Cleveland Clinic Dr. Lever

[Bob in Texas]

Go to the Cleveland clinic next Monday for another review. My schedule shows I see Dr Lever on Monday before all the tests. I would see him after the tests correct? He is not scheduled to see me on Tuesay. Is seeing him before I leave automatic since I am traveling from Texas? I am tired scared and worn out hopefully this trip will be worthwhile. I have all the confidence in the world with Dr. Maron at Tuft's but just need this other opinion to settle things in my mind. Thanks to all on the support.

Bob

[THW]

Hi Bob,
Yes, you will see Dr. Lever both before your tests, as well as after. It may not be on your schedule, but once all your tests are complete, just go back to his receptionist desk and let them know you've finished all of your tests and are back to see Dr. Lever. He'll probably tell you so when you see him initially, to remember to come back. He'll go over the results with you then. Also, if you get finished with one test, simply go sign in at the next even if it is before your scheduled time, as they will often get you in before hand. Too, bring a good book or something to occupy your time. Don't be surprised if you have to wait a while to see Dr. Lever because he does not rush through his appointments with his patients, and he will give you the same courtesy. Remember to bring a written list of questions with you, and Dr. Lever will take the time to go over them with you. He is very conscientious and definitely worth waiting for. I and many here have great respect for him and his expertise. If anyone can decipher through your complicated issues, it is him. I am confident that you will get great care there.
Wishing you peace, and please let us know how things go.
Theresa

[Bruce42]

Bob, Theresa covered it all. Good luck!

[THW]

Bob,
Been thinking of you today; give us an update when you can.
Theresa

[Bob in Texas]

Well back from the Cleveland Clinic they say I need a Myectomy. Dr. Lever agreed I am a complex case. Looks like the first week in October waiting for an offical date. Dr. Lever recommneded I do the surgery at Cleveland or Mayo only.

Bob

[Bruce42]

I'm glad you got an answer, Bob. It's been a long road for you.
I think "Cleveland or Mayo only" is good advice, esp. for your complex case. Looks like you'll be in Dr. Smedira's hands soon. He's great.

[gfox42]

Bob,
Glad you've got some answers.

You're in exceptionally capable hands.

Gordon

[THW]

Bob,
Thanks for updating. Been wondering about your appointment.

Well, I know a myectomy is not something we really look forward to, but I'm glad that you got some definitive answers from Dr. Lever. I hope you recognize that you WILL be in great hands at Cleveland or Mayo.

Keep us updated. And hang in there while you await your date; I know it isn't easy. Hopefully soon, you'll be on the other side and feeling better.
Theresa

[Bob in Texas]

Thanks for the comments. While in Cleveland I got to speak to Dr. Smedira and got a good sense of confidence from him. Does anybody know the Surgeons name in the Mayo clinic? Can I contact him personally to review my results? Cleveland said they can do it in about five weeks. Would consider Mayo if it can be done sooner...I am tired and need to get this done ASAP. The one thing I have learned is how complex HCM can be. Dr. Lever even stated this disease can be challenging.


Bob

[Cynaburst]

There are two surgeons that do myectomies at Mayo. Their names are Joseph Dearani and Hartzell Schaff.

I doubt that they would do a consult without you going there and doing the tests and being examined by them personally.

You are in good hands at Cleveland with Dr. Smedira. Why don't you just call them every week or so and see if there have been any cancellations so they could do you sooner. Heart operations are cancelled or postponed all the time.

[Midge Rollins]

Bob, you are in good hands with Dr. Smedira. I am glad you have some answers

[Bruce42]

I'm sure some of the Mayo alumni will weigh in. I don't know about Dr. Schaff (he may be great--I just don't know), but Dr. Dearani is very well known. The HCM specialist at Mayo (the analogue to Dr. Lever) is Dr. Steve Ommen. They're just as expert as the Cleveland folks.

No idea whether they could get you in any quicker than Cleveland could, but Cynthia's right that you'd probably have to go up there for them to do their own round of exams first. Whether that's worth it is up to you of course. I think her advice to follow up with Cleveland for cancellations or anything else they can do to move you up is good advice.

[Bob in Texas]

Thanks, I will call Dr. Smerdira's Office during the week anyway to forward a recent test and will ask them to put me on a waiting list for cancellations. Please no more testing...... If they give me a few days notice I will fly in ASAP for sure. This has been dragging on way to long, but it made me try drug therapy. Funny, my local Dallas Surgeon contacted me yesterday to see how I was doing and I told him about my Cleveland visit. He indicated he would do the surgery next week and left it as an option. While I respect him for following-up I think I will let the big boys handle this one. Bruce, " How do you feel since your myectomy?"

Bob

[Bruce42]

Short answer: Great. I feel very very fortunate to have found that treatment and to have found Dr. Lever and Dr. Smedira (as well as the HCMA).

As many people (including me) have related in their "myectomy stories" on these boards, it is amazing to feel what a "normal" level of energy feels like again. The symptoms crept on gradually, so they weren't all that noticeable, until I got to a point where I had trouble just walking relatively level city streets. Now that I'm able to walk briskly, ride my bike, mow the lawn, run up stairs, do all the old things, it's amazing to me that I wasn't able to before, that I forgot about these things, and now that I can do them again.

My recovery was pretty straightforward. Surgery on a Thursday, up and walking in ICU by Saturday, had to wait till Monday for my pacemaker, so transfer to "step-down" (i.e., regular) floor on Tuesday, discharge Thursday. I was able to do some walking on the treadmill in the rehab gym before I was discharged. I stayed in the Cleveland area for two weeks after, which was good because I had one fainting episode when I tried to do too much too quickly the first week out. (Walking around, window shopping and carrying groceries in hot sun--bad idea, even for an hour.) That was the one blip, though. Once I got home, a lot of couch time the first few weeks, walks that started out with a shaky block or two, but got longer and steadier pretty quickly. Back to work after 7 weeks, I think, or maybe 8.

The pacemaker was because I had alcohol septal ablation before the myectomy, and as a result have complete heart block--I'm 100% dependent on my pacemaker. (Long and separate story.) If you don't have a heart block issue already, you probably won't have to worry about this--only a small number of myectomy patients without prior heart block issues need pacemakers (5% I think? something low like that).

You can read plenty of folks' myectomy stories by searching the threads here. Everyone's different in how they recovered, how long it took, whether they had any complications. But I think just about everyone is the same in this respect: they all feel remarkably better. To varying degrees of final result, but all better than they were. I haven't heard from anyone yet who didn't feel better, or who regretted their myectomy.

Shout out with questions as you get closer--there are plenty of folks here with answers. A couple of months ago, Ipecac compiled a really great list of pre-op preparation tips that people contributed over time. Search for that--it's pretty comprehensive.

Good luck!!