Re: Chest Pain-jaime

[Guest guest]

Hi Simon,

mine started out as bronchitis and after several months of being on

several antibiotics they decided to do some xrays to make sure i

didn't have pnuemonia. from that i had a high res ct scan, a

bronchoscopy, then a biopsy and PFT's.

a year later i am being told i do not in fact have IPF or PF but

what is called eosinophilic granuloma aka langerhan's.

i have been referred for lung transplant evaluation. i am told

however that i will more than likely be told i am too healthy as

this time to be considered as a candidate but it will at least get

me on the list.

i don't know where your dr's went to school or what kind

of " personas " they have but it sounds like they weren't very

concerned with your well being or mental status. if i were you i

would take all of my test results, they have to give you copies if

you ask for them, and i would get at least one more opinion, maybe

even 2.

either way whether it was IPF or PF or the granuloma that i have,

it's still devastating regardless. one because of our ages, 2 if

you're a parent with small children, 3 if like me it forces you to

no longer be able to work and go on disability (which not everyone

can be approved for right away)

and i'm not saying it isn't devastating for anyone at any age...i

just feel a little more so for those our age. some of the others

here have had a chance to live a full and meaningful life before

being diagnosed and that is something some of us younger ones may

not have a chance to experience.

i am living each day to the fullest extent that i possibly can. some

days i can do plenty. some days i can't do a gosh darn thing. it

just depends on the weather, the meds, the shortness of breath, the

O2 levels....whether my kids are getting on my nerves or not....lol

but even so, i try to do as much as i can when i can. i also try and

write down at least 3 positive things a day. even if it is something

as simple as " i am a goofball " now some would say is that a positive

thing? well sure it is. it means i still have the ability to laugh

and make others laugh as well.

if you ever need someon to talk to, you can call me anytime day or

night. home and cell

get another opinion!

God Bless, take care of yourself.

>

> Hi, , Its very nice to meet you. My story is I started to

become

> unwell last November, when I started to feel very under the

weather,

> such as being fatigued, lathargic, basicly not being myself. Also

I

> noticed that my voice had gone very ruth and croaky which was the

> first thing that made be go to the doctors. He gave me some

antibotics

> and that was that. However over xmas I didnt get any better and I

was

> still not feeling my self. Between January and April, I became to

> expirience mild chest pain. So I had chest x-rays, CT-scans and HR-

CT-

> scans and nothing was showing as adnormal other than my left lung

> being small but they thuoght this was due to a chest shape defect

I

> was born with. So between April and June my chest pain got worse

and

> was also starting to feel tight and heavy. So again i kep going

back

> to the doctors and they were saying this was just mild asthma and

that

> I should not keep bothering them. Also they keep saying that I

should

> see a councelar as im just stressed and that there is proberbly

not

> much wrong with you. I knew this wasent stress or ashtma felt like

as

> I had it in the past. Even people at work was saying there was

nothing

> wrong with me, but I was feeling realy realy unwell but I still

wanted

> to work. before I had this problem I had never taken a day of work

in

> my life.

> ThAnyway specialists then thought it would be a good idea to do a

lung

> function test. Which showed as being restricted. about 62% lung

> volume. But the kept saying it was due to the shape of my chest,

which

> is about flat on one side. And I siad that I thought i had stoped

> growing at 21 yo? so why am i getting all this pain now and why am

I

> feeling so unwell with it. So they decided to do a broncoscopy and

> they took sample and found inflammation. So they then siad with

the

> restriction, symptoms and biopsy that it was IPF. When they siad

that

> I know exactly what that was but my dear mum who was sitting next

to

> me didnt know and I just broke down there and then. But I wont go

into

> anymore detail but I have managed to pick my self back up and

fight

> this the best way I can and I know that all the strong people here

> with me, that we can fight this.

>

> Please can you tell me your story? How was you diagnosed? how did

you

> feel when you was told you have pf?

>

> If you would find it more conftable to to contact me direct my

adress

> is simon.hoinca@...

>

> God bless.

>

> Simon.

>