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  • Angst

    Hi, all,

    Someone asked yesterday how I was doing and I decided to start a new thread to answer in hopes that someone else has experienced what I am going through right now.

    First of all - I am feeling much better. My pneumonia is gone and the CHF is back to puffy feet and face rather than gasping for air. Dr. Gilligan changed my fluid meds and they seem to be helping, although they have not completely solved the problem. I am happy for this and feel ready (sort of) to face another semester in China.

    There is further good news: I went for my checkup a week and a half ago and everything seemed good. I had an echo the next day and it was excellent. In fact, the echo showed a decrease in septal thickening to near normal (mine was mild to begin with) and a nice decrease in ejection fraction to 60-65%. I know that pacing for reduction of obstruction is very controversial, but, in my case, at least, there seems to be significant objective improvement.

    This should all make me very happy, right? But, here's the problem: Now, if I have HCM symptoms, which I still do have, how can I not believe that they are just due to my becoming a hypochondriac? I am truly thankful to God that something happened a couple of days ago to show me that they are not, but I am still struggling.

    What happened was that I was walking through a store and began to have left arm pain. I dismissed it as my imagination. After all, the study showed everything to be near normal. So I was disgusted with myself. A couple of hours later ir reoccurred, again without any significant exertion. This time I felt exhausted as well. Again, I was disgusted with myself because obviously there is nothing wrong with me. Right? A couple of hours later I was panting and sob and in pain. Then I had a short bout of palpitations. Well, it turns out that what had caused all this was that in all the travels and moving around I had forgotten to take my morning meds. Stupid, I know, but it did help to show me that when I have symptoms I am not imagining them. Since I sometimes have these symptoms even when I have taken my meds, I am relieved to know that I can trust my assessment of how I feel to be reasonably accurate. Nevertheless, I am still in some, probably considerable, angst over this.

    I know some things about myself well. I live in fear of being a hypochondriac. My father ridiculed nearly everyone we knew who was chronically sick as a hypochondriac. So, I grew up denying symptoms and putting up with lots of unacceptable problems so that no one could accuse me of hypochondria. The last two years have been something of a relief. I could admit I was exhausted and short of breath and in pain for the first time ever. Now I feel like my excuse has been swept away by tests that seem to say I am "normal" (or nearly so) even though I still get chect pain, sob, swelling, etc.

    Well, that is a lot more honest than I intended to be when I started this. I am sitting here with tears streaming down my face and chest pain from the emotional stress of writing this. But thank you for providing me with a place to write this all out and hopefully get it off my chest. I want to move on with life and put this behind me and rejoice in the improvements without ignoring the problems. Thanks for being a part of this process for me.


  • #2
    Rhoda, I want to be the first to offer you a great big hug! You are such an inspiration. You have every right to feel "sick" and not worry about others ridiculing you. You have a true medical condition that causes problems, and we all know that septal thickness doesn't necessarily correspond with symptoms. Take care of yourself, but mostly, don't beat yourself up. We love you here.


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


    • #3

      Did the doctor say anything about the stiffness in your heart i mean if your heart is stiff there is nothing going to take that away all the way and you know just because your thickness is better doesn't mean your disease is gone you could still have symptoms, i'm glad the pacing has helped you, out of everyone i have met you are the farthest of being a hypocondriac, i would not worry about that, i think that about myself sometimes and i think it is because we feel better one day and then can't explain why we don't the next day and then we just think it is all in our head please take care of yourself

      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


      • #4
        I had the opposite response

        Dear Rhoda,

        It is so funny that I found your post this a.m.

        Just this past week, I finally "broke" the emotional connection between me and my mom regarding my condition. Maybe not 100%, but a huge piece.

        She has HCM and constantly told me to just "not worry about it." The cognative dissonance betwen reality and her words was crazy-making. Even when I was doubled-over with a kidney stone, she said I was faking.

        I took the other road though, of over-blowing every symptom to "prove" that I was not a liar. This has tapered off over the years, but the mindset was still there, lurking.

        So, I know exactly what you are talking about and I'm really glad you are learning to believe yourself. You are NOT alone in having doctors pooh-pooh symptoms without "proof." They are full of it. HCM is still misunderstood, women are still give a pat on the head and a bottle of pills "to calm you down," even today.

        Disconnect with Dad. His belief systems have nothing to do with you. I don't know about your relationship with your dad, but I know that my mom will never love me the way I want to be loved. She will never change and I will never win a biological battle. Despite the fact that I've had a TIA, she "corrects" me any time I mention it since SHE had a stroke and since I'm not paralysed, I clearly did NOT have a stroke. Ok. Whatever. I was there. I know what happened to me. Showing her my MRI is not going to change her mind.

        I am doing this www.emofree.com which seems like a bunch of hooey, but is really working for me (you don't have to believe in it for it to work!). It is really good to do this when you are crying, too. Calming.

        All the best,



        • #5

          You are better, dear, not healthy. You still have a severe medical condition. Please respect that.

          I think we all admire you tremendously for what you do and what you are able to do given your condition. You seem to take great risks with your health to continue to do it. Please get that critical father out of your head and honor what your body is telling you. You are a very brave person, definitely not a hypochondriac, and you need to take care of yourself so you can go on contributing to the world as you have been doing.



          • #6
            Rhoda , Rhoda dear Rhoda. This week seems to be the week for this as I wrote in another post that I hate to always comment on things I feel for fear of being read as an" HCM hyperchondriac", ( my term). My mom and I have had several go arounds recently as she was starting to make demands on me like she used to in the past when she thought " It was all in my head. " Well it is not it is in our hearts, pun intended. Once I even went into A- fib after getting so upset with the way my mom was treating me that I had to get cardioverted. She is getting old herself and I think she begins to forget that surgery to remove a gradient did not halt the symptoms of the HCM. I try these days to go easier on those who read our health wrong and begin to harp on us because it seems we do it to ourselves as well. It certainly is not worth flogging ourselves over . This I have had to learn the hard way.

            I am glad your gradient is lower , but like the others have said the disease wears various faces and emmits an array of symptoms. With my obstruction gone we ( me and the docs ) are able to discern just what my heart is now like. Guess what? Yup still a lot of very bad symptoms. Chest pain , fluid problems , SOB, low endurance , not great stamina, profuse sweating with every activity that requires motion. Thank god not all of these at once and not all the time and sometimes I know what I have done to bring them on and other times with ??? provacation. Oh yeah did I tell you stress brings them on too? I too forget my pills and say ," hmmm , why don't I feel well?" Yup forgot the pills. On the average I begin to lull myself into thinking and trying to act normal ( who would live any other way right?) only to be slapped with a reminder ( symptoms ) that I have HCM.

            So dear do not be so hard on yourself . YOU ARE NOT A HYPERCHONDRIAC!!!! Phooey to that.

            Take care , we care.

            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


            • #7
              Rhoda and all (because I know all have gone thru the same feelings at some time or another). I'm so happy for you for the good reports you've gotten. Use that info as inspiration to keep moving forward with your life's goals. At the same time, no one knows you better than you, and just keep trusting yourself as to how you are feeling.

              Remember how we bemoan the fact that we so often hear, "But you look so healty". It's a disability that's just not so obvious to the general public, and for that, we are often grateful. It allows one to appear "normal" when they want to blend in and not feel different from the rest of the world. That's both blessing and curse, depending on circumstances.

              Isn't it great knowing you know can always come here when you need a little bit of extra understanding and encouragement? I'm sure there's always someone else who's having the same type situation and saying, "Hey, me too!".

              Thinking of you, Linda


              • #8
                Rhoda, I read you loud and clear. I too have a "slight" enlargement, which lessened on my last echo(almost to normal size). But it means little to me when my symptoms are so severe. I have questioned in my mind (over and over) whether I was 'creating' these symptoms or were they truely HCM related. Maybe a bit of both.

                I know some people think I exaggerate the symptoms. But if they really knew what I have pushed myself through...what I REALLY felt like when I sat there smiling and 'pretending' to be normal.
                For years I was told there was nothing wrong with me, I had anxiety, I was overreacting etc. When I think back to some of those Dr's that dismissed me because I was 17, 18, 19, on and on until age 24 when finally somebody took notice.

                Emotional stress is another thing. Its way to convenient to 'forget' the emotional strain of such a disease.
                The Dr's appointments and the tests, then worrying about the results. Travelling to see cardiologists, hotels, leaving my kids, worrying about my kids-HCM or not, having to pre-plan for stairs, walking distance, lifting, etc. The financial burden is a big one too, then coming home and trying to be a normal mom and wife, trying not to let HCM interfere too much with my life. Trying to keep it all together.
                Of course this is just the tip of the iceburg. Then to have to listen to someone who you thought UNDERSTOOD say... "Why don't you get a job-that would help with costs" ...or... "Get out and excercise, you'll feel much better."
                ARRRGGHH. I don't know whether to be angry or start crying.

                Yowza, who new I had all that in me.... it felt good to let go for a moment.

                My brain must be HUGE for all the stuff I have running through it at the same time.

                Sorry for ranting in your thread. I got carried away.

                Best wishes and take care of yourself.
                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.


                • #9

                  I know exactly where you are coming from, i know deep down there somewhere my hubby cares but here lately it is not showing much at all and it hurts me to see it , i never thought he would do this a friend of mine says maybe it is his way of coping with the fact i need a transplant, i know when Dr Maron said he agreed i needed the transplant he just looked pitiful as he hung his head and he hasn't been the same since then and i used to get it would really help if you could work and i just don't know what to say to him anymore i hope everyone has a great weekend

                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


                  • #10
                    I fight with this constantly. Especially when my symptoms get so bad that I have to go to the dreaded hospital. Especially at first when they said nothing was wrong. And now that my doctors are stumped it seems even worse they just are not sure how to treat me. For awhile I tried the ignoring part and I fell to pieces. My condition got much worse and we figured out that my enzyme levels were not elevated all the time. So each of my episodes were doing damage to my heart. So yes all of my hosptial trips were warranted. So, that means it is not a quick stay anymore I have to be their until my enzymes return back to normal.

                    So life is just one big experiment now. We try new stuff not knowing what the full consequence are so I get so afraid of the side effects. So everytime I fell funny I don't know what I should do anymore. Am I over reacting or is it real. As an EMT my judgement still gets clouded sometime and it takes a friend dragging me to the hospital before I will go.

                    Sorry for the rant

                    Mary S>


                    • #11

                      Remember the posts on invisible disease and e.g. disability parking? Well, that's exactly not only how others react, but also probably our first reaction to ourselves If we would be 100%, what honestly would we think deep inside about a typical HCM'er - without saying so as we're polite

                      Looking back, i think i can just now appreciate what my mother went through for years on end, without much complaining or bickering (about her heart, don't make me talk about the rest ) So yes, unconciously we reflect our own uncertainty about our conditions onto others around us.

                      Now women are generally known to be a little more considerate about what others might think. For good or bad, once a man decides he's ill - and that may take a little longer than a womens decision - he's not so considerate about what others might think.

                      \"Hope is disappointment postponed\"

                      Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                      Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                      Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                      Meds (current) sotalol, dabigatran, furosemide.


                      • #12
                        Thank you for being so open and honest. I hope you're feeling better, emotionally and physically. You are certainly not imagining the way you feel. Unfortunately, the opinion of others often obscures our own feelings.

                        Reading all of your posts was exactly what I needed. Today I am exremely frustrated with HCM and everything that goes along with it!

                        I am fed up with never having any energy. I work full time and most days I think that I'll never make it 'till the end of the day. I have no idea how everyone else functions.

                        After I had the cardiac arrest in November and had the ICD implanted, I guess I just assumed that I'd feel better. My heart is paced now, which is much better...but I still feel so exhausted and have no stamina.

                        Many days I think "maybe it's just in my head." I used to think that my heart beating so irregularly and feeling so horrible was in my head until I had the cardiac arrest. Now, I know it was real. My echo (3 months ago)
                        was good. I just don't understand why I still feel lousy if my echo was ok. Why is that? It seems to me that I shouldn't be symptomatic.

                        Thanks everyone for sharing your stories. It's helpful to know I'm not the only person out there who feels that way.



                        • #13
                          Thanks, all of you, for your encouragement. I am feeling pretty good emotionally and physically. But that does not mean that I feel great all the time. Nearly every day has some pain and difficulty, but I am managing well. Two nights ago I had sharp pains in my back in the middle of the night, sharp enough that it woke me up exclaiming "Ouch!" in my sleep. The next morning we could hear crackles again in that spot, but today has been better again. So, I cannot answer the question about why good reports do not always work out as feeling well, but I am refusing to be discouraged. Thanks again to all of you!



                          • #14
                            Re: Angst

                            I understand exactly how you feel. My family has always dismissed my HOCM symptoms as being " all in your head ". And for a long time I thought they were right. As a child I was ridiculed for my inability to run and play like other children. Then as I got older and I started really noticing I couldn't walk very far without becoming short of breath, and I always (and still do) drove around and around at Walmart to get a parking place close to the entrance, I decided there really was something wrong with me. I can't say I was relieved to be diagnosed with IHSS with HOCM ,but, at least now my family and friends understand that it's medical and not mental or laziness.