Heart transplant: recovering but steroids are affecting behavior

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.

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.

@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

@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

@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

@contentandwell ues i heard the same about type o for hearts also. Im type A which might have helped. I see you are from New England i was born in Worcester and lived in Upton, Uxbridge and then moved to RI when i was 10. Graduated In Bristol Ri before joining the AF thats how i discovered Arizona. But for Hearts Mayo in Phoenix is the goto place it seems. Ive met people from all over the country.

Hi @dnab, my name is glinda I to have had a heart transplant I am 8 years post transplant as of January 20th of this year I caught a hold that destroyed my heart and waited from December 23rd of 2005 to January 20th of 2011 to get my heart as I am 0+ and it is extremely rare to get an o+ heart so yes it depends on the blood and tissue type also as to when you get the heart I got mine exactly 2days before my family would have been planning my funeral as my heart was that bad it was pure scar tissue and I never knew I had the heart attack as all I had was asthma symptoms but I had an ICD implanted in 2006 do to fainting and also had the home IV to keep my heart beating as my ef was not even 4% percent and I wasn't getting even a quarter of my blood that was oyxgenated by the time I had the transplant. So glad that you didn't have to wait long for yours and that you are doing great I just wanted to introduce myself and give you a little history on me and my journey to having to have the transplant feel free to ask me questions anytime
Glinda

@danab I am from a Boston suburb but live in southern NH now, outside of Manchester. I feel so fortunate to have the top hospitals in Boston within reach. I basically go there for everything now except for my PCP.
Aren't there big spiders in AZ? :-{

@glinda It's great to hear you are doing so well. I love success stories. I know a woman who had a heart transplant when she was about 20 and she's in her 50s now and still doing great, a mother of 2 or 3 children and healthy. Such miracles.
JK

@danab, I'd like to add my welcome to the Transplants group. I'm confident that along with @glinda the other heart transplant recipients, like @vacamrc @mlee1969 @bsox1901 @amynewheart and @eileenheart, will be glad to have you in the group. Your experience will also be helpful for family caregivers supporting heart recipients like @fatherscaregiver @lupedelarosa12 @incrediblemulk98 and @linda59.

Nature and hiking is something that connects many of the members of the group here. I'd be interested in hearing more about your recovery and getting back to a physical fitness to hike and golf again. How did you learn to trust your new heart? What precautions do you have to take with physical activity? Do you have to worry about altitude?

This was a long process that will last my lifetime. Here is what I have done and continue to do, to the best of my ability. When I first received my heart in April of 2015, people around me could hear my heart (it was loud). Trust heart: I live to live, sure I have bad days, live in a high drama setting. I am also a step-parent to Pam’s seven children, grandparent to five. Work part time, college, nothing that I can think of would be a bridge I have not crossed. Physical: I need clearance to join the YMCA other than that I feel the limits. I lived with a VAD for two years I pushed myself each day. Recently I was talking to my Orthopedist, I asked him my I am always sore, he replied welcome to 58. In my four years, I am in position to attend the YMCA on a regular basis. This is the hardest thing for me, adding another aspect, create an exercise routine, I just keep trying to create space from the hospital. Not that I know of.