My 1st trip to the Cleveland Clinic

[will519]

Hello,

I am scheduled to go to the Cleveland Clinic on April 11th to see Dr. Lever. I was told that I will be receiving a packet from them any day now and also was told that he wants me to do some tests prior to seeing him. I was told that I have moderate HCM by my cardiologist on Jan 31st. Since then, every once and a while I get chest discomfort, the Toprol makes me tired and I just start Cardio-Rehab on Feb 28th. Some of you already came some advice to the call the HCMA center because I was looking for questions that I should be asking at my appointment. My wife tells me that I am in denial about this. Thanks again for listening.

[tom531966]

Re: My 1st trip to the Cleveland Clinic

I find it a bit odd you are already doing cardiac rehab before going to Cleveland Clinic????? So many of us got bad advice from the doctors who diagnosed our condition before we started going to the COE I am not sure I would have survived therapy before getting treated at a COE. I am far from the expert here but would think proceeding with caution on the therapy until you saw Dr. Lever would be a good idea.

[LindaSo]

Re: My 1st trip to the Cleveland Clinic

Since cardiac rehab is a monitored program (heart monitors, BP monitoring and 02 sats if needed), if there is a problem it will be identified and stopped. Since Will519 has recently run marathons, he is not deconditioned and I don't expect there to be a problem. Cardiac Rehab usually is ordered to assist a deconditioned person (post myectomy or MI) to become reconditioned. He is not the typical Cardiac Rehab patient. I think the purpose is to see how he responds to some more modified exercise program in terms of BP response, arrythmia's etc. which will provide more data to be able to put a good picture of his response/tolerance to exercise. Just my 2 cents worth.

And our marathon runner will also be a role model for the other patients, and for the women's sake, I hope he wears his running shorts !! That would have made my day!!
LindaSo

[Cynaburst]

Re: My 1st trip to the Cleveland Clinic

Yes, Linda So! When I did cardiac rehab after my myectomy, I was by far the youngest person in the room. It was definitely not a very attractive bunch.

[tom531966]

Re: My 1st trip to the Cleveland Clinic

Funny story. My first day of Cardiac Rehab. They have you meet downstairs at the facility I go to then you go up as a group. As we walked up the nurse who was escorting us kept looking at me strangely. Finally when we got upstairs she comes over to me and says "You know this is cardiac rehab right?" Without saying a word I pulled down my tshirt revealing my scar and said yes I know why I am here LOL. Being the youngest one there though isnt always a good thing. They are tougher on you for sure!!!

[LindaSo]

Re: My 1st trip to the Cleveland Clinic

And if you are a woman, those old guys scope you out. GIVE ME A BREAK !! BUT, it's good for the ego.

[mtlieb]

Re: My 1st trip to the Cleveland Clinic

Will519,

Good luck on your upcoming visit to the Cleveland Clinic. I saw Dr. Lever before the new heart center was built and they were extremely well organized even then and sent me a complete schedule of my various testing in advance. I can only assume that it is even better now, so rest assured you will be in good hands.

Jim

[mtlieb]

Re: My 1st trip to the Cleveland Clinic

I was by far the youngest person in the room. It was definitely not a very attractive bunch.

LOL...

I kept noticing people looking at my legs and finally someone came up to me and asked where they took the vein from?

I replied that my veins are all very much intact, thank you.

[will519]

Re: My 1st trip to the Cleveland Clinic

Hello again,

Thank you for the information and insight and especially the comedy relief. I did noticed yesterday that at 51 years, I was by far the youngest and watching people workout on the machines in dress pants and a tie one was kind of weird. I will shock them today with my running clothes on, have not worn them since Jan 29th. Thanks again for putting a smile on my face this afternoon. Tom, thank you for your concern, I will definately stay in tune with my body when working out.

[LindaSo]

Re: My 1st trip to the Cleveland Clinic

Jim, one day I was on the treadmill and a rehab newbie was on the treadmill next to me. We introduced ourselves to each other and the conversation went like this:
Her: How many?
Me: How many what?
Her: Stents
Me: What?
Her: How many stents did you get?
Me: None, my coronary arteries are wide open

[Christy]

Re: My 1st trip to the Cleveland Clinic

Hi Will,

When you get your packet from Cleveland you will be impressed at how organized they are. When I went up there, I didn't have a huge number of questions, because I had already done a ton of research. IF you do think of things to ask, just jot them down and take the list with you -- it IS hard to remember what to ask about when you are up there. I hope everything works out for you -- you are in the best hands up in Cleveland. This is not a fun condition and, as mine did, can get more and more limiting pretty quickly. Let us know if you have any questions along the way -- I am not suggesting you ignore your doctors, but unlike at many local cardiologist's offices, there are people here with lots and lots of experience with this condition here. Best wishes!

[gfox42]

Re: My 1st trip to the Cleveland Clinic

Just to add to Christy's point -- they actually like it if you come in with a list of prepared questions. They'd rather answer your questions than have them hanging out there in the back of your mind.

Gordon

[will519]

Re: My 1st trip to the Cleveland Clinic

Hello,

Thanks again for the information. I just got my packet in the mail yesterday and wow, they have me down for a bunch test on April 11th then I have to go back early on April 12th for an MRI and Holter. I see that they are very organized, Register at 830am, EKK at 9am, Echocardiogram at 915am and so on. Very military like.