Post Surg Regurgitation

[djacq]

Hello Everyone,

Sorry to have to ask for your help again, especialy when I thought all was going well.

I am feeling disappointed, scared and confused.

I had to stop physical therapy two weeks ago as my broken ankle was starting to be painful. Shortlyafter, Post Sur I began having shortness of breath that has become increasing worse. I can barely get up a flight of stairs or carry on a conversation without getting breathless.

My AVR (St Jude?s) was 12/4/02. My PCP did a chest x ray which was ok. My valve sounded good to him. My lungs clear. He consulted with my cardio and did an echo (which I needed 3 months post op anyway) Monday.

My pcp called me right away to say I had a ?backflow? in my aortic valve and should have my cardio do a TEE.

The cardio?s office showed the results to my covering cardio (mine in Fla for vacation) and he questioned WHY there was a concern about this and to tell me not to worry.

I think I became hysterical or at least quite verbal about why my PCP reported back up which to me sounded like something TO worry about.

Well they had the nurse practioner call me and she attemped to reassure me that my heart lacking good blod flow a long time BEFORE surgery and was not used to all the new blood flow and this was a common post op problem and not to worry that this was not bad news. My heart was just recompensating. Also reported to me a mitral valve regurg (never heard this even thru cardiac cath, past echo and TEE during surgery) and some regurg from the AV but ejection fraction was 75%. She also told me the valve was ?well-seated? per the report.

Yeserday the office called my cardio in Fla and he ordered a TEE Tuesday with a message for me not to worry.

I don?t know what happened. I was feeling so good, why is my heart having a problem adjusting at this late date? Is it because I stopped physical therapy? Would that make such a difference?

I called my pcp today to tell him breathing is getting more difficult. At this point I am not sure how much anxiety is playing a part now tho shortness of breath on exertion cannot be anxiety???

This is all kinda shocking news when I felt I was having a good recovery and I am hoping someone may be able to clarify or let me know what I need to ask, do etc? Or evenwhat could be happening?

Thanks so much for ?listening?,

Donna

 

[hensylee]

Dear Donna - in your shoes, it would scare me, too. Maybe it isn't anything to worry about, but your body speaks for you, doesn't it. I am so sorry to hear this news. Please try to just rest and relax (hard, I know, but necessary if you can achieve it) til Tuesday's TEE. Then you will know more exactly what is going on in there. I will keep you in my prayers - Please keep us informed and if you want to ventilate, we are all here - just for you. God bless

 

[Nancy]

Hi Donna-

I'm sorry to hear that you are not feeling well. It's truly a disappointment.

It is hard not to worry about things, but you will soon be having the TEE, and it is always best to wait until after these tests to get the actual results, before panicking.

I would urge you to obtain a copy of the TEE test results. And while you're at it, get a copy of the actual echo summary that was just done. I think it is important for you to have and review yourself, especially in light of what the Nurse practioner mentioned i.e. things you hadn't heard before.

Your symptoms are important and you should pursue with vigor the actual diagnosis. And if you are not satisfied with what you are hearing, then consider a second opinion.

Have you had any change or additions in medication that might have contributed to the shortness of breath? Any swelling of extremeties or sudden weight gain that might suggest some fluid retention? What did your PCP have to say when you told him that your SOB was getting worse?

Your EF sounds good, but that doesn't tell the whole story.

I'm hoping that it is something that can be fixed medically. I'll keep you in my thoughts and prayers.

Please let us know how things progress.

 

[JimL]

Hi Donna, please come back often.

It sounds strange to me that you are going through your PCP to your cardiologist. When I go to my primary care physician, a general practicioner, he listens to my heart, but he doesn't really know what he's doing with it. All heart issues go to the cardiologist.

It is definitely difficult to understand all the medical terminology. Don't hesitate to ask for explanation after explanation, and a second opinion.

 

[Mark Wagner]

I agree totally with Jim. I would most definately be consulting DIRECTLY with a cardiologist at this point. Your in my prayers.

 

[djacq]

Thanks Ann, Nancy, Jim and Mark,

Yes, I have have been attached to my pcp like glue since AVR as he has been seeing me for Coumadin management and had FINALLY agreed to cooperate with my Pro Time and self testing.

I have been perseverating on this problem and a few things coincide with my increase in symptoms.....added magnesium, DHEA, calcium for supplements, stopped physical therapy. I have also put on 15 pounds since surgery BUT no swelling, no symptoms of CHF that I can see. Blood Pressure fine.

Yes, I will do what you suggest, also my cardio has copy of my pre op echo.

He is in Fla and due back Monday and Is very highly regarded by my pcp. I will have the TEE tuesday and will see him Wed. He said he would give me the results by phone or in person but I chose in person even if I have to wait longer for results.

Cardio nurse says this is common post op? Heart not used to blood flow?

TNX for your time,
Donna

 

[alicia]

Donna, I wish you luck my friend. I had surgery 1-6-03 and I too had SOB staring 3 weeks after surgery. They did an echo and my heart functions were bad, EF 35% and now my breathing is much better and my EF is 45% and overall heart function is better. I guess its true it does take time for things to "settle down".

Try not to worry too much. I will say a prayer for you. Please keep us posted.

Ive had some tricuspid lekage since surgery that is new and they said thats not uncommon. Hopefuly things will get better for you too.

 

[pegne]

Donna

Donna

I guess that phone call was like a bulldozer running over you. I can only imagine what your emotions are going through. I will keep you in thought and prayer. Peggy

 

[sylviayasgur]

hi donna!
how upsetting and frightening for you. many of us know how this feels. maybe it will just be nothing though.
please try and listen to what the others have said and, although it's difficult, try not to worry until you have to.
please let us know how the tee goes.
i also think that if you are not completeley satisfied, it certainly doesn't hurt to get another opinion. nothing to lose.
i hope this is just a little bump in the road to recovery and nothing serious.
you are in our thoughts and prayers.
be well, sylvia

 

[Granbonny]

Hi Donna

Hi Donna

I am wondering why you put on 15 lbs. in 3 months.. I was doing fine too. until I started gaining last Oct. Now, I am 20 lbs. since surgery... Been a bad winter..Could not get outside for that very important walking.. Now..I am back to walking..the first 20 minutes..gets me..but keep on going for another 10 minutes....and all shortness of breath leaves.. NOTHING like outside walking to stay in shape. Bonnie

 

[Mb]

Hello!

I just wanted to add some comments...encouraging I hope. My husband had a similar "recovery period". He had two St. Jude valves installed in October of 2001. Post surgery, he just did not recover really well. Now mind you, he was better that he was immeidiately presurgery (which was, frankly pretty bad), but really just not good. He had edema, shortness of breath, inability to excercise even for five minutes of walking slowly. The long and the short of it is that he has a severely leaking tricuspid valve, and the mitral valve has a moderate leak. He is also in a-fib. Not a candidate for a pacemaker, as the lead goes through the tricuspid valve, and creates more leakage. He also had to stop rehab, as he could not walk longer than 5 minutes, doing about 1.5 MPH. And, he can do nothing with his upper torso at all...his heart just goes up and over 200 BMP really fast.

Your heart has JUST gone through some major, major trauma. It is remodeling itself. You could have a problem that needs watching, medications, or nothing. Trust your PCP, your cardiologist, etc. - Obviously they are watching you pretty closely. But, you CAN live a long time, even with a problem. Now with regards to the mitral valve leaking....it has probably been leaking for awhile. Perhaps the other valve leaking was so severe, that it masked the mitral valve leak. I don't think the valve would just start leaking immediately post surgery like that.

Nancy always talks about needless worrying, and she says it better than anyone. There is truly nothing you can do about your condition that you are not already doing. And it truly does seem like you have really good doctors, that are taking care of you. Trust them. On Wednesday, you will find out the exact nature of the problem, and the plan of action. Remember to breathe. Deeply.

Best wishes on Wednesday. - Marybeth

 

[djacq]

Thank you Sylvia for the advice. I am trying not to worry but not great at stopping. I worry if don't have anything to worry about. I will try to stop and think positive.

Peggy thank you for the thoughts and prayers. Can you keep it up until Wednesday?

Bonnie, you sure hit a positive note about exercise. I am wondering if my stopping physical therapy started this? I cleaned house, garage and had a good week end...not a single problem with shortness of breath. Almost like if I keep my heart up there it is ok.....like when you walk it is hard than gets easier.

"Remodeling" made sense to me also, Marybeth. In fact the cardio RN in responding to my original histrionics, called it "adaptive changes"! Sure hoping thats what it is. Thanks for slowing me down and reminding me to just relax and breath deeply.

This group has constantly been a source of emotional support for me and keeps me sane.

Gratefully,
Donna

 

[terry40]

Hi Donna

Hi Donna

I'm also go through my PCP for my coumadin regulation too, and any other questions, he doesn't hesitate to get the cardio on the phone ASAP while I'm there at the office, and vice-versa for my cardiologist. To me it's great to have them working as a team.

Sorry to hear about your ankle, rehab has been great for me, I finished last week, but I'm swearing to keep up the same momentum. I had a bad cold and missed a few days of rehab, and home exercise, It was hard my first day back, exercise is so important.

Let us about your TEE results, you'll be in my prayers,

Terry40

 

[djacq]

Good Morning Terry,

I hope you can keep up the rehab. I think that ia where I went wrong. I didn't believe I really needed it because all I had was a valve replaced...no hi BP, no blockages, normal cholesterol. But I needed to realie i went from an active life to hanging around recovering for 8 weeks, then bang, back to work, rehab and then suddenly stopping rehab.

At any rate, my TEE is done and on the surface of it all the two cardiac mds' that did it could see nothing wrong.

I will see my cardio tomorrow for the final results but so far seem encouraging.

Test was easier than the cardiac cath but my throat is just a bit sore now.

Donna

 

[Nancy]

Sounds like good news, Donna

Sounds like good news, Donna

Good for you Donna-

I hope the final determination is as good as the first report. Let us know

 

[Mb]

Hooray! This sounds like to could be incredibly good news!
Post and let us know!

Marybeth

 

[djacq]

Again, you have all been there for me. I know your thoughts and prayers worked!!!!

I saw my Cardiologist today and got the official results of the TEE. It was fine.

I still cannot understand the descrepancy of the ECHO and the TEE. Cardio said something about sonar-type waves interferring with the echo giving it wrong info.

I do have some very minor leakage around the valve between the stitches which he said not to worry about and some minor leakage at the Mitral Valve that is insignificant.

The shortness of breath is from lack of cardio conditioning

I have to see him again in 3 months and HAVE to restart physical therapy and figure how to do it without pain in my broken ankle.

He also gave the go go ahead to have surgery on my ankle. Not sure if I am ready to go that route yet. Crutches all summer! Maybe in the Fall.

This all gave me such a fright and again I realized what a gift VR and its members are.

Thank you so much,
Donna

 

[Nancy]

Fantastic, Donna! What a relief.

 

[sylviayasgur]

hi donna!
what wonderful news!!!! i remember at joey's 6 month checkup, his echo showed a severe leak. we were so devastated and disappointed.... after all that.
long story short, he had a tee and it showed two trivial leaks that happened to be spurting in opposite directions, thereby creating (on the echo) the illusion of a severe leak.
so, i can totally understand how you must have felt and how wonderful you must now feel.
is there any kind of exercise you can do that would not involve your feet?
rowing? abs? maybe getting those endorphins going would help you feel better .
so glad you're ok.
stay well, sylvia

 

[djacq]

Sylvia,

I was interested to hear Joey's echo was inaccurate also. Albeit, a different explanation of the inconsistencies between the echo and the TEE!?!

I will have to ask my Cardio at my next app't (in 3 mo), what do I do for valve follow-up. He had told me that yearly echos were the standard for post valve.

I really don't want to go have another echo, but I also am NOT thrilled about yearly TEE"S!

What is Joey doing for follow up?

Yes, I am feeling much relief and planning on returning to rehab next week. That was a scare.

Wonder if this is a common phenomenon of echos?

Thanks again for helping me through this.

Donna