Dazed and Confused!

[mistreated]

Well I don't know what to think. I'm 48 yrs old. Back in October I crashed a motorcycle and broke my left shoulder blade and 5 ribs in 8 places. In early November, During a follow up checkup they found a heart murmur. I went in for an echo and was told that I have moderate to severe MR. Had a TEE done and two separate Dr's couldn't see the valve. Assumption was that my heart may have moved in the accident. Talked to heart surgeon and scheduled OHS for March 7th for valve repair or replacement. So, February 27 I had a pre-surgical CATH which I was told needed to be done within 2 weeks of surgery. After the CATH I was told that there is not significant MR. Did another ECHO on March 2 and it confirmed only mild MR. Cardiologist said the BP Meds have worked so my valve isnt leaking as bad with the lower BP. Going to have ECHO done every 6 Months to watch it. Now I need to turn my life back around and get my job back, tell everyone I know never-mind and get my brain wrapped around all this. Can they really go from OHS in 5 days to never mind. I understand that this is a good thing, which it would have been better knowing this 3 months ago. Can BP meds make a mitral valve leak less and wont it leak more with exertion? Do these guys know what it takes personally, spiritually, mentally, financially, ect. to get ready for OHS?

 

[Lynlw]

I'm sorry to hear things are so confusing and tough for you right now. Since they couldn't see the valve, I understand how things could change once they had the cath and could really see everything. Its happened to Justin a few times, and we dont know if he will need surgery or not until the cath, once h was even hooked up to IVs in the preop area, when they decided not to operate. SO I know how it can be to make alll kinds of plans and then say..um never mind. IF it helps at all people (jobs school etc) were always pretty good about it, and were understanding. Hopefully you have the same experince.
Sorry you have to try and get your job back, did you quit because you were ging to have surgery, or have you been out since the accident?
Since things have changed so much I probably would get a second opinion

 

[tobagotwo]

In a word: no. I'm not a doctor, but that ain't the whole story, as far as my understanding can gauge. And no, they don't generally seem to recognize what it takes to prepare oneself for heart surgery. It has to be enough that they know when the situation requires heart surgery. And sometimes, they can miss the boat on that, too.

The severity of regurgitation is only mildly affected by blood pressure, unless your blood pressure is so bad for so long that it causes enlargement of your left ventrical, and the distortion allows some leakage. Not common at all. That amount of LV enlargement would also show up on your echo report. The BP medication is to reduce the overall stress on the heart (which may also help to reduce swelling over time).

I'm not even sure why they would schedule surgery based on "moderate-to-severe" MR. Surgery talk usually starts when the word "severe" shows up all by itself. Also, how does a standard echo happen and not note that the heart is significantly shifted in the chest cavity or on its axis?

It's not likely that your doctors and sonologist are completely incompetent, so the explanation probably lies somewhere else.

One scenario that seems reasonable: your heart may have been bruised and become non-concentrically swollen in the accident, and may not have gotten back to its normal shape by the time of the echo, allowing leakage from a not-fully-closing mitral valve. It may have remodeled (healed and reverted to its original shape) enough in the ensuing months that the regurgitation had diminished greatly by the time of the cath. By relieving some of the strain on the heart, the BP meds may have secondarily aided in your heart remodeling, but time would have been the biggest factor. In this theory, it might even improve a bit more yet.

If it's back in its proper shape and otherwise undamaged, most levels of exercise shouldn't cause a concerning amount of added leakage.

The longer-term question is whether some of the chordae that help to operate the mitral valve were also damaged. They would be less likely to heal and return to normalcy. Over time, they could allow more leakage, or they could remain at the level they are now for your lifetime. Just depends which card you draw.

Best wishes,

 

[Fundy]

Wow, quite a roller coaster of emotions for you for sure. It almost seems that the trauma from your accident caused internal swelling or something causing your valve to insufficiently close and over time of healing it is returning to normal. I think the good news for you is that you may never need OHS.

 

[Mentu]

Hi, M., I had a somewhat similar experience when I was first diagnosed in 2000. From the initial tests, my cardiologist began discussing the probable need for surgery. As additional tests were run, the talk was still about replacing the valve. I was stunned that this could be happening as I had never had any idea that my heart might have a problem. After several weeks, I came to accept that surgery was needed and was preparing myself. Then, my cardio decided to do one more echo-cardiograph. A week later, as we reviewed the results, he said this test was better than the first and showed the stenosis was moderate and surgery would be years away if it ever happened at all. Yes, this was good news. Still, I felt rather like the Samurai who had committed himself to death and was sitting calmly holding his sword preparing to end his life when suddenly someone rushes in to say "Oh, it was all a mistake, no need for that, sorry for the bother!"

One of the reasons I found the site helpful years later, is that my cardio and surgeon did very little to prepare me for surgery other than to discuss it as an intellectual exercise that was, after all, reasonably safe. Despite, intellect, we are emotional creatures and neither of them attempted to address how all this left me feeling. In 2000, it took awhile to recover from the whirlwind of surgery/no surgery. For months, I worried that every twinge in my chest signaled something malign. I think this highlights a significant short coming in our medical system that many doctors treat the disease not the patient.

By 2009, I began feeling quite ill and after a few weeks I was referred to a surgeon for the second time in a decade. With one exception, things went along the lines of that first experience with the cardio and surgeon being very matter of fact. The difference was my family doctor who I began working with in 2001. I was very fortunate that she became my advocate. She provided more information to flesh out the conversations with the cardio and surgeon and she expressed her concern for me and how I was feeling about it all. This helped along with being a part of the VR community so while there were several distressing weeks, those passed and surgery/recovery went far better than I might have imagined. I will say, however, that while waiting for my date to arrive, part of me expected every day to get a call saying "Our mistake, just kidding!"

Now that you are in the limbo of long term waiting, there are some things you can do to help you recover your footing. Talking about how all this makes you feel is likely to help more than most things and we here in your VR community are good listeners. It also helps to learn more about your particular heart problem. You can collect your test results and keep a file of your own so that, over time, you can better recognize trends. You can also begin to make changes in your life that will improve your cardiovascular health so that if and when the day comes that surgery is necessary, you will be in much better physical condition which will aid you in recovery. I would also encourage you to engage your family doctor in this discussion to help you navigate the medical maze and support you the person.

Sorry for climbing on to the soap box to rant; Let us know if we can help.

Larry