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Hello again and update.

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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • Hello again and update.

    Sorry I have not posted in some time, but I have been reading everyday and sending up prayers for all who need them and generally for everyone here, so to all the newbies I say welcome and you have found a wonderful community, information bank ( that is accurate) and greater support you may not find anywhere else in this big old world. Here at this site things don't seem so bad and the world not so big and scary since we share so many common factors with HCM. We have quite a lot of activity going on in our little community of HCMer's.

    I have been busy trying to get all the preps done for my 18 year old to go off to college and for my 23 year old who is busy working and trying to get her things in order to go for her last year, 3 semesters in nursing and finding her 1st apartment alone. As my decompensations, surgery last Oct. and rocky road to recovery effected her greatly , she was forced to realize she had to take 8 months off to regroup. I pray she is truly ready now and this upcoming semester will be a positive and successfull one. Oh did I mention I am also trying to help my 24 year old prepare for her wedding in Feb.?

    Well I also have had things going on , am having nerve conduction studies done on 8-3 , hopefully someone will properly turn my devise off and then on after the studies. Having these done due to neuropathy and severe carpal tunnel syndrome. Having had injections of cortizone in both my wrists ,it has been advised that I not type as much and I am so slow at it. This is one reason I have not posted for a while in addition to all the previous mentioned reasons. My rheumatologist at least ruled out rheumatoid arthritis and said I just have plain old arthritis and that the neuopathy may be just another factor I may have to live with. He put me on an increasing dose of neurontin and it has taken a large percentage of pain at night away. The only thing is that I have developed this rash on my upper arms , and at night it itches a lot, ummf! Next I have had ??? bronchitis all summer( for last 8 1/2 weeks) in which I have bouts of coughing and a croupy sound and still raising junk. My Dr gave me the 3 day zithromax 2 weeks in and it did nothing she said then , it is a virus. She offered me more meds and I said no . It isn't possible is it ? 5 months after stopping amiodorone to have developed fibrosis as a result of that drug? The other thing is does anyone have a problem with severe sweating? It seems this is as problematic as before my myectomy. Just washing the dishes or picking up , moving around in general if I am out in the heat or in an ice cold air conditioned house if I am moving about slowly I look like I have been lifting weights or working out hard . When I say sweat I mean drenched. It pours off my head like a faucet. Although I do not have that painful pounding in my chest and huffing and puffing or gasping as pre myectomy, I still am easily winded and feel the pull on my lungs. No amount of trying harder to break the barrier of endurance allows me to push past these symptoms. Do you think it is just part of the HCM , continued CHF, or just the result of a very stiff left ventricle? I am glad I am better this year because of the surgery but wish I had more and was a little more like normal people. Nine months later I am still adjusting and and facing the terms of this wacky disease.

    Please offer any input and thanks to you all . Be well and strong of mind and spirit. Pam
    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

  • #2
    Re: Hello again and update.

    HI PAM!
    Good to hear from you!

    Have you had a PFT? Are you sure you are not in CHF?

    Be well - and good luck with all of those wonderful events you have coming up!

    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)

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    • #3
      Re: Hello again and update.

      Lisa thanks for your response. I have wondered if it is CHF and think I may need to have those PFT's redone. My doc did have a chest X-ray done and said it was negative. I do not have any weight increase or swelling that I can see, so I don't know. What do you think of the sweating? Thanks, Pam
      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

      Comment

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