5 Weeks and not as well as I hoped for

[Gary Miller]

After 5 weeks I've been to the ER twice and have just made a mile walk yesterday. The irregular heartbeats have been so disruptive to my recovery and the last trip to the ER they recommended a halter monitor as it went from a-fib to 31 bpm. It’s pretty scary because you can hear the valve stop clicking when the bpm slows down that much. Speaking of the valve it has started to really get loud in the morning when I first get up and sit. It feels like the leaflets are slamming shut. When I stand up it starts to fade away. Like I said the minute i start any kind of real exercise, it’s in and out a-fib for at least an hour. The last trip to the ER was because I tried to hold on to my self-propelled lawn mower for 10 minutes, and two hours latter it was a-fib for an hour and when we got to the ER I converted on the walk to the desk (maybe this is Psychological). Sleep has almost been none existent, about 2 hours a night, with 2 hour nap in the afternoon being the daily max. Then there is this new annoyance that just started. All of a sudden I'll just take in a breath. This is happening about once an hour now, I just all of a sudden breathe in. Both the ER EKGS indicate a possible enlarged Left Atrium (pr 168ms) but the all the echos before the surgery indicated a normal sized Left Atrium. The chest x-ray showed a large heart, but as many times as they shocked it and cut it and de brie the annulus for an extra 1/2 hour doesn't it swell up some too. Not to be completely negative I did get rid of my swelling and the anemia is gone (9.8 hg) now, and the legs aren't so tired after the walks, and my INR has been at 2.4 for two weeks. I will say that I'm a lot more disappointed in the Cardiologist and the surgeon after my release from the hospital it really feels like I'm pretty much on my own. "If you feel something going on, go to the ER" that’s their answer to just about everything. I hate posting a negative thread but I really thought I would be much better at 5 weeks and the heart would have calmed down somewhat. At this point it’s hard to believe that I’ll get back to feeling as good as I did before the surgery , thank god for my wife without her support I would be living on xanax just to stop from being so angry at all this. Next week I’m going to start rehab at 6 weeks it should help some I think. Thanks for listening it really helps to vent.

 

[karla]

Vent all yyou want, Gary. I'm sorry you are having all these problems. Hopefully, these problems will soon be a thing of the past and you will be able to get on with things....
I can relate to several things you talked about....especially the lack of sleep. For me, it started at around 4 weeks. I tried Benadryl, then Benadryl plus Tylenol, then Benadryl plus hydrocodone, and it didn't work one iota. What finally helped was a little painful but it eventually worked. Around week 6, 2 weeks before I was to start back to work, I went to bed at my normal worktime bedtime and got up my normal work wake up time without fail. I stopped naps during the day. I kept busy every waking moment. And I took 50 mg of Benadryl every night because I reasoned even if it didn't put me to sleep, it was likely to help me settle down a bit. There was a week or so that was really tough but it did work. I now sleep normally, am tired at night - not the lack of sleep tiredness but a more normal end of the day tiredness - and do not need Benadryl or anything else to conk out.
I also noticed the random all of a sudden taking in a deep breath for a month or so but that is essentially gone now ( my surgery was 3/7).
I hope the rehab helps.
Keep us posted.....

 

[Boston Tiger]

I had nearly forgotten about those strange random deep breaths. Mine happened in three parts, and always earned a look of concern from my daughter. The eventually went away. I've tried to recreate them just to bug my daughter, but can't replicate them.

One of the strangest things about OHS is that everybody heals from being hit by that truck in different ways. Your body has a lot to get over, and it take some more time than others. I remember being bummed that my cardiologist was still adjusting my beta blocker at the six month appointment, but he told me that my heart was still in recovery mode. The one year appointment went much better, and I hope I can step down the Toprol when my two year rolls around.

You've come to the right place to vent, since we all know what you are going through. Keep getting better!

 

[Bina]

Gary, hang in there. At 5 weeks post op I was still in my pyjamas all day, taking cat naps, suffering with weird heartbeats and rates,
bashing valve in my chest, a couple of ER trips, fed up with the stupid fast breath intake,
and was thinking of jumping off the nearest bridge. Fortunately I also had a spouse to care for me and had a home nurse visit for
several weeks. They assured me that there was improvement, even if it didn't seem that way.
My cardio doc also said that "I would be fine" and signed me off to my GP. It was a scary time, but it does get better.
Try not to push yourself, take it slow. Are you taking a Beta Blocker for your heart rate ?
You deserve some more rest, and stay away from the lawn mower Hire a teenager.

 

[Bill B]

Your recovery is being compromised by cardiac rhythm problems including afib and episodes of bradycardia. What's being done to get you to normal sinus rhythm and prevent the bradycardia?

 

[Gary Miller]

So far the Rhythm Specialist has stopped the Digoxin, and cut the Metpropol to 25mg 1x day and the Ameodrine to 200mg 1x day. All of the EKGS he looked at I was in sinus rhythm so he didn’t get a very clear picture of what’s going on. The only way I could tell the heart rate was abnormal was my own Choicemmed pulse rate and oxygen finger meter, and of course I can hear the valve clicking or not. Its been two 5 sec rounds of bradycardia only in the morning so far. I was taking the 12.5 mg of Metpropol 2x a day but maybe I should go back to just the 25 mg in the morning and none at night. Being its Memorial Day weekend I won't hear from the Docs till Tuesday So I don't know what to do. If a Halter shows a lot of problems that could maybe mean a Pace Maker and that I don't want for sure. Today was a good day, 1 30 sec bout of 131bpm and it went back to normal. I guess the morning will tell me a lot more if the bradycardia shows up again. Thanks for responding all.

 

[neil]

hang in there mate,

 

[DanielB]

Gary, as others have said, everyone has a different route to recovery and the issues they face. Sleep was very hard for me for the first four weeks -- I learned all about late night talk shows ( I had no idea there were so many!). I have a mechanical valve and I hear it clicking away in the mornings ( I can hear it now), don't know why, but the mornings seem to be the time I hear it most. It was more pronounced early on. My wife has commented that lately she hardly ever hears it (I am eight months post surgery). Odd heart rates do occur after surgery for some. It sounds like your doctors are working on making you better, so hang in there.

 

[Gary Miller]

Had a tough Memorial Day, I woke up at 2:30 AM and had a 38 HR, I walked around the back yard for 2 Hr trying to keep the HR up to 45. Than the 38-78, 45-98, 41-122, and 52-144 till 2:00 PM. I laid down for 20 minutes and 60-66 till this morning (with 5 hrs sleep). It has dropped to 47 and is skipping a beat most of the time, but is mostly at 58-65. The good news I think, is that I called the Cardio on call Monday morning and she asked what meds I was on and I said amerodine, and metoprolol. I told her I was down to 12.5 a day on the metoprolol and she said to stop it until I got a hold of my EP today. I'm really happy that someone in the profession has put the metoprolol on hold but after reading the side effects from stopping it is pretty scary. But someone with a low resting pulse before OHS (57-65 bpm) it was kind of a bad med to put me on to start with I think. Isn't cozar better for enlarged, mending hearts that are remodeling? Anyway I am going to EP today and try to get a Halter or other meds for this as I am not confident this will be the last of the metprolol side effects yet. I have read that some people take a long time to shake the side effects and others are fine just stopping it. I weaned off of it fairly quick 50 to 25 to 12.5 x2 to 12.5 to stopping it yesterday. About 3 1/2 weeks. Probably too quick, but if I can make it I think a lopressor is the last thing I need now. I'm stuck with the amerodrine so maybe a slight bump up in that if the a-fib gets worse is the lesser of the two evils. We'll see what he says today.

 

[Bill B]

Your rhythm situation is too complicated for anyone other than your cardiologist and EP to be of real help. Although I don't think discontinuing the metoprolol from a low dose of 12.5mg is going to be a problem, this is something your doctors should address. I would trust that cardiologist considered this before telling you to stop the drug.

 

[Gary Miller]

Thanks Bill, as always your opinions are well respected and greatly appreciated.

 

[kfay]

Gary, I have very similar rhythm issues and can understand the frustration that comes with them. I hope your EP is able to come up with a plan to help you sort things out.

Kim

 

[Gary Miller]

Finally an EKG that tells the tale of my heart rhythm problems. Went to my EP appointment this morning and the routine EKG showed everything bad that’s going on! PVC's, PAV's, skipped beats, upper and lower chambers out of synchronization. All of the previous EKGs from the ER to regular office visits were in sinus rhythm, so they had to take my word and my cheap little HR, O2 monitor that I was having rhythm problems. I was fully prepared to discuss a pacemaker implant, but he ordered a 30 day event monitor and said in 6 weeks we can look at an ablation operation if these rhythm problems don't get better. He agreed to not taking anymore metropolol (as the ER Cardio on call ordered), and cut my ameiodrine down to 100mg a day. I have to admit that since I have stopped the metropolol the bad times have been getting a little better after the 5th day . Not great but better. If this is all side effects from the weaning process of that stuff, it is one dangerous drug in my opinion. From reading this form I have learned that there are many other less dangerous drugs than metropolol for beta blocking or ameioderine for a-fib. Maybe I have a wimpy chemistry make up but it took a really screwed up EKG to get anyone to take me seriously about my rhythm issues. I'm still very concerned about the 3 bouts of bradycardia but the EP says that because upper and lower chambers are dividing the heart beats so much that they are not showing up on the HR monitor. I never passed out at 36bpm but did feel dizzy and very panicky. If my problems are withdrawal symptoms from these drugs I hope it doesn’t go on for much longer.

 

[escargome]

Gary,
I certainly hope that things smooth our for you. You have been down a truly rocky road. I guess Metroprolol does affect everyone differently. I have been taking 25mg once a day for the last 4 years without any side effects or problems. I will you only the very best and good job on keeping after the doctors to make them see what you have been feeling. We are not all identical even though life sometimes tries to stick the square peg into that silly round hole. Good Luck

 

[Sarah_Louise]

I'm pleased they've been able to see whats happening on an ECG!
I hope everything starts to get easier for you now you are off the beta blocker, and have everything crossed you don't need an ablation,
thinking of you,
love Sarah xx

 

[Ovie]

I'm sorry to hear things aren't going great Gary, but as said, 5 weeks is still early considering what your body has been put through, I wish you the best.