1. < Transplants

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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 5, 2017
In reply to @fatherscaregiver "Hi Amy, Thanks for the information. Hope all is well now. His steroids have been decreased..." + (show)
@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

REPLY
amynewheart | @amynewheart | Oct 6, 2017
In reply to @fatherscaregiver "Hi Amy, Thanks for the information. Hope all is well now. His steroids have been decreased..." + (show)
@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!

Jump to this post

@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

REPLY
fatherscaregiver | @fatherscaregiver | Oct 6, 2017

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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 6, 2017
In reply to @fatherscaregiver "Hi Amy, Thanks for the information. Hope all is well now. His steroids have been decreased..." + (show)
@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

REPLY
mlee1969 | @mlee1969 | Oct 27, 2017

Loooking for felow heart transplant individuals to converse with

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 27, 2017
In reply to @mlee1969 "Loooking for felow heart transplant individuals to converse with" + (show)
@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?

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 27, 2017
In reply to @mlee1969 "Loooking for felow heart transplant individuals to converse with" + (show)
@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

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 7, 2017

@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

REPLY
1 reply
@tbirdmunchkin | @glinda | Dec 7, 2017
In reply to @rosemarya "@fatherscaregiver, @amynewheart, @lupedelarosa12, We have not heard from you for a while. I sincerely hope that..." + (show)
@rosemarya

@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

Jump to this post

Just to stay strong and have faith and never give up thats what got me thru all the waiting and worrying

REPLY
mlee1969 | @mlee1969 | Dec 8, 2017

Unfortuantly we are all different, in the begining it can be very difficult. Hard to say. I know all medicines go down as you put to gather days out from surgery date. I do have to say that I wasn't the funiest person to be around back then. I had my transplant on April of 2015. I'm alright. Also still married so at times its baby steps. Stay busy, trust in doctors, do something you enjoy. The doctors know. Wish you the best Gary

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