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I feel like I am going to Die

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sandybeaches Find out more about sandybeaches
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  • I feel like I am going to Die


    Is it depression or the thought of the unknown?
    I was diagonsed three months ago with IHSS or Hypertrophic Obstructive Cardiomyopathy. I am 41 years old. Children in college.
    I am so tired, I cant make it without living on caffeine, and I know the stimulant is contradictory with the 200 Mg of Toprol XL that I am taking to slow my heart down.

    What are the chances that I can work half days? Or am I being a wimp?
    I want to cry all the time, and I am already on Wellbutrin twice a day.
    Can I apply for disability? I am lost.

    Is my life over? How do I know the severity of my case?
    I have the reports I just dont know what the numbers mean.

    I dont see the specialist for the second opinion for three weeks.
    newbie with IHSS

  • #2
    Re: I feel like I am going to Die

    Hi. You could be suffering depressoin or just be afraid, but it may well be something more physical than that making you feel so poor. Please call your specialist and ask them if there is any way you can move your appt up to something sooner. If not, participate in activities that will be calming and reduce stress. Take a warm bath, listen to soft music, just do whatever it is that relaxes you. Ask your employer if you can do any of your job from home or if you can work half days until your doctor appointment. Good luck and I hope you feel much better soon. We're here if you want to talk more.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: I feel like I am going to Die

      Sandy, when you refer to your specialist are you referring to an actual HCM specialist or a cardiologist?? You referred to this as IHSS which is an old term and not generally used anymore by specialists up to snuff on HCM.
      Is it depression or the thought of the unknowm? Both.
      One feeds off the other and most HMCers have been there as have most people who are diagnosed with something they feel can end their stay here.
      I can see there are a thousand questions going thru your mind.
      You really need to talk to person in the know, call Lisa, she can help with your questions and let you know of any HCM specialist in your area.
      Hang in there, I know your in turmoil right now, but I really doubt your going anywhere for a long time.
      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
      So if you are capable of thought then you are capable of great things
      Good luck and stay well.
      Glen

      Comment


      • #4
        Re: I feel like I am going to Die

        Step one... take a deep breath.
        Step two... say out loud "most people with HCM live normal life spans and so will I!"
        Step three... lets get to that specialist and check the meds. Sometimes meds such as beta blockers can cause or add to depression. Anti-depres. are great, but you may not need them or at least not as much...look at the beta blocker and TALK to your doctor about the WHOLE you.


        Step four... we are here, YOU ARE NOT ALONE and you can vent, laugh, cry or do what every you need to do to feel better here with us!

        Big hugs,
        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


        • #5
          Re: I feel like I am going to Die

          And the next step is to read through as many topic threads here that catch your eye or do a search for the concepts that worry you most.

          It is VERY improtant to know that the vast majority of HCMers live a full life span and a full life. Your life is not over by any stretch. The fact that you are this terrified this early indicates to me that your doctor may have scared the crap out of you. If that is the case, then you are probably dealing with someone who knows ZIPPO about HCM.

          Research and treatment have skyrocketed in the last ten years and doctors just can't keep on with it all, so many only know the "old" ideas about HCM, which is pretty much: don't walk too fast or you may drop dead at any moment. This is not true.

          An HCM specialist will evaluate you for any risk of sudden death (because, yes, it does happen but rarely.) If it seems like there is a lot of sudden death when you read the board, it is only because the people who never have any problems with HCM rarely visit us.

          ALso, the medication you are on can make you depressed on top of everything else. It is also a very large dose. Talk to your doctor about the symptoms you are having and see if a lower dose would be ok and see if you feel any better, emotionally. Never stop taking a beta-blocker cold turkey as it makes you worse.

          Hang in there, call the office, get hooked up with an HCM specialist and keep us posted. We are all here for you. This is the scariest part, the beginning. It gets better. Really.

          take care,

          seb

          Comment


          • #6
            Re: I feel like I am going to Die

            Sandy,

            I'm sorry to hear you're having such a rough time right now. The others have posted good advice for you, and i won't add to it except to reiterate what Lisa said about beta blockers. Being diagnosed with HCM is enough to make anyone depressed for a while, and it certainly did me. But what i eventually found out was that the Toprol-XL i was taking at the time (350mg per day) was a large part of my depression issue. I'm not saying that is the case with you, but please be sure to follow-up with your doctor and at least pursue that possibility. Once i was taken off the Toprol-XL and switched to another beta-blocker, my mental and physical well-being improved almost immediately.

            Hope you get to feeling better very soon

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

            Comment


            • #7
              Re: I feel like I am going to Die

              Hey Sandy!!! Rick here. There are always options to look at. The biggest hurdle is not giving up. You need to stay focused and see a therapist to control the depression. Work with social services and social securityu to see what they consider disability. I am 100% disabled according to the Department of Veteran Affairs and receive Social Security. But it all took time and a lot of patience and struggling. HOCM/HCM is does not have a set guideline in rating since some with the disease show no symptoms at all. You need to press your case, but work as much as you can.

              Comment


              • #8
                Re: I feel like I am going to Die

                Sandy,

                Your life is far from over. Call Lisa S. and discuss your medical information with her. She is excellent and can tell you what the numbers mean. As Lisa said, YOU ARE NOT ALONE. Email any of us, call any of us (email me for my phone # if you want), post to the board. I'm keeping you and your kids/heart/mind in my prayers.

                -Darren

                Comment


                • #9
                  Re: I feel like I am going to Die

                  Sandy.
                  They said it all so I will add ditto to everything above. I was mildly depressed for 3 months after my diagnosis and starting meds. So it can be a commen experience. We are all pulling for you.
                  Peace,
                  Leon
                  God Squad co-moderator
                  Nothing is as gentle as strength and nothing is as strong as gentleness

                  Comment


                  • #10
                    Re: I feel like I am going to Die

                    I felt your pain when I read your post.Im 36 and dont know anyone nor had I ever heard of this condition before until 4 mos ago. I an also taking 200mg toprol per day. I am basically praying a lot during the day and trying not to spend to much time thinking about the future. I love to read in the previous posts that we can live a normal life span and that is what Im shooting for. I am so glad we have this assoc. I left a post yesterday and my feelings are like yors alot of times. 2 people replied and I thought about them many times today how they were also surviving w/ this and I was not alone. I will pray for you dont give up just tackle one day at a time God bless you mike ob
                    One day at a time.

                    Comment


                    • #11
                      Re: I feel like I am going to Die

                      Hi Sandy,
                      There’s not much point in pilling onto what the others have said, but let me say that I am seventy-two years old – and still chugging along fine. I have some major issues – 15 diagnosis in all, so far - I guess we all have some, but HCM is not at the top of my list. - -HCM is something I can live with.

                      Drugs can do some strange things – I guess we all know that when we stop to think about it, so if one drug is giving you a hard time, there are others that can be tried. The big key is getting a good cardiologist who really knows about HCM, and is up on the latest treatments. Most cardiologists will say they know about HCM, but only a few really do. Only 1 in 500 on average has this malady, so you can understand why most cardio’s are not up to snuff on it.

                      Lisa Salberg is a great authority on this, and can help you by answering lots of your questions, and can probably give you the name of an HCM specialist in your area also. Her number is at the bottom of every page, and she’s usually in the office Tuesdays and Thursdays.

                      When you talk to her, please tell her I love her new Avatar.
                      Burt

                      Comment


                      • #12
                        Re: I feel like I am going to Die

                        I haven't posted much lately but felt I needed to say something. I have been where you are. I was told I had HCM in May 1998 but wasn't able to see a cardiologist until November 1998-I had to wait 6 months to see if I was going to live or die. I was terrified, and so depressed. I wouldn't discuss 'future plans' with my husband because I figured I wouldn't be here. I felt horrible physically too, my heart was racing 24-7, I was weak, tired and crying constantly.
                        With the help of new meds and a very caring Dr I made it past all that, and have enjoyed the past 6 yrs, with few setbacks. We even had a baby(he's 4 now). I take it easy, and have set limitations for myself that may or may not be necessary and I have learned to enjoy the things that are slower paced.

                        I'm back in a slump right now, but I am sure I will find my way out once again.

                        Everyone has given you great advice but I was wondering about your family history. I am the first(and only one) in my family with HCM. Have your children been checked out?

                        I just wanted to let you know I have been where you are. It is scary, especially when you don't understand all the numbers and medical terms.
                        I believed that a heart condition was a death sentence, but it isn't always.

                        Hope you are doing well, and be sure to call Lisa, she is more knowledgeable on HCM than the 2 cardiologists I have seen.

                        Things will get better,

                        Take Care
                        Pam
                        It's not what you gather, but what you scatter that tells what kind of life you have lived.

                        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                        Comment


                        • #13
                          Re: I feel like I am going to Die

                          Hi Sandy
                          I was diagnosed with HCMO in 1973. I had a 2 year old daughter and I was 20 yrs. old. I wanted so very much for my daughter...she was and still is my life. The doctor at NIH in Bethesda Maryland told me if I didn't have a myectomy I would pass away at a young age..probably within a year. After the surgery I was told I probably wouldn't live to see the age of 50. Here I am at the age of 51, living proof that over the years doctors have obtained precious medical knowledge about HCM/HCMO and getting more and more as time passes. I know the feeling of fear. It is downright he__, but please read other threads and you will see how so many people are living a manageable life. I work 8 hrs a day, do my own cleaning and do home canning in the summer. Of course there are restrictions to some people, but overall medication(s) and maybe surgery will able you to see your grandchildren. Please don't keep on thinking your life is over, IT'S NOT. Just think of HCM/HCMO as being an object that you must fight and be determined that IT is not going to get the best of you. My hubby says I'm a "tough olde bird", well maybe I am, but I'm here to talk about it...lol
                          Please keep in touch and don't hesitate to ask question, vent or whatever you need to do to overcome your fear. It will take time, but it is possible.
                          Esther

                          Comment


                          • #14
                            Re: I feel like I am going to Die

                            Please don't take this the wrong way folks... i'm sure Sandy appreciates all our concern, but i'm kinda confused as to why everyone's responding to a year-old post all of the sudden, from someone who hasn't made another post, anywhere on the board, since. Is sandybeaches even still on the board? Sandy? Helloooooooo?

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

                            Comment


                            • #15
                              Re: I feel like I am going to Die

                              Sandy pops in now and again - I think a newbie found the post and responded without notice of the date.

                              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

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