Another Year, another Cardiologist

[Burton Borrok]

Hi Sheryl,
Somewhere in the postings you must have run across the phrase – “Call Lisa.” It’s an excellent idea for you too. If there is an HCM specialist anywhere near your area Lisa would probably know about it. She’s also a fabulous resource and guide with all your questions and problems – and best of all – she is happy to help all who ask.

Of course, if you ask me, I think you should go to one of the top centers and get a full work-up. That would be the ideal place to build a foundation from which to attack your HOCM. After that, with an association between the center and your local HCM doctor you should be able to attain the best possible control of your condition. Whether or not an ablation or a myectomy or valve replacement or whatever would be in your best interest could then be accurately assessed and you would be able to make an informed decision.

So dearheart, call Lisa, and let’s get the ball rolling. She’s generally in the office on Tuesday’s and Thursday’s during east coast business hours. If you miss her, Kelly will be able to set up a time more convenient for the both of you. If your local doctor is now talking about physical intervention, it should be looked upon as a spur to get active now.

Good luck, and please keep us posted.
Burt

[sheryl]

Good luck Felix! Hope your appt goes well. It sounds as if you are from the Southern states, I am from SC. I currently do not see a HCM specialist. I don't think there is a HCM specialist in SC. If anyone knows of one pls let me know. My local cardiologist is sending me to MUSC in 2 weeks to discuss Alcohol Ablation. I am obstructed and having some problems. Any info would be appreciated.

[shirleymahoney]

Burt

You can say that again, it is hard to find a good doctor to treat this disease and i'm living proof, i told these doctors here i was checked by an HCM specialist and if he says i need a Transplant then i do, i would rather take the word of a doctor that treats this disease day in day out then one that sees a case every now and again, i'm not an easy case from what i have been told my tests doesn't reflected how i feel, in other words they don't look as bad as i feel, they can't get over how short of breath i get oh well my break is over trying to get this place cleaned up being my dad will be here tomorrow

Shirley

[Burton Borrok]

Hi Felix,
I don’t think your being fickle, - just that you demand a certain degree of HCM competence from your cardiologist, and that isn’t always the easiest thing to find. Personally I’m on my second and sixth cardiologists, and hoping this combination works.

Number one performed my fourth angioplasty which for one reason or another was a disaster. He never diagnosed my HCM, and had me on an ACE inhibitor.
Number two diagnosed my HOCM, and treated it properly, but then left the group and was no longer covered by my insurance. I still see him (out of the plan), but he can not order various tests or treat me in-hospital, unless I want to spend tens of thousands of dollars each time I go to the hospital.
Number three thought you could contract HCM from high blood pressure and other causes. He was not even aware that it was a genetic disease.
Number four took six months to convince himself that there was nothing wrong with my heart after all.
Number five was an HCM specialist, but was out-of-state and felt treating me long distance was not good practice.
Number six was brought in at the recommendation of number two, and when he treated me in-hospital ran all the proper tests and made all the proper moves. I will probably see him soon again as I want him to work closely with number two, who I also wish to keep.

So you see my friend, you are by no means alone. I think we all get ourselves educated to insure we get the best care there is, and unfortunately there aren’t a whole lot of cardiologists whom I would call fully HCM competent. Good luck with your latest attempt. Let us know how it pans out. (You might just strike a high grade nugget.)
Burt

[mtlieb]

Hiya Felix,

Good luck with the new doctor! I sincerely hope that everything goes smoothly with this one and that your expectations are exceeded my friend.

I try not to be too hard on the folks that use the term IHSS... i've heard one of my specialists let it slip out on occasion, and in fact it is still listed on the Cleveland Clinic website as a term used to denote HCM with obstruction. It's dated sure, but so is HOCM which my local cardio uses all the time (and pronounces hoe-kum).

P.S. I really MISS my old Datsun... it just sounds so much sportier to me than Nissan.

Take care,

Jim

[Reenie]

Good luck, Felix. Let us know how it goes.

Reenie

[felixdacat]

Found it

Thanks to Pam's proper spelling, I was able to find Lisa's post from last July.

"Four simple letters...
I H S S

I - It is NOT idiopathic - we know where it comes from!
H - Yes there is hypertrophy
S - Subaortic - Well not all thickness is located in that region - some is apical
S - Stenosis - NOT all HCM pts have stenosis

The proper name is Hypertrophic Cardiomyopathy (with obstruction - in some cases)"

[shirleymahoney]

Yep that is it Felix

Hope you have a nice visit with your new doc


Shirley

[Pam Alexson]

Idiopathic Hypertrophic Subaortic Stenosis= Don't know where it came from / thickened / beneath the aorta ( at the opening) / closed in, narrowed, obstructed.

That's it in a nut shell. Good luck with your visit.

PS Lisa is away so I jumped in here for her.

Pam

[felixdacat]

Well, I’m trying a new cardiologist on Monday.
I went with a different strategy this time. Lisa has always spoken very highly of a local pediatric cardiologist in the Atlanta area. I sent him a letter with a request for a recommendation of someone I can work with. In a very short amount of time he got back in touch with me with two suggestions. We will see.
This will be cardiologist #4 here in Atlanta. Here’s a recap.
1- This Doctor diagnosed me having HCM but did not suggest any further treatment or medications. Just follow up. 6 months later he stopped taking my insurance.
2- She advised me to start medication but as it turns out, she only had me on very small doses of beta-blockers. Gave me a big push towards an Alcohol Ablation which only motivated me to do a web search which led to the classic “Call Lisa”. She was very dubious about forwarding my records to one of the HCM clinics.
3- I thought I had it made when the Doctors at NEMC knew a Cardiologist in Atlanta who had actually worked for Dr. Barry Maron. But one month before my Myectomy, I went to see him for the first time so he would be prepared for my follow up care. His office actually tried to talk me out of a Myectomy because they had a guy down the hall that did Ablations.

So in preparation for my appointment, I contacted the last cardiologist’s office to have my records sent to the new Doctor. For some reason, they sent them to my home.
I noticed that this Doctor, who had worked with the world’s leading expert on HCM, still referred to our condition as IHSS. That’s like going to a dealership to buy a Maxima and the salesperson keeps calling it a Datsun.
Hey Lisa, if you’re reading this, could you please post again your great explanation of what IHSS stands for and how not one of those letters stands for something appropriate. I would love to be fully armed when I meet this Cardiologist on Monday.
Of course he’s going to get an earful about the mistreatment of HCM patients in general.
I’ll let everyone know how its went.