Need a little hope!!

[chrissy21]

I went to see the doctor yesturday, and they are going to try to see if the could give me medication or inject a serum to reduce the size of the mucle.. I am always tired and i have hedaches all the time.. So i hope that they could find something to help me feel a little better!! I just pray and hope that i get some good news soon..

I also want to thank everyone for the support and words of courage, I feel much better knowing that i am not alone in this..

I wish everyone a great day!!!
chrissy

[Reenie]

Chrissy, you might want to see about trying to see a specialist about your condition. The reduction of the muscle by injecting alcohol (called an alcohol ablation) isn't usually recommended for someone your age. It could cause more harm than good. However, if medicines aren't enough, there is another surgery that might make you feel loads better. It's called myectomy. It's scary, but would probably be a better route for you to take. A specialist could tell you all the pros and cons of each procedure.

Reenie

[purple_ness1]

heya

hope things go well with you and your doctor
take care

*margi*

[tommysgirl]

Chrissy,
I know how hard it is to feel badly everyday. Just the hope of feeling a little better makes us smile. I do caution you though. We made the mistake of believing our first physician and went for an ablasion. He ended up trusting this doc and had two ablasions. He ended up in sugery anyway. Please consider seeing a true HCM Specialsit before making your decision. I don't want to see you make the same mistake we did. Being evaluated by a true HCM Specialist can save you a lot of time, unnecessary procedures, and continued misery. I will pray for you and that you get the best advice for your condition.

God Bless!
Sherry

[Sarah]

i don't want to rain on the parade, but there isn't any serum or medication that reduces the size of the heart muscle. there are medications that can reduce your symptoms and there is some evidence that being on a beta-blocker for a very long (eg ten years) time may reduce the septal wall in some people, but that is not a short term solution obviously. beta-blockers (tenormin, toprol, corgard, etc) are the drug of choice for HCM and can also reduce your headaches (today, not in ten years).

if by injection you mean the alcohol ablation, then i have to concur with everyone that while the doctors tend to make it sound easy and a cure --it is not that easy and if you do get it done, you should have it done by someone who does A LOT of them, like the Mayo or Cleveland Clinics or the New England Medical Center, etc etc.

the HCMA office can help you find an HCM specialist; the contact info is at the bottom of every web page.

take care,

s

[Lisa Salberg]

To simply reduce the thickness of the muscle does not change the fact that your genetics cause you heart to have myocardial disarray. The very problem that causes HCM is within your genes. Medications help our heart relax better, reduction of gradients (myectomy - alcohol ablation) help reduce obstruction, medications can be used to help thin our blood if we have A-fib or artificial valves and other meds can be used to help reduce arrythmias. We use devices to alter the rythm of our hearts or remind (like that one) our hearts to get back in line! - (ICDs)
In a nut shell these are our options more or less.

Someday - we may have more - for now this is it. I have been fighting this battle for 25 years and frankly I am doing very well. Yes I have symptoms - infact last night - and the night before my heart was so our or wack it woke me up - I was having PVC's every 5th beat that were very strong.

What you were looking for is hope - I can tell you that there is more than a little hope there is a great deal of hope for a rather normal and happy life with HCM.

Best wishes,
Lisa

[Sarah]

oooh. reading lisa's post reminded me that i should have addressed the rest of your post.

lisa is correct (as always)--the vast majority of HCMers live a full life span and do quite well. There will be ups and downs and everything in between but it is livable.

we all get down from time to time, but the bottom line is that you can still do a lot with what you have.

take care and let us know how you are doing.

s

[marlenefincherRN]

Hello I am new ..very new only a few moments old smiles//..But I wanted you to know I come from a family who is plagued with this disease..and we each have good days and bad days...I stay in touch with my sister each day to see how she is doing ...I have been to pacemakerclub.com and implantable.com...but to find this site has made me very happy..everytime you can talk to someone who truely knows how you feel and as walked in your shoes ...it helps...knowing that there is someone out there who truely can listen when your having a bad day and completely understand for me truely helps lift my spirits....I hope you get to feeling better and I wanted to say hi to everyone....smiles and waves

[Reenie]

Hi Marlene. Glad to have you hear and glad we've been a good place for you to come to be understood. I hope to hear more from you.

Reenie

[chrissy21]

Thank you everybody, I understand everything you are telling me, a specialist from toronto is coming to see me on june 2nd so i will know more than.. I;m happy to hear that i can live a long life , because someday i feel like its the end!! but i have alot of family support and everyday when i see my soon i get the strengh to get up and have a good day!! I will inform you all when i get the news.

And i will pray for you all .. Have a great day!!!!