back in a holding pattern

[jhc1]

I saw a cardiologist at the Texas Heart Institute last week, expecting to be scheduled for consult with the surgeon. I've got a 4.5 cm aortic root aneurysm with moderate regurgitation-echo in Feb showed EF of 61%, angiogram in April showed EF of 45%. Cardiologist wants to tweak some of my BP meds due to low resting pulse (~45bpm) and repeat the echo in three weeks. I just don't know what to feel...I went down there having psyched myself up, and now here I sit...the waiting never gets easier, does it?

 

[Guyswell]

It may be necessary for insurance reasons to show that reasonable tests were conducted (and repeated) and changes in medications were made to confirm that it really is time for surgery. Your test results seem to indicate it's time for surgery. I'm surprised you're not feeling faint with a pulse that slow. You must be taking a beta blocker. The waiting isn't easy. If your EF returns to 60% with a more normal heart rate after your meds are adjusted, you may be back in the waiting room for awhile. An EF of 60% is good. An EF that has changed from 60% to 45% is an indication of decompensation (unless it's attributable to your medications). When it's clear that the risk of waiting outweighs the risk of surgery, you'll be sent to the surgeon.

 

[jhc1]

You're correct...I'm taking a beta blocker, but have been for the past two years...symptoms have only recently developed. In the last month or two, I've gone from putting 70-80 miles a week on a bicycle, to being light headed and rubber legged going up a flight of stairs. I am glad he's being thorough and eliminating all the other potential causes before recommending surgery, but I hate the way I feel, and the inability to cycle or do much of anything without symptoms...How long have you had your bovine valve? I'm 55 and am leaning that way. I sail, cycle and scuba dive and want to continue....

 

[ski girl]

Why do you think warfarin would prevent you from sailing, cycling, and scuba diving? I always thought warfarin would have a negative effect on my life too but it hasn't . I ocean paddle and have been hit in the head in the surf break by a flying boat, and I mountain bike very badly, crashing at least once every ride. And I haven't bled to death yet!

So when it is time to make your valve choice, keep in mind that warfarin does not reduce you to short slow strolls around the park!

 

[Guyswell]

I received a bovine valve nine years ago at the age of 41. I didn't want to take coumadin. It was very convenient while it lasted but that valve calcified and closed almost completely after only eight years. I know it would need to be replaced at some point but I was hoping for 15 or more years. Last year, my surgeon removed the bovine valve and replaced it with a mechanical valve. I take coumadin now and I still ride my bike about 60-70 miles a week when the weather is good. I've made a few common-sense adjustments to my routine (I've always worn a helmet). These days, I stick to the paved asphalt trails that run through the park and along the streams. I don't ride on wet pavement and I don't ride along the edge of roads anymore. I don't want to risk being nudged into the ditch by a passing car. I don't go mountain biking because I don't want to run into a tree or go flying over the handlebars. The next time the exterior of the house needs painting, I'll probably stay off the tall ladder and pay someone else to do the high stuff. Other than these easy changes, being on Coumadin has been no big deal so far. I have learned that I can't stay up late with my buddies drinking 6 or 7 beers without sending my INR soaring.

 

[jhc1]

thanks all for the personal experiences...my other concern was that my family and I travel alot, sometimes to rather rustic and out of the way places. As far as the scuba, my cardiologist said that it would be right out if I had a mech valve and coumadin. Anyone here a diver with different experiences?

 

[ski girl]

Allow me to clamber on to my soap box:
I live in Western Australia . . . a state half the size of the US and with only 2 million people. It's hard for me NOT to be in out of the way places. When I got cracked in the head by my kayak last year I had to paddle half an hour back to the start by myself, find someone to help me, and then find the ambulance to get me to the hospital (the district only had one!). It was over two hours before I got to a tiny hospital where I then had to go looking for the one nurse.

Verdict: despite a huge lump on my head, there was no concern about an intracranial bleed. When I crash on my mountain bike I'm easily an hour from medical help and that's only if I'm still able to ride. Coumadin has never caused a problem. So I don't think you need to worry too much about bleeding events in out of the way places!!

As for SCUBA- do a quick google search (I just did) and you'll find that coumadin doesn't rule diving out either.

There do seem to be some cardiologists out there who are absolutely petrified that their mech valve patients will bleed to death at the slightest cut or injury - but those of us actually on the drug, and bashing ourselves around, know that we're not all delicate little flowers.

Ultimately both valve choices are perfectly good ones (my first was a bovine valve) but I wish I had known how durable I would remain on coumadin before I decided on a tissue valve originally. (And I'll get off my soapbox now!)

 

[jhc1]

ski girl-thanks for sharing your personal experience...I suppose everyone here knows the internet can be a great source of information, but one often finds conflicting data, as I did with scuba diving. It really helps to be able to get unfiltered data from people who have been through this and are living full, active lives. I think my cardiologist may be one of the conservative ones, I'll have to see what the surgeon says, when that time comes. Thanks again!

 

[sood]

Listen to your body and go with your gut. I am minutes from being 5 days post op replying from hospital bed. I am so glad I decided to have the surgery as things were worst than tests revealed. You are in control, go with your gut and trust in God.

 

[jhc1]

Saw the cardiologist at St Luke's yesterday. echo showed no changes from February. Met with the surgeon late in the day. I'm happy to have him be the one to work on my heart when the time comes. Scheduling a TEE for either tomorrow or Friday, depending on how fast the insurance can react...The surgeon recommended a St. Jude's Trifecta, if I go tissue. Anyone have experience with it?