Age of diagnosis ...

[Reenie]

Re: Age of diagnosis ...

Hi again. The cardiolite test is basically when they use nuclear medicine along with a treadmill test to see how much blood the heart gets throughout the muscle during excercise as well as how you react during the treadmill test. Some of the things they will look at is your heart rhythm and rate and how your blood pressure responds to the excercise. This particular test is not uncommon with people with HCM.

What I was thinking when I posted that is that some doctors want to do electrophysiological tests, catheter tests, to check out the heart rhythm to see if they can tell if you're higher risk or not. That's the test that is often NOT a good predictor of sudden cardiac death in an HCM patient.

So far it sounds like you're on the right path. We're here any time you need us. Feel free to ask questions or just you can just talk if you want.

Reenie

[blimpie1226]

Re: Age of diagnosis ...

Reenie:

Thanks for the explanation on my upcoming test. That's pretty much what I THOUGHT the cardiolite test would be like. However, after reading your earlier post, I was beginning to think that there were other tests (more customized for HOCM) that I should be having instead of/prior to the cardiolite. Sounds like this test is a good "next step" for me.

By the way, I am already doing much better with the Toprol side effects than I was during my first week. The fatigue has pretty much subsided.

Thanks again.

[Janet]

Re: Age of diagnosis ...

I was diagnosed at 42, but my parents knew about IHSS 35 years ago when my brother was born with it at Children's Memorial in Chicago. He had a myectomy when he was 13 and died with a 4cm septum at age 23. I had an ICD put in 10-2002 and now my mom (64) was just diagnosed in 10-2003 and had an ICD put in also.

[Reenie]

Re: Age of diagnosis ...

Welcome Janet. We're glad you're here. We'd love to hear more from you.

Reenie

[Janet]

Re: Age of diagnosis ...

Dear Reenie:

Thanks for the words of welcome. Glad this group exists.

I made a mistake in my last post. I stated my brother was born at Childrens Memorial in Chicago, but I actually meant he was diagnosed there (I believe he was only a month old). There is or hopefully still is a plaque in his honor which was donated by all our family and friends upon his death.

Be well, Janet

[progers]

Re: Age of diagnosis ...

Hi everyone,

I was diagnosed at age 26 (I'm 34 now): I was surfing after a big party night and couldn't stop coughing and had trouble breathing for about half an hour. Eventually ended up at the cardiologists who diagnosed HOCM. I had no symptoms whatsoever before that, though I got sick in Indonesia (malaria I think) when I was 23 and the Indonesian doctor told me I had a 'strange heart sound' (murmur I suppose). No previous medical had picked up anything strange though. My brother has HOCM, but is asymtomatic: his children, aged 5 and 2 are so far ok with no sign, even on echo. Hopefully they will stay that way. No sudden death in the family either.

After diagnosis I remained pretty much symtom free until 2000 when I was again in Indonesia. Since then I've been on beta blockers: again, I was generally fine, though 6 weeks ago I started getting headaches, dizziness and trouble thinking - even at rest. Could be blood pressure related.

I'm determined to go on as normal as possible and will still surf when I feel good. Living in Australia means lots of time at the beach and in the water!

Best,

Paul

[Burton Borrok]

Re: Age of diagnosis ...

Hey Paul,
Thirty four and a University Prof. Way to go, good buddy. I’ll bet your Mama is proud of you.

You know, I have a dry cough when I lay down in bed. I think it’s from the drugs I (we) take. I wonder if anybody else gets that when changing positions. Didn’t have any coughing associated with my last HOCM attack that I can recall, but I was breathing like a steam calliope, had a tight chest, and dizzy – but that might have been the result of over-oxygenation. I do oxygenate well.

Glad to hear your feeling better, and having a great summer.
Best regards,
Burt

[progers]

Re: Age of diagnosis ...

Hi Burt,

Hope you are well. My coughing when I was diagnosed was due to pulmonary edema - it was blood I was coughing up! I've had that happen on half a dozen occassions over the last 8 years, but I've usually brought it on myself: no sleep, drinking too much and then getting up and exercizing. I've learned to not do that, so I haven't had an episode of pulmonary edema in years.

I am still getting the headaches, but I've been taking it easy and at least my head is a little clearer. I'm convinced all this is related to low blood pressure (I've got a 24 hour BP monitor on now). Will go camping and surfing on the Great Ocean Road here in Australia this weekend - anything to get away from the heat here in Melbourne. Really hot days make usually mean my blood pressure drops (due to vasodilation).

Hang in there and remember spring is just around the corner!

All the best,

Paul

[Reenie]

Re: Age of diagnosis ...

Hey Paul, remember we're in the midst of winter here! I have a whopping 15* F as I type! Enjoy your weekend but dont' overdo it.

Reenie

[progers]

Re: Age of diagnosis ...

Hi Reenie,

I will take it easy. Even though it is summer here, it will get cold when you guys are getting great weather! Could you believe I miss the seasons and snow - especially at Christmas when its hot here: just doesn't feel like Christmas!

Take care,

Paul

[Abbygirl2]

Re: Age of diagnosis ...

Hi, I was diagnosed at age 24. I hadn't been feeling well for a while. I had several EKG's done between ages 19 and 24. The Dr's always told me it was panic attacks. (Shortness of breath, dizziness, chest pain). Finally, something odd showed on the EKG after yet another trip to the ER and that led to my diagnosis. I am the only one with HOCM(so far) most family members have been checked-(all immediate family members have).
Both my sons(ages 11 and 3) have been checked-so far so good. I pray that my kids don't get this. Thanks
Abby

[Swanson]

Re: Age of diagnosis ...

I was 5 years old and was diagnosed because my heart stopped during surgery on my ear. I had chronic ear infections but they had not picked up a murmur before this that I know of. My mom told me that the poor surgeon came out of the operating room looking as white as a doctors coat.

[angall]

Re: Age of diagnosis ...

Hi eveyone
I just became a member, I am truly impressed by all the postings, concerns and emotions.
When I was born, 1952, the doctor told my mother that I was a blue baby and nothing could be done to help....just let her do whatever she can do. At 16 I would become SOB when climbing a flight of stairs. I was diagnosed as having rhumatic fever and was treated with antibiotics. At 17 I got married and became pregnant. I gave birth to a beautiful baby girl. In 1971 I had to go to the emergency room because of having horrible pain in my left side. The next day the doctor did emergency surgery and removed my gall bladder..he then detected a heart murmur. I was sent to cardiologist in Allentown, Pennsylvania where the discovered I had IHSS and needed surgery. I had one surgeon come into my room in the hospital and told me he was going to do the surgery there in Allentown. A few hours later my cardiologist came in and I told him I met the surgeon that was going to do my surgery. He said WHAT???? I told him and he said this man had never performed this type of surgery before and that he was making arrangements for me to go to NIH in Bethesda, MD. After a few weeks of tests at NIH they did the surgery. I had the best doctor in the world...Dr. Morrow, who, by the way, passed away from IHSS a few years later. I have been through a lot with giving birth to another child, a boy, losing that boy when he was 15, getting divorced, remarry, having an ablation, inplant of a pacemaker, going straight lined 4 times and moving to Minnesota where I became a patient at the MAYO Clinic in Rochester. They did tests in 2000 and discovered I had another obstruction and needed surgery again. I had the second surgery in Nov. of 2000 and had an ICD inplant. I am still working but now facing heart failure and severe fatique at times. I know I have an Angel looking over me from doctors pointing me in the right direction. I will forever be greatful.
Esther (Minnesota)

[Reenie]

Re: Age of diagnosis ...

Esther, your story is amazing. Thank you for sharing it with us. Welcome to the HCMA.

Reenie

[angall]

Re: Age of diagnosis ...

It was my pleasure to share some of my experiences. It helps to talk about them now and then and this seems like a group of people that will listen (read) and give their true opinion. I have heard that God will only give you as much as you can handle....and I'm still here...and sane...lol
Esther