New To Group

[Guest guest]

Hi, I am new to this group and would like to introduce myself. My

name is Jim and I live in Junction City, KS which is 120

miles west of Kansas City along I-70. We are right next to Ft.

Riley. I am 56 years old, been married for almost 34 years and have 6

children. My wife and I had 2 biological daughters and then adopted

a family of 4 kids - 2 boys and 2 girls. At the time of adoption

they were 5,7,8,9.

Three years ago yesterday, one of my adopted daughters passed away

from Hepatitus C she contracted sometime during her first year of

life. She was 26 yrs old. All the rest of my kids are from 26 to 32.

I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in

September 2000, a month after my brother passed away from IPF. He had

lived 10 years from the time of diagnosis and was number 1 on the

lung transplant list at Mayo Clinic when his right lung collapsed.

They found that he had holes in his lungs. After re-inflating it and

being in the hospital from April to June, he was released to only

have it collapse again in July and then pass away in August,2000.

We have not been able to establish any environmental cause of his or

my IPF and no other family member has any signs of it. They diagnosed

my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I

have two distinct lung diseases...how fun!!!

I was started initially on the dreaded prednisone with all of it's

side effects. Eventually 9 months later, I was phased off of

prednisone and onto Imuran. It seemed to keep my status stable

and " steady " . In 2005, the Imuran seemed to stop working and they

swiched me back to prednisone for a few months and then onto

Cellcept - an anti-rejection med for post-transplant patients. I am

currently on 2000 mg a day and am stable - although I have gradually

had to have more and more o2 to function. I have had to be

hospitalized for pneumonia and/or congestive heart failure in the

last 8 years. MY x-rays and CT scans don't show an enormous growth of

fibotic tissue but my symptoms have become worse until I am on 6 lpm

of o2 and that doesn't keep me from getting out of breath when I

walk. It just makes it bearable.

I am still working as a School Social Worker full-time, carrying and

dragging my o2 along with me from building to building as I work in 3

different schools. (I laughed in 2000 when my Mayo CLinic doctor

suggested that I stay away from people who are sick and large

crowds. I am exposed to 1,000 kids a week and whoever they are

exposed to as well.) I also teach parenting and fatherhood classes

in the evenings.

Of course, I am exhausted a lot - who isn't these days - and try to

get my rest but I have - how do they put it... " miles to go before I

sleep " . I am thinking that this might be my last school year to work

as I am not sure how I can make it if I keep getting worse.

My attitude about my disease is positive although it wouldn't have

been my choice to get it. Ha!

I am sure I will have other questions to ask about later on but the

main question I am dealing with is when and how to tell the " public "

that I have IPF. Now that may sound weird, but I have not told the

people I work with about having IPF. They obviously know I have a

problem when I have been on o2 24/7 for the past 3 years. They know I

have Sarcoidosis which they understand has only a 10% mortally rate

but only a handful of close friends and of course my family, know

about the IPF. You might ask why I haven't told anyone and the reason

is that I didn't want them to treat me differently and I do not trust

one of my supervisors who has a lot of control over where I work,

etc. I have been concerned that if he knows the extent of my problem,

he may start limiting what I can do based on HIS idea of what I

need ...not mine. Also, our HR department has become very strict in

the past few years about sticking strictly to regulations no matter

what the situation. I didn't and don't want them to control what I

do either.

My problem is that I feel that I may not be able to work much past

this school year and I thought I should reveal my situation to my co-

workers now and use my situation to inform others about IPF. I would

like to start a local IPF/Lung disease support group, as we don't

have one within 100 miles. I can't do that without people knowing

what I have as our community is small and the grapevine works VERY

well. As a result of the parenting classes I teach and my public

speaking in the community, I am known in a broad circle of

interconnecting groups. It would be a matter of a week before the

word would spread.

What are your thoughts on my situation? Should I tell them at the

beginning of the school year or wait until I actually have to quit

working? If I wait until then, I may not have the energy or " time "

to start the support group.

Jim