Hi There...I am New Here

[Harrybaby666]

Hi There,

I have been referred to this site from valvereplacement.com as I have issues with my valves also. I have been having chest pain and pressure, fatigue, shortness of breath when exerting myself such as climbing the stairs to my apartment. I have been under the care of a cardiologist who has told me that my heart is growing extra fibers which is thickening my walls. I have also been told that the front of my heart is not relaxing. I have been having a very hard time communicating with my cardiologist trying to get a straight answer out of him about what is actually wrong with me. So far, I have been doing research on the internet, and I have found that the term for what I have is Hypertrophic Cardiomyopathy (on the basis of what the doctor has told me). I am 37 years old and feel that maybe the doctor might be holding my age against me as far as spilling the beans about what I have wrong with me. I have also been having from time to time, shortness of breath when I am laying flat, and a horrible dry cough, and I have told the doctor this, but he seems to brush it off. Does anyone else here feel as they are in the same boat as me? I would love to hear from anyone who has this same problems. Thanks, Harrybaby666

[Linda]

Re: Hi There...I am New Here

Harry, Welcome. The symptoms you are describing are not uncommon with HCM, but can occur with other conditions also. Your cardiologist should be able to give you a definitive diagnosis and treatment options. If he/she cannot, then it would certainly not be out of line to ask for a second opinion. Is your medical doctor involved? That may be the way to go. If you call our HCMA office in NJ, Kelly will be happy to send you a packet of info on HCM and set up a time for you to talk with Lisa. The key at this point would seem to be learning that diagnosis. Then you can research for info and treatment options. With the symptoms and your age, I would expect your cardiologist to want to move forward with a plan for relief. Best wishes, keep us posted. Linda

[Reenie]

Re: Hi There...I am New Here

I just wanted to post the phone # for the HCMA office:
973-983-7429

Reenie

[Lisa Salberg]

Re: Hi There...I am New Here

Welcome!

I will be in the office from 1-6 tomorrow if you want to give me a call and we can get you on track with HCM!

I am in a rush so I will be brief - -I look forward to speaking to you soon!

Lisa

[Harrybaby666]

Re: Hi There...I am New Here

Hi Lisa,
I just want to thank you for your help in getting this matter straightened out. Unfortunately, tomorrow I will be in the hospital all day with kidney surgery and will be back on Friday...Would there be a specific time you would be on Friday as I really would like to discuss this with you so I can start feeling better. Thanks so much, and I hope to talk with you Friday or whenever you are in the office next. Harrybaby666

[Lisa Salberg]

Re: Hi There...I am New Here

I will not be in the HCMA office on Friday but if you send me a private message with your phone number I will call you.
Best wishes with your procedure!

Lisa

[sueb]

Re: Hi There...I am New Here

The information you are getting from your cardiologist is similar to what I got from mine. You want to find someone who will tell you everything and give you a chance to learn about treatment options for yourself as well as from them.

When I transferred to another cardiologist at my family's request I found I was a candidate for sudden death--based on the reports from the previous cardiologist that he hadn't explained to me. Having a defibrillator implanted saved my life the following year when I went into severe tachycardia.

I'm not saying you are in the same condition as I was but that you need to be part of the information gathering and decision making team. Seems as if this is what you are trying to do. Good work and good luck!

Sue

[Harrybaby666]

Re: Hi There...I am New Here

Hi Sue,

Thanks for your reply. I am having such a hard time with my cardiologist that I am going to set up with a new cardiologist for a second opinion. The doctor that I have now seems to be back pedaling with the information that he has given me. I cannot afford to have this as my father is dying of heart failure right now. We don't know how much time he has, but if I can help it, I am not going to wait until it's too late to find out. Thanks for your help, and take care. Harrybaby666

[shirleymahoney]

Re: Hi There...I am New Here

I,m really sorry to hear about your dad, my dad just got out of the hospital because of his CHF, he had fluid on his stomach and chest they admited him because of his age and the fact he has had 2 major surgeries heart related. I hope you find a doctor for your second opinion, talk with lisa she will help you out in any way she can
Take Care
Shirley

[felixdacat]

Re: Hi There...I am New Here

Just a quick FYI since no one else has mentioned this and you seem to be from New Hampshire.
I'm heading for New England Medical Center next month for a full evaluation. They are one of three hospitals in the country that specialize in HCM.
Forget about your cardilogist. Just get a referal to NEMC. They do full evaluations on Tuesday. I know that they have openings on 12/23.

[Reenie]

Re: Hi There...I am New Here

Felix, you are right about NEMC being a major HCM medical center, but there are others too. We try not to direct patients to any particular center over the board. We encourage the patient to call Lisa at 973-983-7429 to discuss where the best doctor to meet that person's needs practices. Thanks.

Reenie

[Harrybaby666]

Re: Hi There...I am New Here

Hi Felix,

I will give them a call, but as I am on medicaid, I don't know if they will allow me to see them, but I will be looking into it. Thanks for the help. Harrybaby666

[Lisa Salberg]

Re: Hi There...I am New Here

Hi all,
just a quick note - We try not to make referals on the message board here, each case is different and there are several good centers available. While we communicate about several centers here on the board and encourage this exchange of thoughts we do try to keep specific referals off the board and kept to a more personal level.
We have very few 'rules' out here, but this is one we try to stick to. I know that sometimes we forget that some of you are newer to the site and may not know this...sorry I should post a reminder more often.

Thanks everyone for their input and concern for each other!

Lisa

[Deedee]

Re: Hi There...I am New Here

...I have also been having from time to time, shortness of breath when I am laying flat...

I have always had this symptom. When I lay down it takes me a couple minutes to catch my breath. I don't remember not having it like that. I always thought it was a bit strange or backwards or something.

You wanted to know if anyone was in your boat, so I just wanted to let you know that someone was in the boat with you, incase you get tired of rowing or something.


Deedee