Re: Jim

[Guest guest]

Jim,

Welcome to you! As we always say I'm sorry that you had reason to find us but happy that you did. It sounds like you have a

wonderful family and I am sorry for the loss of your daughter.

My name is Beth, I'm 48 (I'll be 49 next month) and I was diagnosed 2 years ago with fibrotic NSIP which is one of the many known forms of pulmonary fibrosis. My last day of work was May 26, 2006. (That's leaving out 2 days I attempted to go back to my office in August of 06. Those days clarified for me that it was not possible to resume my "normal" life.) I admire the way you've carried on lugging your oxygen behind you though I wonder about the cost to your health over the long term. Your doctor at Mayo was correct (as I'm sure you know) about protecting yourself from infection by avoiding crowds and such. That said, I totally understand your reluctance to give it up.

I wish I could tell you that talking honestly about your illness won't change anything or the way people will treat you. I wish I could say that but of course it's not true. Most of us have experienced the changes in others perceptions of us when they find out we have a fatal disease. For me, it didn't occur to me not to be open about it with pretty much everyone. It just never crossed my mind and I was surprised at some of the reactions I received. But even given that I'd still do it the same way again. It would be too stressful for me to put up any kind of facade. It's hard work with this illness to stay healthy and it would be infinitely more difficult if I had to pretend there was nothing seriously wrong.

I think it's an excellent idea to use the opportunity of being honest about your illness to educate others and raise awareness about pulmonary fibrosis. Most people have never even heard of it.

Please use, as Peggy said, the resource of the Pulmonary Fibrosis Foundation for useful information to share with others. And feel free to use all of us to get ideas. But most of all please, please, please look after yourself. Give serious consideration to retiring and getting some rest. You will likely extend your life if you reduce your stress.

Again, welcome aboard! I hope you find the support and friendship here that I have!

Beth

Co-Moderator Breathe-Support

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

New To Group

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