On the first night of Christmas, a stranger gave to me...a new heart. IamA heart transplant recipient, AMA

So, would you say that last Christmas I gave you my heart?

​

Congrats and hope the healing process goes well!

I dunno, man, given what I know about this surgery, I'm not quite convinced you were the donor :)

Thank you for the kind wishes. It is going great so far, so I remain cautiously optimistic :)

The real donor will hopefully see this post and know you're happy! Hopefully he is enjoying his new heart; in my mind donors have a donor and it's a long train of healthy people trading off organs with the sick person being the caboose and some random dead person being the first car.

That perspective is not one I've heard before, and I actually kind of like it. Too bad about that first guy, though :)

I just want to say that I'm really happy for you. :) Volume 2 of life!

Thank you, I really appreciate that. Volume 2, indeed!

But the very next day your new heart was fully accepted by your body and it was the first day of the rest of a long healthy life.

And they all lived happily ever after :)

How do you feel about your donor being anonymous? Do you miss or grieve for wanting to thank their family? Or is it a relief?

I am ok with the anonymity, to be honest. I cannot imagine what it is like to be a family member of a donor. There is an organization that will allow me to write them a letter, also anonymous, and if they choose to respond, then that could very well open the door for a meet-up down the line. That would be very, very difficult, but I would love that. It would be their call.

I. AM. A. DONOR. WIDOW. Let me tell you, when my husband died it was the only thing that gave it meaning for us. (at the time) I think I can safely speak for a LOT of families when I say that we want you WELL. We want you HEALTHY. And we want you to know that we REJOICE in your precious life.

I have no idea what to say to this except I am weeping.

Thank you so much for reaching out. I think there is a concern on the part of a lot of recipients that the donor families will somehow resent us. I know that does not make sense, but it is very real. Personally, I plan on living the best life I can, both for me and my loved ones but also especially for my donor. I think about my donor and his/her family all the time, and the amount of gratitude I feel cannot be measured.

People...if you are not an organ donor, please consider becoming one. To say that it is the greatest gift you could give someone does not even come close. People are dying because of a lack of organs, and that just should not happen.

I'm over here weeping too. I am just SO happy for you. I've been with a LOT of donor families, and I've never heard ONE word of resentment or regret. There was a show a few years ago called "Three Rivers" based loosely on the University of Pittsburgh's (UPMC) organ procurement team. A line that one of the doctors said has stayed with me. He was talking to a family who were divided over whether they would allow their loved one to be a donor. He said to them, "I've never had a family regret saying yes, but I've met a lot of people who regretted saying no." It is SO TRUE. Dr. Starzl, of blessed memory, performed the first heart transplant there. He did the first transplant at the Pittsburgh VA hospital when I worked on the cardio-thoracic surgical unit. I SAW it. There was a lottery of 32 tickets and I won one. I was in the theater above watching. (because I'm a geek). When he placed those paddles on the side of the heart and it started? I cried like a baby. And the (separate) surgical team with the donor was just so respectful and kind and treated the donor with such gentleness that it made an absolute impression in my heart FOREVER. Since I was 16 and signed my first donor card, I've always had this fire in my belly about organ donation. When I was 24 & saw that surgery, I was convinced. When I lived in Israel I joined ADI (kind of like the Israeli UNOS) & saw donation percentages go from 1% to 10%. It's now closer to 15%. Still fighting that battle! All of us are organ donors. My three sons are, too.

Wow, that is a remarkable story, and it is incredible that you actually saw the first transplant in Pittsburgh. Crazy!

My wife and I have already had this discussion. We both are of the same mindset that if we are in a vegetative state, after a long enough time period given for recovery, and there isn't any chance of waking up to pull the plug and have the doctors salvage whatever organs they can. We won't need them at that point so why not give as many people as we can a second chance at life? My wife is a type O- so she'd DEFINITELY be in demand

O-? Your wife is a real unicorn! :) I am A- so that makes things a lot easier for me. And yes, I am on the same page as you, pull the plug and give someone else a chance

Oh she's a Saint for a lot of things. Putting up with me as her biggest child (at times) is a big one. I readily admit that I am kicking beyond my coverage / punching above my weight with her. She's great though and blames me for having to get a shot in her ass whenever she's been pregnant so that her body doesn't do any nasty things to the baby due to the blood type differences as I'm B+ I believe

Well, if that is all she blames you for at this point, you are a lucky man. I am punching well beyond my weight, as well. :)

I watched a news item were the donor family met the recipient and they all wanted to listen to their relative's heart beating in the recipient. They were all joyfull to be able to do so.

There a lot of youtube videos you can find searching for "relatives listen to donor heart."

My mom has had two heart transplants, and we’ve coincidentally met both donor families. Shoutout to my mom’s second donor, she would have turned 29 today! Her family has so graciously had a relationship with us, I’ve always been so blown away by that. Celebrating big life events feel hard to post about on social media when we know they’ll see them. It’s a weird feeling of knowing they’ll be happy we’re able to spend these moments with our loved one, and also grieving all over again because they cannot.

SERIOUSLY, please everyone, sign up to be an organ donor. We’ve had 20 extra years (so far!) with my mom because of donation.

Your mom is a real soldier going thru two of these procedures, she must be tough as nails. And happy birthday to her second donor, too :)

I would love to do that with my donor family. I think it would be incredibly difficult but incredibly healing for all of us.

It’s very much both of those things. I hope your physical healing continues to go well, you’ve been through so much. Thinking of you and your donor!

Thank you very much. It has been quite the ride, I am glad to be on another path:)

Agreed. To add to your statement, please look into becoming a living kidney or liver donor. Why wait to help when you can start now? It's an amazing feeling to be a living donor, and it's a feeling I guarantee you won't have, well, later. 😁

Absolutely agree, and well stated!

https://youtu.be/c1n5U0cGZSA

It's from the show court cam. Two people were getting married, and the heart donor recipient showed up.

Hoo boy. I am gonna bookmark this link but I am not sure if I am ready to watch it just yet lol. Maybe in a few months when I am not so much of a little flower lol

Save it for a rough patch

An excellent idea, thank you for sending it. :)

My mother was a lung recipient. When we received the news that she was going into surgery, we knew she was in good hands and we were relieved. My sisters and I gathered while we waited for the surgery to finish and grieved for the donor family and talked about how we wished we had some way to thank them. In their greatest moment of loss, they made the decision to help another family with the gift of time. My mother was able to see my babies grow into teens and I thank the donor family for every precious moment. Thank you.

I have such respect for donor families who are able to make this kind of decision at the worst moment of their lives

I am a donor widower. I just got a letter two days ago from the recipient - a man who can now see again thanks to my wife’s generous donations. He is expecting his first grand baby and he is so excited he will be able to see her.

I am keeping his letter and will be showing it to our boys when they’re old enough to understand.

Honestly I have never signed up for organ donation. But apparently my wife had done so 5 different times. And now that I have have seen just how much impact it has I’ll be signing up for organ donation too.

I'm so sorry you are having to through this loss, but I hope the letter you received helps your grieving process. Are you considering writing back?

I can only imagine how proud your boys might be when they read the letter, that makes me happy.

Thank you for signing up for organ donation, sir. It is so important, and I can only hope that many more come around to it.

Did they give you any info at all? Age/gender?

Congratulations. Really amazing story :)

The only thing I heard, and I should not have even heard that, is that the donor was young. I did not hear an age, just that the donor was young. I really am curious, though, and I hope I can connect with the donor family.

And thank you :)

If they were young, the likelihood of the family wanting to have something good coming from the death is likely significantly higher. I knew someone who's 17 yr old son died from a drunk driver. After pulling herself together to be able to function again, she talked a lot about how his death helped others and it gave her a lot of meaning in her grief to know he has helped others live and became a staunch advocate for organ donation. It's probably one of the few things that let her go on.

I think that is a common reaction to a lot of donor families. Making the decision to confront it must be awful, but I can only imagine it is very healing, too. I think it really opens a lot of eyes up to the importance of organ donation, and as I stated in a previous comment, I think it should be mandatory across the board.

I'm an organ donor. I would leave myself anonymous because I don't care if my organs go to a "good" person or a "bad" person, just a living one. That's the point, so I don't wish for someone "deserving." Because of that dice roll on who is the best fit if I am in a position someone needs my organs more than I do, I would instead hope for a kind letter to reach out to establish contact. People are people, I would rather kindness repay itself than put my name vainly on charity to have kindness given out of guilt.

I am, too, or I was before this happened. I have not heard anything from my docs that says I cannot be a donor now. And yes, I agree completely with your views regarding anonymity. It is such an intimate and private thing, the whole concept of organ donation. I think it should be between the recipient and the donor family and it is nobody else's business.

My husband is soon going to be on the recipient organ list. What did your number 1 caretaker do that made your life easier or better? We're both feeling like we have NO idea what we are doing with the SDI paperwork and work notes and things, I feel like I should be doing more to help my husband.

​

Any advice to someone who made it through to those just starting? Thank you and happy recovery!

Thank you! I think the biggest piece of advice I can give to either one of you is to remember who it is that you married and to show heroic doses of patience and kindness. Caretakers go through their own journey, and it is incredibly stressful: cooking, all sorts of errands, (no driving for 3 months!), and a million other things that can make a day really hard.

I am not sure what to tell you about SDI, as I was fortunate enough to have a great health plan. My BIL had to have a kidney transplant about 15 years ago and jumping all those SDI hurdles was no walk in the park.

Thank you. We are also GREAT on the healthcare with our work plan, it is just the time off from work payments that I am stuck on due to the hospital stays and days off with the testing. So many tests.

Yeah, it is all the extra shit beyond dealing with the illness itself that adds so much stress. And yep, sooooo mannnny tests. At one point, I had so many needle marks in my arms, I looked like a junkie.

And the bruises! My husband had bruises all up and down his arms from his last resort stay at Club Cedars-Sinai!

Good Lord, yes. My arms are just now getting back to normal. This pic is post-procedure, it is the bruising from them having to open up an arterial line. They must not had much success because it seems like they just took a crowbar to my arm to get it in there. This fucker was the source of my greatest pain thru the first month of my recovery, whch says a lot given that they cracked my chest open. A week later my entire forearm was black and blue.

https://imgur.com/mXCXROa

Congrats on your new lease on life!
Can you imagine trying to explain how you're alive to a doctor 150 years ago? Science, man.

Thank you! And yeah, I think about that often. I had a conversation with the doc who was in charge of my AICD and he said that if this had happened even 30 years ago, then we would not be having that conversation. Science, man, indeed!

This may be a weird question, because it's kind of hard for me to articulate what I'm actually wondering. But does it feel more like "my new heart" or more like "someone else's heart that's in me"? And do you think it would be different were it not anonymous?... Is it ever somewhat disconcerting to think that your heart used to be in somebody else?... Also, obviously, congrats!

No, it feels like "my new heart" most of the time. I do think about the donor a lot, though, and that can tend to get pretty emotional. I think it would be VERY different if it was not anonymous, absolutely.I think that would inflict a lot more mental anguish on both sides, so I'm glad it is the way it is.

And thank you!

How are you doing?

I am doing pretty great, thank you! Don't get me wrong, the first month really sucked - crazy fatigue and weakness (I lost a LOT of weight) and one of the anti-rejection meds causes some pretty intense hand tremors which makes it difficult to write, hold eating utensils, or drinking glasses, but that is all temorary. But my docs say that I am well beyond the bell curve in terms of recovery; the heart is showing zero signs of rejection so far and all my blood work is coming back great. And none of my other organs are showing any damage, either, so far, and that is something I was really worried about

May you live a long and happy life, sir.

Thank you kindly, I really appreciate it. I am gonna do my best :)

happy dance

You made me think of Snoopy

https://i.imgur.com/HUpO7yD.gif

Which medication caused the tremors?

It is an anti-rejection drug called Prograf, also known as tacrolimus. My dosages will get tapered down over the course of the next year, so it is a temporary thing. But it still sucks. It saps the strength from your hands and arms and makes it almost impossible to hold anything steadily for more than a few seconds. But this will fade, so I am lucky. I have a dear friend who has Parkinson's and he is never going to get better. I think about him whenever I am having a nice little pity party for myself and then I shut the hell up about it :)

I'm surprised you didn't mention your ribs. As one who's never had open heart surgery or a transplant, the broken ribs would seem to be the most painful part of the process. Many years ago, I had a skiing accident where I merely fractured one rib, and I'm wincing right now remembering the pain.

Wishing you many more decades of joy with your loved ones.

I have had broken ribs before, and yeah, they hurt like a sonofabitch. But here is the crazy thing: I have experienced almost ZERO pain due to the chest plate being split open. And honestly, it just does not feel like any ribs were broken in the process. I know what that feels like, and I just do not feel it. From the pain standpoint, this recovery has been super easy: no chest/rib issues, no coughing issues, no lung issue, no nothing. I cannot explain it.

Do you have any new feelings, emotions, or intangible draws to things you didn't have before the transplant? Like a piece of the donor is now in your personality?

Not at this point, no, it has only been just over a month and my body is still trying to heal itself and my brain is trying to process the events of the past few months. Funny you ask that, though, because I think there is definitely some anecdotal evidence out there that suggests this might be a legit phenomenon. As things settle down and I can leave the whole fight/flight dynamic, I would be very interested to see what happens

I was about to come here to jokingly ask you if you were paranoid you were about to start having your body possessed by the personality of the heart donor as per the movies - didn’t know that there was anecdotal evidence of this lol, what have you heard? Obviously also good luck in your healing!

I have not really heard more than that, nothing specific. According to one of my nurses, one of the big research hospitals is actually seeking funding to do this exact study, so you gotta figure it has come up enough to get their interest.

Man, as someone who had cardiac ablation for VT when I was like 18, I had no idea this was a potential path it could've taken. I remember it like it was just one of those things that happens sometimes - my heart went nuts occasionally because of some silly electrical issue and they fixed it, no big deal.

Yeah, it is just a matter of time if you keep having these episodes that your heart muscle just degrade and it cannot do its job.

I'm really glad your ablation fixed the issue. Mine did, too...until they didn't lol

Do you find your staples getting caught in fabric like when tossing and turning in sheets or putting on a shit? Those things look gnarly man!

Edit: Not correcting the typo

Duuuude. Yeah, sometimes I scrape them against my shirt and it is not that comfortable. The worst so far is when I fold my glasses up in the top of my shirt and it just scrrraaaaapes down the staples like a damn xylophone. That is not a good feeling.

I get the staples out in a week, though, so not so much time left

Avoid wearing zippered sweatshirts without an undershirt. 🙄

You said it. For the moment, I am wearing my oldest, softest t-shirts and if I have to go out in the cold, I have some unzippered stuff I put on over those. :)

They look pretty rad though!

And the ladies do love scars :). I was thinking about getting a nice sleeve tattoo on one of my upper arms showing a multitude of the gods of rebirth and redemption from religions around the world (which makes me laugh because I am an atheist!), but now I am thinking that with scars like these, who needs ink? :)

I will probably still do it, though, just because I love the idea and the artist I want to do it is chomping at the bit.

What is the expected lifespan of the donor heart?

If it's not "for the rest of your natural life" how does that affect you, mentally?

As time goes by and the technology and science get better, the lifespan increases. I am reading about people who have had their hearts for 25+ years. Because I am younger and healthier (vegetarian/vegan for the past 20 years) than most recipients, the odds of my surviving for longer are much greater than for them. I have zero other underlying medical issues and that will only help down the line. Plus, I am committed to keeping to the protocols for the anti-rejection meds, and I know that going off that protocol is one of the top reasons rejection happens.

I am so short into the process that I have not had time to really think about it. I do get quite emotional sometimes just thinking about the whole journey, and once I am more healed up, I will definitely be going to therapy. I don't think you can go thru this process and NOT have some sort of PTSD. But for now, it has not really manifested outside the occasional and very random bouts of crying for no goddam good reason lol

Allow yourself to feel the FEELS. Therapy is awesome. You'll have waves of emotions hit you out of nowhere, and you may even have to grieve your donor. It's ALL okay. ❤

100% this. Every word is truth. You are right, it really is ALL okay.

Are there any side effects to anti rejection meds?

Most definitely. It lowers your immune system so you are more susceptible to stuff down the line like certain types of cancer at worst. Also, I am on a steroid called prednisone which can cause crazy weight gain, that fat chipmunk face that you might have seen online before, and something the docs optimistically call "mood swings". That basically means that everyone near me has to prep themselves for my being an unspeakable monster on occasion. BU they have me on a low enough dose already that they do not think the weight gain or chipmunk face will manifest. As for the monster part, I already wrote a letter to my partner and told her to read it if that ever happens so she remembers who I actually am. As my dose gets tapered down to nothiing, that should disappear.

Oh yes, I am well informed of prednisone and the wonderful effects it brings! I take it sometimes for inflammatory bowel disease. I was curious if there were any other medications specifically for that. Make sure you get ya bones checked!

Oh, I am on superhuman doses of calcium, so I think my bones will be ok. They should be, those damn pills are so big they look more like suppositories and I have to take FOUR of them a day.

Thanks for the answer. It sounds like you have a really positive outlook, and a long, but good road ahead of you. Best of luck!

My pleasure! I try to keep positive about it; after all, I got a damn heart transplant and those do not just fall off the backs of trucks. And thank you :)

So glad things are going well for you after your transplant :) how much notice did you have you were going to be transplanted? Like how long were you on 'the list'?

Well, I was at the tail-end of my evaluation process when I started having crazy symptoms. So they said get to the hospital and be prepared to stay until the procedure. They were able to get me placed pretty high up on the list due to a procedure they performed called a balloon catheter in my aorta to take pressure off the heart and help me breathe, which I think was technically listed as life support although I was not ever sedated afterwards.

I was in the hospital for three weeks when I got the call. About 5 hours later I was bing wheeled into the OR and that was that. Everything happened very, VERY quickly and it took both me and my partner by complete surprise. She was actually visiting me when the call came, so we could talk it out and process it together. I got incredibly lucky, a three week wait time is nothing, it is not uncommon for people o wait in the hospital for 6 months.

It’s called an Intra Aortic Balloon Pump (IABP). Basically it helped push blood through your heart so it didn’t have to work so hard.

Boom, that's what it is called, thank you!

The balloon pump is no picnic. You have to lie still in as horizontal a position as you can comfortably be. I managed to cheat a little and get some incline to the whole bed so my legs were a little lower than my head and then raise the end of the bed up a little so I could at least see what was going on. And given that the catheter for the balloon goes thru the femoral artery in your groin, you have to keep whatever leg is on the side of the incision completely immobile. Ultimately, I had them put a big removable brace around my leg to make sure I would not move it in my sleep. Not fun!

My husband was on ECMO for 9 days with femoral catheters. I completely understand. He had those braces on both legs because one of the meds they had him on was making him jerk occasionally.

I learned a lot about the various circulatory support devices in the 5 1/2 weeks he was in the CVICU. There were a lot of people in there who were either waiting for heart transplants or had just gotten one.

Oh, man, ECMO is no walk in the park! I hope he is doing OK now. And yes, I was surrounded by people who were either waiting or in post-op recovery. they do a banging business up there lol

He's doing better now. He had a STEMI, spent an addition 4 weeks with an RVAD, but from a cardiac standpoint is doing okay. The brain injury from going into cardiac arrest is the bigger issue at this point, but all things considered he is doing pretty well.

Yes, the possibility of my having brain damage was actually quite high, and if you ask my friends, the jury is still out on that. :)

Glad to hear he is doing better. Every situation is different, and they are all crappy.

What happened with your old heart post transplant? Did you get the option to even see it afterwards?

No, no option to see it, sadly, and I was rejected in my request to keep the now-obsolete AICD (they removed it). I wanted to use it as a paperweight :)

I think both were destroyed as hazardous medical waste, but I'm not sure. I'm surprised that I never asked that, now I will have to lol

Quote: "I think both were destroyed as hazardous medical waste, but I'm not sure. I'm surprised that I never asked that, now I will have to lol."

They were. RN here. Those rules and regs are a real pain in the 🤬.

Yeah, I figured. Can't exactly throw it in the dumpster.

OK, everyone, listen up. If you ever have the misfortune of being hospitalized, the smartest thing you could ever do is to be kind to and patient with the RNs and the technicians. They are the ones who actually run the show, and they have been saddled with some of the most thankless duties imaginable. If you have loved ones coming to see you, tell them that they should not even think of walking into that hospital without a box of cookies or a pizza for the nursing station. If that sounds like bribery, well, maybe it is, but dammit, they deserve it and more.

I chewed the ass off of many a doctor during my stay, and with good reason. I was in a teaching hospital, so students performed a lot of the more minor procedures. So I became completely unaccepting and vocal about unnecessary pain, and let the doctor have it when warranted. And I went even more down that path when, after hearing about that unnecessary pain, a very senior doctor looked at me and said " Well, I would apologize but what good would that do?" And I just let him have it, and it felt soooooo good. It is true what they say...you have to be your own best advocate, because nobody else will be.

Sorry, total tangent. Be good to the nurses and technicians, they do not deserve any more bullshit than they are already dealing with.

Awwww...now I REALLY ❤ you! 😉

Back at ya, nurse :)

Agree totally as a heart failure patient with only two years experience. I'd agree to the point where I'd say this statement belongs in an edit in your original post maybe even.

Buddy.

Guy.

;)

Niiiiiice. I lived in Chicago for a while and was fortunate enough to catch him live. Some of the best shows I ever saw, and I have seen some great ones. :)

And yep, nurses fucking rock. :)

My dad is a bone marrow recipient who is now alive because of a live donation of stem cells. We have nothing but praise for the donor who has remained anon. But 10 years ago he saved a life by something so simple. I always wonder how his last 10 years have gone and I'm grateful it was a live donation, and someone didn't have to die to save him, but I understand that from our transplantee friends that we've all made because of it, that that is often the case (death for a new life)

What do you hope to be doing in 1 year, 5 years, and 10 years time?

If it fails, will you also go through it again?

(not that I wish it to fail, but sadly there is the chance of multiple transplants, for those who aren't aware of the first transplant leading to more in the future if unlucky.)

So happy for your dad. And yes, all priase to donors, I think it should be mandatory, to be honest. The pool for organs of any kind is so small that a lot of people simply die before they can get the transplant. Such a shame.

In a year, I hope to be fully healed and back on my path. I am a musician and have not been able to play my instrument since before Thanksgiving, and I am really missing it. In 5 and 10 years, well, I honestly have not thought that far ahead. I do not think I can really afford to. I have to deal with the present as much as I can and getting thru the healing process. I do know that living in the rat race holds absolutely no interest for me anymore. That is really all I know about the distant future.

If it fails? I would absolutely go thru it again. It is not common but it does happen. I spent the past 7 years fighting to live when I should have died multiple times over and now that survival instinct is even greater. My friends just call me too dumb to die, and honestly, I do not really disagree with them. :)

From what I've heard to even be eligible to receive organ donations, you have to be mentally strong and undergo pretty serious psychological tests before undergoing procedure.

Could you say something about the mental aspects/testing you experienced? (if this applied of course, the mental requirements might just apply to certain countries.)

Not as much psych testing as I thought. The whole experience, even though it has been incredibly traumatic, has toughened me to a degree I had not thought possible. As I mention in other comments, I have my moments of little breakdowns, but then I shake it off and get back to the business at hand of getting my physical strength back. My mantra is basically "this is not what breaks me", even though sometimes I think it might.

There was no real mental testing, really, just conversations with psychologists, etc. They went pretty deep and I ended up divulging a lot of deeply personal information

Thanks for the response. I can't imagine how hard it must have been to keep your spirits up, you seem like a crazy strong human being

Thanks so much. My friends and family say I am pretty damn tough, both physically and mentally, and that feels good, but keeping my spirits up has not been a walk in the park. There were some very dark days pre-transplant when I was just in the hospital waiting, and I really had to take a measure of myself. But I knew I had the support of friends and family, even if they could not really come to visit, so that made it easier to deal with

Hi , did you have a chance to listen to your new heart ? I wish you a speedy recovery ! It's crazy what humans have accomplished in medicine if you think about it .

Yes, I have! The crazy thing is that my 'new' pulse and blood pressure are both considerably higher than what I had over the course of my whole life. In those moments, it can feel weird, as if they actually did a soul transplant and put me in someone else's body who looks exactly like me, but I listen to my pulse and it is pretty amazing. I did not realize how far down the path I had gone until now. I knew I was ill, but dang, I really cut it close.

And thank you!

Do you know if the higher HR and pressure is because of your current condition and your body recovering from the stress of the operation or does the ‘new heart’ just happen to run at a faster rate lol?

I think it is that the new heart is just going to run faster and in a more healthy manner. My BP was clocking in kind of high, around 145/92 or that area, and they increased some of the meds so it is now down to a more manageable level. My pulse is now generally in the mid-90s and they say that it what it is going to be moving forward. That part is really strange because pre-surgery, my pulse was artificially placed at 60 by the pacemaker. If you turned it off and let it go to its natural pulse, it woud have been under 40. N good!

I am a fellow heart transplantee as well 👋🏾 Almost at my 1st second birthday 🎉 The 1st year is CRAZY!! ... CRAZY!!

I did not get any of those life extenders that you had. How did it feel having all of the devices to help you along and did you think you would ever get to the end point of transplant?

Congratulations on your anniversary :)

It was a mixed bag, to be honest. I know that while having the balloon implant made sense, I also suspect that another reason they did it was to get me high enough on the list to be put into the game. Without the balloon, I would have been Tier 4 (out of 6), but having the balloon put up at Tier 2, and once that happened, things moved quite quickly.

I was prepared to wait for months, to be honest, but I never fully thought I would make it there it really knocked me for a loop when it was only 3 weeks. Talk about being pulled from the abyss...

I was born with heart disease and have been told that a heart transplant is in my future at some point. I had open heart surgery as a baby, and just had my first ablation last week. It’s been rough.

Do you have any advice to someone who might be starting down their own ‘seven year journey’ towards a transplant?

Thanks for all this great information! Best of luck to you, friend!

Do the docs deem the ablation as successful? I know it is really too early to tell, but do they have any opinions. I'm sorry it has been rough for you so far. None of this is pretty and none of it is easy. I would suggest getting into mindfulness meditation, it has helped me a lot. This will test you mentally as much as it tests you physically, so it is good to prepare for the possibilities beforehand

I would say just be kind and patient with yourself, for starters. If you do end up going down that road, it can be a long and very lonely process. Practically speaking, I would make a little go-bag specifically meant for those times where you might have to go to the hospital with very little notice. The two most important items in that go-bag should be a sleep mask (you can see mine on top of my head in my pic) and those wax earplugs that you can mold to your ear. Books, paper, pens, phone chargers, stuff like that.

I hope that helps. Let me know how your ablation plays out, won't you? It might have done the trick, it is just hard to say soon after.

Were you awake for the ablations and if so, how freaking weird is that feeling? Cause like, I had one (mine was a heat one) and man, it’s trippy as shit. I can’t think of words to describe it.

Yeah, it is very trippy, you said it. I was semi-awake for the first one, in that twilight haze as they call it, and maybe for the second one, too, but I do not really remember it. I remember having a whole conversation with one of the techs about Tim Tebow (this was 2015).

What was even trippier was coming down off the anesthesia drugs after the transplant. I was basically tripping balls for 4 days straight. Crazy dreams, both sleeping and waking. It was insane, waaaay more trippy than acid or mushrooms. I would be ok to not go thru that again.

Does the donor have to remain anonymous? If so, why? Would you like to meet the family of the donor?

Yes, because of privacy laws, both of us have to remain anonymous. I will get the opportunity to write them an anonymous letter, and they are free to either respond or not. I think it is pretty uncommon to get a response, much less meet in person, but I do have that hope.

I scrolled through a bunch and can't seem to find the answer so I'll ask! Did they ever figure out what exactly was causing you to have all these cardiac episodes? It seems like they did pretty much everything under the sun to fix it. Re did the electrical, bypassed electrical, plumbing, and pretty much everything else. Is there an almost guarantee that these types of episodes won't be coming back? Did you basically just have a crappy engine from the factory and it was decided a new engine was the only way to fix it?

My transplant docs did a genetic test on me and discovered some genetic markers that indicate the exact condition I had. In fact, I asked my docs if this road was inevitable from even so many years ago and they all pretty much said yes. I like your metaphor, too...yep, it was just a faulty engine right out of the factory. But now I have a new one, and it purrs like a goddam kitten :)

Were you scared that you wouldn’t wake up after the surgery? What were your feelings going in?

No, not scared at all. I was either going to wake up or I wasn't, and if I wasn't, I would never know. My feelings going into it were coldly rational; the past 7 years have been such a shit-show and have caused such incredible trauma to me and my loved ones that my attitude the previous few months had pretty much been "Enough already, let's fucking do this."

Wow that is absolutely amazing!! Godspeed

Crazy seven years, for sure. Thank you!

[deleted]

Wow, really? Congratulations to you, I guess that makes us both Christmas babies!

Staples come out in about a week, so that will fel like another step behind me.

[deleted]

Absolutely. Getting those staples out will be a huge psychological lift for me. Big milestone!

How did you mentally handle so much cardiac treatment without apparent success?

My partner had an AICD implanted 5 years ago after a single freak SCA, but hasn't had a major episode since that one (excepting one inappropriate shock). I can't imagine having to watch him go through 60-70 shocks, more arrests, and all the traumas and tests you've endured over such a short time period. You are a survivor. I'm very happy for you. If you don't have your COVID vaccine yet, I hope you get it ASAP!

It was very, VERY hard, not gonna lie. You do what you have to do, especially in the middle of a life-threatening crisis, and you deal with the mental fallout when you are safe again. Lots of meditation, for sure, and I did a lot of acupuncture to deal with the stress and anything PTSD-related. If I could drink, I probably would have done a bit of that, so it is a good thing that I stopped lol.

I also stopped being optimistic, and I think that was a smart call. Starting to feel good for a few months after these procedures only to have things turn pear-shaped out of the blue was absolutely heart-breaking. So I adopted a 'wait and see' attitude and just tried to take one good day at a time.

Congratulations to your partner, sounds like they found the right solution.

Do you know your donors family? Are they anonymous or have they reached out? Congratulations by the way :)

Edit- missed the last line where you say it is anonymous! In that case, I’ll ask what has been the strangest reaction from a family or friend about the surgery?

No problem lol. Someone else asked a question about anonymity that I will answer in a few minutes, so keep an eye out for it :)

I have not received any strange reactions from family/friends. It has been a 7-year struggle to get to this point, and they are all used to crazy shit happening to me. Everyone has been incredibly supportive :)

I have very similar symptoms - well documented, have teams of cardiolists etc and have an aicd as well for the last 13 years. Your symptoms are strikingly similar , mind letting me know your dx?

My original diagnosis in 2014 was that I was given the AICD to treat ventricular tachycardia. As time went on and things got worse, that change to a fairly general diagnosis of cardiomyopathy, and then in December 2019, that was changed to congestive heart failure

Glad it's working out for you! Keep hugging the pillow!

Oddly, I never had any chest pain. As in...none. I never used the pillow and actually left it at the hospital. Don't ask me to explain that, because I have no explanation :)

I am glad you have had good luck with your AICD :)

When did it occur to you that you needed to express honest concern with your partner? How long were you aware of your symptoms before you decided together that it was time to look for help?

This has been an incredible share and so emotionally educational. Thank you so much for sharing!

I made her immediately aware as to what happened from the very first horrible episode in 2014 (we were in different cities when it happened) and I have never withheld anything from her in terms of prognosis or episodes since then.

As for seeking hepl, well, I did not have that option. Once the episode in 2014 happened, I was pretty much thrown into very deep waters and had to figure out how to navigate it. There was simply no time to think about what was happening until after the AICD was implanted and was released from hospital. And even then, I kind of wandered around in a bit of a daze wondering what the exactly the hell kind of buzzsaw I just walked into. It was surreal.

And thank you, this AMA is actually very cathartic for me, I'm glad ohers are getting something uot of it, too. :)

How is your heart rate now? Are you stuck at 100bpm or have you seen regeneration of the sinus rhythm?

For me, it feels high, but my docs are satisfied so I am not really gonna stress it. It will pretty much be in the mid-90s moving forward, and I get more used to feeling that every day. Which is waaaaay better than those days when I could barely feel it at all, and even then, it was slow and sluggish. Right now it feels like a race car engine at idle, just waiting for the word to go. :)

Has your attitude towards life changed in any way after the operation?

Not yet, no, although once the recovery gets easier I fully expect to be able to devote that mental energy to it. It makes my will to live stronger, yes, but the first few months of this recovery are so tough that it is really all I can concentrate on. I really do look forward to putting that work in, though :)

Congrats man, very happy for you. I hope you have some good doctors taking care of you. Are you a bass player?

Yes sir, I am. What was your first clue lol? Do you play?

And thank you very much. The hospital where I got the transplant is one of the tops in the country and they have a world-famous heart program, so I am definitely in the right place.

Glad you're doing well!

I'm very late to the game on this one, so I doubt I'll get an answer, but it's worth a try. One thing I've always wondered about organ transplant recipients is what the long-term lifestyle repercussions are after receiving the transplant. Are there certain things that you will no longer be able to do, eat, drink, etc? Obviously receiving the transplant, and therefore being able to continue living, far outweigh any of the possible negative consequences of a successful transplant, but I've always wondered about that. Also, will you be ok immunosuppressants for the rest of your life, or are they tapered off after you show no signs of rejection?

There are definitely some long-term things I have to be wary of. I can't really be on construction sites nor should I be in places that are particularly dusty or moldy. The only cats I can be around are indoor only that have tested negative for toxoplasmosis (sp?), and I should avoid birds for some reason, as well. Fortunately, there are no restrictions on dogs :)

As far as food goes: no salad bars, no buffets, and no sushi. Which sucks, because I looooove sushi. I am not really a meat eater, but if I choose to have some animal protein, it cannot be rare and can have just the slightest pink on the inside. For the moment, I am on a low-potassium diet, which is very frustrating., but that will change.

Of all the meds I am currently on, and that is a lot, the ones I will be taking the rest of my life are the immunosuppressants. They will all get tapered down, and there is a good chance that I will be off the prednisone for good by the end of the year, but those meds are for life.

I have heard stories of people who received organs having new cravings and memories from the donor. Has this happened to you in any way?

Several people have already asked this, but no, I have not experienced this. YET. :) I am concentrating so hard on my physical recovery that I am not really thinking about it. PLus, I am on a crazy cocktail of meds that are causing all sorts of oddness, so it would be tough to say until I get these meds tapered off.

BUT...I certainly am open-minded to the possibility that once things settle down, perhaps those changes might make themselves more apparent.

Hi, OP. Your story is so inspiring and heartwarming. I can't tell you how happy I am for you. I'm a youngster but now I want to be a donor when I'm a little older, too.

What I wanted to ask was, how were you so brave during the course of those seven years? What kept you going despite the fact that your heart nearly bailed on you so many times? A lot of people I know would not have had it in them to persevere.. they'd have given up some time in between. And one last question, how did you manage the nerves before your surgery? My grandpa was scheduled for a bypass surgery, but unfortunately, the night before, his heart gave in to the fear and he passed away.

Anyway, I hope you take care and live the best life possible. Wish you the best.

I think you can become a donor as soon as you get your driver's license. Or at least, that is how it is in the US.

To be perfectly honest, I did not feel so much brave as defiant. I had plenty of meltdowns when it got to be too much, as my partner can attest to. In those times when things were relatively quiet, I just tried to live my life as normally as you can when you have a loaded pistol at your head 24/7. My friends and colleagues all knew the deal, so they gave me space when I need it and treated me normally when I needed that, too.

As for nerves, I wrote somewhere on this thread that by the time it happened, I was so fed up with everything that had happened in those 7 years that my attitude was basically "OK, enough already, let's just fucking do this". I was in the OR maybe 4 hours after getting the call, so there was not much time to process it enough to be scared. Yeah, there was a chance I would not wake up, but I would never know it. By the time surgery came, I was cool as a cucumber and ready to get it done.

I am so sorry to hear about your grandfather, that must have been horrible news. I hope your family is doing OK.

In your opinion was these health problems rare or not, if not how do u prevent it?

These types of health issues are actually not as rare as you might think. I have read studies that claim that VT and/or VF are responsible for perhaps half of all sudden cardiac death in the US. That translates to about 300,000 people a year. In all honesty, I probably should have died back in 2014, but my heart was very strong at the time and could withstand the trauma.

As for prevention....I honestly have no idea. Between diet and activities, I had a really healthy lifestyle before this all happened; I was the las person you think of to have heart disease. But there you go. My situation was genetic, and there ain't no beating the genes lol

Do you feel some new needs ?

The only needs I really feel right now are all about getting stronger every day, getting my weight back up, and getting thru this first year of recovery. Maybe when this is all over I might feel something from my donor; maybe all of a sudden I might love eggplant, although I really hope not lol

I really am open-minded to the possibility of taking on some of the personality of my donor. There are enough stories I have read that would suggest that it is very possible. But my plate is way too full to think about that right now. :)

How were your daily chest x-rays?

You mean my 4x/day X-rays? All clear, every single one, my lungs are in great shape. And they still are. Actually, none of my organs are showing any kind of residual damage, and that was a big concern of mine.

Side note...the lungs are BIG, y'all. Mine extend up above my collarbones and down below my belly button. Way bigger than those simplistic medical models of the organs make it seem

So with certain transplant patients, there is a rumor that you might get memories or dreams from the donated heart. Have you gotten any?

Not yet, but I am still early on. In an earlier comment, I wrote that there is enough anecdotal evidence in transplant patients to possibly warrant a legit study. I honestly kinda doubt it, but I hope there is some truth to it just because it would be fucking cool.

This is truly a miracle. Science wow, have a good life man. My question is, how old are you?

I am not one to throw that word around, but yeah, miracle is a good word for it. I do not know what else to call it.

And I am 54. Pretty young for a heart transplant, although it happens to even younger people, as well. Let's just say I do not fit the profile at ALL. Except for having, you know, a bad heart.

Do you have any psychological trauma from your previous complications? Panic attacks, etc.? Thanks for sharing your story!

Not so much panic attacks, but I definitely experienced a huge increase in anxiety in certain situations: exercise, loading into a music venue for a gig, the dread of something happening onstage in the middle of a gig, and others. I never really had issues with anxiety, so I did not feel like myself for a long time, but I think as time passes, that anxiety will diminish and I will get back to myself.

Hi! My question is how are you doing and were there any lingering complications from the surgery?

My step father passed away in 2009 from brain damage complications caused by the surgeons waiting too long to put his new heart in during his transplant in 2002. I was ten years old when the surgery occured and he had been married to my mother for 2 years, and had previously been a wonderful, loving man who was incredibly kind to us, and the damage caused his personality to shift drastically, often being violent with me, all the way up to his last two months living where he did his absolute damndest to make amends. Heart disease is such a serious issue, emotionally, physically, and mentally, so if you feel like you are more winded by menial tasks or you experience any symptoms lasting longer than a day or two, please make yourself go see a doctor.

Hi, thank you for telling us about your step-father, that sounds awful for everyone. My father passed from Alzheimer's at the beginning of 2020, thankfully before the quarantine hit, and it was much the same way. He could be very sweet one second and then he would be a monster, especially to my mother. I actually had to physically separate him from her on more than one occasion, and it sucked. So I feel you.

I am doing great, according to the docs. No lingering complications so far and no rejection, and yes, I am absolutely keeping an eye on strange symptoms. I have come too far to get taken down by that. :)

Do you love this person now?

The donor? Absolutely. Both the donor and the donor family. It is a hell of a decision to have to make and I would not wish it on anyone.

Can you tell the difference? (besides all the health issues that come post-transplant)

Well, I do not feel any irregular heartbeat, that is for sure. And while my pulse is high y my own standards, it is steady and incredibly strong. I can feel my pulse in places I never could before and my hands and feet are nice and warm when they never were before

Immunosuppressant?

How do you mean? s in, am I on any? Absolutely, and I will be the rest of my life

Do you know what the two smaller upper incisions were for?

Yep! The one on my left side is where they removed the AICD during the transplant procedure, and the one on the right side is....well, damn, now I am drawing kind of a blank. With the ballon implant that you may have seen get referenced, it goes thru the femoral artery in your leg first, and then it is moved up to the pulmonary (?) artery on the right side. So it is either that or a specific type of catheter called a Swan-Ganz catheter

Medical professionals, someone chime in here and help an idiot like me remember why he has this damn scar on his right side lol. Sorry, it's late and I'm beat lol

Do you have to take azathioprine or a similar medication to prevent rejection? If so, will you be on it for life?

At the moment, I take tacrolimus, CellCept, and prednisone., all for organ rejection. They have already cut my prednisone dose in half in just 5 weeks, and they are tapering me off the tacrolimus a little more slowly. In theory, they will ultimately take me off the prednisone completely or have me on the minimum dose. Whatever I am left with will be every day for life

Who was the first person you called to tell the good news?

My partner was with me at the time of the phone call, so there was no need to call her. I called my mother, who was ecstatic. She lost her husband (my father) to Alzheimer's at the beginning of 2020 before the quarantine, so I know this news made her so happy. I think she is still riding on it lol

Do you need to avoid strenuous activities during your recovery, i.e. activities which raises your heart rate?

I'm imagining a situation like the Speed movie (except the inverse i guess), I hope it's not!

Hope your recovery goes smoothly and all the best in for your future

I do, yes, but it is less about causing stress to my heart than causing damage to my sternum and ribs (they had to crack my chest wide open) and the staples. I cannot lift more than 10lb for three months, and when you think about it, that is pretty much a bag of groceries.

Dang, now I have to go watch Speed again, I do not remember that plot point at all, I just remember how fine Sandra Bullock was :)

And thank you!

So did they remove AICD?

They did! With the new heart, it was no longer necessary and it does not make any sense to do an additional surgical procedure to take it out later. And boy, am I glad to be rid of it!

I worked in a pre op heart transplant unit. So many people have a very long wait. Have you every watched the movie "7 pounds"?....I bawl every.single.time...

7 pounds

I got so very lucky. I only had to wait 3 weeks, and I know people can sometimes wait for years.

Now I gotta put that movie in my Netflix queue. Hell, maybe I will even be able to get thru it. :)

Do you believe in cellular memory theory?

I feel like Mulder from the X-Files...I want to believe. I mean, muscle memory is accepted and documented and experienced by almost everyone, so why should cells not have their own memories, too? I really hope some good research into all that comes out soon, I am really fascinated to see what they find.

What happens to the old heart?

I never saw it, I am pretty sure they disposed of both it and the AICD as hazardous medical waste. I never asked that question, oddly, but now I am really curious

I think they usually incinerate larger...parts.

Yeah, I think so. My heart was definitely enlarged, and not in that nice way that happened to the Grinch, so I do not know what else they could have done with it

They incinerated it. Source: RN with cardio-thoracic experience.

As I figured. Thank you for everything you do, your colleagues where I was hospitalized/incarcerated were top-notch professionals. I am lucky to have met them.

Can you feel that you have someone else's heart? I mean, that's it's foreign to your body?

No, not at all. Sometimes it feels a little weird to feel what a healthy heart feels like (better pulse and blood pressure, and my hands and feet are nice and warm, which they never were before). But it just feels natural for it to be there. I never really knew what a healthy heart felt like, so I am glad to know now.

I never really got used to the AICD, but that was always present as a big bulge under my left collarbone. All the docs said "oh, don't worry, in six months you will not even know it's there." Which was BS, I always felt it. It saved my life more times than I can count, but it never felt natural.

Do you consider a hot dog a sandwich?

How. Dare. You!

Who in their right minds would consider that?

I'm a cardiac sarcoidosis patient, iacd put in and a largeish benign stomach tumour taken out in the last two years. If my heart falls behind where it is i may get to go through the Gates of Mordor experience you've been through, assuming i get lucky. At the moment my ejection fraction is steady at 25 or so, but my lowest pre-implant was eight. I'm 49 years old.

What were your ejection fractions over the years and how was the specific determination made that you would go on the transplant list? Was there some moment your cardiologists have you the nous and everyone knew?

Great question regarding the ejection fraction. For all of those interested, this link discusses what the ejection fraction is and why it is important. But the first paragraph of the link tells the story, I think:

"Ejection fraction (EF) is a measurement, expressed as a percentage, of how much blood the left ventricle pumps out with each contraction. An ejection fraction of 60 percent means that 60 percent of the total amount of blood in the left ventricle is pushed out with each heartbeat. This indication of how well your heart is pumping out blood can help to diagnose and track heart failure."

Anyway...my EF fell below 50 for the first time after about a year of episodes. From there i was a steady decline. After the cardiac arrests it was around 25, but I managed o gt it back up o 40. Then it fell to about 15, which is where it stayed until my procedure. It is back at healthy levels now. :)

The determination to go on the list was basically that without a transplant, I was gonna die. My doc decided to start the evaluations as soon as possible after our initial meeting.

Sounds like your own trip has been pretty rough, too. I cannot even fathom an EF of 8! I felt bad enough at 15! Sending you good vibes for being in the right place at the right time!

Thanks man! I've been part of the way down that "will i wake up in the morning, meh, it's of my control" road you've basically camped in, and i have those pictures of more black and blue than arm. Yet i was asymptomatic all the way, didn't even understand why i was stuck in the ICU bed for a week prior until i saw the guy wheeled in who looked like a pale zombie and he turned out to have an EJ higher than me. I felt fine, what's the deal man! You started punching me in the chest and wut, stahhhp, doctors.

Except you, cute one. Let's flirt.

I'm again contemplating going vegetarian or vegan at the moment because of this thread; thanks for a super interesting read. I take it your doc started the process immediately after your initial meeting.... not in 2014 but as soon as you got on the transplant list.

That road ain't no fun, none at all.

And yeah, it is so easy to convince ourselves that we are OK when we are seriously NOT OK. And it does not make sense when you are in that headspace to be told differently.

I cannot recommend a vegetarian/vegan diet enough. I have been doing it for about 20 years now, and I am absolutely, 100% convinced that it is the only reason I survived so many situations that should have killed me. Nobody will ever convince me otherwise.

How did you feel when you first woke up from the surgery?

Like 10lb of shit in a 5lb bag lol. It was insane. The first thing I remember is that they pulled the breathing tube out, and that felt like it was 4' long. And I remember thinking "Come on, you couldn't have done that 30sec ago?" It was NOT pleasant. The rest of what happened immediately after waking was just a whirlwind of craziness, everyone asking me questions which of course I could not answer because my throat was a mess from the breathing tube, lots of beeping and bright lights. They had me out for approximately 30 hours after leaving recovery. In fact, the next day, I was getting quizzed by a doctor on stuff just to check my mental acuity, and when he asked me the date, I was one day off. And he raised his eyebrows and asked me if I was sure. I just looked at him and said "Dude, seriously?" He let that one drop :)

My son is 16 months and has HLHS, which can lead to transplant. So my question is what does your medication and recovery look like? Both in the immediate sense, and long term?

Thanks for doing the AMA!

Well, I am only 5 months in, so my medications are very extensive. I am taking probably 30 pills a day. My doc says that by the end of the year that I will have been taken off most of them and I will be down to only 5 or 6. But those 5 or 6 will be every day for life.

Right now, the recovery is hard. The first couple of months can be kind of brutal. But I do feel myself getting stronger, my appetite is thru the roof, and I am starting to feel like I crossed a real threshold. In a few months, it will be so much better, and a few months after that...it is a day-by-day, two steps forward one step back kind of recovery, but you get there eventually.

Sending healing vibes to your son, it sucks that someone so young would have to go thru this

I won't lie, I was full on expecting your proof photo to be your first heart...congrats and sending you strength and good luck in your recovery!

I wish! That would have been kind of awesome lol

And thank you so much!

What caused all your problems to happen? Did something trigger it or was it out of thin air? Hereditary? It seems so wild to me to be totally healthy and then all of a sudden your heart is doing crazy things permanently.

My transplant docs did a genetic test and did discover some genetic markers for this condition. Without exception, every episode I had was triggered by some sort of exertion: exercise, moving my bass gear, sex (fun!). There were one or two times where booze was a trigger, so now I don't drink anymore :/

And yeah, very wild to be as fit as I was and then have his shit kick off. And you just never knew when. I spent years where I would close my eyes at night and wonder if I was gonna see the next morning. Not great for the ole psyche lol

So I have minor heart issues as well. I forget the medical term, but I basically get "extra" beats occasionally. No structural issues, thankfully.

My question to you is, what is your post surgery life entail? Is there any major lifestyle changes you have to take? Can you workout, drive, have sex, etc? Basically can you be normal now?

Everybody gets extra beats and they are no big deal.

Post-surgery life right now is very different from post-surgery life in a year. For the moment, there is no driving, no exercise beyond getting my legs re-conditioned, no sex. I do lots of leg exercises and I try to walk every day and increase the distance every day by a little bit. My life now consists of rest, exercise, food, and normal poops. Lucky for me, I can play my insrument (I am a bass player) as long as I do not try to drag my amp around, read, and the Internet takes my mind off a lot of shit, too. I pla a lot of online chess, which keeps my mind sharp, and duolingo is pretty cool. I am also finally taking a crack at PhotoShop, too, which is pretty cool.

So normal? Right now, far from it and that is OK. A year from now, I expect to be living as normal a life a one can.