Tom Parker - Heart Valve Journal

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Tom Parkerposted a journal

3048 days ago

Cathleen Weed, Phyllis Petersen and 1 other reacted to this

This week was my regular six-month checkup with my cardiologist. This time, we did the CT scan. The aortic aneurysm remains unchanged compared to last year ...Read more

This week was my regular six-month checkup with my cardiologist. This time, we did the CT scan. The aortic aneurysm remains unchanged compared to last year -- 44mm just above the aortic root and 36mm up at the arch. I also read about actor Bill Paxton last week. I'm not so eager to jump into this surgery anymore. The palpitations do bother me, so I think I'm going to start really chasing that down more aggressively. They don't happen every day. And the cardiologist says they're just PACs, PVCs that aren't anything to worry about. But, I'll tell you. After an afternoon of my heart feeling like it wants to jump out of my chest any which way it can, I get straight-up worn out. By the time I hit my bed, I'm fatigued and ready for it to stop.

Cathleen Weed Those palpitations are exhausting. I went through that prior to my most recent replacement. I was hav ... Read more

Cathleen Weed Those palpitations are exhausting. I went through that prior to my most recent replacement. I was having 100's of PVC's daily. I can tell you that limiting your caffeine (I gave up coffee completely) and increasing your water intake does help. Sorry you are in limbo. I totally get that. Do what feels right to you and get as many opinions as you need to feel comfortable. Quality of life matters and you obviously don't want to wait too long. Super frustrating.

Juergen Li Tom - I wen through the same ordeal: Bicuspid valve, aneurysm and then endocarditis. Had now idea abo ... Read more

Juergen Li Tom - I wen through the same ordeal: Bicuspid valve, aneurysm and then endocarditis. Had now idea about all this until August 2015 - thought I was done after the endocarditis and then got a new mechanical valve and the aneurysm repaired end of July 2016. Although I did not really feel bad before my surgery I can tell you that I am now feeling considerably better. You will need a new valve - sooner or later. I obviously cannot comment how stable your situation is - but I don't think you will regret getting your valve permanently fixed - and to get back to normal.

Civita Fahey I had the same thing, once a year, then every six months, then three months..and now I am getting it ... Read more

Civita Fahey I had the same thing, once a year, then every six months, then three months..and now I am getting it replaced in 3 weeks.. As Juergen said, and my surgeon said, we can't skirt this.. its going to happen.. I don't feel too badly at all, just get winded more during exercise and going up stairs, no palpitations.. I did earlier in my diagnosis, but, maybe it is, like Cathleen says that I drink at least a half gallon of water a day.. But, getting as many opinions as you feel are right for you is important.. i got 3 before i decided on which surgeon I felt most comfortable with..you ultimately will be the one to decide . Believe me reading about Bill Paxton;s death from a stroke after an AVR, FREAKED me out! I still think about it, but, I keep telling myself, the risks are low and as any other surgery there is always risk.. the alternative isn't any better.. am I scared, absolutely, but who isn't.. I have to trust that I'm making the right decision.. plus I don't know his situation or any other co-moribities he may have had etc.. so, it's that 1-3% that is still pretty low.. keep that mantra.... best to you..

Tom Parker Thank you all for responding. I just recently created an account here and am glad that I did. I've ... Read more

Tom Parker Thank you all for responding. I just recently created an account here and am glad that I did. I've been dealing with this for almost two years since the episode of endocarditis where we discovered the bicuspid valve. It's good to finally connect with you folks and read the discussions that go on here. It helps quite a bit.

Cathleen, I gave up coffee completely starting during the stay at the hospital two years ago. I was doing great until this past October when I got a new job. Their coffee is soooo good that I fell off the wagon. Only in the past three weeks did I give it up completely again. I've noticed a difference, but it's not 100%

I'm testing a hypothesis of my own right now where I think it might be tied to my physical activity. My doctor said it's okay to do moderate aerobic activity. (Resistance-type, anaeroboic exercises are verboten.) So I get on my bicycle and do about 1/2 hour on the rollers. It seems to me that I then have problems for the next few days after that. I'm still proving that out in my own mind. I'll let you know when I've found a predictable pattern... if I do. :)

And both of you, thanks again. It's good to hear I'm not the only one that has this problem.

Juergen Li Tom - just two weeks ago I escaped the rainy Oregon weather and did over 220 miles of mountain biking ... Read more

Juergen Li Tom - just two weeks ago I escaped the rainy Oregon weather and did over 220 miles of mountain biking in Arizona over 4 days. I spent there also a few days before Thanksgiving last year - so only a few months post surgery. Go for the surgery - you will not regret it. I would recommend - as Civita suggested - to get several opinions. I went with a surgery technique that was somewhat less invasive (Mini Sternotomie) and where plates for closing of the Sternum were used. That meant better stabilization and faster recovery. Was on prescription pain meds for one day and back at work 2.5 weeks after surgery.

Tom Parker Hello Jeurgen. Thanks for the advice. You've opened my eyes to another option that I didn't know ex ... Read more

Tom Parker Hello Jeurgen. Thanks for the advice. You've opened my eyes to another option that I didn't know existed.

I know that surgery is not an option. It's just a question of when. For now, I'll use this time to do all the research. (Granted, I should have started this two years ago. But, here we are.)

Thanks again.
Tom

Juergen Li Tom - good to see that you are getting more motivated. Yes - groups like this are great source for in ... Read more

Juergen Li Tom - good to see that you are getting more motivated. Yes - groups like this are great source for information.

Tom Parkerposted a journal

3055 days ago

May of 2015, after seven weeks of being inexplicably sick, I was told that I have a bicuspid aortic valve and that it would need to be replaced. This also ...Read more

May of 2015, after seven weeks of being inexplicably sick, I was told that I have a bicuspid aortic valve and that it would need to be replaced. This also explained the weeks of sickness. Bacteria (Strep vasilli, or something like that.) had lodged itself on my valve and given me an acute case of Endocarditis. The endocarditis was cured after a week in the hospital followed by a few weeks of self-administered IV antibiotics at home through a pic-line. However, the valve was damaged. As I'm told, the edges of the leaflets look like a tattered flag. So, not only is it a bicuspid valve, it's now a tattered bicuspid valve. Awesome! For now, it's an indefinite waiting game. Since then, I've been run through the gambit of tests: TTE, TEE, Stress Tests, CT scans, etc. The diagnosis is that the valve is moderately leaky and the corresponding aneurysm on the ascending aorta is within threshold. So, we wait.... indefinitely. We wait for it to deteriorate to the point that it warrants surgery. In the meantime, I give up (or cut back) on some of my favorite activities: biking, hiking, snowboarding. And I'm hindered in some of my less favorite activities: yard work including felling trees, heavy lifting, etc. I don't know what's better, wait in this limbo or go in and get it done and get back to a more "normal" life of activity. For now, the doctors are winning. We wait.

Civita Fahey do you have any symptoms? normally when you have symptoms is when they say to schedule it .. giving s ... Read more

Civita Fahey do you have any symptoms? normally when you have symptoms is when they say to schedule it .. giving some time in between.. they told me 3-6 months to schedule once I started getting mild symptoms

Phyllis Petersen It sounds like it's really affecting your quality of life. Have you explained that to the doctors? It ... Read more

Phyllis Petersen It sounds like it's really affecting your quality of life. Have you explained that to the doctors? It may time to move on this before other aspects of your health suffer.

Tom Parker Wow! My first day on this site. I guess I came off a little negative, not realizing this blog would ... Read more

Tom Parker Wow! My first day on this site. I guess I came off a little negative, not realizing this blog would go up onto the front page. Oh well, perhaps it's good to let out a little frustration because it is frustrating some days.

In any case, the only symptom I have now is uncomfortable palpitations that sometimes go for hours at a time. They make my chest feel fatigued. Other than that, I'm able to lead a mostly normal life.

When I say I cut back on my activities, I used to ride bicycle centuries (100 miles). I don't do that now. Just a 1/2 ride on level ground. When doing yard work, I work at a slower pace and carry lighter loads. I used to play 2 hours of intense raquetball a couple days a week. Now, it's a half-hour of moderate walking.

The frustration comes knowing that exercise is what keeps a body healthy. At my age, it responds slower to exercise so I need more of it. And instead of being able to do more, I have to hold back.

I've talked to the Dr's about it. And they have a compelling argument. I'm 44. They're telling me my only real option is a mechanical valve which will involve full-up open-heart surgery. At this point, the risk introduced by the procedure is greater than the risk of leaving it alone. That's where we arrive at the waiting game.

Phyllis Petersen Have you gotten a second opinion?

Barbara Wood I second getting a second opinion!

Tom Parker Yes. This actually is my second opinion because the first was just off-the-wall crazy. I've been re ... Read more

Tom Parker Yes. This actually is my second opinion because the first was just off-the-wall crazy. I've been reading more and more on this site lately and am seriously considering a third opinion. I'll probably make it start happening in the next week or two.

Phyllis Petersen It may be worth a little extra research to find someone with a long track record and connected to a t ... Read more

Phyllis Petersen It may be worth a little extra research to find someone with a long track record and connected to a top hospital. I was fortunate that the doctor who reviewed my echo took me over, although the other cardiologists at the hospital are excellent too, so they probably would have come to the same conclusions. Timing is a tricky question, as I'm sure you've seen on here.

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