Charlie's Guestbook

Hi Julia and Charlie, Wow that is quite a story. Just like Charlie I keep bragging on how I walk and not get out of breath It is wonderful. I agree this year has gone by fast. Now I am trying to enjoy life. I still do have a little pain from time to time but its ok. I just take a little pill maybe once every two weeks. I found out don\'t lift anything that is to heavy, so I have backed off some. Keep enjoying your lives and traveling.

Hi Julia, Thank you for replying to my journal. We have a change in plans for Toms surgery we are going to NewYork-Presbyterian, Dr. Craig Smith is the surgeon. I would love to speak with you while my husband is in the hospital. It is reassuring to read the many journals post-op., and farther out. Our faith in the Lord will see us through this unsettling time.

Hi Julia, So glad to hear all is going well for Charlie. What a difference a year makes! Say hello to Dr. Roselli for me when you see him. God bless!

Ok Julia thus one is for you... As a fellow caregiver I hope you can help. I am feeling so fried. It\'s like the few things my husband used to do to help with the house and kids are all on me and I take them on with a smile. But on the inside I want to scream.... Hey you can wipe the table or something!! You can boil noodles they don\'t weigh fifteen pounds!!! Losing it and feeling guiltily cause I know recovery is not easy!!

Charlie and Julia- Love love love your inspiring story! Had to smile about the guns comment!! As My husband has asked if I will be sad when his \"guns\" are shrinking. I could care less just want him pain free and happy!!! So love the thought of dancing and working out together again!! Thanks again for sharing your story, it\'s so helpful!

Hey Julia and Charlie Amen to all that. Time does fly by after surgery. I guess it makes up for the time we all have to wait. Glad things are going good for you guys. I am doing good also even though I still have minor pain. I pretty much ignore it then finally take a pill about once a week. Life is good. Linda H and Elsie AVR 9/19/12

Charlie, Hope everything is continuing to progress! I am having bad shoulder and upper back pain that is much worse than any sternum pain I had. I hope that it goes away soon. And, despite eating as many calories as I can, my weight isn\'t really coming back yet, either. I note that you had some similar issues at times. It is good to re-read your journal and see that not everyone claims that they are back to 110% 3 weeks after surgery! This is a heck of a big thing to handle. Can I ask what made your doctors decide not to go with post-op IV antibiotics? My valve cultures were negative as well, but I am stuck at home giving myself an IV every 6 hours...can\'t even imagine how good it will feel later this month when I can finally get a full night\'s sleep, in a bed, maybe even without having to take a pain pill! Again, thanks for being one of the first to re-assure me pre-surgery and I wish you a Happy New Year! -Derrick H

Charlie, Thanks for the message and the words of support. Our situations do sound pretty similar! My cardiologist order my first blood cultures almost as an afterthought, and was absolutely flummoxed when they came back positive. I went into the hospital and had a TEE and colonoscopy, neither of which shed any light on where the infection came from/was located. I originally had a 4 week course of IV daptomycin, the PICC line was removed, and they did more blood cultures. Unfortunately, the cultures again came back positive, and, about a month after ending the first round of meds, I had another PICC line installed and was put on an 8-week course of both daptomycin and gentamicin. The gentamicin seems to have led to some balance problems, but no hearing loss, per the tests I did with my ENT. They actually pulled me off the gentamicin after 4 weeks, but left me on the daptomycin for 7 weeks before I told them I was a) not going to be able to pay out of pocket the $1500/day that daptomycin costs and b) I was tired of getting daily drips. Two different sets of cultures came back negative, I had the PICC removed and went on my way. In reading your blog, I understand that your infection was located in your spine? I didn\'t even realize that was possible. They never did ascertain where mine came from or grew. I have been told since I was 9 years old that a valve replacement was likely coming, sometimes the timetable was sooner, sometimes later. The time may be here, we shall see. In any event, I am simply looking forward to feeling better, as I have not felt particularly healthy in almost a year now, and one can only take so much! I\'m glad to hear that you are doing well, and I wish you the best in your continued recovery. Let\'s keep in touch!