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James struggling with lots of issues.

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • James struggling with lots of issues.

    Well, things seem crazy with James but I hope we are finally going to start seeing a change. He had been struggling for a while with lots of shortness of breath, dizziness, fatigue and more. He had been missing quite a bit of school and just down right felt bad. Dr. Maron suggested we do a Stress test with Oxygen uptake and pulmonary function test as I had stated before.

    He was not able to complete the stress test but did last for abou 8-9 minutes. They did a pulmonary function test before and after the stress test and he had to be given a breathing treatment.

    The test showed he did have pulmonary dysfunction. We took him to a respiratory doctor and James was diagnosed with Asthma. His numbers dropped 45 percent when he started doing activity so they said he definitely has asthma and now he is taking flonase, allegra, nasacourt, and contrivent.

    Of course, beta blockers was making his respiratory condition worse so he was not doing well. I was beginning to worry about other serious heart issues but thankfully it was asthma causing all of his issues, at least that's what we are still hoping.

    I took him this past Thursday and he had skin testing done and we found out he is extremely allergic to dust mites, cats and dogs. He is also allergic to every tree, every grass, mold, mildew, all weeds, and pretty much everything else out there. He is not allergic to cockroaches or horse and cow.

    So they want to start him on immunotherapy after they talk to to his local cardiologist. Dr. Maron said he would need to go on Verapamil. He started out at 180mg and then went to 360 mg last week and will be going to 480mg next week.

    He is feeling better since he is using the inhaler 2-3 times per day. He is still feeling palpitations and some dizziness.

    We were at the doctors several times this past week and every time we went his blood pressure was up. It got up to 154/80. It was also 138/70, 145/74. On the Lopressor his blood pressure was never over 100/80. He was taking 100 mg of that. I called his cardiologist and he never returned my call. I just don't think it is good to be that high and I can't understand why it would be with that verapamil. I know it takes a higher dose of channel blocker to be as effective as beta blockers.

    But anyway, it has been very frustrating for me and much more for James. I feel bad for him. When they diagnosed him with asthma, he was like "WHY ME". Now he will be on medication for that everyday as well. I called the pharmacist to make sure that his asthma medicines did not mess up his heart medicine and he said it would not. So I just cannot understand why his blood pressure is up. He has also been having headaches as well.

    His doctor had been concerned that the ventricles in his heart were getting stiff which could make the pressures in his heart high.

    So just wandering if anyone else had dealt with this and could offer any info. Thanks! janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    Re: James struggling with lots of issues.

    Hi Janet,

    I am so sorry to hear about James. I remember the pictures that you had posted of him right after he had the Myectomy.

    I too have asthma but it is not as bad as James. I take Advair everyday and carry an inhaled steroid with me at all times for those just in case moments. I used to live in an apartment that had mold in the walls and my symptoms were a lot worse. I have since moved into a house and have put in an electronic air filter. In my opinion this has really helped me a lot. You could also get an airfilter that fits into his bedroom. The other thing I would suggest is to clean/change the furnace airfilter at twice the recommended interval.

    These are just my suggestions, I do feel for him, I know he has gone through a lot.

    Scott
    Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!

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    • #3
      Re: James struggling with lots of issues.

      Hi Janet,

      I am sorry to hear about James struggle. Last May, while living in Ohio my blood pressure begin to soar. I was tried on medications etc.. The drs. could not get it down and were extremely concerned. Then I moved back to N.J..

      I made a grand entrance back, by being admitted to the hospital the day after getting here, with CHF. I sat too long driving, without stopping and moving about. This was the first time I had CHF, since being dx., in 2000, with HCM.

      Never the less after several days in the hospital and reprogramming my device and adding meds to reduce my blood pressure, I was released from the hospital.

      The very next day I was returned to the hospital, via ambulance, which I have no memory of. I was admitted for a blood infection and acute renal failure. Ultimately I was dx. with a staph infection.

      The renal failure was secondary to the infection. Fortunately a renal specialist was called in. It seems my one kidney is functioning at 40% or less and is smaller than my other kidney. This is the cause of my blood pressure being high 150/100. I am on several medications and it still has not come down to where my drs. are comfortable.

      I never knew kidney function can also cause blood pressure problems. So maybe the drs. can look into his kidney function.

      Good Luck to both of you,
      Virginia

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      • #4
        Re: James struggling with lots of issues.

        Hi, Janet. I think James and McKinley seem to be running on parallel paths. However, we were fortunate to have our allergy/asthma diagnosis long before our HCM. McKinley is allergic to absolutely everything under the sun except the foods and medicinal groups (Praise God!). She did serum weekly from ages 5-10. It really made a remarkable difference in her life. She had completed her allergy serum in June and in September was diagnosed with HCM>

        She has been having a lot of the same symptoms as James and we thought it was the heart and asthma combination. What we learned is that McKinley was having more asthmatic symptoms because the blood in the pulmonary veins was not emptying fully into the heart instead is was flowing back into her lungs. Dr. Maron also changed her from beta blockers to calcium channel and she seems to be doing better. She still gets very short of breath and dizzy, but her energy level seems to be much higher on the verapamil. We see Dr. Jones in Atlanta next week on Thursday and should know more then.

        We are praying for you and James.
        Jennifer - Mom to Marissa and McKinley
        Marissa - Diagnosed HOCM 9/06, Mayo Myectomy 12/1/06, ICD 12/5/06, ICD and Lead Replaced 9/15/09
        McKinley - Diagnosed HCM 9/06, ICD 3/19/09

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        • #5
          Re: James struggling with lots of issues.

          It is a very strong possiblility that James inhalers are causing his blood pressure to increase as they are steroids and that is a reaction to steroids. You might want to ask both the cardiologist and pulmonologist about it.
          Midge

          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
          ICD&Pacemaker 1996
          Heart transplant March 19, 2004 @ Mayo Rochester
          Mom of Kaye.

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