Heart — TransplantLyfe

Heart

Change in personality

billywdoyaljrCare Partner
May 7, 2022 in Heart

My son had a heart transplant on October 10 2022. We got to come home the week of Christmas. Since we’ve been home it’s been so hard. He has been very hard to deal with, saying things he would normally never say, his attitude is so terrible. It’s breaking my heart. I was just wondering if any other parents or recipients have had these issues. It’s like there’s no logic, he’s very selfish all the time. He’s not compassionate like he was pre transplant. Any feedback would help!

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1 - 12 of 12 Replies

  • JimGleason_TRIOTransplant Patient

    Such unusual change in a patient's actions/attitudes is well known when in the early months post-transplant they are on significant doses of Predisone. Typical as that med is weaned, the patient returns to their former self. How old is your son? Are you engaging with your program's social worker? They have lots of similar experience to help you.

    May 7, 2022
  • JimGleason_TRIOTransplant Patient

    When I returned home with my new heart (28 years ago), my wife in those early months of my recovery, called the program asking "Who is this monster you sent home?" I think most would describe me then as an easy-going, hard-working, loving father, but I can still recall these many years later how I very purposefully created and engaged in argumentative behavior with the family over dinner while on the early heavier dosages of the miracle drug, Predisone. It's easier to laugh at those 'pick a fight' moments that went away once weaned off it. Once that immediately after surgery higher level dose was reduced (eventually off it entirely), things got back to my normal self, as I hope will be the case for your son.

    May 7, 2022
  • billywdoyaljrCare Partner

    Well he hasn’t been on that drug since we left the hospital. What you’re describing is exactly what we’re experiencing. I wonder if any of the rejection meds can cause this? He’s also on some antidepressants as well. It is assuring that this eventually went away

    May 7, 2022
  • JimGleason_TRIOTransplant Patient

    I can't speak to any interaction with antidepressant meds, but hope you are engaging with the transplant program on those issues. If they got him off Prednisone that early, it's a good thing, so that doesn't play with my thoughts above. Again, what is your son's age? Also, a factor can be how long he was sick leading up to his transplant. How long was that?

    May 7, 2022
  • billywdoyaljrCare Partner

    Cohen was diagnosed March 4, 2021 with cardiomyopathy, and was in CHF. He was a freshman, and had just played in the State Championship 5A High School Game. From March to June he declined quickly. In June, he and I moved to New Orleans in hopes of getting on the transplant list. Within days we were on the list. We continued to live in NOLA until the end of December. Cohen’s transplant was 10/10/22. We were actually in the hospital prepping for the LVAD surgery. We were told after they opened him up for the transplant, that he would have not made it thru the LVAD surgery. To sum up, from March until October, was aweful for him. Being away from his siblings and my wife, friends, schooling, and football team was so hard on him. Losing football was heart breaking. They tried to educate my wife and during the time in NOLA about how difficult post transplant would be, but we were so consumed with just him surviving. My wife and I are so tired, mentally and emotionally, as well as I’m sure he is. We are so thankful for his new heart, we just want him to be happy now.

    May 7, 2022
  • JimGleason_TRIOTransplant Patient

    Wow, what a tough time for a young teen anyway, and then to have all those complexities besides. I have seen the parents of a similar teen who was awaiting heart transplant in a Children's Hospital (a peds transplant program) which had the patient very abusive to her parents that I observed. She (the patient) was so frustrated seeing younger children get their hearts while she continued to wait, finally announcing she was giving up and saying 'if a heart didn't arrive by the Super Bowl date, she was 'outta here'. We had a wonderful young man, heart recipient, great hunk of an athlete, father and just all around great guy. Our TRIO chapter here in Philly got him to go make a visit with her. When he got there, seeing her attitude and frustration (she didn't have the good fortune to have that short wait you experienced in NOLA), he decided he couldn't just leave that visit until he had changed her attitude. So that evening, hours later, he finally left with a promise to return later that week with a home cooked meal (he loved to cook). After that follow-up visit with his meal, she announced that she 'knew I will be getting my heart, and if it didn't happen by New Year's day, then it would happen later for sure, a totally turned around attitude that saved her mom from the ravages she had been enduring.

    Now I know that isn't your situation, except for the parental exhaustion you both are living each day with given his anger and frustration (especially in loss of that sports goal and outlet), but maybe you can find a young post-heart mentor who might provide him with the positive view of his future with full recovery.

    So, I assume you are no longer living near NOLA and his transplant program (a peds one?)? Where is he getting his post-transplant support from? Or are you doing that long-distance still from NOLA? Where is 'home' today, now that you're back from that early recovery months with NOLA?

    May 7, 2022
  • JimGleason_TRIOTransplant Patient

    Let me suggest reading two books that might give you some hope in a different way. Check out my book reviews for Nick's New Heart (https://www.trioweb.org/images/files/resources/communications/book-reviews/BookReviewofNicksNewHeart.pdf) and Susan May's (Nick's mother) continued Nick's heart story 30 years later (https://www.trioweb.org/images/files/resources/downloads/Book_Review_of_Nicks_New_Heart_2nd_edition_2021.pdf)

    Nick goes through a lot over the years, but today, 30 years after his heart transplant , Nick is happily married with child. If you find that useful, I know Susan would be glad to talk with you both to help with your challenges that she has lived through herself.

    May 7, 2022
  • AliEm14Expert
    Transplant Patient

    I love your insight on this @JimGleason_TRIO

    i just wanted to respond to your comment about antidepressants @billywdoyaljr depending what he’s on, that may also play a role. Tacrolimus amplifies the effects of some mood stabilizing medications. I’m completely off mine now (I’m 2 years post transplant) but I felt like a zombie emotionally, and definitely snapped easier before we found out what it was and adjusted accordingly. And it’s not well studied from what I hear, so it was a lot of trial and error. Some of it may be time but I’d also check his mood stabilizing meds against his anti rejection meds. If you have a transplant specific pharmacist, that’s who helped me.

    May 9, 2022
  • Sdey0522Transplant Patient

    @billywdoyaljr - thank you for sharing your concerns/worries. First, many congratulations to your son & to your family - he's been blessed with the Gift of Life.

    The surgery itself, as well as the trauma he's experienced pre & post + the pain + the med regimen (especially, the magic drug with massive side-effects, PREDNISONE - will drive anyone baddy! This drug is known for inducing major mood swings.

    My heart transplant happenned just over 7 years ago, but I can recall many episodes of complete irrational behavior!! There was rudeness, irritation, frustration, anger, sudden, major anxiety, worries, bouts of excessive crying for no reason - and a whole range of other emotional situations.

    Your son is a warrior and he will come out of this phase - slowly but surely, as the dosages taper down & he gets weaned off. 🤞🙏

    (*Meds like this should never be altered/stopped without consultation with his Drs / transplant team, & it stays in our systems for a long time.)

    Another thought, it's OK to get him some counseling/therapy for his mental state of mind. Pre & Post Transplant I was on some anti anxiety + anti depression meds (after consulting with a psychiatrist)

    I wish you & him well. Best of luck on his transplant journey.

    Please continue to share on this forum, you'll get support for sure!

    Please feel free to message me directly - anytime! There are also virtual support groups you can attend along with other Caregivers of transplant candidates/patients/recipients - you may find those helpful too.

    Take care.

    May 9, 2022
  • Sdey0522Transplant Patient

    Indeed, @AliEm14 👍 - the combination of the med regimen could most definately cause all sorts of unexpected reactions/behaviors.

    May 9, 2022
  • Sdey0522Transplant Patient

    @billywdoyaljr - I meant to say in my message earlier - Cohen is AMAZING & so are, all of you - his family.

    May 9, 2022
  • StephenCFTransplant Patient

    I'm sorry to hear about his abrupt personality change @billywdoyaljr. Definitely look into any adverse drug reactions but also given his age I'm sure , as I went through multiple self destruction phases during my HS years myself, that his mind is probably in overload right now.

    Although a successful transplant can be life saving it can also have the effect of destroying whatever life you had before, or even envisioned. This can really weigh on you, particularly I think when you are younger and already going through normal physical and mental growing pains. To go from HS championship game to not being able to play anymore; to moving; to the isolation from friends; to the transplant itself and a "new" life governed by labs, hospital visits and a lifetime of therapy.. I can just imagine what he's feeling and thinking on a minute by minute basis.

    It took many years of anti depressants and therapy for me to feel "normal" during HS and a few years after. Doctors would yell at me at bedside, nurses would chastise me during procedures. I was so bad and participating in so many self destructive activities my parents had me drug tested because they didn't believe I wasn't doing anything, that I could be on one hand completely lethargic and aloof, yet on other destructive to the point my health was negatively impacted.

    Provide some space, try not to judge, and recognize that this phase, if it is one, will take some time to steer through. His life is completely upended now and it's very confusing time. It will take some time to find a new purpose given what he's lost.

    But I'm glad he was able to receive the transplant and physically, it's been successful. Now the hard part.

    May 9, 2022
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