Re: Cindi

[Guest guest]

Hi Cindy, I am glad to see a post from you. Hello to Dad.. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. WOw Janie...what a story you have to tell. Are you on oxygen? My dad was diagnosed in 2005, but had signs many years before and was misdiagnosed. He was even dx with alzheimers at one time...CRAZY. Glad you joined this group it is very helpfulCyndi (dad pf 12/05)From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support Date: Sunday, July 19, 2009, 4:06 PM Hi All,I recently joined the group and have found it to be very helpful. My name is Jane (Janie), I am 55 years old and live in northern Wisconsin. I was diagnosed with IPF in October of 2004--the year I turned 50. What a wake up call that was! The first pulmonologist I saw diagnosed it immediately but said there was nothing they could do for me at their facility and referred me to Mayo Clinic in MN. Luckily, I had a friend that was able to pull some strings and I was seen at Mayo in 12/04. At that time, I was put on massive doses of prednisone (60 mg at first) and Imuran. I was not able to tolerate Imuran--it made me violently ill--so I was put on CellCept (2 grams/day). Doctors there thought I was a good transplant candidate since I was healthy except, of course, for my lungs. After going through the evaluation in August of 2005, I was accepted as a candidate and continued with my 3 month evaluations and signed up for every study group that wanted me. In June of 2006, in a routine CT scan for one of the research groups, they discovered a lump in my thyroid. A biopsy revealed that it was "suspicious" so I had part of my thyroid removed in 7/06.. It turned out to be malignant but had not spread so I needed no further treatment. I was inactivated on the list for 6 months to be sure I remained cancer free. After the 6 months, I was #1 on the list and told to have transportation arrangements in order and my bags packed for when I "got the call". Then in Spring of 2008, I started feeling very fatigued, weak and the shortness of breath increased to the point that I could hardly get out of bed. Blood tests revealed that I was anemic so I again was inactivated on the list and scheduled for an endoscopy and colonoscopy. The colonoscopy revealed a baseball-sized tumor and surgery was scheduled in 5/08. The tumor was malignant but encapsulated so, once again, I needed no chemo or radiation. Best case scenario if you have to have cancer. The bad news is I was taken off the list for 5 years (4 years now) to be sure the cancer doesn't reoccur.Whew. .. . are you still with me? So now I am taking the best possible care I can of myself with wonderful support and love of family and friends. This disease has been a blessing to me in many ways, as strange as that sounds. I've learned to take one day at a time, look for the beauty and good in each day, and to count my blessings.Thanks for listening and I look forward to chatting with all of you.Janie