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i'm feelin BAD


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Laura Hcm patient I have a great husband thank God, I wish i had NEVER heard of chest pain!!!! Find out more about Laura
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  • i'm feelin BAD

    Hi All,
    I am sorry but this is not going to be a happy note. So i will apoligize first for it.
    You'll notice the time i am writing,it is 3:30 in the am pst. I am unable to sleep because i am in so much pain and i don't wantto wake up my husband. He worries so much, mostly that we won't have time to be together if something happens. Especially when i told him today i was thinking about not going ahead and getting on the transplant list. Somedays just seem so hopeless and this pain,sob & being tired are getting to me. And as he said to me during a conversation that i have been going downhill for more than two years with No real significant
    change to the better. He told me today i needed to write my feelings down here, that that is why your here, isaid no don't want any one to feel bad for me. ... but now here i am no where else to go!
    One would think taking morphine sr twice a day and the fast acting when i get so bad would help, but not really. Breif interludes of peace is my luxury. Quality of this life sucks outloud.
    I think too bad i am not obstructed, i could get more help then. Bitter i know. Please don't take me wrong as i know HOCM is very bad also.
    But the focus of a lot more articles are on obstructed patients.
    I am still thinking of coming to the June Meeting if i am feeling okay, of course i may have made too many people mad at me by now!
    When we were told nothing could be done as I was not a candidate for anything surgically, I was at a loss for words. I remember the "we can help with meds try to get them adjusted so you will feel better" talk. But i was really quite numb. I think i still am!
    Working with the Drs long distance has been difficult. Most of the time i feel like i am a hassel. And they are great Drs. I know this. I know they are trying. I am just maybe not as patient anymore.
    I spoke to a lawyer this week(Ihave a fractured pacer wire) and basically unless i can find a Dr to state that it was placed in a comprimisable place
    and that the #of times i was in vtach due to the fracture has caused me to be in this Spiral nose dive, i don't have anything. Just one more KICK.
    Imagine $42000. for half a machine.
    Please know i think all of you are great, getting the website changed and running so well,I do come and read and do post when i think i might be helpful but not in the last month.
    Well maybe i should go put on my flying piggy socks and see if i can sleep. i think it is 5 now. Oxygen is helping my pain so i do feel a little better.
    I wish everyone a better today
    Godbless you all
    Laura Johnson

  • #2
    Re: i'm feelin BAD

    Dear Laura,

    Please do not ever apologize for how you feel. There is no rule that says al ofl your posts have to be bright and happy! You have every right to be very unhappy and upset by everything that is going on --I wouldn't be able to sleep either.

    No one is mad at you for noticing that obstruction gets more attention. I think you are quite right, really. It is an easier thing to quantify and to fix, so certainly ---and is usually more damaging-- so it gets lots of attention.

    Do your doctors recommend a transplant? It is very normal to be depressed about this and to sometimes feel like it would just be too hard to go through that. However, part of the problem is that you are so sick that it seems impossible to have the energy to even think about getting on the list.

    However, if this is what the doctors recommend, I would go for it. Your quality of life would NOT suck anymore and you would get more time with your family, not to mention the energy to do the things you want to do!

    We all get depressed sometimes. The medications don't help either as they just make you sleepy and fuzzy-headed. If you are taking a lot of medications, some of what you feel is probably from that.

    Please hang in there and please get on the list if you qualify. We all want to keep hearing from you --in good times and bad times.

    big hugs,



    • #3
      Re: i'm feelin BAD

      Hi Laura,

      I was hoping that you got some sleep last night. Actually, I was hoping that you hopped into bed with your husband and he wrapped his arms around you and held you tight. I was bummed that you were alone.

      I'm sorry you are hurting and that you are so sick and frustrated. How long have your symptoms been so debilitating? Was a transplant suggested recently? Can you explain, if you have the energy, how the fracture played a part in the progession?

      Thanks for posting. I learned alot - it was insightful. The wonderful thing about this website is the honesty and the raw feelings that are shared within the community. These are people that can truly relate, regardless of where they are in the disease progression or if they even have the disease at all. I don't have HCM, but my husband and children do.

      Laura, I hope you can make it in June. I'm planing on being there also. Until then I will keep you in my thoughts and in my prayers. Take care.



      • #4
        Re: i'm feelin BAD

        Hi, I feel so bad for you. Please don't apologize for being angry at this disease. I get that way myself at times. It does get tiring to live with! I will be praying for you. Also, I don't understand why they are not replacing your pacemake if it was defective! It seems like that should be automatic one way or the other. What does the doctor have to say that installed it? He should be doing everything in his power to get it replaced. This does not seem right to me. Don't the pacemakers have any sort of warranty on them like other products? I know when you feel lousy that it is hard to stick up for yourself and get demanding but please do it. Or have your husband do it. You are in my thoughts and please come and tell us whenever you feel down. I thought thats what this board was for! Kathy


        • #5
          Re: i'm feelin BAD

          Laura, I'm sorry things are so difficult for you. I am glad you were able to share all this with us. I'm pleased that your husband is there for you and sees the value of the message board. He gave you a wonderful suggestion when he told you to write it all down. I hope the responses you receive will in some way help you and your family to bear the burden that you are faced with. Feeling so bad makes coping so much harder. We're fortunate to have so many options in meds, but Sarah is right about the side effects and how awful they can make you feel. Too often, the whole thing is just overwelming. You have hugs, prayers, and well wishes coming your way from me also. Please keep us posted, if transplant is your next option, I hope you will be able to move forward with it quickly. We want you feeling better. Linda


          • #6
            Re: i'm feelin BAD


            I hope that you are feeling better by now and that you will go ahead and put yourself on the transplant list. I know it probably feels rather overwhelming, but it sounds like your best hope for a better life.

            I have had over 50 surgeries. I have widespread birth defects in addition to HCM, and although it has been very tough going, I am grateful for each and every operation I have undergone. Without them, my life would have been over a long time ago. I have a classic obstruction and will have an ablation soon. I am fortunate that I don't have to undergo open heart surgery, but I would do it in a second if that was my best option.

            Keep in mind that when you have surgery, everyone is right there, working for you, and that helps so much.


            • #7
              Re: i'm feelin BAD

              My prayers are with you... Take care of yourself.


              • #8
                Re: i'm feelin BAD

                OK My TURN
                Laura - You are very welcome to vent, complain or share happy news with us 24/7 and dont forget that!
                Your struggle is one many of us know too well. This disease is stressful, difficult, and outright a pain in the *** most days. The fact that your treatment options are limited being that your not obstructed just adds to the amount of frustration. Your doctors do care and if you feel that your quality of life has come to a point that you need to really think about transplant..then lets start that talk. You can get worked up and get on the list...but you need not make the choice for sometime if you really want the heart or not. HOWEVER if you wait too long to get on the list you may not be able to make that choice at all.
                Leave your options open and let yourself think about transplant.
                I think I hear a bit of "giving up" in your posting... but please know looking at the option of transplant is not the end...it is a possiblity of a new begining - no it is not simple...but there is a great deal of hope in this wonderful option we have available.
                We are always here for you.

                Be well (and get some sleep )
                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)


                • #9
                  Re: i'm feelin BAD

                  Laura, not long ago I felt the same way emotionally. I can't seem to find my post but it was long and was basically a cry for help. I remember feeling like this disease has done nothing but take and take from me with no end in sight and I often wonder what could be next. I don't have the physical chest pain that you do but I think we are similar in our attitudes.

                  We all have good days and bad or even good weeks and bad like me. Like you I've even had a fractured defib wire and was getting shocked for no reason! Believe me, I hate this thing more than anything you could possibly fathom and there are times that I get so mad I cry about it which causes PAC's and that gets me even more upset hahaha. You never mentioned the details of your problem but there are people out there that share the exact same hopes, dreams, good days, bad days, anger, acceptance, and ALL the rest of the emotions that come along with this problem. Knowing that has sure helped me through the bad days and the promise of a better tomorrow keeps me going. Oh, and no need to apologize to anyone for feeling how you feel. We're all in the same boat paddling along with you.


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