Heart
Change in personality
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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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
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.
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.
Transplant 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.
Transplant Patient
Indeed, @AliEm14 👍 - the combination of the med regimen could most definately cause all sorts of unexpected reactions/behaviors.
Transplant Patient
@billywdoyaljr - I meant to say in my message earlier - Cohen is AMAZING & so are, all of you - his family.
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.