Re: Re: Introduction Janie

[Guest guest]

It's nice to meet you, Pravin, and thank you for your encouraging words. I tend to downplay things because I feel everyone has their own trials to deal with. After recovering from my colon surgery and being delisted I was angry and felt so hopeless. I honestly didn't know how I would get through 5 more years. But you're right, I remember one of my first pulmo doctors at Mayo saying that a transplant isn't a quick fix and I was better to prolong the pre-transplant period as long as I could. I also have faith that I am exactly where I am supposed to be right now and I need to take the best care I can of myself each day. My happiest moments are times I spend with my family. We have two grandsons, 3 years and almost 1, who have come into our lives since I was diagnosed with IPF and they bring

us so much joy. I like to look at the world through their eyes and experience the innocence, wonder and beauty of it all.I see you were diagnosed in 2004 and listed in 2005, like me. How long has it been since you were"delisted" and how are you feeling? I'd like to hear more of your story.Take care,Janie (55; IPF 10/04; WI)Subject: Re: Introduction JanieTo: Breathe-Support Date: Monday, July 20, 2009, 11:24 AM

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> From: Jane Roush <janieann54@ yahoo. com>

> Subject: Introduction

> To: Breathe-Support@ yahoogroups. com

> Date: Sunday, July 19, 2009, 4:06 PM

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> 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

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> 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

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