Tuft's Trip

[Bob in Texas]

Well seen Dr. Maron today at Tuft's. He was not able to see the obstruction from their tests and I was perplexed since the test results from Texas show an obstruction. He ordered a catherization procedure for the morning to verify my condition - obstructive or non obstructive, he stated this test will let us know 100% for sure. He indicated that I have severe scarring on my septal wall and was very concerned about it. Since medication is the only option I have no other choices. We are also talking about an ICD being placed next week. Dr. Maron was extremely professional and he does know his stuff. This surgey thing is blowing my mind but will be resolved shortly.

Bob

[mbcube]

Bob - Thanks for the update. All of us in HCM-land appreciate your updating us. Don't you feel much better just knowing that an expert has seen you?

[Nellah17]

Bob,

So glad to see your update! I'm somewhat new to the board, but I can definitely identify with the confusion that sometimes comes when hearing conflicting diagnosis info. The best thing, though, is that you're with a specialist. It has made all the difference in the world for me (imagine, one cardiologist told me I was "fine" and gave me antacids) and I know that it will for you. Can't wait for the next update, and you're in my prayers. I know that everything will work out for the best.

[Bob in Texas]

Well had my catherization today and it verified I have an obstruction. Dr. Maron is great I saw him several times throughout the day while waiting for my procedure. That guy is on the run all the time and takes time for everyone. What really impressed me, the first day, was he came into the waiting to introduce himself prior to our meeting. Never had a doctor done that before. He indicated that based on this test I am a candidate for surgery. I see him Friday to discuss all my options. I am looking at an ICD and the myectomy surgery decision looks like it will be up to me based on my symptoms. He also took blood for my genetic testing. I have several decisions to make in the next few days. These HCM Centers are the way to go for sure.

Bob

[LindaSo]

Bob,
Glad you got a definitive answer today. Now, aren't you glad you weren't pushed into something? HCM Centers are a cut above. Keep us posted.
Linda

[mbcube]

Bob- Regardless of your decision you have to make, glad your getting expert care. You're in good hands there. And BTW Very suprized to see you posting right after a cath! If you recover that well, any surgery should be a breeze for you!

[Bruce42]

Bob,

Very glad to see you're getting quality care. Best of luck as you proceed down this road.

Bruce

[Pam Alexson]

Glad to hear all the answers are clear now and you are in great hands. Dr Maron is certainly a sweetie of a doctor and makes all his patients feel as special as they are and we are now aren't we! It is a pleasant feeling to see a doctor really care and be truly invested in the lives of his patients.
Now .. time for you thought filled process of decisions. ..good luck and we are here for you.

Pam

[Bob in Texas]

Help....well woke up from the Cath today and feel good. Has anybody in their experiences with HCM heard of an obstruction showing on a test, not showing and then appear again. Like I said the Cath verified I have an obstruction and Surgery is an option. Any input is appreciated. Also any input on an ICD is appreciated, such as restrictions, the pros and cons.

Thanks
Bob

[mandksiders]

Hi Bob,
I have no experience on the test not showing and then showing an obstruction because as of right now I have no obstruction..but I will say this about having an ICD. I got one a week after an HCM specialist officially diagnosed my HCM a less than a year ago. I do not regret having it. It has given me a tremendous peace of mind. I have no restrictions with it with the exception of after the first month of placement. I jog, I work out regularly, I play with my kids and I will go back to teaching in August with it. I feel like it has given me a freedom because the possibility of sudden cardiac arrest/death is no longer looming in the back of my mind like it was after I was diagnosed. I know some people feel it sucks having a foreign object inside their bodies, but I am not one of those people- I felt it sucked not having one and being constantly scared I would have a sudden cardiac arrest and leave my children prematurely. It's just been a complete blessing for me.

Just my two cents on an ICD.

-Kaye

[LindaSo]

Like Kaye, my obstruction was never illusive. As for my ICD, I LOVE it. No, really I do. I'm very happy that if my device gives therapy, it is because the alternative is much, much worse. I plan on being around for another 25 years or so. Go to the ICD section and let your fingers do the walking. You will find your question asked numerous times and you will also find numerous answers, such as restrictions, pro's and con's.

[Pam Alexson]

I think Bucky--real name Doug from Nevada had been told he was not obstructed and then went to CC Center and they found him obstructed and he had a myectomy a a result.

I know for myself the obstruction was not so mystifying ( actually that's not correct-- I had had several echos and nuclear scan back home here by a cardiologist and there was "nothing wrong "with my heart.) Later with same tests in hand and their own as well... just whether I was a candidate for myectomy or not due to the location and size of obstruction was the big issue. After their own tests they decided right away I needed an AICD and I had it done.-- no regrets either. AND of course the myectomy for relief of some of the worst symptoms of my HCM.

[Cynaburst]

My obstruction took a stress test to show its true colors...I had a minor obstruction with resting echo, but it was much greater during exercise. The myectomy really helped my symptoms. I think that Doug (Bucky) who had a myectomy recently after having a hard time showing that he was obstructed is a little more on the fence. He is still not feeling that good.

[Bob in Texas]

Thanks for all the responses. Has anyone out there had a myectomy on an obstruction that was hard to verify. Mine took a catherization procedure to verify. Any input is appreciated. Well I have been at Tuft's in Boston this whole week and they ran me through a bunch of tests. They are very thorough for sure. I should get all my options on Monday when I see the Surgeon and Doctor Maron. A long week for sure.


Bob

[Pam Alexson]

You must be very wiery Bob.
I think that is what many of us are saying.. that it is not always a slam dunk and one test reveals the whole picture. Heck it took a catheterization to verify that I even had HCM to some of the experts that were looking at me for SEVERAL months.. that was after ALL the other tests. HCM is rather fickle and takes on many faces. NOW you know why we wanted you to go to an HCM center of excellence from the get go. It is a challenge oftentimes even for the best of them.

[Bob in Texas]

Pam, thanks for the words of support in helping me understand this disease. I have learned from my symptoms that it comes as it pleases which baffles me and also medical professionals. I have been very lucky in my diagnosis since my first Cardiologist labeled me HCM from the first day he saw me. I could not imagine going for years with SOB, dizziness and near faintness and being told it is in your head. That has to take a psychological toll on anyone. The HCM Association is clearly needed to ensure all of our voices are heard.

Back for another test this morning. See all the doctors Monday to go over all my options. Tired and worn out, but well worth the trip.

Bob