New Information

[Guest guest]

Hello to Everyone,

I've posted just a few times here on Breathe Support, but now have some new information for all of you to respond to if possible. I am not new to this disease, having been diagnosed by an Open Lung Biopsy with NSIP in Nov '98 in CA. I was evaluated for a lung transplant in Dallas in April 2000, but was told I was too healthy at that time.

I have taken various dosages of Prednisone since the beginning, at first only Prednisone at 40 mg and on for 6-7 months, off for 3 mos. and back on for 6-7 mos, before adding 200 mg of Imuran in April 2000 and tapering off of Prednisone to 2.5 mg the past 3-4 years. I have only had to use oxygen for the past 4+ years when exercising.

I had a respiratory illness the first of Feb (treated like I had pneumonia), and then got the flu the first of March, which I think actually turned into pneumonia. I've been on oxygen 24/7 ever since. Of course much higher doses of Prednisone, now at 20 mg for past 6-8 weeks. 200 mg Imuran dosage is still the same.

I had tests for a blood clot in lung (ct scan) plus looking for any masses or infection, both which were negative. Also, tested for pulmonary hypertension, which I have mildly 40-45. Also, I was tested to see if I was anemic - not.

Saw my pulmologist at Vanderbilt in Nashville last Friday. (I now live near Knoxille, TN.) He redid the echocardiogram and had the same results. His thinking is the disease has now progressed to where if I don't get better in the next month, I need to start rethinking a transplant. Thankfully, Gynne's responses have calmed most of my fears on this subject. Thanks, Gynne!

I still feel that I am slowly recovering from pneumonia and may start to "perk" up and be able to walk longer and longer on the treadmill before dropping below 90 sats. I've always been an avid exerciser and hate to miss my rehab. My sats on the treadmill are all over the place, ranging from being able to walk only 1 minute to over 27 minutes some days. There doesn't seem to be any pattern yet. Also, why some days can I walk longer and other days not?

The PFT's at Vanderbilt were the same as previously done a year ago. That didn't make sense to me either.

Now I am asking if anyone else has had this much trouble recovering from pneumonia and am I just "wishing" I will recover and won't have to make the decision to explore once again lung transplant.

Thanks for any of your responses.

Sherry , Age 64

NSIP Nov '98, PBC '98, Bronchiectasis 2000

(PBC - autoimmune liver disease)