hope it's worth the wait...

[drumfiend]

I just set an appt. with Dr Abraham at Johns-Hopkins. The next available was Feb. 26. I will be calling my new best friend, Lisa, to get educated on the terminology before then. I am actually looking forward to all the tests and stuff just so I can finally know exactly where I am with HCM...:cool:

[mbcube]

Wow - thats a long wait, but one thats worth it. Yes, Lisa is everyone's new BFF. She'll help with what questions to ask & by then you have gained a ton of knowledge here that will also help. Welcome & good luck!

[drumfiend]

Got a call today. They can see me Dec. 2. Hopefully Lisa is up to taking my call before then...:D

[sassydeborah]

Glad to hear you get to see Dr Abraham sooner! Once I decide to do anything I hate to wait. Good luck. Hope you get good news.

[shirleymahoney]

Ok son I will tell your father and I will mark the calander so I can go with you, did you ever find out what was on your EKG that the tech couldn't talk to you about? just wondering
Mom

[drumfiend]

just checked in to the hotel. loking forward to the day tomorrow. I will let everyone know how it goes...

[Largehearted]

Good luck!

Leon

[Pam Alexson]

Double good luck...Pam

[drumfiend]

I just got home and settled. A weight has been lifted. Thank you Lisa, for getting me on track with THE MAN, Doc Abraham. The guy is amazing. He sat down and actually drew a picture and explained everything and took the time to answer all the questions we had. The whole experience was very good. I had a signal average echo. Then it was off to the Echo lab. I explained that I just had my ICD replaced and needed it to be interrogated before any kind of stress test. My last one led to a shock on the treadmill.
They were totally cool and had someone come down and set me at ease. They can read it from across the room. COOL!!! First was an hour long nap/echo. Then it was the stress echo. They stopped me at 200 bpm. I was willing to keep going but... Next, I had a nitro test??? Some kind of smelling salts waved in under my nose while getting an echo. Finally, a contrast echo.
Sooooo
I have a back wall measurement of 2.6cm. Not great but not horrible. My gradient after exercise was 98. Again, not great, but controllable with meds. He wants to start me on 25mg of Toprol at night. If I tolerate that after a week, I will bump up to 50mg. If I cannot tolerate Toprol, I will try .... I can't remember... started with a 'D' and would need a three day hospital stay.
All in all, I am pleased with the visit. The drive was not so great but...

IT WAS TOTALLY WORTH IT!!!!
Thanks again Lisa.
Abd thanks to all of you guys for the support....

[Cynaburst]

Glad your visit went well. The drug that starts with a D is probably Disopyramide, brand name, Norpace. It sounds like you have a significant outflow tract gradient, and these drugs may help reduce the gradient and help you feel better.

I personally took both beta blockers and Norpace for several years until they stopped helping and I needed a myectomy. I still take a pretty hefty dose of Toprol (175 mg.) but don't take the Norpace anymore. You can take Toprol up to amounts as high as 300 or 400 mg. and sometimes increasing helps treat the symptoms better.

[drumfiend]

That was it. Thanks. He wants to try those meds first. He said the myectomy/ablation would be further down the road if the meds were not tolerated. After what I saw when my Mother hed her myectomy, no thanks. She was in a lot of pain for a pretty long time. Day by day...

[mbcube]

Glad you got a good evaluation and you like your doctor! Starting on meds is a good thing, and it sounds as though you need to. For some, its not easy to evaluate if its working or not, but give it an honest try. Try to keep a weekly log & compare things like alertness, ability to exercise/stairs, heart palps/beating, sleeping, appetite, weight. This can be helpful as we tend to forget the little things that affect us. Good Luck!

[MariaB]

Glad to hear your visit went well and that you are in good hands !! A good Doc makes all the difference !
I had the "nitro test". UGH It was the last test of the day so I thought...oh, no big deal...this wont take long and then I can leave. Man, it was awful !!!! Thank God for the awesome Nurses with me. I had a headache the entire way home (4 hrs) Luckily I passed with flying colors.
Anyway, good for you ! Happy to hear you are being taken care of !!!
peace
Mariab