Heart transplant: recovering but steroids are affecting behavior

Posted by lupedelarosa12 @lupedelarosa12, Feb 28, 2017

My son has had a heart transplant and is recovering but is on a high dose of steroids and is acting really different coherent , bilegernt, not him at all , is this normal

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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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!

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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@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

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@rosemarya

@lupedelarosa12, Welcome to Connect. I am a liver/kidney transplant recipient. I encourage you to talk to his transplant coordinator or transplant team about this. They are the only ones who have the knowledge to answer your question. It is okay to call them, even if it is between appointments.

If you feel this is urgent and needs to be addressed tonight, you should call his doctor’s office and see who is on call to help you with this.

I’ll be back online tomorrow.
Rosemary

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@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

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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!

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@fatherscaregiver

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!

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@fatherscaregiver, I hope that your dad’s GI issues begin to improve soon and that he will feel like eating something.
You are a wonderful daughter and caregiver to be there for him. My husband was/is my caregiver; I could not have done it without him.
You mentioned that he is not able to have visitors due to the white blood cell count, and that he is ‘hurt emotionally’. I’m just curious if your dad is able to communicate online or receive phone calls from friends? When I was too weak to talk on phone, I listened. And when I was too weak to keyboard on line, my husband sent my messages, and I enjoyed reading the replies.

Prayers and hugs,
Rosemary

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@fatherscaregiver

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!

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@fatherscaregiver yes if he has been without therapy that long i agree he needs more then two sessions. You may want to see if he can get into outpatient therapy at a facility which to me was much more beneficial. Hoping the changes in his meds make a difference: ) with GI issues. I hope things get better for you both soon. Will they not let him go out if he wears a mask and during low volume times. Even if he could get out once a week i think that would help.
Unfortunately i am hospital righr now in severe rejection: ( hoping to get to go home today. Good luck with everything! Keep us posted

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So sorry to hear you are in the hospital currently. Hoping you are able to go home soon! He is unable to the leave the house while his count is so low (1.5) even with the mask. NP is working on new script for more home therapy (pretty much unlimited). Once his count is higher he will be able to go to outpatient with a mask.
Hoping and praying your are able to go home today! 🙂

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@fatherscaregiver

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!

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@amynewheart, I just said a prayer in your honor. I hope all goes well and you get to go home today.
Rosemary

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Loooking for felow heart transplant individuals to converse with

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@mlee1969

Loooking for felow heart transplant individuals to converse with

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Welcome to Mayo Clinic Connect, @mlee1969.
I moved your messages to the Transplants group https://connect.mayoclinic.org/group/transplants/ so that you can meet other transplant recipients. In particular I moved your message to the discussion about heart transplants where you can meet others who have received a heart transplant and family members, like @amynewheart @fatherscaregiver @linda59 @lupedelarosa12 @coyne and @eileenheart

MLee, why don’t you start by telling us a bit about you? When did you have your transplant? How are you doing today?

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@mlee1969

Loooking for felow heart transplant individuals to converse with

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@mlee1969, I am a transplant recipient and I want to extend an enthusiastic Welcome to our Mayo Clinic Connect Transplant Discussion group! I see that Colleen has already invited you to tell us about yourself. I look forward to hearing more from you and continuing this conversation.
Rosemary

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@fatherscaregiver, @amynewheart, @lupedelarosa12, We have not heard from you for a while. I sincerely hope that you and your loved ones are doing well. Would you care to share what you have been up to?
I also come to you for information and support for heart transplantation. I want to introduce you to @buckeyegurl, Rachel. She is interested in learning more about heart transplant.
Thanks (in advance),
Rosemary

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