Tufts on Monday Questions

[wkevind]

Well Monday is my appointment with Dr Maron, I've been looking forward to this for a while so I thought I would write a list of questions.

So far I wrote:
1. Am I OK (did they screw up my myectomy)
2. Will I be OK (am I going to deteriorate rapidly again)

After that I froze up and I realized I have no idea what specifically to ask him

On Mon. morning I am scheduled for a stress echo followed by an MRI and then a sit down with Dr Maron and I want to get the most out of this day of activities. So I don't want to just stare blankly and blurt "am I gonna die?"

Any suggestions would be helpful.

Kevin

[THW]

Kevin,
I can't remember where you're at in your HCM health without going back and looking at previous posts, so here are a few off the top of my head....

1) any and all symptoms you have, when they occur, what precipitates them, how often, when they began, how severe, how long they last....
2) what meds you take or have taken and what effects or side effects they have, or how you tolerate(d) them
3) what you're physically able to do and not do
4) ask what your measurements (thickness) are, what your gradient is, results of the ekg, results of the stress echo, results of the cardiac MRI / any fibrosis
5) tell him of your family history, especially any sudden cardiac arrests, sudden deaths
6) any risk factors for needing an ICD
7) if you haven't already been involved in genetic testing, you might want to discuss genetic testing with him

That's just off the top of my head. I'm sure others will chime in and you'll probably think of more as you get closer, too.

Keep us updated on how it goes.
Theresa

[wkevind]

I guess that is part of the issue with questions, I feel fine and have very few symptoms now, except for sternum healing which I expect to last a while longer.
My myectomy and mitral valve replacement were in late May/ early June
and the main reason for the appointment...to see an HCM specialist and for reassurance that I really am OK. I want someone to establish the baseline and be the team leader for my future HCM care.
I am taking all suggestions into consideration.
Kevin

[EmilysMom]

First of all, you will like Dr. Maron, and he will assist you in getting the information you need.

If you blurt out, "Am I gonna die?" I predict, he will say...
"Soooooo, Kevin, Let's talk about that."

Find out how he thinks your myectomy worked for you.
How much scarring is shown on the MRI, and how your heart is functioning now.
What he thinks about an ICD.
Your ejection fraction and gradient.
What you should focus on going forward.
What meds you are on, and if anything should change.

If you want him to be the team leader of your HCM care, tell him that.

Good luck.

[EmilyOrange]

Well, we all know that you haven't met Dr. Maron because if you had you would not be nervous. I should know... I am the president of his fan club.. He is great. If you blurted out, "Am I going to die?" he would say either what my mom said, or, my personal favorite, "So, I guess the question is, when are you going to die" and say something true, but optimistic. Let me tell you if there was anyone I could choose as my HCM team leader it would be Dr. Maron. It's always a good sign when you meet your doctor while having a laughing fit. That is my story. Yours will be all right eventually.

Good luck

Emily

[Pam Alexson]

I think he will say as opposed to talking about dying, "Kevin, lets see what we can do to keep you going a long time into the future."
He is rather a diplomat but a very honest one.
I have a tendency to blurt out these kind of fatalistic scenarios at times( so you are not alone and he has heard it all before). He always gets me back on tract and puts my fears at ease. I have had a very complex and at times complicated HCM history and he never falters at the new challenge or twist in the road... steady at the helm with captain Marty Maron.

You are going to have a great visit with him I predict.

Best wishes... my visit is next monday the 27th with him. Missed you by one week.

Pam

[mbcube]

Kevin - Try to keep the issues separate if at all possible, the Previous Myectomy, the Valve job & HCM. then deal with each individually and hopefully they interrelate. Not sure if this is helpful, but it might be easier to keep things focused. Good luck & looking forward to the report~

[Janet McClure]

My son and I just met with Dr. Martin Maron in Tufts this past Tuesday. He spent almost three hours with us. It meant so much to me for him to do that. He is great and I highly recommend. We too are HUGE HUGE fans of Dr. Maron.

Good luck! Janet

[wkevind]

Thanks all, I'm looking forward to meeting Dr "Marty"
I have a friend that lives just south of Boston and I'll be visiting with he and his wife for the weekend (how convenient) and heading into Tufts for my 9:30AM appointment.
Stress echo and MRI. I'll get to see if my tattoos melt or my sternum wires come flying out of my chest;)
One thing I am sure of ...I will not be seeing Chihuahua movies when I'm done.

Kevin

[wkevind]

Well now I can say "been there done that"
The trip to Boston was uneventful except that we found the GPS should be set to "fastest time" instead of "shortest distance". Shortest distance adds 1hr of driving time.
Stayed with friends in Middleboro and took the T into South Station. I'm a country boy and driving in the city makes me crazy & paying $20-$30 for parking makes me twitch.
We arrived a few minutes early and reported to the echo lab. Had the most thorough echo ever. I had been told that I was going to have a stress echo but the echo tech just said "I'll go over this with Dr. Maron and he'll be in to speak with you soon". I thought "Oh-oh", my appointment with Dr Maron was not scheduled 'till 1:30, after all the tests, I was immediately a glass is half empty kinda guy.
Dr Maron was in surgery so I was sent on to the MRI area filled out the paper work and started hearing my name being talked (indistinguishably) about at the nurses station.(Oh-oh)
I was called into the changing area to put on my peek a boo gown but was stopped by the nurse. It turns out that the surgeon that did my myectomy left the pace./ defib. wires in place "just in case" and the MRI tech and Dr Maron were afraid they might cook me once the wires heated up (Oh-oh) No MRI.
We then met with Dr Maron about a half hour later, nice guy, and I asked my questions and discussed my expectations. He explained what the echo revealed and what it didn't.
The general prognosis- "the results of my surgery were very good"
My interpretation- the surgeon that did my myectomy did a "belt and suspenders" surgery- He removed about 1.75 cm thickness of septum obstruction and replaced the mitral valve Dr Marons interpretation Either one would have relieved my symptoms and not seeing the "before" could not assess the need for either.
So I had hopped for a YIPEE but came away with a yipee which is completely better than an OH_OH
Kevin