Post Surgery- Recovering at home
Home recovery went well. I figured out how to stack my pillows so I wouldn't have to sleep flat on my back. I eventually (after a few nights) got used to that. I'm a side sleeper, so it was hard! Pain wasn't a real issue, mostly just discomfort and soreness. I was taking 650 mg of Tylenol 4x/day and 5mg of Ocycodone as needed. At First, I took the oxycodone every 4-5 hours, then after a few days, I cut back to just once before bed and once during the day when I wanted to take a nap. Then by about day 7 I was down to once only at bedtime. When I started having trouble sleeping after taking it (day 13) I decided to stop it completely. Kept taking the Tylenol, only cut back to twice a day, once before bed, once in the morning then by about day 15 I decided to just take at night. After two weeks, I was able to stop all pain meds entirely. I could probably have stopped sooner, but I was trying to keep from getting too uncomfortable.
The incisions for the most part never bothered me, other than the chest tube site which had a stitch. That thing was situated directly under the bottom band of my bra, making it very uncomfortable to wear any kind of bra. So when I went out I wore one, but it came off as soon as I got home. That really didn't get better until I had the stitch removed on the 27th (3 weeks post op).
We had neighbors and friends bring us food and I had gotten some restaurant gift cards from friends prior to my surgery, so we were covered on meals for about a week after I got home. My husband made simple meals as needed. I was getting up each morning to help get the kids fed and ready for school and my husband got them to school. That worked fine because I was able to immediately go back to bed after they left. I was ok as long as I moved slowly and didn't try to lift anything heavy.
Day 9 post-op I ventured to the Target to pick up a birthday gift for my daughter to take to a party the next day. Then I went with her to the party at the skating rink on Day 10 post op, and I was still a little slow and uncomfortable, but I was ok. I didn't skate, obviously :-)
My 2nd week at home was better, but it was Saturday, May 21st, when I felt I really turned a corner, I was feeling good, sitting on the floor playing games with my Daughter and just felt normal again finally. This would have been 16 days post-op. The 3rd week at home, I was feeling good, just trying to get back to doing normal things (laundry, driving the kids to school, etc) because I knew i would be return to work the next week.
My MG symptoms were all but gone from the time I woke up from surgery until about 7 days after I got home. I was kinda hoping that maybe they were improved, but then I started noticing trouble swallowing and the telltale numbness in my face. The neurologist and surgeon both confirmed that most people don't see relief for many months to a year or more. So this wasn't really a surprise, but it was nice to have some relief from that for a week.
After a trip to the coast to visit family over Memorial Day weekend (which went well...I think the vitamin D helped!), I started back to work at home on the 31st and today was my first day back in the office.
Today my symptoms are pretty strong. I'm taking a full mestinon at 11am and again at 3pm (even though the doctor suggested just taking the full dose once a day). It helps when I'm feeling particularly weak, and today has been bad for facial weakness and swallowing. Funny because I"m just sitting at my desk all day today. And during my weekend at the beach, my symptoms weren't very noticeable. It's annoying how you can't really tell what to expect from one day to the next. Some days I would expect to be feeling it are not so bad and the ones where I'm taking it easy can be worse.
here's to hoping the surgery will help things get better over time and not worse.
Next visit with the Neurologist on June 24th, Will see then if he things I should start new medications or not. For now, just taking Mestinon, which works ok, but I do have to take more of it more often than I did at first. Thankful that I am not having any noticeable side effects from it at this point.
The incisions for the most part never bothered me, other than the chest tube site which had a stitch. That thing was situated directly under the bottom band of my bra, making it very uncomfortable to wear any kind of bra. So when I went out I wore one, but it came off as soon as I got home. That really didn't get better until I had the stitch removed on the 27th (3 weeks post op).
We had neighbors and friends bring us food and I had gotten some restaurant gift cards from friends prior to my surgery, so we were covered on meals for about a week after I got home. My husband made simple meals as needed. I was getting up each morning to help get the kids fed and ready for school and my husband got them to school. That worked fine because I was able to immediately go back to bed after they left. I was ok as long as I moved slowly and didn't try to lift anything heavy.
Day 9 post-op I ventured to the Target to pick up a birthday gift for my daughter to take to a party the next day. Then I went with her to the party at the skating rink on Day 10 post op, and I was still a little slow and uncomfortable, but I was ok. I didn't skate, obviously :-)
My 2nd week at home was better, but it was Saturday, May 21st, when I felt I really turned a corner, I was feeling good, sitting on the floor playing games with my Daughter and just felt normal again finally. This would have been 16 days post-op. The 3rd week at home, I was feeling good, just trying to get back to doing normal things (laundry, driving the kids to school, etc) because I knew i would be return to work the next week.
My MG symptoms were all but gone from the time I woke up from surgery until about 7 days after I got home. I was kinda hoping that maybe they were improved, but then I started noticing trouble swallowing and the telltale numbness in my face. The neurologist and surgeon both confirmed that most people don't see relief for many months to a year or more. So this wasn't really a surprise, but it was nice to have some relief from that for a week.
After a trip to the coast to visit family over Memorial Day weekend (which went well...I think the vitamin D helped!), I started back to work at home on the 31st and today was my first day back in the office.
Today my symptoms are pretty strong. I'm taking a full mestinon at 11am and again at 3pm (even though the doctor suggested just taking the full dose once a day). It helps when I'm feeling particularly weak, and today has been bad for facial weakness and swallowing. Funny because I"m just sitting at my desk all day today. And during my weekend at the beach, my symptoms weren't very noticeable. It's annoying how you can't really tell what to expect from one day to the next. Some days I would expect to be feeling it are not so bad and the ones where I'm taking it easy can be worse.
here's to hoping the surgery will help things get better over time and not worse.
Next visit with the Neurologist on June 24th, Will see then if he things I should start new medications or not. For now, just taking Mestinon, which works ok, but I do have to take more of it more often than I did at first. Thankful that I am not having any noticeable side effects from it at this point.
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