Natalie's Posts

This wilI probably be my last post for awhile. I had my follow-up appoitments in Cleveland on Monday with the Rhuematologist and the surgeon. I am happy to report that my Echo and MRI both looked great! Both doctors where happy. I am now on 10 mg of steriods and will go down 1 mg a week for the next 10 weeks. I will remain on my infusions and cellcept to make sure that the Takaysus stays in control. I am still working on completing cardiac rehab. I have 36 sessions total and I haven't been able to go all three times a week for awhile because we have been busy so it is taking a little longer than usual. I think I have completed over half I am working out at home when I can't go. The cardiologist offically lifted all restrictions a few weeks ago (with the excpetion of heavy weight lifting..which I don't want to do anyway) and I have started jogging again. I'm almost back to normal with the exception of some pain in my sternum, which I'm told could take up to six months to go away completely.

It's offically been 13 weeks since surgery. When I had my surgery Dr. Rosselli said it would probably take 12 weeks to get totally back to normal and I remember thinking it is going to be a long 12 weeks. I am happy to report the time has gone by quickly; however, I wouldn't say that I am 100% back to normal. I still have some pain in my sternum on the days that I do a lot... like work out, carry groceries, carry kids around etc. I am doing well at cardiac rehab and improving every week. I tried to run a little last week but my heart rate got a little higher than they would like so I had to stop. It's a little bit hard to be told at 29 you can't run because you aren't physically up to it but I know that I will be back in action soon. I have reduced the steriods to 17.5 mg..which makes life so much easier and am happy to report that my blood work has all returned to normal. This is a sign that the Remicade and Cellcept are doing their job and the Takyasus is hopefully under control. I go back to Cleveland at the end of January for an Echo, MRI, lab work, and appointments with my surgeon and rhuematologist.

I will be at eight weeks on Monday. I started cardiac rehab on Wednesday. My first day was kind of hard.. anything that used my arms made me really sore in my sternum but today's session was much better. I even did weights today. It kind of made me laugh because I am using three pound weights.... eight weeks ago I was carrying around almost 60 pounds of kids and now I'm using three pound weights. I guess you gotta start somewhere. They told me I would have a big bump up on excersizes monday because they start off slow to see how it goes and I have done well with it. The migranes are back. I have had four this week... not fun. Luckily my mom has taught me the wonderful trick of taking Excedrin with a coke which keeps it at a tolerable level. I'm not really sure why these are happening but hopefully they will go away soon. On Monday I get to drop down to 30mg of steriods...who hooo! I will also have my second Remicade infusion this week. At the beginning of the week I was starting to feel like my progress was almost a standstill but starting to work out again has made me feel soo much better. I have also had a couple of days alone with the kids this week and they have gone well. I even took them both to costco today...and put them in the cart. Things are slowly but surely returning to normal.