Hospital Stay, Lifestyle and Valve Disease

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Rick

Well-known member
Joined
Mar 31, 2008
Messages
123
Location
Latin America
Hi all, I have not posted in a bit. I am in my early 40s with moderate-severe aortic regurgitation and a bicuspid aortic valve. Was diagnosed 4 years ago at the Cleveland Clinic (took an international flight just to get there) and was told I'd probably need surgery in about 5 years or so but that there were things I could do to help perhaps elongate the time to needing surgery. Was also told I had a mildly dilated ascending aorta.

So I lost 30 pounds, walked regularly, gave up caffeine, only drink moderately and take my meds since then (Altace 10mg, half of 6.25 Coreg, and now also Lipitor), also tried to reduce stress (which I have never been successful on this). In December I had to travel our of town for work a lot, had a lot of social and professional engagements and had also started a brief weight lifting routine in the AM - nothing to bad, at most 30 pounds (I just felt weak after losing weight and not doing a lot of exercise).

In late December, I was exhausted, got a really bad migraine at work to the point where I could not speak. I was taken to the hospital where I could not answer my name when asked. I could understand what people were saying. I just could not speak. I was hospitalized overnight as at first the MDs thought I could be having a stroke though it was just a migraine and was on anticonvulsants for a week or so.

My November echo had shown a more stable or slower deterioration of the heart valve condition than the MDs expected 4 years ago but the ascending aorta I understand is only partially seen. So in late December, after the hospitalization, I had an appointment with the local cardiologist.

1) Lifestyle: he told me that I should not engage in sports like I had been. The day prior to my hospitalization I had played a one hour soccer game in the hot sun 90 degree weather. He also told me not to take up surfing, which I was beginning to try to learn. I really enjoy these things a lot.
2) Weights: he did tell me this was fine though small weights without straining.
3) Migraines: discussed this but he did not say much.
4) Ascending aorta: we did discuss doing an MRI or other exam to visualize since the ascencing aorta well since it has been 4 years since last MRI.
5) Overall: he said he was happy and that things had been more stable than he had thought 4 years ago.

So though overall I should feel very pleased, I cannot help but feel frustrated on lifestyle -- my son is getting to an age where he likes all the sports, and I want to surf or go skiing with him. It is also hard to slow down at work etc. My significant other is also athletic and not being able to share is frustrating - she oscillated between thinking I have a horrible condition which scares her to thinking it's all in my mind and she wants to talk to my docs.

So feeling frustrated and want a normal life. Any thoughts? Anyone have had similar recommendations? Anyone gone through a migraine like that? I think the weights may contribute to the headache but unsure.

Best wishes to all of you,

Rick
 
Lifestyle was one of the things that the cardiologist my husband originally saw talked to me about after my husband's TEE. He said that my husband was way too young (age 46) to let a fixable heart condition like his (BAV) dictate how he lives his life - meaning the accommodations he's been making. Hubby's got a very physically demanding job (repeated heavy lifting...as much as 4,000 combined pounds in a day) and has been suffering increasing shortness of breath for years that had been treated as exercise-induced asthma until August 2011 when he finally was given an echo to determine exactly what was going on with him.

So while he's not emergent, it is inevitable and the condition is affecting his lifestyle. He's scheduled for May of this year. While this isn't the ideal time for him to have it work-wise, the accommodations he's now been laden with (lifting restrictions, etc) have pretty much made it impossible for him to be of any use through the next busy season anyway. And we definitely do not want him to end up with an issue and be in one of those emergent situations where he would have to have it done locally (we live 300 miles from the hospital we've chosen).

So really, I think you need to do all your follow up tests to determine the exact state of your ascending aorta before you can make a real decision on what your path should be. We not only did all the tests, we went for a second opinion which was the best thing we could have done. We had so many questions that just were not getting answered and it took a second cardiologist and a consultation visit with the surgeon for us to feel like we had any clue.

I have no idea what part the migraines play in this, if any.

If you feel comfortable having your significant other go with you to the appointments, by all means do so. I'm sure she has her own questions and if she's at all doubting of your diagnosis/lifestyle restrictions, maybe that will help her understand the importance of what you need to do.

Good luck.
 
Is it possible for you to return to Cleveland for another evaluation?
If that is something you are able to do, it could be very helpful.
You are too young to have such limitations on your lifestyle when there are ways to make huge improvement.

Best Wishes...... it would be wonderful if you can go again to Cleveland.
 
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