Jumpng heart and difficulty breathing

[KWRice]

My boyfriend had an Aortic Valve Replacement as well as a root replacement on 5-8-09. Some days he is fine and other days his heart rate jumps all over the place and he has difficulty breathing. He has a pace maker and it shocks his heart about once a week. He is only 26 years old so we had hoped that he would recover a little better and sooner than what we have seen this far. We do not want to run to the ER every day that he does not feel quite normal, most days he will just rest to ease the discomfort. Any input on this? I am so worried about his heart.

 

[Nancy]

Well, you've got to do what you gotta do to keep him safe. And if that means that he has to go to the ER, then that is what has to be done. How often does he see his cardiologist? Hopefully the card. can shed some light on what rhythm problems he has. There are many medications that can help keep things in line. I don't think being shocked once a week is good if it is a defibrillator shock. Some people with a regular pacemaker use it all the time. He might need top be seen by an electrophysiologist cardiologist.

When you say he is being shocked--do you mean that he has a combination defibrillator and pacemaker which shocks him? Or do you mean the pacemaker is giving a little nudge to his heart? With the defibrillator, he would get a big jolt and he would feel it.

 

[Lynlw]

My thoughts and questions, are pretty much along the line of Nancy. My Son (who is now 21) had a pacer and never really felt it that much, if your boyfriend also has a defib and it is fireing that often I would be concerned. Has he told his doctors what is going on? Following my son's surgeries, when he had problems, we called his cardiologist or surgeical team and usually avoided the ER unless there was a big problem in the middle of the night, then the docs would have us go to the ER and would meet us there.
I would definatly be getting in touch with the cardiologist if he is having so many problems 4 months past surgery. Has he had any echos or other tests recently. ARe the breathing issues ongoing since surgery or are they more recent? having trouble breathing COULD be a sign of fluid around the heart or lungs.
Also since he is 26, was he dxd as a child with his heart issues or is this new and his first surgery?
Good luck please keep us post

ps is he walking and doing his other excercises that help with recovering from OHS? This far out, if he hasn't considerred it, he might want to ask about cardiac rehab, so they can keep and eye on him while he is exercising and maybe figure out what the problem is.

 

[KWRice]

He has a pacemaker and it is giving his heart a little jump about once a week. We had hoped he would not need a pacer at all being so young however after surgery his heart just would not do it on its own. He is seeing his Dr about once a month and we keep a log of his problems however we don't seem to get a lot of straight answers. He will be seeing a new Dr on 9/9/09 and I hope we will get new information from him. We walk 3 or 4 days a week almost a mile, somedays he feels like he can walk another mile and some days we don't make it quite that far. He did not have issues with his heart in the past that we know of. He just got sick one day and the condition got worse and worse until we rushed him to the ER. He was diagnosed with a staff infection and it had gotten into his heart, this is when they fould the torn Aortic valve. When the surgery was performed he had been on antibiotics for 3 weeks and there was so much infection in his heart that they actually used a donor heart to replace his valve and root. We thought that would play in his favor but his recovery has been very slow thus far and I can't help but be concerned about him every day. He also now has problems with diabetes, this has never been an issue until his surgery. He takes a pill daily but just like his heart rate that number stays all over the place as well. I know there is no black and white answer for all this I guess what we are looking for is any suggestions? Other than writing everything down and giving it to the Dr what else should we be doing? We are so young and I just want him to live a long healthy life.
Thank you so much!

 

[Kristian]

KWRice: sorry to hear about your boyfriend's troubles. I'm 35 and am exactly 5 weeks out from two valve replacement surgery today. I've been to ER twice since due to fluttering heart and had to be shocked (cardioversion) once in the hospital. Even today my heart is skipping beats and I'm a bit short of breath. My docs advised me that it would take 6 months to a year for things to calm down in there, and I hope that your boyfriend gets well soon

 

[KWRice]

It is comforting to read so many replies and no that we are not alone out here. We just hoped things would go a little smoother with him being so young. He has not yet been released to return to work and it seems he has more health issues now than before. The Dr did tell us it could take up to a year but even they were a little dissapointed that he needed the pacer, they had hoped just as we did his heart would do it on its own. Sometimes I just think maybe we are doing something wrong and that could be slowing his recovery. I really appreciate all the responses. I think I have found more answeres on this web site than I have anywhere else, it really means a lot to us both.

 

[Lynlw]

Are you both posting right now? i'm a little confused. IF it is any consolation my son got his pacer when he was 10 following a cath his heart went into complete Heartblock (the top and bottom didn't communicate well) he had ER surgery the next day to replace part of his pulm artery and got the pacer because he was still in heart block. He was 100% dependent on his pacer for about 6 months (but never really felt it doing anything) and then his heart started beating right and he didn't use his pacer at all until his next heart cath at which time he'd go back into heart block nand use his pacer for a couple months. When he had it about 6 years he wasn't needing it but it was malfuncting so they took it out and he hasn't needed or had another pacer these past 5 year. (during which time he had 2 more caths and 3 more heart surgeries with no problems)
Since he had the infection in his heart and probably was pretty sick for a few weeks before surgery, (I'm guessing he had bacterial endocarditis. my son had that too when he was 11, but they caught it before his heart was damaged) it probably will take a little longer to recover than the "usual" valve replacement surgery. I'm not sure what instructions he was given when he was discharged, but after all of Justin's surgeries we were told to walk every day, in the beginning he would do real short (around the block) walks a couple times a day and work up to when he felt pretty much back to normal. He never had it, but alot of people feel they benfit alot from cardiac rehab, you might want to ask his cardiologist about that.
Recovery is pretty slow, it tends to take 6 months to a year before alot people feel really good.

 

[ALCapshaw2]

If you / he are not getting good answers from his Cardiologist, ask for a referal to an ElectroPhysiologist. That is a Cardiologist who specializes in the Electrical Functions of the Heart.

I'm surprised his Cardio did not put him on some sort of a Monitoring Device such as a 24 or 48 hour Holter Monitor or 30 day Event Monitor.

As others have indicated, it is not unusual for hearts to take up to a year (sometimes even longer in ah...more elderly... patients or patients with more complex heart issues such as your boyfriend).

'AL Capshaw'

 

[jax]

i also had a pacemaker put in when i had my mitral valve replaced on 05/29. can he feel it when his pacemaker is working? because with mine i wouldn't have any idea on whether mine was needed or not. except for when they did their check on it in july and told me i was no longer in heart block and they were able to turn the lead doing into left ventricle i think is down so i am not using it except for when it is needed. In fact i've noticed my pacemaker ever since they put it in except right after they turned it down for a little while i would get a fluttering sensation and then that too went away.