Introduction

[Guest guest]

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