Wednesday, February 18, 2009

Some minor updates

Here are some minor updates since my January visit to Johns Hopkins.

Had echo cardiogram and pulmonary function tests 2 weeks ago. I can't really tell if anything is good or bad with the echo cardiogram but I do get to watch my heart and valves on the screen. Since there's never been anything wrong in the past I doubt there's anything wrong now.

The pulmonary function test (PFT) is a lot easier to measure and compare against past tests. This time all numbers were as good or better then my last test. I always tell the tech administering the test that I'd really would have liked to have a baseline from before I was diagnosed to see how it compares to now. But without that, as a comparison against previous tests and the baseline numbers things are either above their baseline or better then previous tests, none of which themselves were bad.

Once Dr Wigley at Johns Hopkins gets the results of the tests and can review them, I'd expect a call from him to tell me to stop taking the cellcept. I'll post back when that happens.

In not so good news, I was let go from my job last week. They are "restructuring" and they have eliminated the management levels (myself and my managers) and will have the business team manage the staff which will remain. Not a great time to be let go but I'm confident I will find another opportunity. I feel bad for those on my staff which remain, as the business isn't capable of successfully managing what I did. How do I know? Well that was what it was like before I showed up and it was a disaster. Maybe my managers and I did too good a job with getting everything in order and they figured they could take it over again? My staff that remains has already contacted me that they will immediately start to look. I wish them all the best.

So that's my brief update and if anything changes I'll post back.


Anonymous said...

I'm sorry to hear that you lost your job.

I just want to thank you. I just discovered your blog a couple of months ago and its been so helpful. Your story is so similar to my husband, who has diffuse scleroderma and has been on Cellcept. He's had extensive skin disease with tendon rubs, painful joints, carpal tunnel syndrome from very swollen hands, and severe Raynauds. Fortunately he's had no internal organ involvement. I had no idea, until I read your blog, that the Cellcept dose could be increased to 6/day, which is just what he needed to get on top of this disease. He has been able to taper his prednisone down now, which he was never able to do in the past and has incrementally improved on the higher dose of Cellcept even as he has tapered his prednisone.

Best of luck, both with the job hunt and the continued journey through this difficult disease. I hope you get the go ahead to stop your meds.

Beth E. said...

I also want to express my concolences as to the loss of your job. I hope this year brings a new beginning for you.

I am so glad to have found your blog. I am also a patient of Dr. Wigley's. I have tested positive for diffuse scleroderma for three years, with some symptoms (Raynaud's, esophogeal disfunction, muscle pain and a recent Pulmonary Hypertension scare which turned out to be false, thank goodness) however no skin involvement as yet. Your experiences have given me new hope. I fell prey to the demoralizing Internet stories, just waiting for something bad to happen. I have since met people through the Scleroderma Clinic, including, of course, Dr. Wigley, who have made me feel otherwise. Your story is inspiring! Thank you.

Wishing you all the best!!