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Eileen2345 Find out more about Eileen2345
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  • Got my 02 Today

    I recieved my oxygen today, it is through the concentrator (I would go through too many tanks, and it would cost much more).

    I use it when I need it, I take 2 to 2.5 Liters.

    I was using it and walking around the house and picking up things and wow, I did not feel like I was going to pass out. It was great.

    BUT --

    Then there is my husband who promptly said, "put that away, hide it in the bedroom, I don't want to look at that thing all the time. You are damaging the kids when they see you like this."


    His mom died of Dilated Cardiomyopathy and he hates it when I look like I have health problems, he reacted the same way when I bought my scooter. (And I even bought a jazzyer one too, it has 4 wheels and no basket, I thought it looked okay, he said, "You look like a disabled person.")

    He's rainin' on my parade again.

    Hugs,
    Eileen
    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.

  • #2
    Eileen, I'm glad you now have a tool to help you through the day. I'm sorry your husband isn't supportive of you. Is there anything that we can do to help him understand that you aren't using oxygen or a scooter just for sympathy points?

    Reenie
    Reenie

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

    Comment


    • #3
      Eilleen ,

      I too am glad you can get some relief with the O2. It must be very hard for you to be so young and not able to do things the way you would want and for your husband who must wish you could too. It must be frightening for your husband to see you struggle so much with life.

      I hope he is able to deal better so he can show you his support. The fact is you are disabled and would not live this way out of choice.
      Best to youi.

      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


      • #4
        Eileen

        I have Oxygen too and i use mine on bad days also i take 3 plus liters depending on how bad my SOB is and as far as your husband goes he will have to deal with it and tell your kids it helps you to be able to breath better and they will be fine i have 2 grandkids that live with me and the 4 year old says NaNa you need your Oxygen when i would start panting you take it easy and i hope you feel better

        Shirley
        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

        Comment


        • #5
          Hi Niney,
          If I were you I would tell that SOB who seems to be more concerned with appearances then with your health and well being that when you use it he should go hide in the closet until you don’t need it anymore.

          I’m sorry. It’s not my place to say anything – or mix into somebody else’s business – But just what the heck does he think you are doing with the oxygen? Trying to blow up balloons?

          I’m going to close now. I’ve said too much already, but it’s not even a tenth of what I would like to say – or do! (Now, whatever happened to my goat?)

          You take good care of yourself sweetheart, and do whatever needs to be done.
          Burt

          Comment


          • #6
            Eileen, I am glad to hear your O2 is helping. You need to take advantage of anything that will help you feel a bit better.

            Some people do not know how to deal with their emotions when a loved one is living with a chronic illness. For them it may be easier to just 'pretend' even if temporarily that the illness is not real. So if there are no visible signs of your 'illness' then they can 'pretend' for a while that everything is ok. I don't know your husband so I am only guessing that this may be the situation.

            Regardless of the reason, I hope your husband will realize that saying things like that just adds insult to injury. If you're like me, you already have to deal with the 'guilt' of not being a 'supermom', along with the many other emotions as well!

            In my opinion, your husband needs to deal with his own feelings regarding your illness and be in enough control of himself NOT to make comments like that, no matter what he is feeling at the time.
            ((If all else fails, I do like Burts idea, hide the hubby instead of the O2!!)

            If you don't take care of yourself first, then you will not be able to take care of anyone else. Best wishes.

            Pam
            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.

            Comment


            • #7
              Eileen, No words of great wisdom here, but I'm thinking of you, sending prayers and best wishes your way. Linda

              Comment


              • #8
                Thank you everyone for the support. I don't know what I would do without everyone here. Thank you sincerely.

                Yes, Ryan can be cruel with his words and what bothers me the most is that he said it in front of the children. He should know better and not do that, his emotions take over I guess. But he is still accountable for what he says and does.

                The respiratory therapist said that I cannot put the oxygen concentrator unit in a closet. It gets too warm and it needs more ventilation. But it is now in the bedroom, not out in the living area. Not a real sexy (if I can say that) thing to have in the bedroom, but I don't have much of a choice.

                Thank you for all of your support, I really appreciate it.

                And Burt, I love ya, you make me laugh.

                Hugs,
                Eileen
                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.

                Comment


                • #9
                  Eileen--

                  I've read many of your posts, and just want you to know that I'm rooting for you too. Congratualtions on the scooter, I'm so glad you got it! And great to hear that the oxygen helps. I too get frustrated to hear of your husband's lack of support, or difficulty showing it--but keep doing what you need to do to function well. You always offer everyone so much support, and vent your own frustrations with humor, I just think you deserve the best.

                  Take care,
                  Lisa I.

                  Comment


                  • #10
                    I agree with Lisa, You deserve the best. But I'm already taken(ha ha). Because of the children you must think of yourself first then your husband. PMA, positive mental attitude always have that. Hopefully your husband will see the light. And if he doesn't, turn his lights out...


                    Tigger1
                    " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

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