Am I Normal (LOL) - Feedback please

[JJGo]

Well, ok, I don't really expect you all to tell me if I'm normal because I'm already quite sure of the answer to that! However I'm trusting that you are the experts to tell me if my current symptoms are normal.

As of today, I'm 3 weeks post-surgery and as many of you know have been sailing along with nary a hitch. Starting Tuesday of this week I started feeling a lot more heavy pounding of my heart for long periods of time. I remember in the hospital having just a couple brief episodes of this post surgery. I know this is relatively normal but I'm surprised after 2 weeks of not happening that it would start now. It has kept me from walking very much the last couple of days and yesterday I slept for 3 hours straight in the afternoon. I'm also feeling light headed but I have naturally low blood pressure so the more I sit or lay around doing nothing the more likely I am to be light headed when I stand up. I guess I'm wondering about balance. Is this pounding heart an indication that I need to rest more or have done something to cause it? Or, should I be pushing a bit, walking despite the pounding.

When I say pounding, I mean it feels like someone is shaking me or tapping me on the back of my head. I can count every heart beat without feeling for a pulse. I thought perhaps this was exaggerated in my own head until a friend was sitting next to me on Tuesday night (actually touching me) and turned to me after one of the heavy pounding episodes went on for a few seconds and said, "My God, was that your heart?". It seems more intense when I'm lying down compared to sitting up.

I saw my local cardiologist on Monday for a post surgery follow-up and he thought everything looked and sounded good. Of course that was before all this started. He doesn't want to see me for 6 months (unless I need to) and they don't want to see me at Mayo until my 1 year appointment. I think I'm feeling a little on my own here. I can get in to my cardiologist anytime but I'm unsure if this is something I should be going in for or should I just wait for it to subside? Let me know what you think. Thanks.

www.caringbridge.com/mn/jymme

 

[Rain]

I'm not an expert!

I'm not an expert!

Just thought I'd share this experience with you though. This is what happened to me and it sounds a lot like what you described.

Just a couple of mornings before I left the hospital after my surgery.. I was sitting in a chair and the same thing you describe happened to me. I was totally freaked! My husband was in the room and he could see my head and body moving to the beat of my heart too. My surgeon guy who came by every morning hadn?t been there yet. When he got there I asked him ?What?s up with this?! Look at me!? He told me that my heart was beating a LOT more efficiently with the new valve. He promised me that over a short period of time it would mellow out.... And it did. I thought I was really messed up that morning before he came in and talked to me though! Scary stuff. He convinced me it was actually a good sign of my recovery.

Cardio Rehab is great. I was afraid to exercise a lot before I joined Cardio Rehab too. Having a nurse there monitoring you as you exercise is very reassuring in those first weeks and months after surgery.

Rain

 

[Mb]

Hmmmm......three weeks post op, and this is a new development. I would call the doctor. He may want to see you. And, if it nothing.....then you will be calmer. I would call.

Marybeth

 

[Jennie]

Hi Jymme,

I had lots of "pounding heartbeats" after my surgery, coming and going for periods of time. It was especially noticable when I would lay down in the La-Z-Boy at night, it would really keep me awake. Being able to take my pulse without contact, and the Parkinson-type head-bobbing with each heartbeat - these were symptoms of mine both before and after surgery. (I still have the pounding even now.) Mayo told me that the pounding heartbeat was normal after surgery, that I would be more aware of my heart, etc. I personally wondered if it had something to do with being a bit anemic after the surgery, that there were less red blood cells to service my body, thus the heart had circulate the blood quicker - but just my theory! The lightheadedness...? I have this due to bp meds, but you...? I would give Zehr's office a call, someone will get back to you on it. The fact that it just recently started happening would be cause for inquiry, I would think.

Glad to hear you've been doing well otherwise!

-Jennie

 

[amy]

My husband had a mechanical aortic valve July 24, 2002. The first three days home, he felt pretty good. He began to get more and more tired, and started to become winded easily. He kept insisting that everything was fine. Within 24 - 36 hours, he went down hill rapidly. He hands and feet became cold to the touch, and his color was off. I insisted that we go to the ER. He just spent the last 5 days in the cardiac critical care unit for complications due to a build up of fluid around the heart. He was just transfered to the cardiac step down unit today. We are hoping that he will be released on Saturday or Sunday. The doctor told us that if we had waited much longer to come in, it could have been fatal. Don't wait to have the symptoms checked out. Better safe than sorry.

 

[Bill Hall]

JJ - I had the pounding heartbeats, but in my case I think my heart was converting from afib to normal rhythm. I also had some dizziness and still do occasionally. Two cardiologists told me it is not heart related (the dizziness). My opinion is to just keep track of details in a notebook, and be on-guard for additional effects. Maybe call the doctor if it is continued or to feel better about it.

 

[Nancy]

Hi JJ-

Any one of your symptoms alone without any of the others might be OK, but even then I would contact the cardiologist.

Let's see, you are complaining of the following, all together:

Pounding Heart
Lightheadedness
Fatigue

You should call right away. I don't believe in mincing around with symptoms after heart surgery, even though it might mean a trip to the doc, or more tests. Things can crop up fast with you guys and gals.

I don't want you to have to say, "If only"

 

[Lorraine]

Hi JJ,

I had a lot of the same symptoms you described. I was so concerned with something being wrong, that I called the doctor immediately. It turned out to be as the others described (perfectly normal) but if I were you I wouldn't take any chances. It's not going to hurt to call, ask questions or even demand an appointment to be looked at and listened to. I had felt my heart was racing and I too could feel the pounding and vibrations. This was all new to me. When I saw the doctor they did do an Echo. Like I said everything was fine but I felt a lot better hearing it from the experts rather than worrying. Better to check to make sure there isn't any potential problem and have peace of mind! As Amy said "Better safe than sorry". Nancy said it all straight too. "Things can croup up on us real fast!" Hope you heed our advice! Take care and God Bless!

 

[greggo32]

Bother the doctor!!!

Bother the doctor!!!

Go to the doctor. You have to live with your heart. Your doctor gets paid to hear you talk about your heart. The doctor gets paid to examine you. I have made very similar posts and I still went to the doctor. You can get emotional support from us; however, we are not cardiologists. We can tell you little anecdotes about our pounding, skipping, thumping, and emergency trips to the E.R. Each case is different and the M.D. needs to rule out any serious medical issues. I still get pounding, skipping, and a host of other pain-in-the-butt symptoms. I am almost 4 months post-op. But, you are still early in recovery and should be followed closely. This 6 month business doesn't jive with me. My doctor told me the same thing. He has a very busy practice and has to triage people. You may be fixed but you still need to be followed!!!

 

[Blanche]

Let me add my voice to the chorus above. With any concerns so soon after surgery, you should contact your cardiologist. You may have to be assertive in order to be seen. Don't take no for an answer. Often the folks who answer phones have very little medical knowledge or training. Yet, they are the gatekeepers. Insist on an immediate appointment, or at the very least speak to the doctor on the phone. I worry about the lightheadedness. You must do all that you can to avoid the risk of falling. Please keep us posted on how you are doing.
Sending you my best wishes and prayers,
Blanche

 

[John Cochran]

JJ,
I recall that you were released from the hospital on no meds whatsoever, baby aspirin aside. I have discovered lately that Mayo has a different approach than many other hospitals regarding when and for how long patients should be on beta blockers, ACE inhibitors etc.

Dr. King put me on beta blockers right after surgery, and this is one of the symptoms he told me could be avoided. However, he believes it is beneficial to stay on these for life, and I'm not sure I buy that.

Anyhow, I am in search myself of a Twin Cities cardiologist who is experienced with homograft AVR patients for follow-up and advice on meds. I've learned that the specialists here, who deal mostly with mechanical valve recipients, have opinions 180 degrees apart on some of these issues. I'll let you know if I find a good one, and I hope you'll do the same if you find a good one! My GP is pretty worthless on this topic...matter of fact, I think my case scares him half to death LOL! Most docs are not comfortable dealing with patients who have "new fangled gizmos" when there are only a handful of us in the world.

In the meantime, I think Amy and Nancy are right in that you really do need to get this checked out ASAP if only for your peace of mind.

Best wishes with a hug attached,
--John

 

[amy]

I am suprised that the cardiologist doesn't want to see you for 6 months. Our cardiologist saw my husband 4 days after he cam home from the hospital and gave us another appointment for one month later. Of course we ended up at the er. The cardiologist will be seeing my husband more frequently once he returns home. If you have any concerns, please don't wait to see the cardiologist. We will never make that mistake again. It almost caused my husband his life.

 

[Granbonny]

How are you feeling?

How are you feeling?

Hi JJ..We haven't heard from you on your new thread about your pounding heart since Tuesday a.m....Did you call your Doctor?...Also, I read in your Journal about his telling you not to do anything that would make your heart pound..Can you think of anything you may have done after seeing him on Monday? I think it is amazing that you have done all the things like movies, ect. in just 3 weeks post surgery. Myself, I was still riding in motor wheelchair at Grocery store, Wal Mart at 3 weeks....was walking outside but crowds scared me..Was afraid I might trip, ect. I think it is the normal thing for people to tell us how GOOD we looked after open-heart surgery. Most people think we should be pale, ect.....I'm a little over 4 months now and still feel a little pain if I over do..like even swimming with arms out..Still get Hubby to vaccum..Hope things have improved for you..but you take it easy. You have many weeks in front of you for recovery. Bonnie

 

[EVELYN]

HI JJ....I REALLY AM SURPRISED AT THE 6 MONTH POST OP BIT. TYCE HAD HIS SURGERY 6/26, WAS SEEN BY OUR CARDIO THE TUESDAY AFTER SURGERY, 2 WEEKS LATER, 1 MONTH LATER, AND NOW WE'VE JUST GOTTEN AN APPT. FOR 6 WEEKS LATER. I KNOW WE DON'T HAVE TO SEE THE THORACIC SURGEON AGAIN, BUT 6 MONTHS FOR THE CARDIO DOESN'T SEEM RIGHT TO ME.

AS FAR AS THE POUNDING IS CONCERNED, WELL, TYCE STILL HAS IT, ESPECIALLY AT NIGHT AND YOU CAN ACTUALLY SEE THE PILLOW ON HIS CHEST BEAT ALONG WITH HIS HEART. HE IS IN NSR AND HAS NO OTHER PROBLEMS, BUT WHEN MENTIONED TO OUR CARDIO, HE SAID IT WAS NORMAL AND THAT THE HEART WAS PUMPING BETTER THAN IT HAD IN YEARS AND THAT IT WILL MELLOW OUT WITH TIME.

I WOLD GO SEE IF YOU HAVE ANY FEARS....AFTER ALL, THAT'S WHAT THEY GET PAID TO DO, ISN'T IT????

EVELYN

 

[JJGo]

Checking In

Checking In

Well, I so appreciate all your input and I knew it would run the gammet of all possibilities. It is just good for me to hear all of this.

As of yesterday I have a new theory as to why these things happened the way they did for me in the last couple of days. They have by the way calmed down considerably and I'm feeling fine. At the risk of sharing too much info here goes:

Yesterday I started my period after not having it for 3 months (stress related I think) so suddenly (light bulb goes off here) I realized that was certainly contributing to the fatigue and my guess is that the fluid retention was what suddenly made my heart start pounding more. It's also not unusual for me to have even lower than normal b.p. during my period and experience light-headedness. Yesterday I already felt much better with more energy, though I still rested a lot, and today feel even more "normal".

I did take seriously all the "call a doctor" advice and I'm going to call both Zehr's office and my local cardiologist's nurse today and just discuss timelines for appointments etc. My symptoms probably sounded scarier in writing than they really felt to me. From everything I'd read I was pretty sure it was normal but if anything had escalated I would have gone in right away. I am pretty in tune with my body and although everybody can make a mistake in that area I feel that I tend toward the conservative side in getting things checked out just to make sure. After 10 years dealing with cancer, I'm pretty used to that.

I think one of the reasons that they are not doing sooner follow-ups is that I'm not on any drugs at all (except aspirin - which Zehr said he thought I didn't even need after 6 months) so there is no need to track and regulate all of that. Also because my dismissal echo showed no leakage and everything back to normal. My cardiologist was very clear that I could come in anytime I felt something needed to be checked out though. I do like him a lot by the way John. Of course he doesn't have the Synergraft experience (who does) but I like his approach and he shares a lot of good info with me. I've been seeing him for more than 10 years. If you are interested his name is Max Boller at Park Nicollet Heart Center (Methodist).

On a light note, last night I went to see a Flemenco Dance Comedy, (part of the Fringe Festival) and I couldn't feel my pounding heart at all with all the pounding going on on the stage! Maybe we all need to take up flemenco to put our pounding hearts to good use. Would that be a post- 6 weeks activity? LOL I think I'll be stuck doing the slow motion version for several weeks. Those dancers looked like they were working hard! It was a lot of fun though.

Bonnie, I know what you mean by crowds. When I'm in places with lots of people I walk with one or both forearms across my sternum ready to push anyone away from me who gets to close. I wasn't even conscious of doing it at first. It probably looks weird but works for me. And I have pushed a couple people away too!

Thank you all for your input. I'll let you know if I get any new info. I'd also be interested if any of the other women have noticed different symptoms with their periods or pms.

www.caringbridge.com/mn/jymme