Good luck. Spine doctors FTW.

EVER since I was in the hospital in December for a lower back flare up, I just haven't felt good. I've been tired, dizzy, lightheaded and just plain lethargic.

I finally made it to my family Dr. and he ended up hospitalizing me. After doing a lot of tests, the doctors came to the conclusion that I had endocarditis again, which in my case was an infected mitral valve in my heart. It had to be treated with antibiotics again. The bad news is it destroyed my heart valve and it had to be replaced.

I had Mitral valve surgery February 28 and I came home from the hospital March 6 after a 2 1/2 week stay. I still have to be on antibiotics for several more weeks at home.

I'm feeling pretty exhausted right now, so I'll continue this later. Just wanted to check in.

I've had a lot of tingling and weakness in my hands and arms in the past few weeks. Holding onto anything, or trying to open anything is very difficult, if not impossible. I'm thinking it's probably just from all the uncomfortable positions they put me in in the hospital but it worries me a little bit.

A couple of days ago I tried to cut my fingernails. I was able to cut the ones on my left hand but when I tried to use my left hand to clip the right, I just didn't have the strength. I couldn't push on the clippers hard enough to cut the nails. That's never happened before.

I'm also wondering what effect opening up my rib cage is going to have long term on my TOS. Right now, my TOS is a lot worse, but I expect that until everything starts to heal. One Dr. said it shouldn't affect my TOS any but I'm a bit skeptical about that. Time will tell.

Since I had the heart valve surgery on the 28th my rib cage is sore where they opened me up, but it seems like most of the soreness is in my upper back muscles. It seems to be getting a little better since I can lay flat now. At first I had to keep my head propped up on pillows or I couldn't breathe good. My lungs were full of fluid but that seems to be getting a lot better. It's pretty scary when you can't breathe good. I guess when your heart's not pumping well fluid backs up into your lungs.

The tingling and weakness in my arms seems to be improving a little bit. It is the worst on the left(nonsurgical side). That arm still as a picc line(an IV) in it that could be irritating it some. I can't wait to get that out but I still have to be on antibiotics for several more weeks. I can't do much stretching or mobility on that arm because I have to be careful of the picc line. My wife gives me antibiotics twice a day through the picc line. She just hooks it up and runs in by itself. Pretty neat. It doesn't even need a pump or anything. Takes about an hour and a half to run in. Then a nurse comes once a week to draw blood and change bandages and dressings.

You've sure got a lot going on right now! You're in my thoughts and I'm crossing my fingers for you, too.

Take care,
Kelly

Ackk, I feel bad that I missed seeing this news until now.
Hope you recover well from all that invasive stuff.

It's been a little over four weeks now since I had the heart valve replacement so I'm able to gradually start using my arms a little bit more. The nurses at the hospital told me to limit my arm use for four weeks because it puts strain on the breastbone that was opened up. Using your arms puts strain on it and may cause it not to grow back together properly. It wasn't really that hard because my arms were painful and weak anyway. That seems to be gradually improving with time.

The difficult part was not using my arms to get out of chairs and bed. I wasn't supposed to use them to help push myself up. Getting out of chairs wasn't too bad but bed was hard. My wife had to help me with that. The last couple of days I've been working at getting out of bed myself, using my arms as little as possible, and it's getting a little easier. It takes some practice.

I still have a picc line(an IV) in my left arm so I have to be kind of careful with that. It comes out on the 6th, hopefully. I can't really do any stretching or mobility exercises with with that arm because it gets irritated from the IV, plus I have to be careful I don't accidentally pull it out. I don't need any more trips to the hospital.

My upper back muscles and arms are still causing me the most pain. The incision and chest area really aren't that bad, unless I cough or sneeze. I think most of the pain is TOS stuff.

Take care

Do you regret having scalenectomy only (no rib resection)? Have you ever revisited the possibility of rib resection?

I wish you the best. My wife has mitral valve prolapse with regurgitation. We recently saw a cardiologist who believes she can live with it without need for valve repair. My fingers stayed crossed at all times these days.