well it's been almost exactly one year at Boston Childrens
Journal posted on July 6, 2012
Well thanks for reading the post. Its almost been one year to the day of my open heart surgery for pulmonary valve replacement and atrial septic defect. Now one may say why boston childrens because it came recommended to me, there was a surgeon who specialized in the valve I needed and I had a congential birth defect. So there were the reasons why i choice boston childrens. I remember eatting milano cookies and milk right up until midnight the day before the surgery. Its crazy the things you remember. I also post on some facebook sits periodically. The one thing that I really remember well was having an issue with the sleeping. I remember trying to find a position of comfort which in my opinion there really wasnt any. I did receive a call from a woman from england who needs the surgery but hasnt gone through with it. I know its a difficulty decision to make. You think people choose to have open heart Rather then to go into heart failure later or even cardiac arrest. I wish though I did continue the cardiac rehab I know I'm typing out of order now but thinking of stuff coming to mind. I hope everyone else is doing well and nice to be alive to type this post.
7/7/2011 at Boston Childrens Hosp from New York 1 year anniv
Journal posted on June 24, 2012
I havent posted in a while but I've met alot of great people whom have gone through this big surgery and this site has given me alot of information leading up to and after the surgery is over. Alot of people give us updates day to day some people post pictures which is up to you but for the most difficult parts right after the surgery for me were the sleeping issue or I should say being or trying to be comfortable sleeping. Honestly I thought I would be back to work in two weeks. Dont ask me how or why I thought this but I really did think that for whatever crazy reason but I was extremely mistaken. Just make sure you do what they ask dont push yourself to much but I kept trying that breathing chronometer thing they give you to work you lungs. I say use it as much as you possibly can for me it helped and it was like something to do and I always tryed to walk the hallways of the hospital as much as possible. It really helped. Hopefully everyone is doing well and has much continued success after this surgery. Thanks for your time Jon B
Hello everyone not sure why i posting on here since my last post was ocotober 2011. Ive chatted with a bunch of great ourstanding people whom had various types if heart surgeries. i still take baby aspirin the flavored chewables are great. my scar is less noticable but still raised and kelodish however the end resylt is si much better then a chest scar. i was in florida back in march and felt a little strange takung off my shirt other tgen tgat ive been good register fir an american geart walk coning up in may hope all is well w everyone else
Hello Everyone I know I havent posted any messages in a long time. Its been surprisingly good rehabilation. I really havent had much trouble. Thankfully, cardiac rehab it going now after I did some shopping around. When you have a child and wife time consumes your rehabiliation. Finally, I'm out in St Charles Hospital on Long Island NY which is where I live. It's been going well with no problems. I have also started taking some exercise classes. I find yoga to be one of the most beneifical and spiritual therapy classes ever. I also did do some other dance type classes. Hopefully everyone else is progressing like me I hope. I do go back from another checkup at the end of November. I still do take some aspirin once a day. I did also have a mild respiratory infection which they gave my oxmicillin for I doubt I spelled it right. Any males ever shave their chests again after surgery, if so when did u do it after surgery.
Well everyone. It's been quite a journey for me. I'm two months out and where has the time gone. I know without my son coming into our lives this transition period would have been alot worse then anticipated. Someone asked about the scar. Well after 8 weeks I still have a noticable scar. I really dont know when it starts to disappear. I really wasnt concerned with my scar only to be thankful I didnt have heart failure. It would be nice to be a little more physical all I feel like I can do is walk right now but other people seem to be alot more active which I was a little confused about. Everything else has been good my blood work came back good. no problems everything is with in range. I know my weight is a little up since surgery but I hope to get that back undercontrol. Hopefully everyone else is doing well. I dont hace many complaints. I do take aspirin for a few more months until around december. Hopefully starting a cardiac rehab program soon. I'm back to work though which is good and I'm sure will help with the little extra weight. Thanks for your time Jon
Hello everyone! I didnt realize how many people read the posts because I dont read to many of the posts but I do as much as I can. I am able to walk for about an hour with no problems. I did this twice yesterday with my son. Now I really didnt feel any different before surgery and after surgery I feel pretty good. I'm not speaking for everyone I know some people have hurdles and obstacles lucky though I didnt have any. I still follow with the meds as presribed and they them as directed. I do walk to the store now being that my freedom of driving is taken from me. It's hard to get used to not doing your normal routine but I try to do a routine while being home. It was some ordeal with traveling up to boston, then staying in a hotel for a few days and then having the surgery.Thanks goddess I always follow up year after year because if I didnt the results may have been different because like I said I didnt feel any real different from before surgery although after surgery i still feel the soreness and discomfort while sleeping and sometimes laying to low on those pilliows. I still use that breathing thing they gave me in the hospital too. Hope all is well maybe if would be fun to actually meet everyone in person one day.
Hello Everyone. I'm approximately 19 days out of surgery now feeling pretty good. I'm cautious with the whole sleeping thing. I still sleep about 2 to 3 hours at a time but I still get up periodically throughout the night but then again I did that routine before surgery. The only time i feel some discomfort is when I'm laying to low on the pillow or on my feet standing for a long time then I sit down and rest. I still obviously dont lift or drive yet. I know my freedoms have been stripped for the time being. I still sit in the back seat with our son while my wife drives us all over the place which is good. I'm spending alot of time with our son whom just turned 2. I got back again for a second follow up on 8/2. I still take the motrin, and potassium meds for the moment. I know someone said about a cow valve versus a mechanical for me I didnt want to be on blood thinners. I know I'm only 32 but for me that was a huge difference versus having to take them versus not. Doing okay considering.
Hello Everyone I'm back in Boston from taking our 1pm ferry ride from new london ct to long Island NY. I'm doing pretty good although the scale is up a bit I'm okay with it. I guess the more I drink of water the better it becomes. I felt a little soreness and discomfort from a nap before in my shoulder area. Everyone wanted to see the good old zipper scar from the incision. Doing okay moving a little bit better. Great to see our son again. Just feel as though I cant do much which is frustrating. Thanks Jon
One week post op about to leave boston childrens hospital
Journal posted on July 14, 2011
Ok folks one week post operation, and thankfully enough I get to leave the boston area from the hotel. Actually I was realeased on wednesday almost a week post op. I feel pretty good. I know my body tells me no and my mind tells me yes. I can only move so fast. I feel like I'm going close to slow motion with walking,. I know I take layzix, motrion and aspirin so I'm not sure if those drugs contribute to me moving slow. The incision sight looks good and they were able to reset my breastbone which had been stretched during my surgery at 10 days old. I still feel some compression soreness moving around and sleeping is not the greatest.
My surgery went very well as expected. I have a prostetic valve which I wont need to be on blood thinners which was a concern I had being 32 years old. I've been in the hospital approximately a week. Adams book definately helps out in getting through this journey. I've been in the hospital for about a week now. Hopefully getting discharged soon. I'm only on some motrin, asprin, layzix almost a week post op which is pretty good considering. I have no Iv's connected no chest tube no foley cather. I've been able to walk the halls quite a few times. I dont really experience any pain per say I only felt a little dry cough with some clear mucus overnight. I say the pain is like a 1 or 2 one week post op. I know it might be a little unusual for everyone else but this my case.
Tomorrow morning surgery Boston Childrens Hospital
Journal posted on July 6, 2011
Well tomorrow morning I'll be in the hospital holding area awaiting my pulmonary valve surgery. The pre op really wasnt bad at all. They were very throughly and extremely took time to answer questions and make you feel like you were a person. Everyone was there ready for you and very little wait time. Actually at one point they were looking for me to start since I was the first one on the list. You'll meet other people whom are having a similar surgery. I was able to come up the day before from new york to boston to speak with my surgeon which i found to be helpful. I read adams book seen on this site. It's very informative and very helpful. As always not everything will you experience as did he but covers everything in much detail. I know I'll get through this surgery because I'm in good hands and truly believe everyones playing their role in your surgery.
Hello everyone I have been referred to a qualified surgeon and hospital. Now from my understanding the surgeon is out of network and the hospital is in network. I wasnt sure the exact reason I know for doctors and medical professionals I'm covered under united and for hospitals I'm covered under Empire. Is there any other ways to get more coverage. I know I'm going through the prequalification for insurance and I called my doctors about obtaining a letter of medical necessity to submit to the insurance company to be considered in network to be allowed for more coverage.
Pulmonary Valve Stenosis now regurgitation after 32 years
Journal posted on June 7, 2011
Hello Everyone I never thought I would be getting involved with this site but thought it was an excellent support because I didnt find to much community support as far as heart valves are concerned particularly with open heart surgery. Now at 10 days old I had to be rushed to St Francis Hospital on Long Island NY with pulmonary stenosis and had open heart surgery then. I still have a residual scar under my left breast area from that 32 years later. Now after my once a year checkup I was referred for a cardiac MRI which in 32 years I never did ever. When I left that appointment I wasnt sure what to expect all I was thinking I was late for work. Then I'm like being an avid sports fan most of the time when you have an MRI for a sports injury generally they either refer you to surgery or not. Well in my case, I was being referred to Boston Childrens Hospital for pulmonary valve repair/replacement. I spoke with a few people online and facebook but didnt get a real understanding of whats going on and kinda of researched it myself.