Hello from a new member

[Guest guest]

Hello everyone, my name is Sheila Jadwin am 58 years old and I have

been recently diagnosed with IPF. I live in N Al so most of my care

will be directed at Uab in Birmingham. Although this is a new

experience for me , I am very familiar with the disease. My late

husband was the first single lung transplant patient at UAB

in 1989. He lived 36 hours at age 42 but I feel he lived his last

year in hope and that the doctors learned from the experience and

have since developed some better proceedures. At least that is what

they told me as I went through the evaluation process in Jan. They

are averaging about 35 a year now. For me the progression is very

early and my diagnosis was very early. I had a dry cough and had a

chest xray done on my annual physical. First report was pneumonia,

of which I had no symptoms, then fear of a blood clot and a CT scan.

The fibrosis was found on the scan but raised no alarms with any of

the doctors reviewing the report. I went to my doctor and asked for

the report and then asked for a specialist. From there it was all

the testing to include a lung biopsy. Then off to Birmingham to see

the specialist there who confirmed IPF and set about the transplant

evaluation process. Lucky it was done because they found a blocked

artery in my heart which has since been repaired with a stent. Now

the frustration begins because my question is " what do I do now " . I

am interested in some of the new drug studies but at the same time

don't want to be made sicker when for now I feel fine. I also don't

want to get involved with heavy steroid use because I saw nothing

good come from that when Mike was alive. I have an appointment with

my original docor here in Huntsville just so someone is around to go

through this process with me. I had the feeling when I left B'ham

that their interest was in the specialty and since I am not ready

for them they will just monitor. So as a patient I will rather

deserted... But on the bright side I have a wonderful life partner,

two grand kids and 7 grandchildren who love and care for me. I also

raise breed and train and show Bernese Mountain Dogs. They keep me

grounded and focused on what living is about and let God handle the

rest.I am glad to have found a group such as this so that I don't

feel so isolated. Maybe I can be of support to some of you too who

are experiencing this disease as well as those who are giving care

since I have been there too. Hope all of you have a good day . I

have to do shopping for the newest granddaughter due in April. All

my best, Sheila Jadwin in Alabama