heart beating fast episodes and hcm parts of life

[dreamcatchinglady]

Hi all I was at work today and I all of a sudden felt my heart going really fast like palpitations. I found it hard to talk and I was also short of breath and very dizzy couldn't concentrate on anything. I was told to go sit out back for a while which I did and I went very pale and white. I didn't faint or anything But I didn't feel well at all very bad chest pain and Just not well at all. I did call my Local cardiologist Today and they said just keep monitoring things and if I get worse go to the er. For the first time last night I had problems breathing and had to prop my head up on many pillows. I didn't sleep very much last night nonetheless. How frustrating.
I went to Brigham and women's to my special cardiologist last week for a stress test and to check on things. I have had chest pain for a while now and he told me some difficult news. I am just praying for the best. He told me I have to hope for medical advancement and technology but that someday I may have to have a heart transplant . I am hoping not. I have 3 family members that have had transplants including my half brother, my dad and my cousin. My cousin passed away after the procedure. I just got my icd last year june 17 2003 and It has been an aid and help. I wish I was able to attend the hcm conference this year to learn more about it Because I was born with it but I can't due to work. Thanks for all your input and this site. God bless everyone

[Laoshur]

Re: heart beating fast episodes and hcm parts of life

Dear Kimberly,

God bless you, too! We all need it.

I don't know anything about Brigham and Womens with respect to HCM, but it sounds like you need to see one of the cardiologists who specializes in HCM as soon as possible. Your family experiences with HCM seem unusually extreme to me, but I am no expert. I strongly recommend that you talk with Lisa. She is at a conference right now, I think, but she will be a big help to you, I think. I suggest you send her a private message giving her your details and asking for a time that was mutually acceptable to talk.

Your symptoms do not sound too surprising, but they are disturbing, especially having to prop your head so high at night to breathe sounds bad to me. I only had to do that once for a few nights a couple of months ago.

What kind of work do you do? Somehow being told to "go sit out back for awhile" sounds like you must work on your feet most of the time. Is that the case? Maybe a job that requires less activity would be helpful.

Please get some help from an expert in this field!
Rhoda

[Pam Alexson]

Re: heart beating fast episodes and hcm parts of life

Kimberly like Rhoda said , blessings to you also. Have you ever been in a-fib? I am not saying this is what it was but sounds suspiciously familiar symptomaticly speaking. Unlike Rhoda , I do have experience at the hospital you mentioned. I was diagnosed there in 2000, and had my AICD implanted there in March of 2001. I also was told by my "special cardiologist " there, that I would have to wait for technology as the current interventions were not for my heart . He said he was sorry and wished there was something more that could be done for me and walked out the door. He did this 3 times at 3 separate appointments. The last time he said it, Feb. 2003, was the last time he ever saw me . With Lisa's help I got right into NEMC for a second ( actually a 3rd ) opinion , but anyway another set of eyes . After just an initial visit I was told they believed they could help me . I had a successfull myectomy last Oct. 2003. No it is not a cure for HCM but the symptoms are confined to that of non - obstructive HCM with a 0-20mm gradient(from a former240 mm gradient) a very stiff left ventricle and CHF. After that initial visit I was informed at NEMC that I would have to make a decision at some point as to which facility would follow me for the HCM , the choice came easy. I had much help back with my "special cardiologist" but the end of the options came too quick and I was going to die or have to have a transplant if I lasted long enough to get one and if one even became available. I asked 1 question at NEMC to help me with my decision that day . It was , "Do you think my doctor at the other facility would ever have referred me to NEMC for this look see?" All I had to do was look into the eyes of the HCM specialists at NEMC to know I was making the right decision for me . I never went back and I do not regret any of my decisions. With your life you can not leave any stone unturned . Please consider another opinion just to be sure. Best Wishes to you. Pam

[Burton Borrok]

Re: heart beating fast episodes and hcm parts of life

Dear Kimberly Dream Catcher Lady Plaster,
You said in your posting that you went to Brigham and Women's hospital last week to see your special cardiologist. Well, that puts you in or around Boston, home of one of the top three HCM specialty hospitals in the country – namely Tufts – New England Medical Center (NEMC). The other two are the Cleveland Clinic in Ohio and the Mayo Clinic in Rochester, Minnesota. They are the cutting edge on the care and feeding of HCM.

I would strongly advise you to gather all your information and test results and go to the NEMC for a second opinion. We’re talking all the chips on the table here – (OK so I live a stone’s throw from the Las Vegas Strip, but still, it IS a big deal).

This would be best accomplished by sending Lisa a Private Message (PM) and explaining your situation, and arrange to talk with her. She can help quite a bit, and magically clear the way for you. She’s off in San Francisco at the moment, but should be returning home in a few days.

Just one more thing. You said you went to sit out back for a while, where you went very pale. By all means if you suffer another episode like that, either sit or lie down and relax for awhile, until you feel better - - - but don’t go anyplace, or stay, alone. If you we’re to pass out or need emergency help and you were alone you could be in even bigger trouble. Also, make your cell phone your buddy. I would much prefer to feel embarrassed when the paramedics showed up and I was feeling better, then have it the other way around.

Take care, and please keep us posted.
Burt

[felixdacat]

Re: heart beating fast episodes and hcm parts of life

Hi Kimberly,

First let me tell you how sorry I am that you have HCM and are experiencing these symptoms.
I would like to suggest that you start reading these boards. Go back a long ways, really spend a few hours absorbing the material here. You will of course, get a sense that you are far from being alone. But what you will also start understanding is that because this is such a rare condition, there is alot of mis-information out there. Even from highly qualified, intelligent cardiologists.
I will concurr with Pam and Burton that you should take advantage of your location, and set up an appointment with NEMC. I was evaluated there last December and had my surgery in February, despite living in Atlanta. Drs Udelson and Maron are two of this countries leading experts with HCM, and finding an expert can be difficult.
Although a heart transplant is one of the procedures that is possible with HCM, it is by far the very last option. There are drug therapies, and surgical procedures that must be tried before you even go down that road (although with HCM, everyone can be different).
BTW, the other two HCM clinics are the Cleveland Center and the Mayo Clinic.
I wish you could find a way to come down to Jersey in two weeks. We would love to meet you and help you. And of course, the number one sentence on these boards is "Give Lisa a call". She is in the office Tuesdays & Thursdays. The number is on the bottom of each page. You don't know how good you can feel about having HCM, until you talk to Lisa.

[Lisa Salberg]

Re: heart beating fast episodes and hcm parts of life

Kimberly, It sounds like these are all new symptoms for you, and if you had that much problem sleeping last nite, you've "watched it " long enough. Call your doctor back and insist on being seen to check out that rhythm. Best wishes, please keep us posted. Linda

[Lisa Salberg]

Re: heart beating fast episodes and hcm parts of life

This is Linda, using Lisa's laptop, for that last post. Guess I should have logged on myself, but I'm not the most computer literate Linda