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sheila k. Caregiver

heart transplant

husband is going to the top of the list for one, and just want to know if anyone who reads this can give advice regarding post heart transplant. May never happen, but he is having second thoughts regarding all involved and complications....Thanks for listening, Hope as always

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Don P.

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

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Lisa M.

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.

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sheila k.

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!!

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Lisa M.

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!

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Lisa M.

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!!!!

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sheila k.

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

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Lisa M.

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.

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sheila k.

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

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Lisa M.

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.

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sheila k.

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

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sheila k.

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.....

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Lisa M.

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.

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sheila k.

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

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sheila k.

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

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DAVY H.

Would you be willing to tell me more about why he did not get a transplant? Text me at Cell: 214 718 7512
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In reply to by DAVY H.

sheila k.

Device broke July2013 and too late to do anything...went into total heart failure within a month and died Aug. 2013....Hope if you getting a lvad all goes well...it is such an adjustment...but worth it if you can get a heart. Sorry about the inconvenience of getting ahold of you.
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DAVY H.

Oh I am so sorry for your loss. You texted me and I did not remember who on here I had messaged. I wish I knew more about what happened. Did he have hoops to jump through while waiting and then machine broke? If you don't' feel like discussing it, I understand. I do appreciate that you texted me a response. There is a film company in Finland that wants to do a documentary and find family members they can interview who don't mind being filmed. If you want to speak with me about it more, feel free to reply on here or you can text my phone at 214 718 7512. When you texted earlier, it did not show your name Hope, it just showed your email and I could not remember who you were. Sorry. Thanks again for your response.
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Kortne A.

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