If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

My Story......

Collapse

About the Author

Collapse

Laura Hcm patient I have a great husband thank God, I wish i had NEVER heard of chest pain!!!! Find out more about Laura
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • My Story......

    Hello All,
    My name is Laura, I was diagnosed in sept 1987. 5 months after i lost my Brother,Aunt and Uncle from this disease. My Uncle also had lung cancer. My brother was 31. My Aunt had went into the ER the night before and they sent her home. None were diagnosed. My Brother had to have an autopsy and that is when it was found. At that point all my 4sis's & 3 Bro's
    and myself were to be checked. I am the only one with this. Odd really! I figure God knew i would take care of myself best?? My Mother also had this and we lost her sept 1 1995. She was the best!
    My thickness at that time was 31mm, I had a EP study done and started on Inderal gradually working up to 120mg tid, which i am still on. I stopped lifting weights and the thickness reduced to 27. A few years later (or a bad reading) it went back to 31. In May 2000 I had AICD placed due to a study done (to which Lisa was a part of) and my Dr felt it would be a good idea. I am sorry to say that i have had Problems since then, it may have started before and i just did not pay attention, who knows. A few months after implant I started having chest pain pvc's and feeling lightheaded. I went in and had the implant readjusted and felt short of okay again.
    In may the following year I was ambulanced from work with symptoms of heart attack, placed in Icu. I was going in and out of Vfib. The Pacer wire had fractured and i ended up having to wait for a week before someone that knew what they were doing could shut it off. So now i have half a device and fortunately it is the half I need more. At least until the meds start dropping my HR and I will need the pacing back. then i will think about that. In august I had another bout only worse the pain would not go away i was in for almost a week. Another Echo showing 37mm thickness 80% ejection gradient 9-10mmgh. I was also put on Verapamil 40mg and am now taking 240mg bid. I went back to Virginia Mason, they decided to turn it back on just to SEE if it was really a bad lead. I don't go there anymore.
    In Febuary of last year I started having severe chest pain so bad i was put in the hospital again, this time no known idiology because nothing showed on the ekg. I wasn't to go back to work until i had rested and relaxed. I asked for 8 hour shifts, as i was doing 12s, in august the year before. I finally got them in April. My chest pain never really seemed to completely letup. I had been working with it until last month when i just could not handle it anymore, i was exhausted.
    I try not to go to the ER here if i can help it even if my husband begs me, these people have no clue,"your ekg shows no changes" No Kidding.
    My Left cheek is still partially numb and feels like pinpricks from the last injection. They thought they would try dilaudid!!
    I did finally find THIS great website in October, I called and talked to Lisa, what a busy gal. I thank God for her. She talked with me gave me the great news that there is no Dr's on on this side of the states, I live in washington state, that was recommended. I believe that! I went to the best for me in November, Boston. Dr Maron & Dr Udelson. NEMC
    I have been to many Dr's. but I have never had 3 Dr's. spend so much time with me and my husband, making sure that they answered any and all of the questions that we had. They are truly a blessing from God! The entire staff was awesome. We saw the best right from the start "a world reknown EP Dr" Dr Pandian, a wonderful spirit, A very caring man. We have never been to the east coast and only heard how rude the people were there. All of the people that we met were kind, caring and conciderate.
    They upped my verapamil to the 480mg. and kept me on the Inderol 120 mgtid. I was still having very bad discomfort so we tried Isordil 10mg tid it made me very sick so we stopped it, back to very bad, Now i am trying 5mg bid of the isordil, I had been feeling great the last week,even went back to work part time. Today i do not feel so good I have had pain all day. Oxygen helps. It really sucks! I thought "oh wow this is going to work I feel so good". I even called to let Dr Maron know i was well.
    I know our only option now is transplant when the time comes as that is what I was told, I just keep thinking if only i had had this site three years ago someting more could have been done at that time. I hear it should not have grown or at least as much. Was it undue stress at work, I have a very stressful job, or just what. My job has requested i give up and take disability retirement, I don't know anymore if I should be working!
    My Life has this very bad thing but i also have a great life. I have a wonderful, loveing, and Awesome Husband! We met on the Internet right after my Implant. chatted for 3 months, met & now will be married one year ago this 26th of Jan. He is so caring and giveing and always there for me/us. so i guess this implant brought out the best for me in more ways then one. I also have a great son that calls me about every day. And one brat Dog name Linus.
    I hope this was'nt too long.
    A Big thank you to HCMA

    Laura
    Laura Johnson

  • #2
    Thank you

    Dear Laura,

    THank you for sharing your story with us. You have a fantastic attitude and I'm so glad your family is supportive. It really is vital to have that back up. My ex-husband told me, 6 months after my stroke, that I had "lost my spark" and he wanted a divorce. I'm better off without "friends" like that.

    Hang in there and keep us posted,

    S

    Comment


    • #3
      Hi Laura -
      I am glad you have shared your story - I hope you know that by sharing your story you have helped others as we all learn from each other and can gain support just by hearing someone else has been there.
      I only wish your symptoms had improved more after your visit to Boston. I am glad that you had a nice trip to Boston..see I told you east coast people were nice....we just tend to run everywhere ... so much to do so little time...
      Have you taken any moves toward transplant yet?
      Midge - a woman here on the board - is moving toward transplant herself maybe you can send her a message.
      I wish you all the best and do hope you like our new look!
      Best wishes,
      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


      • #4
        Hi laura, my name is lisa, I live in Missouri, I am 29 and have known since 95, I have one son who is 6. I am getting ready to go see a doctor with my husband in Feb that I am hoping is a blessing to me, I have had basic tests run on me, though I don't have my most recent echoes, therefor I don't know any of my numbers, I think I am doing well though and thank God for that, from being on this site and seeing others out there with this and what they have done and are doing for themselves, some sad stories, some promising and inspirational. I don't feel alone, especially when now I am just getting into what I have and what to do for it. I have just walked through most of this and I have gotten by, I will be 30 soon and figured I better stop playing around, so the new doctor is my start.
        I pray for you and others that are in battle to feel better, Peace and Health
        Glad you are here too.
        Lisa R.

        Comment


        • #5
          Laura, you certainly have gone thru more than your share of physical & mental pain & anguish.
          It's stories like yours that make me sit back and think here is a warrior fighting a much tougher battle than I am and inspires me to not revel in any small problem I have.
          I am sure others who read your story will think the same.
          Keep up the good fight.
          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


          • #6
            Hi Laura,

            Thanks for sharing. That was one **** of a story! It is amazing how many of us were under the care of physicians who truly didn't understand the disease. I'm happy for you that you are connected to some wonderful doctors...finally!

            Regarding your thoughts of disability...my husband reached a point in 2000 when he had to 'retire' from his job, which was auto mechanic. It's a tough decision. He's a chronic a fiber & fatique is a big issue. He is Mr. Mom and I'm supporting the family and life is very good. Laura, a stressful job doesn't sound like a good place for you right now. You take care of yourself. I hope and pray for a smooth run...you're due!

            Karen

            Comment


            • #7
              reply to Laura

              I read your story and will you the very best of luck. I have know that I've had HCM since the mid-80's. My doctor thinks that I may have experienced CHF recently (they have me on a diuretic) and he is very knowledegable in HCM , but is referring me to Dr. Udelson at NEMC. I'm glad to hear such good words about these doctors there. I have an appointment in March. Again, God bless you and take care
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson

              Comment


              • #8
                Thanks Everyone for all your good thoughts. I have been feeling much better lately.
                Laura Johnson

                Comment


                • #9
                  Laura,
                  Just finished reading your story. I feel for you. The s o b and all the other symptoms that manifest itself with HCM can be brutal. I have had my share over the years and most people don't understand. Because many of us look healthy otherwise, its hard for people to see the internal pain. You are very fortunate to have a supportive husband and family. I as well am fortunate. I have a loving wife and 2 older daughters. The youngest- 18- is still in denial and keeps thinking I am going to be able to get back on a volleyball court and play as I once did - I was her coach for several years. I went out on disability 3 yrs ago and could never have managed without the stress of work being lifted off my shoulders. I have a good friend who gave me some wonderful advice " you have done for others your whole life and now is the time to do for yourself and let your body heal. Rest,moderate exercise,healthy diet, stress free life have been helping me or at the least keeping me from getting worse.
                  I wish I knew about this site 3 years ago - it took a year for me to finally become proactive and start researchin HCM - wow - what doctors don't know!
                  All my best to you,
                  Chuck B
                  Chuck B

                  An inch is a cinch, a yard is hard

                  Comment


                  • #10
                    Thanks Chuck for your note.
                    I have been contemplating the disability for weeks now. I think i need to do this. The thought of trying to do 8 hrs again, i just don't think i can.
                    I am just not doing as well as i would have hoped. we lowered med doses & thought that was the trick, but Wow its worse i feel.
                    I am keeping my chin up though.
                    I worry the **** out of my husband, that really bothers me.

                    Wishing you & your family all the best

                    Laura
                    Laura Johnson

                    Comment


                    • #11
                      Laura, retirement is not all that bad, I retired with my Dr.s advise in 1997 at the age of 47 do whats best for you in the long run. I also live in Washington State on the mossy side, Shelton. If you want to share war stories sometime let me know. Keep your spirit. Rick
                      \"A Misty Morning Does Not Signify A Cloudy Day\'

                      Comment


                      • #12
                        Laura as a neighbor of yours I was glad and sad to read your story. I am a 45 yr. young female. I have had a heart murmur most of my life and it wasn't a big deal until I went for a pre-op physical for surgery 13 yrs. ago. During this physical they didn't like the sound of my murmur and after much testing was diagnosed with a thick heart muscle and an explanation that I also had a mitral valve that wasn't working correctly. I was told then that it was no big deal and that I just needed to be medicated during dental visits. About 8 yrs ago started noticing shortness of breath that was not like my asthma. Was put on Verlan (sp)and I felt much better. Than about 5 yrs ago I started to have racing heart spells. This year in August I started having spells so strong I thought I was going to pass out. After a long string of tests that ended with a heart catherization, the diagnosis was HOCM. I'm also dealing with Hepatitis C and life time Asthma. I have been avoiding dealing with this latest medical condition (I am taking new meds Atenelol 50 mg. & Diovan 80 mg.)in that I'm very angry and I've been medicating that anger with food. I am very grateful for this web site. I visited it often in the beginning but didn't get involved. I appreciate the information I have found on this site and the support that the people have shared with each other. I look forward to learning and growing with this site. Thank you personally for your insight. I too have a wonderful husband and great support from family. And I have to say you touched a nerve about scarying your husband. I hate that part. Well sorry this is so long but it's my first time sharing. Diana

                        Comment


                        • #13
                          Diana,

                          Never apologize for running long on this board. It's here for you to share, vent, laugh, or whatever else you need. Take care of yourself.

                          Reenie
                          Reenie

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

                          Comment


                          • #14
                            Thank you Richard and Diana,

                            I have decided to take the disability. I will work another two weeks. Very difficult decision. I am just not dependable enough with the amount & severity of chest pain to continue. The more i think about it the better it sounds i will be able to stay home and drive my husband crazy
                            And Richard I was hoping to meet someone else from this side of the Rockies! We will have to share some stories.
                            Diana I am glad you joined you will find some very wonderful people here!
                            I just have to know to take it one day at a time and enjoy every minute of it. You sound like you are going through a rough battle, keep an open mind and free spirit. Enjoy your life, wherever it takes you. WE HAVE TO!
                            Reenie, If no one has told you,that is the coolest flying Pig Pic i have
                            ever seen. Thanks so much for sharing it.
                            God Bless Everyone this fine evening
                            Laura
                            Laura Johnson

                            Comment


                            • #15
                              To all of you that have replied to my story a big thanks for your support and best wishes.

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X