Linda H and Elsie AVR 9/19/12 posted a note for Charlie that says:
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.
Shelly Poluka posted a note for Charlie that says:
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.
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
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!
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!
Hey Charlie and Julia, Glad to hear you all got good reports. Its pretty nice to be getting those those good reports for a change isnt it. I see my cardio doctor this Thurs and have a few questions for him. The visiting nurse keeps saying Im doing great. So keep up the good work we will make it.
Mooing all over
Linda H and Elsie AVR 9/19/12
Hi Julia and Charlie - so glad to hear that you are both doing okay in spite of Charlie's sneezing escapades and the post nasal drip and cough. This too shall pass.... It is hard to believe that it is time for your check up at the clinic already. You will have to let us know how that goes. Try to enjoy the road trip and the wedding as well. Hopefully, some of the trees will be showing their fall colors for you to enjoy along the way!
Ric and I would love to try to hook up with you, but realize you are probably on a pretty tight schedule between the clinic appointment and a wedding to go to. Let us know if it is even feasible for us to try to meet somewhere between Dayton and Cleveland.
Well, it sounds like you are coming along slowly but surely. So that's good. Don't cough, sneeze, fart, laugh, play golf or even think about it, burp, hiccup, trip, have sex (forget I mentioned this one), get drunk, have a nightmare, get vertigo or let Sophie jostle you. Follow these instructions and you should be fine. Seriously, take care and have a nice trip to the clinic and wedding. Oops, I think I just cut one. Rocky
Hate to hear about the sneaker sneeze,not much you can do about those but, hold on!! Julia it's been so good to see you and Sophie girl out for a walk. Not too much longer and you 3 will be ready for your portrait. I can't wait to capture such beauty truly from the inside out.
God bless, Terrah and Ernie
Hi Charlie and Julia, Good to hear that Charlie has escaped. There a a few things that helped reduce my pain while coughing through the first six to seven weeks post op:
1) If it hurts the go back on the pain meds for the first month or so, yes the heavy duty ones as your body will heal faster. You can deep breath and cough easier with appropriate pain management -
your body will thank you
2) Hug your teddy (pillow made by wrapping a towel tightly, binding with some tape and stuff it in a pillow cover) on your chest when you cough.
3) Press with your thumb and index finger between the top two ribs each side at the top of your sternum (the same place the Drs press when they ask you to cough). it helps stabilise your sternum and really worked for me.
No guarantees, but all three helped me have next to no pain through my recovery from a sterniotomy and MVR, my consultant is really happy with my progress and I am not addicted to my pain meds just down to 500mg of parecetemol (Tylenol in US?) last thing at night to help sleep, and first thing in am but will be off that in the next few days - still on it after a two and a half hour each way drive thurs and Fri this week!
Welcome Home Charlie & Julia!
There certainly IS no place like home!
I think every OHS patient will agree, it was one of the most memorable days of the journey. When I walked into our home after surgery, I was so emotional. I felt so blessed...& I knew God would be with me for the rest of my journey too!
God Bless you both as you continue your journey. May your road be smooth...& may you enjoy every day the Lord has given. :)
So happy to hear you made it safely back to NC. There really is no place like home! I am sure your Sophia was very happy to see you as well - I bet her whole body was wagging when she saw you - LOL!
I know how Charlie feels about the pain meds - I felt the same way, I too felt better right after surgery, but as you said it is because of the anesthesia and the pain pump. Once the pain pump went away is when I started feeling more pain. Everyone is different and handles pain differently. This to shall pass.......
It sounds like you have him on a good walking plan - he is blessed that you are able to be there with him and motivate him to stay on track.
When I first got home I was ALOT more comfortable. No waking up in the middle of the night for tests or blood taking. Bed was way more comfortable. I could walk around the house instead of the hospital.
Hi Charlie, Welcome back home. Now the real works starts, but remember one day at a time. Now you have some orders. You must listen and do what nurse Julia and her partner the doctor tell you to do. She is very good at what she does and she will get you back stronger in no time. So heres to a speedy recovery.
Mooving on up
So happy to hear you are all settled in at the hotel.
Charlie, hang in there - each day gets a little better - but I know how frustrating it can be. I too am a type "A" personality and it is so hard not having the energy to do the things you want to do. It will come, give your body time to heal and let Julia take care of you in the meantime. You are so blessed to have such a wonderful devoted wife! I too am blessed to have Ric - he waited on me hand and foot for the first 4 weeks. Hehad the patience of Job when frustration got the best of me. You will get through this!
Julia, remember to take care of yourself and get your rest when you can. Nap when Charlie naps. This whole ordeal is just as stressful for the caretaker as it is for the patient.
We will be praying for a safe uneventful flight home tomorrow for you.
Take care and God's blessings on both of you! Denise and Ric :-)
We have looked forward to your daily updates as we have been praying along with you. We're happy that Charlie has done so well. God is good. We will continue to pray as he slowly and steadily gets better. Next time you visit "up north" we hope you will let us know so we can get together once again. Give him a hug from us.
With love, Sandy and Frank
Hey Charlie and Julia. Glad to see you are out of hospital. So heres to a speedy recovery. Now the work really begins ( I hope I hear me) Have a safe trip back home to NC and dont let those TSA agents harass you. Get their name and turn them in if they do.Have a safe trip.
Mooving on up
That is absolutely miraculous that Charlie had surgery that was so major, and he has already been released! Just amazing. The whole Zeetlegoo's crew is thinking of you two and sending positive thoughts. Rae
We rejoice w you in the progress Charlie is making. Things here are fine. Grass is mowed and Hank and Laney took debris to the dump.
We miss you and remember you daily in our prayers. Come home safely and soon.
Lois and Laney
Hey Charlie, Glad everything is going pretty good for you except the little MRI mishap. Thats not good. Oh well the best thing is that your heart is better. I just found out I go for CT on Fri then next week we will be looking for a date for the big show. Cant wait to meet ya'll on the other side mooing.
Mooving on up
Oh my! Such good news and one temp setback. Odds are certainly in your favor. Keep smiling and whistling. It's the very best for you besides all our prayers. We look forward to seeing you next week. Take care and know we miss you.
Laney had a great time w his son, son-in-law, and grandson on their 2 wk cruise and tour of Great Britain. He was glad to get back to Lockwood but not half as glad as you will be. Your own bed is just waiting for you.
Laney will be mowing tomorrow!!
Lois and Laney
Hi Charlie and Julia,
So glad things are going well-great news. I bet Sophie is missing you two as well. It will nice to be back home with some sort of normalcy to your lives. You've had quite the time of it but we couldn't be happier that all went well. Will be in touch. Much love...
The Maniac Macfarlans!
Dear Mom and Dad --
I hear you're breaking out of the hospital pretty soon. I know a few four legged friends up there that can help if you need it. Sounds like you might be coming home soon -- camp is still going great. Peyton ran off a few bunnies who were grazing on the flowers. Precious provided oversight!!
Keep getting better -- Julia and friends you're doing a great job!!!
Lots of love -- your girl Sophie
Hey Julia and Charlie, Glad everything is turning out good. If you are flyig out of CLE it could be a long walk to the gate. Aske for a wheelchair. They will take you right to the gate. Hope you have a safe trip back home. Good luck in the recovery process.
Hey Charlie. Keep on hanging in there. We will be voting for you for President of the United States when November arrives! Our love and best wishes to you and Julia. She's the Best! Looking forward to seeing ya'll soon. Take good care . Remember our. Dulce God is a wonderful healer
GREAT NEWS! Feel like I'm there with ya'll. Yes, the Lord is great. We are all so blessed that everything has gone so well. We are off to San Diego but will see you late next week. Travel safely and God be you~
Folly says hello. And don't worry about the riding mower. Hank has cleared a path from here to Varnumtown. He left a note indicating he'll be back next year. Loraine says , "Great! I get the TV clicker."
J. you must really love C! C, I'm thinking diamonds! Take care, R.
So happy to hear that all is going well with Charlie's recovery - tell him to remember to take one day at a time - some will be better than others, but there is a light at the end of the tunnel:-) It sounds like you (Julia) need a sound proof room so you can get some much needed rest - bags on top of bags is not good - LOL!
I am going to start cardiac rehab next Monday so will try to do 10 - 15 minutes of moderate walking on my treadmill starting tomorrow to prepare for it. I am ready to get this show on the road!
Sounds like a good day. Hard to beat a close and loving family.
Yesterday was a little unusual here. Laney and Lois were outside working in the yard, Laney in a speedo and Lois in a pink thong bikini. Hank knocked Laney off the riding mower and was racing down towards his lot screaming, "It's my mower and I'll damn well use it any way I want!" Lois was running after him hollering, "Get off that mower AH and go the hell home and take your meds". Then she mentioned having gone to Duke.
I'm happy to report that most of the mower was returned later that evening. Hank went to bed and doesn't remember much of anything.
Charlie, keep plugging away and we'll see you soon. J. Good updates.
Hey Charlie and Julia. We just got your info from Ann Mary and we are sooo happy to hear all is going well. Your journal is a wonderful way to let your friends know how ya'll are doing. We keep you both in our prayers and we are always reminded just how much God cares for you. We will stay in touch this way, but won't have a computer next weekend. Our l love and blessings to you both. Dulce and Rocky
Thinking of you and wishing you the best. Normally I'd include some dry humor BUT don't want the 10" zipper coming undone. Have you seen the Rock & Roll Hall of Fame? When you are up for it, maybe? Keep plugging away and we'll see you soon. J. great job with the updates. Take Care, Rocky~
Just a quick update from camp -- you picked such a great place for me to vacation while you are getting better. I have been checking in with me friends Precious and Peyton in Lockwood. They have reported that all is great at the house -- the pink flowers on the porch still look great. Keep getting better -- I miss you.
Love your girl -- Sophia
So glad your operation went so well. take it slow and easy on the recovery back to normal.
I had a neighbor who had a pig valve replacement and she lived for many, many years with no problems. That was way back when pig valves were experimental.
Keep plugging alon, our thoughts and prayers are still with you.