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Newly Diagnosed with HCM and I'm a bit lost

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mtlieb Find out more about mtlieb
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  • Newly Diagnosed with HCM and I'm a bit lost

    Hi, and thanks for letting me post this.

    I'm a 39 year old male. Two years ago i was diagnosed with kidney cancer and underwent surgery to have the kidney and tumor removed. At that time i was found to have a heart murmur and an echocardiogram was done. No diagnosis of HCM however. Over the past two years i have since experienced symptoms of shortness of breath, fatigue and dizziness even with light to moderate excercise and had another echocardiogram done. This time a diagnosis of HCM was made, and my septal wall thickness shows a 50% increase over what it was two years ago. I'm not exactly sure what that means, but it sure doesn't sound good

    I am not permitted to return to my job since it involves heavy labor, i have no health insurance, nor do i have the money to see the kind of doctors or take the kind of medications to manage this thing. Heck, i'm still paying off doctor bills from my cancer surgery two years ago.

    I don't mean to sound like i'm whining, but i really am quite lost right now, more than a little depressed, and i have no idea what i'm going to do. Even as i sit here writing this, i can feel my heart pounding in my chest, and i feel hopeless because there's nothing i can do about it. All this time i thought the cancer was going to be my big hurdle! LOL. I feel like i'm just waiting to die now. If anyone out there has ever been in this situation, i'd sure appreciate any insight you might have for me.

    Thanks much,

    Jim
    "Some days you're the dog... some days you're the hydrant."

  • #2
    Jim - not so fast your not going anywere yet
    Lets take this step by step -
    1. As you are not working and it sounds like your out on disability have you looked into programs in your state for those with disabilities? Or have you talked to your employer about accomidations under the Americans with Disabilities Act?
    2. The 50% larger than before # - - do not get to worked up over that - it is likely that the 1st echo was not done well or read correctly. Your HCM has been there a long time (and you lived with it) just because you did not know it was there and now you do really does not change things that much does it??
    3. Where do you live?
    4. Relax - drink a lot of water - stay away from alcohol - do not do any heavy lifting or competitive sports (yeh I know you are 39 the sports thing is likely in your past )
    5. Write back and let me know whats going on.

    I am glad you found us .. now lets get on with dealing with this matter and getting you back on track 8)
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      not the end

      Dear Jim,

      Lisa is an HR director, so she knows all the ins and outs of insurance and DI etc etc and you really MUST call her so you can get hooked into any services your state and/or employer OWE you ---973-983-7429.

      And she is right ---you have gone on this long with HCM, you are sure to go much farther. Read the rest of the site, not just the board. THere is a TON of information there for you.

      Generic beta-blockers are pretty cheap and a good drug. If you have a regular doctor, they will often see you for reduced rates during the tough times. Just talk to them, let them know your situation.

      Most people with HCM live the average life span, so this is NOT a death sentance. It is scary and hard and bewildering, but it is not the end. It is a new beginning down a path you had not forseen, but there is light at the end of the tunnel: you found the HCMA and we will help you through this.

      Hang in there and post often.

      You are not alone.

      Sarah
      33 -HCM- Stroke survivor

      Comment


      • #4
        Hi Again...

        Lisa and Sarah, thanks so much for your replies. You are the first people i have actually ever 'met' with this disease and just hearing from others in the same boat has helped quite a bit. I guess i was feeling a bit overwhelmed, and yes, a little sorry for myself

        I did not realize that HCM was considered a disability, so i had not even considered that as an option. Looks like i have a lot of research to do over the next several days! I have also assumed that i am not eligible for unemployment benefits, since technically i was not 'let go' by my employer, but rather i was forced to 'quit' for medical reasons. That may actually be the case, but i'll check into that as well.

        I can appreciate your comments that i have probably had this disease for longer than i think, and can relate especially to your advice on alcohol and hydration. A lot of things make sense now. My profession lends itself quite well to excessive alcohol consumption, and i have spent much of the last ten years getting drunk with my buddies, chugging 16 or more drinks a night, several times a week. I can remember many a time waking up in the middle of the night with my heart pounding in my chest and feeling like i had not been breathing for a while. I just figured it was a normal drunk for me. Now i know that what was probably going on, is that i was dehydrating my heart muscle, and exaggerating the effects of my HCM. In retrospect i guess i'm pretty lucky that i woke up at ALL those nights

        As a footnote, i have quit drinking entirely. Not because of the HCM, which i did not know about at the time, but it has certainly become a very important reason for me to stick with it. The cigarettes are another story, but i can only do so much at a time. The booze is hard enough for me right now i'll have to tackle the cigarettes in a couple months

        Thanks again for your replies, and i hope to continue sharing information on this board. It has helped immensely.

        Jim
        "Some days you're the dog... some days you're the hydrant."

        Comment


        • #5
          Good for you!

          Dear Jim,

          I know that having been diagnosed early scared me away from alcohol --so in that way it has helped me a lot b/c I have an addictive streak (even computer solitaire can get ugly!!!)

          I'm very glad you found us. We all have our pity party days and that is ok --as long as we get out of them eventually.

          Learn learn learn. Talk to Lisa and talk to HR at your old job. There are deadlines on a lot of insurance things, so hurry!

          Being clean and sober is fantastic and you are right to do one at a time. Hang in there. If you want to meet more of us HCMers, try and get to the HCMA annual meeting on June 6th in New Jersey.

          Take care,
          S

          Comment


          • #6
            Jim,

            I am 41 (about your age) and I too remember being diagnosed at 38 and wondering what this means and why me? I had had surgery 10 years before and wondered why I continue to suffer more medical problems. Of course there is no real answer to this but to just move forward, one day at a time. This board is full of people who have HCM and who refuse, as best they can, to allow it to take away their quality of life. Stay with this board, ask for help when you need it and give it to others when you can.

            God bless you

            Bob
            Cleveland Myectomy Crew
            Member since November 2002

            \"Chance favors the prepared mind!\"

            Comment


            • #7
              Hi there,
              I am Lisa R. 29 with HCM, I have known for 6 years, though the information I recieved was not much, I still continued to drink and smoke, and though I did none of this while pregnant with my son, which is what made us find it, I still started again about 4 months after having him, I recently had for the most part quit smoking, though every once in a while if we were having drinks I would smoke one or two, I too would have issues with breathing, I told my husband that I can no longer drink since it affects me, and then I will not want to smoke either(even though I really never have been a heavy smoker) it is still all the same.
              Then I had read your post and once again found I was familiar with yet another HCM patient. My husband read your post too, he said later he was not going to drink anymore either, for me, we will have the best times without alcohol. We love to have a drink, well for me a bottle of wine, him a 12 pack of beer while with our friends on a Friday night or out on a camping trip.
              Now we can just watch them not feel good come Saturday
              I am glad you are here, I am glad we are all here
              My previous cardiologist is not a specialist in this field and I am scheduled to see someone who is a bit more informed, well I am hoping ALOT more informed so I know exactly what I am dealing with, I seem to do well, though can get winded on some days from walking up my basement steps, though I do tend to me a on the dehydrated side of life, I am never thirsty, I am pushing myself now though, this site has inspired so much in me, I am trying to be less quick tempered, big trait of mine, though I love all things that are relaxing, water fall and chime sounds, massage, and calming hobbies, I am trying to do more of those things, keep this heart peaceful.
              Lisa R.

              Comment


              • #8
                Hi All,

                Thanks for all the support!

                I'm still very lost concerning what i should be doing now (but feeling much better about it)... do i sign up for unemployment, state and/or federal disability, medical assistance, all of the above? My employer carried no health or disability insurance on me whatsoever at the time of my seperation from them.

                At any rate, i've put in a call to the HCMA office, and i'm hopeful that Lisa and her vast experience and wisdom in these matters may be able to point me in the right direction (how's that for sucking up?)

                Thanks again to all of you,

                Jim
                "Some days you're the dog... some days you're the hydrant."

                Comment


                • #9
                  Lisa is the expert

                  Jim

                  Your situation is probably too complicated to be addressed properly over the board --laws being what they are about all this stuff. Too many exceptions, variations, etc.

                  Lisa is the expert here and she should be able to answer all your questions.

                  Take care,

                  S

                  Comment


                  • #10
                    I would say that that was a MAJOR "suck up"...
                    but thats fine
                    I would give you a hand even if you were not such a good suck up!
                    I will be around the office Tuesday PM - I have somethings to attend to in the morning - but will be in all afternoon (east coast time)

                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment


                    • #11
                      Hi Lisa,

                      Now was i sucking up? Hmmmmm. I must have done so unintentionally. LOL. I'll be sure to give you a call again when you are in the office. And thanks again to everyone who has given their support. I look forward to chatting with you

                      Jim
                      "Some days you're the dog... some days you're the hydrant."

                      Comment

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