Does it ever get better? Increased aggression post transplant

Posted by Nonagon @nonagon, Mar 28 8:30pm

My family member received a kidney transplant about a week ago, and ever since, they're been nothing but extremely aggressive despite not having a history of being *this* bad. They're not feeling bad and are up and back to their typical daily activities, so a lack of freedom clearly isn't the source of the bitterness. Every time I open my mouth to speak I'm told to shut up in a less than polite way to say the least; Worse yet, they're treating their living donor (closely related), who's been having a long and complicated recovery like garbage too. Donors morale has been through the floor, and it hurts to see. I think the source of all this unprecedented aggression is the anti rejection meds, but I can't be certain.

I feel like this ordeal has permanently damaged my relationship with them, but my question is; does it ever get better? To be honest, I'm not hopeful at all, but I'd like to hear from others.

Thanks,
Nonagon

Interested in more discussions like this? Go to the Transplants Support Group.

I would recommend someone speak with their doctor. The doctor might be able to adjust the meds for any side effects that they are having.

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I can tell you from past experiences-the MEDS bring on many mixed emotions. Especially the first couple months. It is hard to describe-you know your emotions are extreme, but when you look back later in the day-you are like "What is wrong with me?". I would cry one minute and laugh at silliest thing an hour later, AND I could communicate this with my support group. I once saw a T-shirt that said "Sorry for everything I said, it was the PREDNISONE." Hopefully for everyone's sake the team can adjust some meds.

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@nonagon Welcome to Mayo Clinic Connect! Being able to have a transplant can be a life changing experience, not only for the patient but the family/friends/caregivers also. This was a major surgery, and there are almost always aftereffects of the anesthesia, that could be part of the cause of this change of attitude. And definitely, as you have already read here, speak to the transplant team and social worker about the changes you see. While there is a lot of medications to take at the beginning, they get titrated down after some time.

Is there a loving way you can bring up to the family member about the drastic changes you see?
Ginger

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Prednisone turned me into a terrible emotional mess. I would cry uncontrollably and lash out at my caregiver. Finally, Mayo put me on a fast taper and I was off Prednisone in a few days. What a difference!! Crying stopped, agitation stopped, and I returned to baseline.
If the transplant patient you are referring to is on Prednisone, my bet is, that is the problem. Talk to the doctors.

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Maybe your family member should join this support group too?

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My dad was on high dose of Prednisone after his heart transplant. He was so nasty to me (his primary caregiver). He would yell and scream at me. It was brutal for a few months. His transplant psychologist made it very clear that he didn't have the right to treat me the way he was and I had every right to walk away. Speak with his doctors, they may be able to start decreasing the Prednisone. It will get better, hang in there and try not to take it personally. It really is the meds.

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This may be difficult to read, but I am always honest in my posts that I feel I have a strong personal experience with. My husband was age 59 when he received his kidney transplant Nov 2018. THe first 14 months were filled with challenging different problems including a low grade rejection 3 months after surgery. Jan 2020 he finally had good blood lab results then COVID-19 arrived for us all mid March 2020. My husband this entire time through now nonstop has had problems with negative mood swings that come on like a light switch and depression. It has been the #1 problem in our marriage of over 45 yrs and all his 3 nephrologists know about these ongoing problems without solutions. His three antirejection meds have been changed in doseage and type a few times without help with mood/depression. He has assorted other negative side effects from being on these meds which has his fatigue and body tremors worsening the longer he's on them. We have lived isolated due to the Covid19 pandemic and still do now. He is not the man I married in personality most of the time and his emotions are numb most of the time. I just have told myself my spouse is gone. I wish transplant clinics would explain the side effects that are quite serious and for some long lasting; but they don't seem to. I've researched medical articles and studies for years for answers and it seems to repeat in summary more research needs to be done on the negative side effects that are years long lasting. I know the rejection he experienced and got over plays a big role on why his doctors will not do drastic changes to his meds on some level too. I've learned in over 6 yrs his quality of life is not good and we tell his doctors this and the focus is on the kidney and not his "quality of life". If you find answers, please let us know. I often feel as his wife and only caregiver without family that I'm losing my mind. I truly understand what is going on and I've been living it for 6 yrs and more.

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I had a lung transplant which was 5 years ago this coming July. I was diagnosed with Interstitial Lung Disease and put on 50mg of Prednisolone and the effect was immediate. I had uncontrollable outbursts especially when driving, if someone pulled out in front of me, I would actively chase them down. I had no control over the rage I was feeling. I could not function in my job, my family had to endure it, I was left home when they went shopping due to my explosive temper. I was reduced to 25mg which had little effect I was still the same. Upon being hospitalised as my lung condition worsened, I was intolerable. I pleaded with the doctors who resisted reducing my dosage. After receiving a lung transplant, I again pleaded my case stating that my quality of life and those around me was intolerable and I was considering suicide. It wasn't until then they reduced my dosage to 5mg. Even at that dose, I was still having issues, but they were much milder. I was also on Mirtazapine which I tapered off as I found it contributed to my moods and suicidal ideation. I found medicinal cannabis was my saving grace, but it was not easy to convince the lung transplant team as it clashes with anti-rejection medication. I was the first patient to suggest it as a lung transplant recipient. I managed to convince them and found that by taking my medicinal cannabis 5 hours before taking my other meds had no effect on my blood tests. Over a period of months, I have found it has improved my behaviour. I take CBD in the morning to enable responsible driving and THC/CBD of an evening, this allows me to relax and stops my brain racing. It is not a magic bullet, and care must be taken not to counter your anti-rejection meds. I believe some people are more sensitive than others to Prednisolone and I am one of them for sure, I get all the bad side effects of anti-depressants and steroids.

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I was diagnosed with Alpha 1 and the only cure for me was a liver transplant. I was only on steriods for about a month after the transplant but had additional surgery’s due to bile duct issues. I think the trauma to your body after being under that long and the surgical cut healing the meds Dr appts everything is a lot of trauma to your body. I would somedays be so irritated by anything anyone said and the next day crying because of the loss of someone’s life allowed me to live. I did not take it out on anyone I was just quiet. I was scared of rejection, scared of getting sick and that weighed on me. Luckily I never to deal with any rejection. If it’s only been a few weeks I would give some grace but I would also tell your him that although you know he might not feel the best or that you have noticed the change and the way you are treated and your not going to tolerate it. I think sometimes once a person goes down that road it gets easier and easier to treat people in that manner. As for also treating the donor that way that would be so hard to witness. I agree that you should talk to the Dr but also everyone needs to be somewhat accountable for their actions. When I look back the first year after I was a mess, crying one day for the gift of life knowing the selfless act of my donors gift, side effects from the anti rejections - it was a tough year my family was supportive but ultimately the person that had the transplant has to learn to deal with the changes to their body the side effects of drugs and seek help if needed. I am sending you a hug - and hoping things get better for you.

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