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

Liked by @tbirdmunchkin

In reply to @ca426 "yes" + (show)
@ca426

@ca426 Hi, Charlie. It is good to hear from you. Thanks for dropping in for a brief visit. It is always nice to ‘hear’ from another old transplant friend!
I hope that you are warm and comfortable wherever you are right now. It is cold here in central Kentucky, but I am warm and inside recovering from a cold. My goal is to be extra cautious and not to pick up any kind of germ that is circulating during this flu season.

I am guessing that your reply “Yes” is to the high dose of steroids concern in the original post. I have read a lot of responses from other transplant patients, any I have noticed that they, too, have experienced the same effects.
Rosemary

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@mlee1969

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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@glinda, Hi Glinda. I feel much better today! After a good night sleep and returning appetite, I’m ready to have a normal day! But I do plan to take it slow and stay inside and warm for the next couple days. You said your fear is colds; my fear is fevers. So I have been vigilant on checking it.
Glinda, On this forum, we have many people who follow along by reading our conversations. That is how we learn and encourage each other. And of course anyone is welcome to join at anytime, just like you did
If you are comfortable, would you share with us some of your journey? Keep in mind that this is a public forum. Glinda, how did you learn that you would need a heart transplant?

Rosemary

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In reply to @ca426 "yes" + (show)
@ca426

yes nice and warm, although I am no stranger to the cold I grew up in Illinois but I’ve been in North Carolina for 30 yrs., I get some form of cold or something once in awhile but not much of a problem, I’m carful out in public, I think that there’s a lot of things out there to scare people, I’ve only had a flu shot twice my entire life and ( my adult life ) and I only got the flu once, when everybody was at our house for Christmas and out of 7 people only 2 weren’t sick. That was a ruff one but for the most part I do real well. I hope you cold get’s better, I take vitamin c on a regular basis and it helps a lot, there’s been a little dusting of snow hear but nothing to speak of, anyhow nice to hear from you have a merry Christmas.

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@mlee1969

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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I would be happy to share with everyone. I started out with what my doctor and i thought was my asthma and we kept trying different medicines that weren’t working so she sent me to see a pulmonologist on the 23rd of december of 2005 and i mentioned to him that i had had a heart mumur when i was little so he decided to do and EKG on me he came back in and told me I was not going home that i had had a major heart attack and I was going to the hospital thats when the cardiologist first saw me and on christmas eve of 2005 they did an emergency angiogram on me but i knew on tbe 23rd of december that i needed tne transplant because they did an x-ray and an MRI and a CT scan and they all should that I should not have survived the heart attack as i had the rarest form of congestive heart failure or cardiomyopathy there is i had cardimyopathy with ridgity and there was no coming back from that. I was 40 years old when diagnosed with CHF and it was determined that a cold caused it and mind you it was the very fist real cold i had ever had not caused by allergies they determined that i had caught the cold when i did a 13 mile walk with my daughter and her gym class and when we thought it went away after a couple days it had actually moved into my heart and waited to attack my heart so even though I don’t need to wear a mask anymore I still do ad I take public transportation ( the city bus) and so take all precautions and my doctors agree with me that it is safer for me to wear one

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@mlee1969

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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For me it was a long journey as my doctors and I were not sure that i would ever get a heart and as i couldn’t go on the transplant list until both my kids were taken care of i had to wait until my daughter was old enough to move into an adult family home where they would take care of her. I wasn’t worried about whether I would get a heart my concerns were about my son and daugjter and my mom and who would take care of them when I was gone if I didn’t get the transplant or even when I did get it just staying alive for them was my main concern while waiting for transplant

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@mlee1969

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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@glinda, Thank you for sharing your story. I feel like I need to say more, however, the only word that comes to my mind is, “Inspiring!”

Did you know that we have a discussion that was started a few months ago, in October, that is titled, “Transplant Stories that Inspire: What’s Yours?” I invite you to click on this link and read what others have already shared. Please, consider adding your own.
https://connect.mayoclinic.org/discussion/patient-stories/
Rosemary

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@glinda

So true my days were filled with just staying well enough to take care of both my special needs son and daughter and my ailing mom who i was caregiver to my days were one day at a time, and one hour at a time i waited from oct 2005 to jan of 2011 knowing that i needed a new heart my kids and mom were my strength to hang on

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@glinda, Is that your Heart Transplant Pillow? Rosemary

Liked by @tbirdmunchkin

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@glinda

So true my days were filled with just staying well enough to take care of both my special needs son and daughter and my ailing mom who i was caregiver to my days were one day at a time, and one hour at a time i waited from oct 2005 to jan of 2011 knowing that i needed a new heart my kids and mom were my strength to hang on

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Yes it is and for me it represents the strength and the fight thst i had and will always have to keep healthy and strong and it is something that both my son and daughter are proud of that mom had the transplant not just for them but also for myself

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@lupedelarosa12 Unfortunately yes i went thru it also. Try to be patient and at about 6 months he should be taken off the steroids and it will get better.

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Hi everyone I am 13 months post Heart transplant here is a little of my history please feel free to ask questions

A little background on me back in 2008 I caught a virus that caused major damage to my Heart. I was rushed to the hospital barely able to breath when lying down. After a couple of days sleeping sitting up I realized the flu I had was not getting better. I went to the er only to discover that fluid had built ip around my lungs and heart making it hard to breath. After massive doses of IV diuretics they were able to dry me out enough to be transferred to a Cardiac Hospital in Chandler Az. There they discovered I was pretty close to death and recommend a pacemaker plus antiarrhythmic drugs. I left for home with an ejection Factor of 5%. I did recoup from that and for a couple of years felt back to normal. My ef did get up to the 45% range and life was pretty normal. I enjoyed hiking and camping working around the house etc. But it did not last forever. In 2011 i received my first shock from the pacemaker and my cardiologist at that time recommend me see an EP Cardiologist. He recommended that I needed an Heart ablation to find the reason for my heart going into a bad arrhythmia. So he did find some bad paths and ablated them. Things were better but after a year i was still having arrhythmias more than he liked so we did a second ablation. That one was very successful. Things were good for a while but my heart got worse so in 2015 i had a bad set of arrhythmias about 8 shocks before they got my heart to settle down. After about a week and trying different combinations of drugs we got it better but still I would probably need my ablations. Well in Nov of 2017 my heart started having many arrhythmias and after a couple more ablations it was time to look at a heart transplant. My EP doctor recommended me to Mayo clinic to get evaluated. Well after getting to Mayo my heart got even worse. It got to the point that only IV drugs could control my arrhythmias. Well about the end of December 2017 i was put on the list for a heart. Then a miracle happen on January 4th the Lord provided a heart. So on 5 Jan 2018 the surgeon came in and let me know that he was going to pick up my new heart. With the Awesome Support om My Wife and caregiver plus the Prayers of my Church , Family and Friends here i am 13 months post transplant with a bright future ahead of me. Im already doing some light Hiking and i'm back on the golf course.

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@danab

Hi everyone I am 13 months post Heart transplant here is a little of my history please feel free to ask questions

A little background on me back in 2008 I caught a virus that caused major damage to my Heart. I was rushed to the hospital barely able to breath when lying down. After a couple of days sleeping sitting up I realized the flu I had was not getting better. I went to the er only to discover that fluid had built ip around my lungs and heart making it hard to breath. After massive doses of IV diuretics they were able to dry me out enough to be transferred to a Cardiac Hospital in Chandler Az. There they discovered I was pretty close to death and recommend a pacemaker plus antiarrhythmic drugs. I left for home with an ejection Factor of 5%. I did recoup from that and for a couple of years felt back to normal. My ef did get up to the 45% range and life was pretty normal. I enjoyed hiking and camping working around the house etc. But it did not last forever. In 2011 i received my first shock from the pacemaker and my cardiologist at that time recommend me see an EP Cardiologist. He recommended that I needed an Heart ablation to find the reason for my heart going into a bad arrhythmia. So he did find some bad paths and ablated them. Things were better but after a year i was still having arrhythmias more than he liked so we did a second ablation. That one was very successful. Things were good for a while but my heart got worse so in 2015 i had a bad set of arrhythmias about 8 shocks before they got my heart to settle down. After about a week and trying different combinations of drugs we got it better but still I would probably need my ablations. Well in Nov of 2017 my heart started having many arrhythmias and after a couple more ablations it was time to look at a heart transplant. My EP doctor recommended me to Mayo clinic to get evaluated. Well after getting to Mayo my heart got even worse. It got to the point that only IV drugs could control my arrhythmias. Well about the end of December 2017 i was put on the list for a heart. Then a miracle happen on January 4th the Lord provided a heart. So on 5 Jan 2018 the surgeon came in and let me know that he was going to pick up my new heart. With the Awesome Support om My Wife and caregiver plus the Prayers of my Church , Family and Friends here i am 13 months post transplant with a bright future ahead of me. Im already doing some light Hiking and i'm back on the golf course.

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What an amazing journey you have been on, truly a miracle! Your story will offer hope and encouragement to so many who are suffering from heart failure. Thank you for sharing with us.

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@danab

Hi everyone I am 13 months post Heart transplant here is a little of my history please feel free to ask questions

A little background on me back in 2008 I caught a virus that caused major damage to my Heart. I was rushed to the hospital barely able to breath when lying down. After a couple of days sleeping sitting up I realized the flu I had was not getting better. I went to the er only to discover that fluid had built ip around my lungs and heart making it hard to breath. After massive doses of IV diuretics they were able to dry me out enough to be transferred to a Cardiac Hospital in Chandler Az. There they discovered I was pretty close to death and recommend a pacemaker plus antiarrhythmic drugs. I left for home with an ejection Factor of 5%. I did recoup from that and for a couple of years felt back to normal. My ef did get up to the 45% range and life was pretty normal. I enjoyed hiking and camping working around the house etc. But it did not last forever. In 2011 i received my first shock from the pacemaker and my cardiologist at that time recommend me see an EP Cardiologist. He recommended that I needed an Heart ablation to find the reason for my heart going into a bad arrhythmia. So he did find some bad paths and ablated them. Things were better but after a year i was still having arrhythmias more than he liked so we did a second ablation. That one was very successful. Things were good for a while but my heart got worse so in 2015 i had a bad set of arrhythmias about 8 shocks before they got my heart to settle down. After about a week and trying different combinations of drugs we got it better but still I would probably need my ablations. Well in Nov of 2017 my heart started having many arrhythmias and after a couple more ablations it was time to look at a heart transplant. My EP doctor recommended me to Mayo clinic to get evaluated. Well after getting to Mayo my heart got even worse. It got to the point that only IV drugs could control my arrhythmias. Well about the end of December 2017 i was put on the list for a heart. Then a miracle happen on January 4th the Lord provided a heart. So on 5 Jan 2018 the surgeon came in and let me know that he was going to pick up my new heart. With the Awesome Support om My Wife and caregiver plus the Prayers of my Church , Family and Friends here i am 13 months post transplant with a bright future ahead of me. Im already doing some light Hiking and i'm back on the golf course.

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@danab What an incredible story. It can be really frightening to realize that things that seem to start out relatively simply can become so serious. I amazed at how little time you had to wait for a heart transplant. What is the typical amount of time that heart transplant candidates have to wait?
JK

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@contentandwell

@danab What an incredible story. It can be really frightening to realize that things that seem to start out relatively simply can become so serious. I amazed at how little time you had to wait for a heart transplant. What is the typical amount of time that heart transplant candidates have to wait?
JK

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@contentandwell i know it was basically a week. All i can say is the good Lord was there for me. I have heard that 6 months is the avg but i also heard much longer depending on blood type i guess

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@danab

@contentandwell i know it was basically a week. All i can say is the good Lord was there for me. I have heard that 6 months is the avg but i also heard much longer depending on blood type i guess

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@danab As you probably know, the wait for a liver is generally more than a year, and with that too some blood types often get transplanted sooner than others. I think type O takes the longest because if a deceased person is an O their organ can go to anyone, whereas if it's one of the other types it can only go to that type.
I am a type B which is why I think I got my new liver about two months sooner than expected. I go to Mass General in Boston and in that region liver transplants tend to take place at a higher MELD than in some of the other areas. Mayo told me they could transplant me at 28, which I was at, so I was just about to turn there when one came through for me here. Phew. I know Mayo is a great hospital but so is Mass General and it certainly simplifies things if you can stay within your own region. At that time most liver transplants were taking place at around MELD 31 or 32 in Boston. I understand from following the posts of "Compare Transplant Centers" on Facebook that the MELD at transplant is actually at around 28 in Boston now too.
JK

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