Natalie Tucker
kansas city, Kansas,
United States
My Diagnosis
Dilated Acsending Aorta
Over 35,000 Patients
& Caregivers HaveRead This Book
To Heart Valve Surgery
My Journal
Cleveland Follow-Ups
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.
13 weeks post op
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.
Progress
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.
Six Weeks
Today is offically six weeks and there are lots of changes happening this week. For starters I can drive now... and ride in the front seat. After six weeks of not driving it will be nice to be able to run errands by myself. The original plan was that at six weeks I wouldn't need help with the kids anymore because I would be cleared for "normal" activities; however, I'm not quite there yet. I have to guess that most people having a surgery like this their normal activities don't include chasing and carrying around two almost thirty pound three year olds. Luckily for me my mom has agreed to come and help for a little while longer. Although I am doing today by myself becaue they will be at school most of the day.This week I also have appointments with my rhuemetologist and Cardiologist. I should be be starting my remicade infusions but i'm having trouble getting an appointment. I should also be starting cardiac rehab but I'm having trouble getting orders for that. Cleveland doesn't want to do it becasue they haven't actually seen me and the cardiologist here doesn't want to write the orders because they didn't do the surgery. Hopefully I will be able to get that cleared up soon.
In other big news as of last Tuesday my hemoglobin is nine.. this is still low but much better. Also, today I get to drop down to 40 mg of steriods today! Yeah
I have been having more pain in my sterum area recently but I'm pretty sure it is just becauses I have been doing more. I did some laundry and picked up the kiddos a little this weekend. It probably also doesn't help that I can't take advil anymore. Tylenol just doesn't really help with the muscle pain the way the advil does.
Thats all for now.
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