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got rid of my rejection


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Barely Heart
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  • got rid of my rejection


    hows it all goinng ?

    was addmiton in to hospiltil the other night my blood pressure droped to low and i had the flu it was a bit of that and they said i wasent drinking enoght water
    but when i first went in they told me my kindeys where shuting down and that realy frecked me out but lucky they where not they were not they just didnt know anythink about transplants
    but doing good now and on the up side even thou i had to spend a few nights in hospiltil they got rid of my rejection had, had it 4 times in a row but its all gone now so glad about that

    does anyone fine that no one (as in doctors )seem to know anything about transplants , we only have one placve in nz that deals in transplant (which is a few hours away)and i feel like anyway else i go its like talking to a brick wall gets really anooying and they keep telling me things i know is wrong

    i still have the flu have had it for about 8 days now should i get that checked out re my anit rejection drugs , my temp fine

    Forever Young

    I was diagnosedwith HCM at 6.
    Went into Atrial fibrillation so had a ICD put in at 16
    Went into Heart failure at 17
    Got a heart transplant at 21(2009)

  • #2
    Re: got rid of my rejection

    Happy to hear that the rejection has abated! Stay healthy.

    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness


    • #3
      Re: got rid of my rejection

      So sorry to hear about your situation! And the flu upon everything!

      I understand it must be very hard not to be understood when you're at the hospital.

      Take care and I hope you recover soon!!
      Living in Sweden with husband and daughter.
      Diagnosed with HCM after severe shortness of breath while pregnant - 2008, 24 years old.
      Had my little daughter a couple of months later - 2008.
      Got an ICD - early 2009.
      Have heart failure. Not able to work.
      Thinking about the new operation not yet available here, apical myectomy.


      • #4
        Re: got rid of my rejection

        Glad to hear your rejection is over but yes please do call your transplant team about the "flu" that you're experiencing. Get well please. It is usually similar elsewhere as in not all understand HCM either... tansplants and specialty issues and complex and few people have a real grasp of the full picture.

        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


        • #5
          Re: got rid of my rejection

          Get well, Miss Margi !
          Onward and Upward !

          Diagnosed 4/07 HCM with fixed & dynamic obstruction
          Myectomy with resected cordonae tendonae 4/08 CCF
          ICD 10/08


          • #6
            Re: got rid of my rejection

            Sorry to hear about this, but glad it's NOT rejection!

            Myectomy on Feb. 5, 2007.


            • #7
              Re: got rid of my rejection

              Well finally you are out of rejection, I was getting concerned about you, not hearing anything. Margi I was told if I got a cold they needed to know about it to adjust my meds accordingly, this was when I was going through all the testing for the transplant. Keep in touch.

              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


              • #8
                Re: got rid of my rejection

                Hi Margi,

                I just wanted to say I hope you feel better and get over that flu very soon.

                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.


                • #9
                  Re: got rid of my rejection

                  Margi, sorry I have not responded we are moving and I do not check here as often as I should. Yes, a lot of physicians do not know about transplant. If you are still having flu symptoms please call your transplant Dr. Be sure you are staying on your meds. If you cannot keep them down you will need to get to the center. Your local docs should be able to call the transplant center and coordinate your care. Keep us posted.

                  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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