Can't believe it's August!
I cannot believe I was just getting out of the hospital 1 year ago trying to get diagnosed with what was wrong - a very smart doctor figured out it was Polymyositis - later "Necrotizing Autoimmune Mediated Myopothy" due to the severity of symptoms (in bed or a wheelchair for 4 months - a walker and crutches for 2 months). Today with a little work I can get off the floor. But I went to the Las Vegas gift and furniture show that I missed last year because of this disease. I wore a pedometer and walked 6.9 miles the first day, 6.2 the second and 3.2 the third day. Lot's of walking in airports, and except for a nap the second day - things were not too bad. My hips get stiff - which is new - but that might be because I am still reducing prednisone - down to 4mg every other day.
While I was in the hospital - I was put in the cardiac ward because the other wards were too full - the cardiac doctor found I had a weird clicking noise. She ordered an echocardiogram and we discovered I had a bicuspid aortic valve and a large-diameter ascending aorta - .2 away from being an aneurysm. The doc said to wait a year - get better and then get myself to OHSU to a cardiac specialist. I see him in 2 weeks. Marfan syndrome runs in our family - it's a connective tissue disorder - so it could be that this myopothy and this heart defect are tied to that. I had an Aunt who was 6'9", and her brothers were nearly 7 foot as well. It's quite possible that this connective tissue disorder is what caused the myopothy and the heart defect. At any rate - I think I am looking at heart valve replacement in the next 2 years, and an aortic stint to prevent the aneurysm from rupturing. I have never had heart problems - so in a way - I am lucky I got stuck in a cardiac care unit where the doctor picked up on the strange noises. But still. I have taken a year to get back to 90% and it will be another 6 months to be 100% and I don't want to have heart surgery. I am not sure how MTX and Imuran will work with that kind of surgery - guess I'll find out!
In the meantime, I am hoping that everyone on the site continues to improve and finds the grace they need to move forward. Every week I plan three things I know are going to be fun - lunch with a friend, a special movie, or a meeting that I am really looking forward to. I chair our Downtown Commission, and am working on a large public art project for a small town near where I live. I wrote a $150,000 grant which got funded for the project, so we are in final planning stages. I also listen to the stand up comedy channel in our town and try to laugh hard once a day. I swear Tim Allen is STILL funny!
All blood panels are normal - second month is a row. I have a very happy Rheumy!
While I was in the hospital - I was put in the cardiac ward because the other wards were too full - the cardiac doctor found I had a weird clicking noise. She ordered an echocardiogram and we discovered I had a bicuspid aortic valve and a large-diameter ascending aorta - .2 away from being an aneurysm. The doc said to wait a year - get better and then get myself to OHSU to a cardiac specialist. I see him in 2 weeks. Marfan syndrome runs in our family - it's a connective tissue disorder - so it could be that this myopothy and this heart defect are tied to that. I had an Aunt who was 6'9", and her brothers were nearly 7 foot as well. It's quite possible that this connective tissue disorder is what caused the myopothy and the heart defect. At any rate - I think I am looking at heart valve replacement in the next 2 years, and an aortic stint to prevent the aneurysm from rupturing. I have never had heart problems - so in a way - I am lucky I got stuck in a cardiac care unit where the doctor picked up on the strange noises. But still. I have taken a year to get back to 90% and it will be another 6 months to be 100% and I don't want to have heart surgery. I am not sure how MTX and Imuran will work with that kind of surgery - guess I'll find out!
In the meantime, I am hoping that everyone on the site continues to improve and finds the grace they need to move forward. Every week I plan three things I know are going to be fun - lunch with a friend, a special movie, or a meeting that I am really looking forward to. I chair our Downtown Commission, and am working on a large public art project for a small town near where I live. I wrote a $150,000 grant which got funded for the project, so we are in final planning stages. I also listen to the stand up comedy channel in our town and try to laugh hard once a day. I swear Tim Allen is STILL funny!
All blood panels are normal - second month is a row. I have a very happy Rheumy!
Replies
So good to hear all your progress. Hope the marfans thing is not an issue and you can avoid the surgeries... That would be no fun at all... I too am doing well, but nothing like you... I am thrilled for you. Shawna
Great to read your post, you\'re doing well. I was just diagnosed with a connective tissue disorder, uctd. I\'m still learning about it. Also my mom runs the grants program at a WI university so I understand that getting a grant is no small order! Way to go!
Tricia