heart transplant

I am a heart transplant recipient from Cleveland Clinic, 6+ years ago and I am doing well. I was NOT an LVAD patient though I see many VAD patients when I volunteer at CCF. There are a number of early concerns with a transplant. Infection is the biggest. Compliance is mandatory .... medications, diet, exercise and attitude are all important for recovery. I'm seen LVAD patients comeback quicker after transplant than many of us that did not have the VAD.

Bottom line is that the transplant is WORTH IT!!!

I'm at CCF just about every Wednesday, or you can contact me here.

I wish you both well.

~ Don

My father received his LVAD in August 2012. He just received a heart transplant yesterday morning. He was having bleeding complications with his LVAD and transplant was his only hope. I will let you know how the next two weeks go during recovery. Hope your husband is doing well.

Hi Don,

Your post was encouraging. My husband got his LVAD in march,2013. He's going to meet with the transplant team in Indianapolis shortly and I'm extremely worried about the process. Thanks for the post.

Dear Don, Husband has several appts on the 26th of this month at the CC.......It would be nice if you and he could talk. What do you think?? Let me know and I will talk with my husband. Thanks so much for answering my questions, although no one really knows, can only hope for the best!!

Dear Lisa,

How is your dad doing? Please let me know. It is hard no matter how we think we will handle the day to day touch and go of something that is so complicated. My prayers are with you and your family. Hope

Thank you. My father is doing very well so far. It has been a week and two days?? He is up and walking and feeling stronger every day. He actually just went in for his first biopsy. Our fingers are crossed!! He says that the LVAD surgery was much worse from the recovery standpoint. We are hopeful!

Lisa, Just wanted to know how all is going with your dad. Hoping all is going well. Prayers with you and your family, take care. Hope

Hope: Thank you for asking! My father came home yesterday! His new heart is doing wonderfully so far. He was delayed at the hospital an extra week because apparently during surgery they punctured a vein (or something) that was leaking. He looks very good and his color is back after a full year of being "off". He walked around our block last night and still had energy to go for another round! He is very shaky from all the medications, though. Its a trade off I guess.. one set of problems for another... He was very happy to get out of bed without unplugging himself, walking around without batteries attached and best of all (he said) a normal shower!!!!

Lisa

I am so happy for you and your family.....It gives me more hope than you can imagine.....Just wish my husband had a really positive attitude regarding the next step. Let me know how things go, know there is a weekly biopsy. Hang in there. The worst is really over!!! Prayers are with you! Hope

My father has had two biopsies so far.. both came back zero rejection! He will have his next biopsy tomorrow. I believe he will have one a week for a month before they start spacing them out a bit more. What hospital would your husband list at?

My father is really taking this as a second chance at life. He is so grateful that technology allows for him to live almost a normal life. Besides medication and some food restrictions he is much more "free" than living with LVAD.

LISA,

WE ARE AT CLEVELAND CLINIC, AND I AM SO SO HAPPY TO HEAR ALL IS GOING WELL. I WILL TELL MY HUSBAND ABOUT YOUR DAD'S ATTITUDE. I THINK SOMETIME IT MIGHT BE NICE IF HE COULD TALK TO MY HUSBAND. HAS NOT HAD MUCH ENCOUNTER WITH HEART TRANSPLANT PATIENTS. THANKS FOR SHARING....KEEP ME UPDATED! HOPE

Hope: I saw your recent post about your husbands set back. I hope he is hanging in and he gets his new heart soon. My father also had issues with his lvad and was failing. He was moved to IA status and everyone kept telling us his new heart would come in time and to have faith... and it did. My father is doing extremely well. its been a month and 1/2. He is walking 4 miles a day and feels really good. If you or your husband would like to email him and my mother they would love to talk to you. Names are Richard and Angela and email address is aspinelli117@yahoo.com.

Dear Lisa, You have just given us so much more encouragement, knowing that things can turn around.....I am looking for the rainbow at the end of this nightmare. Did not see anything posted recently and had thought of you and your family. Am so glad all is going well. I will tell my husband. I am sure he would love to talk with your dad. Thanks again Lisa, Hope

Just an update, my husband is not doing well, and even though he needs a heart, with lvad failure, he has so become increasingly...weak....I only ask you pray for him, as we all know, this is a temporary solution to the real issue....HEART FAILURE......OR Maybe I was just too optimistic...either way, It is what it is... a temp solution to a devastating illness.....

I am sorry to hear your husband is not doing well. Unfortunately, LVAD is not always a long term solution for a terrible disease. I will keep praying that your husband receives a heart and can recover. I see first hand that a heart transplant can give life back to someone who seems to have no hope. As with everything, there are no guarantees but it can be a long term solution. My father is still doing very well. He is still walking miles a day and working full time (started working the day after he was released from the hospital!). It is great having my dad back! I never thought it would be possible as sick as he was. We are waiting on his last bi monthly biopsy (to check for rejection) and after that he will be only going once a month. My father received your husbands email and will be calling him today. If you receive a phone call with (914) area code it is my father. My mother would also love to talk to you as she was sitting where you once were and knows all the feelings and stuff that go along with watching someone you love go through this. Again, I will keep your husband in my prayers.

Lisa, gave my husband your dad"s number and they talked today. Your dad sounds so nice, and, my husband really appreciated him calling and taking the time to give him reassurance. I just got home from the clinc, and he had a bad day today with xrays and all. I can see the strength being zapped from him. We are very grateful for your prayers. Realizing it is in God's hands at this point. I will talk sometime with your mother. I know that would help me, since no one outside of this disease, with all these issues, would truly understand.

Thanks again for reaching out. Hope

Just to update.......My husband has not had the luck of getting a heart transplant, even though he tried to do all they asked......He has gone to another life, so to speak...with no more worries. I wish you all well, for there is a lot of positive outcomes with lvads, but not for us. Love and hope for all, Sheila

Sheila: I am very sorry to hear this devastating news. My family has become active in donor awareness as so many people need transplants and there are not enough donors. Again, please accept my sincere apologizes for your loss. Lisa.

Shelia, please tell your husband that the transplant itself has very few complications.  "As long as he follows the Rules"

My background was IADC 7 years ago followed by a HMII installed in 2013.  I was diagnosed as DT and not BT.  The LVAD worked well for me as it kept me working and traveling the world while working.  Then came the infection Pseudomonas.  Beat down once than came back with a vengeance.  This was beaten back using Phage therapy, but had taken a major toll on what was left of my heart.

I received my new heart last August 2018, and was able to come hope after 2 and a half months.  It is now the end of March and I have had ZERO infections and ZERO signs of rejection.  How did I do it well that was the easy part.

Mask up all of the time for the first three months at home, gloves on all of the time, limit my interactions with areas where there are crowds or lots of little kids, ( little kids are germ factories ).  Long sleeve shirts and long pants.  Cuts and scrapes wiped and bandaged asap.  Meds on schedule, (period !!!).  GET UP and GE OUT.  the faster you are up and about, the faster his recovery.

There two downsides to the transplant.  One he will be taking Prednisone.  It is a very strong anti-rejection drug,  And it has bizarre side effects.  It does effect your mental well being.  While taking this, he must remember that this is only for a little while; no matter what goes through his mind.  (Like feeling he is actually Mary Shelly's Monster).The good thing is that as the months progress his dosage will decrease and eventually stop.  I have gone from 30+ pills a day to 18

And the other, please excuse the french, (but ahh crap) he's alive and will continue as a normal person for a number of years.  I have often thought and spoken to my xplant team about why no one outside of our circle of friends and family really don't care that we had the xplant.  Then it dawned on me.  Yes we are exceptional and yes we are still here and we are now back to what the world sees us as.  Just plain old normal folks.  And that is part of living.

As to being listed that is wonderful.  Now patients.

Looking to buy used wall unit for my Lvad heart mate 2 . you can call me at 570-758-2987 or email     kennewman529@gmail.com

Thank you for allowing me to reach out.

My HeartMate II LVAD pump stopped in Jan 2021.  I wouldn't hesitate to take the heart.  I had bumps, Mini Stroke (TIA) 15 days after transplant and first morning at home.  It was from clots in my heart getting to my speech center in my brain.  Resolved with heparin drip and Apixaban.  Just had first rejection episode but caught early. Three large doses of Prednisone and increased Tacro and Cellcept, 30 hours in hospital.  Was allowed to take last two large doses at home as i tolerated first one well.  Biopsy clock starts again, every week for awhile, first one Wednesday to confirm rejection over.  I walk 2.5 miles daily, and swim again.  You will have to work at getting healthy, but you won't regret the chance at a better normal IMO.