Heart transplant: recovering but steroids are affecting behavior

Hi and thanks for responding so quickly! I have read the PICS discussion. We see the transplant psychologist tomorrow morning and hoping she can help with the emotional state. As far as his physical recovery I think he is extremely delayed because of the GI problems. They are extensive, he has accidents that even depends cannot contain. This has been going on since he has been home post transplant and seem to be only getting worse. I know he is miserable, anyone would be. I think this also contributes to the depression and lack of trying to recover. The GI problems are most likely medication and diet. He is not too compliant when it comes to diet. I try explaining that poor diet will only lead to further complications and medical problems. He does not listen to me just gets angry with me.
I had a family member and a friend stay with him for the first month after coming home. They were wonderful and I could not have done it without them. My sister stayed with him for five nights after our friend went back home. All of our family lives out of town. He is completely reliant on my husband, son and myself. I feel it is my responsibility and have trouble expecting or asking my husband to help. He does help and it is very much appreciated! He will often stop in to check on him or help while I am at work. My son spends the night with my dad to make sure somebody is there overnight if he needs anything. I am expected to basically be on call for him. I don't think he understands or cares that I must work. I leave my house at 5:45am and work 10 hour days to try to get my 40 hours in a week. I take a lot of time off work for doctor's appointments, etc. When I get off work I am running getting his groceries, prescriptions, cleaning or whatever else he needs. I am often not home until after 9:00pm. I have been doing this since he was listed.
I do not expect anything return, he is my father and I will do whatever I can for him. I guess I do expect a few things from him and that is respect and for him to contribute to his recovery. He is very dependent on me and isn't very willing to aid in his recovery. I feel at this point in the recovery he should be compliant with his diet and exercises. I truly believe this will help with emotional and physical recovery. I also feel he isn't being appreciative or grateful for everything everyone has done for him. His transplant coordinator is the best! His doctors and nurses, his family and friends that have helped, the donor and the donor's family deserve and expect him to make every effort possible to have a healthy, happy second chance at life.
I know I am not in his shoes and can't fully understand how he feels. I do try, but I can honestly say my patience is running thin. There is only so much demands and nasty out bursts one can take. He does not yell or get nasty with anybody other than my husband, my son and mostly myself.
I am hoping that maybe other caregivers and heart transplant recipients can share their experiences during recovery.
Thank you so much for listening and have a great day!

@fatherscaregiver I wonder if this discussion thread might be helpful for you: https://connect.mayoclinic.org/group/caregivers/

It will connect you with other caregivers who have experienced many of the same challenges that you have shared with us.

There are so many echoes of recognition in your message, @fatherscaregiver. I'm brought back to my own situation with my father.
Food is such a touchy subject. It is attached to much more than just nutrition. It is also frustrating when someone, who has received so much care from so many people, chooses not to follow a healthy lifestyle. His food choices may be something you can't change. But I encourage you to have a frank conversation with your father about respect. While your love is unconditional and your commitment to duty unshakable, you and your husband and son shouldn't be subjected to disrespect. Better to establish that sooner than later. Now I'm starting to sound like a counselor. I'm not. But as a fellow caregiver, I share my story and thoughts. Take them if they suit your situation. Only you walk in your shoes.

I agree with Annie. Please check out the Caregivers Group as well as this group. If you post there, you will get a lot of support from caregivers in the same situation. https://connect.mayoclinic.org/group/caregivers/

Thank you for the response and understanding! I have talked with him on several occasions about the food but he will sneak it. It is impressive how they can ask a friend to stop and grab a treat. As far as the respect and the manner he speaks to us. He blames it on his steroids. I know that steroids to cause the change in temper and attitude but he controls it without side people. That makes me feel like he should control it with us as well. We are going to have a nice conversation with the psychologist tomorrow about it. I did check the caregivers group briefly and will be looking at it more closely as time permits.
Thank you again!

@fatherscaregiver - I want to ask how is your dad doing? I know you mentioned an appointment with transplant team psychologist. Did you (and dad) receive any helpful information?
I am a liver/kidney transplant recipient. My recovery after transplant was immediate; it follow a very difficult pretransplant peroid. I was 60 at the time. I felt jubilant after the surgery. But frustrated too, when I had to "go slow" for a while. Do you think that is part of what is going on?
How is your dad recovering from the surgery? How is his physical progress coming?
Rosemary

@incrediblemulk98 I haven't seen any posts recently from you. I do hope that you and your dad are doing well.
I recall that you have mentioned how your dad reacted to steroids following his heart transplant surgery.
Do you have anything that might be helpful to @fatherscaregiver while she is struggling with her own father's post heart transplant caregiving?
In advance, Thank you.
Rosemary

Hi. We did meet with the psychologist and it went very well! He was finally honest with how he feels and that he was/is depressed. With that we were able to make progress. She gave him a little bit of homework and making him journal everything to keep him accountable. She was very clear that I have boundaries that he is not allowed to cross. (as far as attitude and temper) His recovery is extremely slow being hindered by the extensive GI issues. The psychologist was able to go to his transplant team and relate the GI problems are causing problems and is effecting his quality of life. With that they are making some med changes this week to hopefully clear up the GI problems. He will also be starting physical therapy this week to try to regain muscle and strength. I do understand that he is only 11 weeks post transplant but I firmly believe he would be much further in recovery had it not been for the GI problems. I am hoping and praying to really start to see progress in the next few weeks.
Thank you!

@fatherscaregiver, Thank you for the update! This is wonderful news on a Monday morning!! I feel sure that you are experiencing a tremendous relief, too!
There is no way to measure how quickly one will completely recover. We are all unique and it can get frustrating for both caregiver and recipient.

You made a good decision to seek out the expertise of the transplant team. This is a perfect example of how the post transplant team works - they will continue to work together and coordinate your dad's care. It is not unusual to experience depression after transplant, along with other things. The best advice that I will offer is "Go to the team": do not do it alone. At 8 year post transplant, I still practice this, just don't need to do it as often.

I hope the GI issues start to settle. I anticipate that when he starts eating regularly, that he will begin to feel better.Those meds are vital, but they do play havoc on our systems. Most of the time it is a controllable situation that the doctor will address.

What kind of follow-up have they scheduled?

Hug to you, and hug to your dad.
Rosemary

@fatherscaregiver , Sorry for the late reply i have had alot of health issues going on plus live in Florida so had hurricane Irma. I had heart transplant in 2015. I can tell you the steroids definitely impacted me,try not to take it to heart. I would lash out at my mom who was my main caregiver after surgery we know its wrong but hard to control with steroids. Definitely need to have boundaries though that helps put us back in check 🙂
It should get better as steroid dose gets reduced.
I am surprised he has nit been doing theapy already, i started immediately. I had alot of GI issues if he is on Cellcept you may want to see if he can be switched to myfortic. Samr drug but one is long acting. It made a huge difference for me. Any questions feel free to contact me

Amy

Hi Amy,
Thanks for the information. Hope all is well now. His steroids have been decreased to 7.5mg a day and next week down to 5mg a day. Can't wait for him to be off of them completely. They changed his Cellcept late last week and he will be coming off of Bactrim next week. He is currently taking Bactrim only three days a week. Hoping with the change in meds the GI issues will improve. His white blood cell count is really low so he is currently staying home and no visitors until that starts to come up. That really hurt him emotionally. He will start a low dose of Zoloft this week for a few months to get him through these harder times. He is extremely weak and has lost a lot of muscle strength and balance. He had home therapy the first couple of weeks post transplant and was released. As the GI issues increased he stopped doing his exercises. I was able to set up home therapy again, he has had two visits but they will only come out one more time. I will have to make some calls to get additional visits. Three visits will not help him recover his strength.
Thanks again @amynewheart and I hope you are doing well with your new heart!