nne

[Guest guest]

I'm so sorry that you are going into this surgery with so little support. If I could be there with you I would do it in a heartbeat. It sounds as though your family has more than it's share of things to struggle with and I'm sure this feels like the straw that breaks the camels back.

I wish you felt differently about the outcome. I will be praying that it all goes smoothly and with no complications. I know you say your company has good death benefits. How about disability benefits? How about something to take care of you? As difficult as it is, you may not have any choice but to level with your family sooner rather than later. You are really not doing them any favors by keeping them in the dark. Give them a chance to love you and support you.

Please let us know how it all goes. You and your family are in my thoughts and prayers.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, July 21, 2009 1:07:29 PMSubject: Re: TO VATS or NOT TO VATS

Boy I wish this discussion was on here last week. I go for the Vats, wedge resection tomorrow. To tell you the truth, which I would only say here- I hope I die- I am worth so much more dead than alive, great benefits at my company. Right now my family is falling apart about tomorrow and I have NOT given them any reason to- I have been my cheery self at home. They have no idea how I really feel. My husband has mental problems, suffered a breakdown two years ago and works part time so I am the breadwinner. My father was on a ventilator for 3 weeks after a triple bypass- will this mean I am at greater risk? I guess it's too late to change anything.nne, 55, ILD- 6/09>> HI all. I've been out here

listening and watching your comments for sometime. I find the site helpful, informative and interesting.> > I am a 58 year of woman with diabetes, acid reflux disease, High blood pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not confirmed.) I have been on O2 24/7 since 02/01/09. I am still working and amazingly mobile ( with the help of my husband) and self reliant in most things. Working is getting more difficult and I will probably give it up this fall or winter.> > The Pulmonary Fibrosis DX has not been confirmed because I balked on having a lung biopsy. I now have 2 pulmonary guys and 1 surgeon saying although there are some additional risks for me they are 90% sure they can do the scope procedure and feel it is important to have it done so they can determine weather I have the type of fibrosis that will respond to steroid treatment. They will not start me on steroids without the procedure because steroids

will definitely push me into insulin dependancy, and will wreck havoc with my sugar levels. > > At this time I am extremely happy with my progress on O2,and feel so much better that I have in the past year that I am not inclined to rock the boat.> > On my next visit to the surgeon if the 3 month followup catscan show I am pretty much holding my own, I do not intend to have the biopsy. Not because of the surgical risk, but because of previous experience with steroid side effects. A bacterial infection treated with steroids in 2002 is the reason I am diabectic now. I want to put off the use of insulin as long as possible. Of course if the catscan shows a rapid or marked decline, I will have to reconsider. > > I do not know if this is a wise or foolish decision, but I am very concerned about quality of life over quantity. > > If any of you are interested in commenting or relating your experience, I

would much appreciate it.> > Thanks,> > Margaret, Chandler, AZ>