Cindy

[Guest guest]

Cindi,

I'm doing well, thanks for asking. Since you read the posts I won't bore you with a recap. I'm stable and that's what matters. I'm starting a new round of pulmonary rehab in September, looking forward to that. My son, his girlfriend and I are going to the beach in Virginia the first week in August. My first real vacation since April of 2002. I can't wait!

is doing really well. She was treated successfully for the Langerhans and is not even using oxygen any longer. She watches her health carefully but at the moment she's doing really well.

Kerry had her transplant as you know. We haven't heard from her on the board in a whilel but at last report she was doing well. Knowing Kerry she's buzzing around as fast as she ever did.

What machine is he using with his liquid O2? Is he hooking up to the big resevoir or to a portable like a Marathon or something? I'm on 3 liters at rest and 4-6 when I'm active but I've been at that for over 3 years now. He should be able to use liquid without difficulty for some time to come. As long as the provider is willing to fill him up regularly there should not be an issue. Talk to his provider about what options he has.

Look after yourself Cindi, your Dad is blessed to have you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 19, 2009 3:11:54 PMSubject: Re: Introduction

HI Beth,I read all the posts, but at times feel overwhelmed with this monster. My dad is doing good, but very tired. He is on 3 - 3.5 Liters now and is still using Liquid. He loves the liquid oxygen, but we need to see how long he can use it...his machine only goes to 4 so we need to see if they have one that goes higher. How are you doing?Does anyone know how is...did she get a transplant. What about Kerri? I haven't heard anything about them lately.I'm going to try and talk my dad into attending a West Coast get together if we have one.Take Care,Cyndi (DAD PF 12.05)

From: Jane Roush <janieann54 (AT) yahoo (DOT) com>Subject: IntroductionTo: Breathe-Support@ yahoogroups. comDate: 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