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rejection worst ?


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  • rejection worst ?

    hows it going ?

    i know its wrong and i know it will damage my heart but its like my mind is liveing in denal and cant look that far ahead but i havent taken my pills for a week and at my last byopise i was in mild rejection , would that have made my rejection worst ?
    do i need 2 tell my doctors ?
    im so over taking pills and hospitil and all the rest that goes with it, iv been taking pills as long as i could remeber and i just dont wont to do it any more but at the same time i dont wont to get sick or kill my self
    this heart transplant is one of the greatest things in my life but at the same time its pushed me of the edge ,

    sorry just had to get that out

    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: rejection worst ?


    The impact of having a very difficult physical condition to deal with must be very trying. Being young as you are it means restrictions and adjustments; taking meds, Dr. visits etc. But really this is about your life and future. Without the transplant you may well have not lived this long. But you are here now. Please take care of yourself. Do take your meds so you can live to tell your kids and grand kids how you persevered through a very difficult time. I know you can do it! Don't worry about what you will do tomorrow. Just take care of yourself today and each day you wake up. Take your meds, for today and each day you wake up. Just comit to live each day healthily. Remember we are all pulling for you.


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


    • #3
      Re: rejection worst ?

      Margi - Please call your doctors today, explain what is going on. They have a team working for you and with you. There is someone available to help you thru this portion of difficulty. In addition to that, some of the meds you are taking could contribute to the mental difficulties you are having to adjusting. They may need to re-think your med regime.

      There is much to offer, your part is making sure they know what and where your difficulties are so they can adjust treatment and add to it as needed. You are part of the team that is working on building your new life. We all want you to succeed - ask for the help you need.

      We are here to support you, but our hugs and well wishes are missing that physical touch. Reach out to those around you - tell them what you need.

      Thinking of you - Linda


      • #4
        Re: rejection worst ?

        Hi Margi,
        I agree that it's a good idea to talk with the docs about this. You're through the first step, immediate physical recovery from surgery. Now you're in a step that's hard: learning how to live with the requirements of a transplant. That's not just a matter of "follow these rules" but also a matter of learning how to cope with the rules. Not easy, I'm sure. I'll guess that you're not the first transplant patient who has found this hard, and I'll guess that the docs have people they work with who can help you figure out how to cope. Give them a call and let us know what's going on.

        Myectomy on Feb. 5, 2007.


        • #5
          Re: rejection worst ?

          Hi Margi,

          After going through a traumatic experience like a heart transplant, some counseling may be necessary.

          I needed counseling after my myectomy and divorce, I was terribly depressed.
          I know that I would need counseling after a heart transplant.

          And Linda is correct, some of this might be caused by the medication itself, they can adjust your medication.

          Please let your doctor know. You are too precious to let anything bad happen.

          Many hugs,
          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.


          • #6
            Re: rejection worst ?

            I echo what Eileen2345 said. Adjusting to what is going to be a life-long committment to your health is not going to be easy, and you might needs some help.

            But a good therapist is going to ask you some tough questions - so be prepared. Why didn't you take them for a whole week?!
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .


            • #7
              Re: rejection worst ?

              I'm glad you feel comfortable coming here to share what you're going through. And I agree with what the others have said. I'm guessing that there is a social worker on your transplant team. Please seek him or her out and let him/her and your doctors know that you have not been taking your meds and exactly how you feel about the situation. Needing therapy is not something to be ashamed of and may be quite necessary to help you to adjust to the requirements of your new life. Yes, you have been given the gift of life, but that doesn't mean that there aren't difficulties that go along with it, and difficulties that are somewhat beyond your present coping skills. Don't cheat yourself out of a better life by not taking the action you need, in order to have that better life.

              We want you to be healthy AND happy. Please call your transplant team today.
              Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.


              • #8
                Re: rejection worst ?

                Margi, please tell your Dr's immediately. Not taking the pills for a week or more can permanently damage your heart. I do not want to scare you but you have to get some help. I know here in our transplant centers there are Psychiatrists and Social workers that are available and you do defnitely need to see one. Please we love you, and the person that gave that heart has done a wonderful thing by saving your life. Take good care of it. Get the help you need soon. I am saying this from having had a wonderful support group when I had my transplant and I want you to get the support you need. With love.

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


                • #9
                  Re: rejection worst ?

                  I cant even pretend to know what you have gone through. It's an awfully heavy load to carry for a young girl Even though you seem to be wise beyond your years.
                  Please find a good therapist. Ask your Doc. Im sure if you share your thoughts with him, he wil help you find someone to talk with.
                  Remember the donor that gave you the heart and honor what they gave you.
                  Hang in there ! Sending good thoughts your way !!


                  • #10
                    Re: rejection worst ?

                    I am sorry this is so hard for you. We really admire you independent spirit, but you gotta take those meds! Living through this with Emily, I know how hard it is. I understand that you would like this to be behind you, and go back to "normal," but you know too well that can not happen. I think sometimes it is easy to feel like the meds represent the whole hospital/medical thing, and you'd just like to be done with it. BUt you just can't. The meds are your ticket to stay OUT of the hospital. Take the advice above, and get some support to deal with this. It is so important for you.


                    • #11
                      Re: rejection worst ?

                      Margi I pray you get some help soon .. no matter what kind works do it and do it soon. Maybe you need to go into the hospital and regroup. Some sort of therapy is a must. Think about your friend who did not get her transplant in time. Honor her memory and what she would have done/ chosen to do/ path to follow / lifestyle changes and adaptations if only she were given a heart in time. I understand the troubles you describe I just want you to try real hard and do better and to live. We all care Margi.

                      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


                      • #12
                        Re: rejection worst ?

                        I'm sure you've heard it all about taking your drugs, but try to think of it this way.....a wonderfully generous donor family gave you the gift of life, and you certainly don't want to squander it! My 17-year-old granddaughter Sara got her transplant about a month before you did, so we do understand.

                        I give Sara a TON of credit for being right on top of her meds! Nobody else takes care of it for her, and nobody stands over her to remind her to take her meds. That's part of being an adult and handling your own health issues. She keeps track of what pills need to be ordered and lets her Mom know in plenty of time.

                        Try to set up a schedule and stick to it. They're just pills, after all. And they, along with that wonderful gift of a heart, allow you to be a healthy person and do most anything you want.

                        Now that I've given you a hard time, I have to follow up by saying we're all proud of you for admitting all of this, and sincerely wanting to fix it!

                        Good luck, and keep in touch! We really do care.


                        • #13
                          Re: rejection worst ?

                          Margi -
                          I am going to jump right to tough love... i could couch this and say some nice things like the others have... but i am not... GIRL YOU ARE BEING FOOLISH! You MUST take your medication and you must tell your doctors that you have stopped taking your meds for a period of time so they can adjust them properly.
                          You took a huge gift... you have someone elses heart, which could have gone to a number of people... it went to YOU for a reason. You owe it to yourself to take care of this heart as best you can.
                          The result of not taking your meds is rather simple... MORE hospital time, more IV's, more doctors and possibly death...
                          taking your meds... means less hospital, less IV's, less docs and more time for YOU.
                          Please stop the games... time to grow up a little my dear and honor that gift...
                          You know we are here for you... but you have to be there for yourself first............
                          Love and hugs
                          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)


                          • #14
                            Re: rejection worst ?

                            lisa couldn't have said it better!I got my heart 5 years ago and it only takes a swallow of a few pills to keep you alive. Quit yer bellyachen and be grateful for your life. Sue


                            • #15
                              Re: rejection worst ?

                              Okay Margie I will join Lisa and Sue. Which is easier pills or massive rejection or death. If you keep up what you are doing right now you will be committing suicide. Sue, and I are so excited about the 2nd chance at life that we pop our pills and lead a great life.

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