off of the Prednisone in May and lost some weight. All they

> could tell her was too keep doing what she is doing and come back

in

> Janurary. When the IPF decides to reactivate, then it will come

> back at full force and she has to be ready for the transplant

> process, etc. They just have no clue when that will be. So..I

> really need to see what you all think. Has this happened to you?

>

> Peace,

> Caroline

>

>

>

>

>

>

> ---------------------------------

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[Guest guest]

Caroline

As for the PFT's --when you have the tests at different locations--each machine is different also. I have tests at my pulmo and also at the University where I am currently listed for a tx. I was told that there are different "authors" for the machines data. So that is one reason you will get different results at different locations. My Resp Therapist even had names of the different authors. So each author has different percentages and data. I hope I explained that so you could understand where I am coming from??

Jan

dx 05/03

listed tx 10/03 (currently inactive) YEAH!!!!!!

-------------- Original message --------------

Caroline,

This disease can be so frustrating. I think that is what is hard for the doctors too. They just never know when things are going to progress so they test us every 3-6 months. I believe that there is a margin of error not only with the machine but with the technician that is giving the test. If you are not comfortable with the results, can you take your mom for a second opinion? Have them redo the pulmonary function test. Does your mom have a pulse oximeter? Is she staying as active as she can? I'm glad to hear that she's improved with being off the prednisone. Duke is an excellent hospital, it has a very good reputation.

Leanne ipf 1/03

Moderator

caroline <jkuvaja@....com> wrote:

My mom was at Duke last week for her check-up and for the screening process for the Perfenidone Phase 3 trial. According to their results, the IPF has currently stopped progressing. Her lung function has actually improved so much so, that she doesn't even qualify for the trial. We are all praising god right now, but also extremely confused. The testing equipment that they used for the screening is completely different from what they use for her routine appointments. Could their be a margin of error from some machine to another? She doesn't feel any better and her oxygen still bottoms out with the most minimal of activities..I am sorry..I am just really confused? The only thing she has done differently is being taken off of the Prednisone in May and lost some weight. All they could tell her was too keep doing what she is doing and come back in Janurary. When the IPF decides to reactivate, then it will come back at ful

l force and she has to be ready for the transplant process, etc. They just have no clue when that will be. So..I really need to see what you all think. Has this happened to you?Peace,Caroline

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