How much sicker do I need to be?

Do I need to die before someone figures out how to fix me? I'm falling apart. I spent most of my day in afib and can barely function anymore. I have to save my energy for the times that I need to be all there. Just had another angio and it's normal. Could've told them that. They kicked me out of hospital with chest pain, in afib, wacked out on pain meds, and bleeding from every incision site & my nose because jerk drs gave me aspirin. I have a bleeding disorder. They told me nothing is wrong with you, go home. I'm a 38 year old woman with a family history of Lev-Lenegre and have gone from perfectly normal to barely there in 12 years. I've gone thru so many cardio drs that it's pathetic. Meds don't work that great and I'm ready to go to bed and stay there. I'm starting to forget how "normal" used to feel. Does anyone have anyone else have these problems and/or advice?

3 Comments

Cardiologists......

by Pookie - 2010-11-07 08:11:24

Hi :)

I am SO sorry to hear about what you are going through. I went through something quite similar but it wasn't heart related. I almost gave up, but finally found a doctor who actually listened and now I'm fine regarding that non-heart medical issue.

You say you've gone through so many cardiologists...have you ever been seen by an EP? I know that's probably a stupid question, but if you haven't been seen by that kind of heart doctor, that possibly could be your answer.

I don't know where you live, but have you thought about going to any of the 3 Mayo Clinics or John Hopkins or the Cleveland Clinic???

I think you need to have a very frank conversation with your current cardiologist and ask him to refer you to someone who can help you. Perhaps you could have your family doctor help you as well.

There is an answer out there, there is someone out there that can help you - the problem is finding that person.

Unfortunately, these days, many of us find ourselves having to be our own advocates, our own voices....we have to stand up for ourselves all alone....but do it!!! Perhaps someone in your family or some of your best friends can help find you a doctor.

Never ever ever give up hope. Make anger be your motivation.

Hugs,
Pookie

Wish I had Answers

by SMITTY - 2010-11-07 10:11:50

Hello Chloe,

Of course I have no answers, but do have a couple question. Do you have a pacemaker? What medications are you taking?

This is a most interesting illness because its most prominent symptom seems to be A-Fib, which is something many of us are plagued with. Not that I think all of us with A-Fib have Lev-Lenegre's Syndrome. I say interesting, yes interesting if you don't have it but if you do, then it probably rates as a catastrophe. I had never heard of Lev-Lenegre's Syndrome until I read your message. For those of you like me, here is one of the definition I saw.

"An acquired complete heart block due to idiopathic fibrosis and calcification of the electrical conduction system of the heart (His bundle, or bundle branches with corresponding conduction blocks). Both sexes affected; onset over 50 years of age. It is often described as senile or sclerodegenerative degeneration of the conduction system."

From where I sit, you need a doctor that specializes in the treatment of Lev-Lenegre's Syndrome and I'll bet not every cardiologist is capable. Have you searched the Internet for specialists in this field?

Good luck,

Smitty

=(

by aya - 2010-11-15 02:11:41

I know how you feel..Drs can make u feel like ur crazy and belittle u, when all ur doing is reacting to ur own body which you know very well..I will pray for u!!

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