Working out again, shortness of breath, chest and pain down left arm

No rehab for me

by CMC - 2019-10-18 01:14:29

Thank you. I'm happy you got your life back. Most people don't understand what our life was like before surgery and how wonderful we eventually feel and excited we are to live life. I was told I would be fine and check in with the device nurse once more before going to yearly appointments. About 20-30 minutes ago I noticed my thighs and going a little below my knees had the pattern of a leopard. Since the first time I saw the doctor I don't feel I was not taken seriously.

You know best

by CMH22567 - 2019-10-18 04:08:22

Im sorry the nurse said that to you. It is so annoying and comments like that lowers our confidence. I was told many times that my pacemaker was fine as  it had not recorded any events. It was not until I saw an EP that he shows me the settings for self checking, and monitoring were turned off. The pacemaker may have been firing as it was expected to. But my natural heart was not responding as expected. My pulse was so weak it lowered blood pressure I developed swollen ankles and feet and got out of rythem, I felt like I was going into heart failure. Keep asking questions and write everything down until you are satisfied. My settings are now right, my notifications are turned on, my heart is now fine. 

See an experienced EP doc - and perhaps a cardiologist

by crustyg - 2019-10-18 07:45:39

In the rude vernacular, you've not been talking to the Organ Grinder but someone else instead.

If you had a diagnosis of Vasovagal syncope and then you throw in cardiomyopathy, then you've probably got more going on than your description suggests.  A lot depends on how bad the cardiomyopathy is and the underlying cause.

IMHO you need to see a proper EP doc and cardiologist to get a better understanding of exactly what's going on, diagnosis and prognosis and get your PM set for your requirements.

It's your body, your heart and you need to be your own advocate: polite, firmly insistent and don't take 'No' for an answer to your questions.

You're not making it up.

by Gotrhythm - 2019-10-18 16:38:27

I've been in your shoes. My symptoms were never discounted quite so blatantly, but I'lll never forget the day I realized my cardiologist did not know what was wrong. Rather than admit her ignorance, and refer me to an EP, it was easier for her to imply I was a nutcase, and not reallly worth her time.

Women's heart issues don't look the same as men's. You're not the first woman and you won't be the last to be told her chest pain was "psychological."

That nurse shouldn't have said that to you. But her opinion doesn't really matter. What matters is that you do have a problem. And it is not being dealt with--or even taken seriously where you are being followed.

First of all, you need to know what your doctor thinks.

You are much younger than the average cardiology patient.  You probably haven't had much experience dealing with doctors and none at all in needing to understand complex medical conditions.  If I were you, I would certainly want to know exactly what kind of "cardiomyopathy" I had, and what treatment if any there was. I'd ceratinly want to know if there was anything I could do to improve it, or keep it from getting worse.

I'd want to know exactly what about the cardiomyopathy made my heart rely more on the pacemaker. In my experience few caridologists will volunteer any information I don't explicitly ask for. That means you have to learn to ask specific questions.

Listen to Crustyg. Do what he says. He's one of our most knowledgable members.

If you aren't seeing an EP you should be. And if you're not being helped there, go somewhere else, Even if you have to travel, find someone who specializes in your cardiomyopathy.

I would only add, do not go to any appointment (even pacemaker checks) alone. Take someone you trust with you. Have your questions written out. And, remember: You have a phone that records and takes pictures. Use it to make your own copy of records and also to let you "hear" what the doctor says accurately.