Hello. I'm new to the Transplant Cafe, had it recommended to me by the nephrologist who saw my 63-year-old dad after his heart transplant, which was just 10 days ago. My dad is doing really well physically, but he has been experiencing constant delusions, confusion, paranoia, and hallucinations since coming out of the fog of surgery. It's scary.
After the first five days of this, a pharmacist discovered that my dad had not had his longtime anti-anxiety medication reintroduced, so he was essentially in benzo withdrawal. While acknowledging that "pump head," the trauma of surgery, the new surge of blood to the brain, the high levels of prednisone, serious sleep deprivation, etc. were surely part of my dad's mental changes, too, everyone seemed hopeful that reintroducing the anti-anxiety medication would be helpful with the psychosis. The only effect has been that my dad is now able to sleep well. The doctors seem so flip about it all, and they keep telling us the mental issues will eventually resolve, day by day, even though they seem to be getting a little worse. We're nervous, particularly because it's looking like he'll be discharged in this state (even though, for example, he thought today that if someone would just touch a finger to his pill case, it would magically fill up with his medications). Although we saw noticable cognitive changes after his LVAD surgery six months ago -- some anger, dull thinking -- this change is something entirely different. It's almost like he's become a schizophrenic. But as long as he can answer the "Do you know who you are? Do you know why you're here? Do you know what day it is?" kinds of questions the doctors and nurses keep giving him, they seem to think there's no need to worry. We can't help but worry. So, my dad's nephrologist recommended that I float the question on this forum and see if anyone else has had this experience and can tell us anything about it. If anyone has any support, thoughts, etc., I would be so grateful to hear from you. Thank you!
First, thank God your dad was able to receive the gift of life. Regarding his mental status: as you point out there are numerous factors all at play in the post-transplant period. Many people experience sun-downing in the hospital, although that is usually manifest by confusion and agitation largely in the evening. That is not uncommon in "older" people (although 63 is not that old). What may (and I stress "may") be at play is a very real syndrome called steroid psychosis. Otherwise perfectly sane people can become psychotic on high dose steroids and 10 days out from the transplant, your father is still on high doses of steroids. I have seen women treated with a lot less steroids for relatively benign conditions literally threaten to do things that are completely out of character. You should ask his doctors if this could be steroid psychosis since I would imagine they must have seen this before. The treatment of steroid psychosis is to reduce the dose of steroids, which usually leads to resolution of symptoms. In the setting of a transplant, it is not that simple to just reduce the steroid dose given the risk of rejection. But steroid psychosis is a medical emergency. I would push them on giving you a likely explanation for his altered behavior. Obviously they need to exclude other possibilities e.g. infection that can be masked by the high doses of steroids (meaning you can have a raging infection without a fever when you are on steroids). Someone who may already have some baseline cognitive impairement (you mentioned your father had some changes after the LVAD) may be more prone to steroid psychosis. I would make sure this has resolved by the time they want to send him home. I assume he is at a major transplant center where they have seen these sorts of things and know how to deal with it. Good luck!
Neil, thank you for the WORDS. Sometimes it feels like it would be helpful to just know the language to use when talking with the doctors. I truly believe my dad's transplant surgeon is a world-class doctor. We love him. We don't see a lot of him at this point, and the number of medical professionals that flow through his room each day is dizzying, so I guess our own paranoia is at play, too: We have seen in the past how important it is to advocate for my dad (or anyone under medical care), and we just want to speak for him when he can't speak for himself very well. Thank you so much for your reply and for the advice. I can't tell you how much I appreciate it!
Jenny, from my own experience Prednisone is a nasty drug. It can make you super happy or super low. Each of us responds to it differently. I have heard stories about others in my support group who also had strange reactions that were blamed on this drug. The body needs it to recover, but the brain doesn't care for it much. I'm sure that it can appear like manic depressive disorder to the uninitiated.
For your family's sake make the hospital stabilize him before he goes home. He can severely injure himself if he goes home and thinks that he can do what he wants because they released him. Check with the social worker and explain what is happening. They may have a better understanding than the Dr. & nursing staff. Good luck and keep on fighting. It will be worth it in the long run!
I have reading about "steroid psychosis" after seeing both your reply and Neil's reply (above). It gives me hope when I understand better one of these likely explanations for my dad's behaviour. It's been only 10 days, but it feels like so much longer. I just want to see a glimpse of the real him, and I have had an hour here or there where that's happened, but it's just a hint of him. And I also want to know more about exactly what's happening to him. Thank you again for your reply!
Totally normal Jenny. It happens, so I'm told, because of the brain's reaction to being on the heart/lung machine during the surgery. That, plus I imagine, the body's shock at being pumped full of all those new transplant meds that your father will have to take for the rest of his life.
I won't go into much detail but I'm told I would see all sorts of different things that were never there. All just a trick of the mind!
Tell your father, welcome to the club and congrats on his new heart!
Thank you, Paul. He had a good day today, at least for part of the day, before reverting to the hallucinations and delusions. Fortunately they didn't discharge him yet and are probably going to do another biopsy--which could mean reducing his Prednisone again. I look forward to the day he can truly appreciate that he really doesn't have an LVAD anymore, and that he really has a new heart!
I hope by now your father has been able to return home and that the doctors were able to balance his previous meds with his new list of medications.
I too had an LVAD and a heart transplant. I was 35 when I got the LVAD. I had severe dilutions and dreams after the LVAD surgery. After a few days the transplant team was able to balance my medications, and the dreams ended. After the transplant surgery I was fortunate to not experience the dreams.
I have come to know many heart transplant and LVAD patients over the past three years. Seems we all have similar stories, med lists and reactions to the surgery and medications, some beeing more severe in nature others barely notice the changes.
My best suggestion is to absorb as much medical terminology and jargon as possible, trust what the doctors and transplant team say and do, however, question everything they say and do. Do this with respect to their professionand a caring concern about your family member.
Hopefully over time your father will be able to adapt to his second chance, medications and can enjoy the added time with friends and family. Happy Holidays to you and your family.
Thank you so much for your nice note, Jason. I hope you had a great holiday. We had the best we've had in a long while. My dad has indeed come out of the delusional state and is an old version of himself that I'd started to forget was possible.
It took several weeks, but some things that helped with the delusions were (1) the reintroduction of my dad's anti-anxiety medication, (2) great biopsies leading to lowered prednisone, (3) asking his medical team to move him out of the busy/loud wing of the cardiac ICU, where he'd had a constant view of the med-flight landing pad, and (4) getting him discharged. Moving him to another room was more helpful than we'd anticipated. He had so many delusions attached to the noises and machines of his initial recovery room, and kept having nights where he was sure several people had coded and died in the hallway just outside his door. He thought the beeps of the machines were making him have to pee or take medications, even after the machines were taken out of that room. He thought every staff conversation in the hallway or the next room was really about him. But once he moved to a new room, he said that he wouldn't have to worry about the beeps and the cues anymore. It was like the recovery room had become haunted to him! He did continue to have some lingering confusion and delusions when he was discharged after nearly two weeks, but by then he was able to tell us that he knew (however vaguely) that his brain wasn't working right. He realized he was having delusions and was just frustrated by being unable to distinguish delusion from reality. One day he even looked at me and asked, "Is Jenny coming to see me today?" (That's me.) I said, "Do you mean Kristin?" (That's my sister.) He looked at me with the strangest expression, smirked, and said, "Are you here right now?"
Now that we've put some distance between ourselves and those first weeks, we kiddingly talk about the themes of delusion he experienced: There was Reversal Day (when he would say things like, "I know I'm supposed to be hot, but I'm cold, which means I'm really hot. So I guess I need a blanket...because I'm really hot," all while shivering). There was Technology Day, when he seemed to think technology possessed magical powers -- the cell phone, for example, which he thought was powering his LVAD (which he kept forgetting was gone). There was also Doppelganger Day, where he kept thinking he'd seen people already, particularly the doctors, who he thought were on TV a lot. And all kinds of just plain crazy days, when he said things like, "I know which channel the football game's on. It's on PBS. And I know that because they HATE hillbillies." All sense of modesty with my sister and me was gone during these two weeks, to boot, and I am so glad he's forgetting it as the weeks pass.
I guess I'm sharing all of this in case someone else stumbles across this discussion. It really was very scary when he was in the throes of the hallucinations and delusional thinking, and he looked so sad and frightened sometimes when I came to see him. One night I sat across from him trying to hold vigil because I was sure he was going to be bonkers -- and was, and drove the nurses batty by constantly hitting the nurse call button and using it as a speaker phone to talk to a friend. ("Yeah, hi, DAVE! It's me! How's the meeting going?") I made sure he didn't use his drinking cup as a bedside urinal and vice-versa. I was there to remind more than one nurse that he had diarrhea when they tried to keep giving him a stool softener. I explained what the beeps were, so he wouldn't attribute them to something scary, like his heart stopping. It was scary, but it passed, and in the end, he is doing GREAT. Thank you, everyone, for helping me see around it all.