Newly Diagnosed... start here!

[Lisa Salberg]

Hi all if you are newly diagnosed I encourage you to START here!

https://www.4hcm.org/hcma-your-first...ed/472355.html
http://www.youtube.com/watch?v=DQyGdW_xHFE

Please do not get too overwhelmed with the message board we know everyone with HCM is a little different and some of us have been through some tough battles... others are simply living with a diagnosis and little impact.

Take your time in reading and dont ever be shy... call the office anytime you have a question!

Best wishes
Lisa Salberg
HCMA_logo_small.jpg

[Aloken35]

Re: Newly Diagnosed... start here!

My son(now 13) was diagnosed at 12 in Sept, this year. I would like to thank you for the video about exercise you put on youtube. I have been playing heck trying to figure out how much to let my son do and your being able to talk while you exercise without having troubles made a lot of sense. He will begin light running/walking on Monday at the Fire station (so we can be close to a AED as a precaution. he isn't far enough along, I guess for the ICD) This site has kept me up several nights since I found it but it has been so informative and helpful. Thanks again.
April

Son with HCM

[Missy2436]

Re: Newly Diagnosed... start here!

Hello All,
My name is Marissa, and I am now 24, and I was diagnosed with HCM in 8/08. That was the toughest thing that I have ever had to face, especially for how active I am. In fact, I'm still trying to wrap my head around all this, and that it actually happened. I do consider myself lucky to have caught it before it was too late. I was fortunate to not have any restrictions as far as athletics/working out goes. I was given the opportunity to speak with those that had HCM at the time I was diagnosed, but I was too stubborn to accept the help. Now it's 4 years later, and I feel myself falling apart, and figured out that I do need to speak with those that have HCM, and how living your life as normal as possible is going. I am also hearing impaired, so that is another life changing thing that I have to face as well. My concern right now is that does this condition get worse as you get older? Also, having kids is a BIG issue right now for me. I did find out that I do hold the gene for HCM, so I know there's a good chance for the kids to inherit the gene as well. Before I was diagnosed I wanted kids for sure, but now I'm not sure. I'm kind of scared! I know when I did a stress test at the hospital, my blood pressure dropped right away, so I can only assume that the delivery process would be like that, or just have a bad outcome. I definitely do have some bad days, and sounds like some of you do as well. Just frustrating for how young I am, to be tired all the time! Thanks for letting me vent!

[LindaSo]

Re: Newly Diagnosed... start here!

Hi Marissa, you've come to the right place and we're happy you're hear. We are from all walks of life.....male, female, young, middle age, older age, with children, no children, married, single, divorced, relatives of HCMers and former HCMers who have been transplanted. So, I'm sure you will have responses to your thoughts and questions. Does this condition get worse as you get older? Not necessarily. Being treated at a Center of Excellence (U of Michigan is one) is recommended so that treatments are the best for you and your heart. We are all a bit different, but we all have HCM.
Welcome
Linda

[vlstump]

Re: Newly Diagnosed... start here!

My son is 17 and has been diagnosed with non-obstructive HCM. He is devastated because he is a football player. He was preparing to go to the Top Gun camp. Only the best in the nation are invited to attend. Im so very sad for him but am grateful we found out. He went in for a cold and cough mentioned that he had chest pain after a practice. The doc ran an EKG. We were scheduled to see the cardiologist within days. He did the Echo and found the thickening and his father had a congenital heart defect which they found when he was 47. He was killed in a car accident 8yrs ago. Im really scared for my son. He passed out after laying down for a while. When he stood up and walked several feet he just collapsed. Luckily I was right behind him I shook him and he came to really quickly. Ive already lost one son at 18 due to aspiration because he was severely disabled from a birth injury. I want to keep my son safe but since the diagnosis he has been defiant and doesn't really want to talk to me. I totally understand he's lost everything he's worked for the last 4yrs. He plays basketball too. Im just worried im going to lose him.

[JenniferG]

Re: Newly Diagnosed... start here!

Hi, I'm new to the forum, having recently been diagnosed with Apical Hypertrophic Cardiomyopathy. I am 61, (the new 31,) live in Queensland, Australia and have been healthy my whole life until recent years. I have scoliosis and just before my 58th birthday, I had my first surgery, having my spine fused from T4 - S1 with iliac bolts into my pelvis. It was a huge success. I then thought I was done with surgery. I began having intermittent chest pain and at one stage went to hospital and they found my AHC. It was confirmed by cardiac MRI. I am taking 2.5mg Coversyl and 2.5mg Bicor. Turns out the pain wasn't a heart attack, it was most likely gallstones and three weeks ago, I had my gallbladder removed. I should also mention about 5 years ago, I had a seizure for which no cause was found. Now I am wondering if it wasn't something to do with my heart. I had been having hot flashes, heart palpitations and breathlessness for years which was put down to menopause. Now, I guess it was the AHC. Since my gallbladder surgery, my BP has been very low so my GP advised me to stay off my heart meds. It's three weeks now and I am concerned. The heart muscle is supposed to be 12mm, mine is 24 and my cardiologist said I will need surgery at 30mm to reduce the thickness of the muscle. So you can imagine I am concerned about not taking the medication. I have phoned my cardiologist and he's currently away but they are going to have another cardiologist ring me, so far I haven't had the call. I only know what I've read on the internet about AHC and am hoping some of the more knowledgeable here will be able to give me some clues. It sounds pretty dire and I really don't want to have the surgery, often thinking that sudden death might be preferable to going through more heavy duty surgery. I'm otherwise active, I walk 2.5km as fast as I can most days. I can do pretty much whatever I want. My stress test was "negative" whatever that means. Anyway, it's nice to be here. I had huge support and received an enormous amount of knowledge from a scoliosis forum, leading up to my spine surgery and am hoping this forum is similar. Many thanks in advance!

[easternpoet]

Re: Newly Diagnosed... start here!

Hi Everyone

Im a 41 male who was recently told I have HOCM or HCM last July of 2011 but said I has bin there awile but never discovered because of other issues my body was facing at the time ( I needed a kidney transplant). Anyways I hope to make new friends here that will last a lifetime and If anyone from NS Canada please msg me it be nice to have friends closer to home. Im scared this condition or disease scares myself and find it hard to get answers.. till then Smile

[Philipk02]

Re: Newly Diagnosed... start here!

Lisa,

For some of us, the battle is not only a physical one. Its a feeling that you are powerless over your own destiny. And I am now very happy and feel good about having the treatment. What scares me, is the delay getting my cpap back. The one i got in 2006 final died and since I was in CCF having my surgery when i was supposed to see the WTC, i have been fighting with the DOCS just to order it using the old settings.

Hi all if you are newly diagnosed I encourage you to START here!

https://www.4hcm.org/hcma-your-first...ed/472355.html
http://www.youtube.com/watch?v=DQyGdW_xHFE

Please do not get too overwhelmed with the message board we know everyone with HCM is a little different and some of us have been through some tough battles... others are simply living with a diagnosis and little impact.

Take your time in reading and dont ever be shy... call the office anytime you have a question!

Best wishes
Lisa Salberg
[ATTACH=CONFIG]337[/ATTACH]

[BarbaraRose]

Re: Newly Diagnosed... start here!

Furst, i am so sorry for everything yiu are going through. It is very difficult to not worry. I do not know if it would help but what i did to help with my fear & anxiety & worry was i saved for a defibrillator & have since bought one. We got a medical id chain that indicates hcm & no nitrates on it.
And, lastly i say a prayer everyday...honestly, i have learned to take one day at a time....peace & strength....

Barbara
Husband with hocm
Daughter with 2 murmurs - needs stress echo at 8 yr old.

[BarbaraRose]

Re: Newly Diagnosed... start here!

Hi - i am concerned for you because some cardiac medications should never be stopped abruptly. If you stop them abruptly it will worsen your underlying heart condition. I am a nurse and we actually taper the pt off the cardiac meds...betablockers...
Feel better...

[artfelipe]

Re: Newly Diagnosed... start here!

Mabuhay (that's Hello in my language). My name is Art , 31 years old young professional from the Philippines.The reason why I joined the site is because I have been diagnosed with Hyperthrophic Cardiomyopathy a year ago and wanted to know more about the disorder.

There is no existing community in our country for people with HOCM and I think this website will be really helpful.I don't know anyone too with this ailment.My doctor said it's genetics, my dad dies when I was 7 years because of a heart attack so I think I got it from the father's side. My 3 sisters and brother havent been tested yet if they have it.

I have been prescribed with beta blocker and been taking that for a year. On my recent visit to the cardiologist, it has been recommended that I undergo alcohol ablation or surgery.Unfortunately, it will be really costly and expensive so I don't know when I can actually avail it.Hopefully I can find an organization or sponsor because I really wanted to get well.

Anyway, thank you again for this informative website and I do hope I am welcome here.

***

Moderators, sorry for posting this again.I am just new in this site, and I dunno where I can post this.Thank you!

[mbcube]

Re: Newly Diagnosed... start here!

You introduced your self in the the "Hello, My name is " section and thats the best place to start. Glad you found us & you'll find lots of information here. Please consider ordering the HCM book, available here - http://www.4hcm.org/store.html
Very informative for folks just starting their journey of HCM knowledge.

[David Hendrix]

Re: Newly Diagnosed... start here!

Hello my name is David. My Son Nicholai was diagnosed with HCM. He is only 3 and a half months old now. Our pediatrician caught this when he was about 1 and a half months old. She set us up with a cardiologist who on the first appointment said that he did have it and that he was going to start him on a low dose medicine to see if it would help. Thankfully we went to our appt. today and the medicine is indeed helping and has bumped up his dose to what it should be. I have been reading non stop and most things i've read says that most cases go unknown until the worst happens or its caught once kids start doing sports. My Girlfriend and I are very lucky to have caught this at such a young age. I was wondering if any other parents have caught it so young and how did you help your kids grow and teach them? this my not be the spot to ask that but i will do it here and find a better thread maybe to help that question.

[Frosty]

Re: Newly Diagnosed... start here!

Hi David -

I am so very sorry to hear about anyone having HCM but an infant really breaks my heart. You have definitely come to the right place to get information and support from people dealing with this now. If you were to use the "search" at the top of every page you will find other parents in the same position as you are finding yourself.

With proper care Nicholai is going to have a long, happy life. Parents such as yourself and his mother are the best thing that could have happened to this young man. My very best to all 3 of you and please let us know how he is doing.

[mbcube]

Re: Newly Diagnosed... start here!

David - You'll find many parents of wee ones here who will chime in and share their advice. Please know that your surrounded by folks who have walked in your shoes and are here to help in any way.
I should state that reading up on HCM on the internet can be quite depressing and scary. Know that many, many, many people have it and live completely unaffected lives. Here on this site, we have people seeking guidance and information so the scales are tipped to show a majority of issues related to HCM. One of the best things you can do is to get him quality care with an HCM expert at a COE (Center Of Excellence). The average cardiologist sees very,very few cases and at a COE - Thats all they see!
Please give a call to the office and introduce yourself - You'll be able to schedule an appointment to talk with Lisa Salberg who can answer any questions you have and guide you towards a knowledgable cardiologist. You may wish to order the HCM book written by her and Dr. Maron - This is the definitive bible on HCM, its treatments, and care.
Your taking all the right steps as a parent and I'm glad you were able to identify this so early so that you can help him have a long & happy life.