IamA Heart transplant survivor, AMA!

What did they do with your original heart?

They do an autopsy on it and then it's burned with hospital waste.

I would like to keep it if it was me.

They never gave me the chance.

Yeah, like Clob said, were you allowed to keep it if you wanted?

No, it was never offered or spoke of. It's kind of a serious environment and they don't deal well with requests.

Hey. I'm a heart transplant survivor in the UK. Had mine 30 years ago and still going strong. Just wanted to wish you all the best. How long were you hospital?

Congratulations! Good for you.

I was in for about 16 days after transplant. I was a mess when I left.

I was 10 when I had my op back in 85. I think its a lot easier for kids to bounce back, they don't dwell on stuff so much.

Agreed! Congratulations!

Are you now a donor?

I've always been.

Unfortunately when you are a recipient you can't be a donor because of the damage the immunosuppressive drugs do to organs

Interesting to know!

What is something that you can do now that you couldn't do before that makes you thankful to your donor?

Walk, leave the house, take a shower, dress myself, travel, basically lead a normal life.

That's amazing. All the things we take for granted.

I know! My whole life is entirely different now.

I have heard some people who have received major organ transplants feel like a part of the soul of the previous owner of the organ joins them. Have you experienced anything strange like that? Like feelings, emotions, or memories?

Also, what was it like "Dying" and being brought back to life? Did you go into the surgery thinking that it was quite possible you would die and never again wake up? How hard was it to go through with the proceedure knowing that?

I have experienced slight changes in food cravings and I have had more 'surface emotions.' Truthfully, I liken these changes to the two major surgeries, anesthesia and life renewal than to any other thing. My donor was very different from me. He was 25 and a sports hero in is town. I'm 52 and very bookish. Sports are not part of my life.

Regarding the feeling of my life ending, it all happened so slowly that you kind of got used to it. By the time a heart became available, I was so desperate that I would have let them put a monkey heart in me. I wasn't very scared... more excited I guess.

I'm glad you understood what I was trying to say with the first part. Glad you have a new lease on life!

Thanks!

My brother recently took his own life. Obviously this has been very difficult for me and my family, but we have found meaning and comfort in the fact that all of his organs were viable and able to be donated to those in need.

How did you come in contact with your donor's family? Was it strange or difficult for you to meet them? Do you have any advice for me if I have that chance?

I'm so sorry, I lost my older brother the same way.

I used the organ bank to deliver my thank you letter to my donor's family. This TV spot they did on us should answer all of your questions. If not post your new question and I'll take a shot. https://m.youtube.com/watch?v=tHIKe6jFNTg

What were your symptoms?

I started having trouble sleeping. I would wake up in a panic. I later found out that my heart failure was causing my lungs to fill with fluid. They found blood clots in my heart and I was pumping at only 15%.

Any idea as to what caused the heart failure at 52? Overweight? Bad diet? genetics?

It was 100% genetic. They did the testing. I've always led a clean life (which helped me get listed.) They're VERY selective regarding who gets listed.

Oh wow - that is truly unfortunate.

Here in the U.S. donors are hard to find so recipients are put through extreme social, financial, support, legal and criminal background checks.

Wow, the U.S. restricts heart transplants according to factors beside health? Isn't that basically eugenics?

It's not really a "transparent" system, but if you're a heavy drinker and smoker without a solid support network, and there's another recipient waiting who is "clean" .... they'll choose the non-smoker. This is because organs are really hard to come by and the hospital's want the best outcome. However, I know a drinker/smoker who got a heart transplant and she totally fucked it up.

Wow, I did not know that. So someone who is a convicted felon, or maybe has a bad credit score, etc..., might be up the creek? I guess then that if your family has a history of heart disease, you might want to keep your nose clean....

Bad credit score would be a red flag but not automatic denial. Criminal record would be almost always a no go. Keeping your nose clean is a must. Getting listed is like getting in to Harvard.

Having a criminal record does not necessarily prevent a patient from receiving a transplant. It's different for each hospital and program.

Correct, but it is a huge factor. Do you remember the kid who had a criminal record and the hospital didn't want to list him, but public pressure made them and he had heart transplant at 15? He was later killed in a high speed chase with the cops. I think it was in Detroit.

I got listed and the LVAD on a really bad credit rating (10 yrs of a severe health issue builds up bills quicker than most people can pay them).

That's good. Do you know your status on the list?

This is a serious question. I have trouble sleeping as well (well, getting good sleep anyway) and constantly wake up in a panic with my heart racing. Was your blood pressure always normal? I'm going to go see a doctor as soon as my insurance comes through, but seeing your similar symptoms is alarming.

And yes, I realize it could be a million other things as well :l

My sleeping issue felt like a panic attack. I'd have to get out of bed and sit on the couch. It scared me pretty bad. I was a wreck. Then I'd have a good night and forget about it. Here's a test... next time you're woken up by this, try taking a really deep breath. See if you can get oxygen into your lungs. Congestive heart failure won't allow you to.

Now that you have had a heart transplant, is your current heart transplant-able to another person?

I don't know for sure, but I don't think it is because they use a little tip of your old heart to sew on to the new one. I suspect that this ruins the new heart from being transplantable.

Is this to help bypass your immune system and increase acceptance?

No, it's actually done to speed up the transplant. If you cut ALL the arteries, you have to individually stitch them back, but it you use the top 1/2 inch of the old heart, you only have to stitch that on.

Did you get to see your former organ after the operation? How long was the road to recovery?

No, they don't even discuss it. I've always wondered how some people got their pictures taken with their heart.

Probably wouldn't have hurt to ask.

Agreed

Did you ever doubt you would live or find a donor? I have heard many stories of people waiting years for donors and some of them sadly passing.

Yeah, but it didn't occupy my mind. I used to have little mini panic attacks, but my wife held me together. I have a very large support network and I never felt alone. Long stays in the hospital were the worst. You find out what you're made of when you're waiting for an organ.

Hi there, congratulations on your transplant and ongoing recovery. I'm just curious, where you are from (i.e., country)? I study transplant systems and would like to hear your highlights and lowlights from your particular jurisdiction. Thanks.

I'm in the Boston area in the U.S. It was a three year ordeal, so the highlights and lowlights were many. The worst was 11 months on the LVAD. The highlight was hearing that a donor heart was available.

11 months on LVAD? That's amazing. I didn't realize ppl stayed on them for so long. And congrats! Sounds like your new heart is strong and will take you far.

Thanks, yeah some people do really well on LVAD's and have them for years. They are horrible, but they do the job.

My father has been on LVAD for about two months and is waiting to get a heart transplant.

This thread makes me feel better about the whole situation.

I'm glad you've recovered so well!!

Thanks. Be patient with your dad regarding anxiety or having a short temper.

This may sound really odd to ask. But my best friend was in a tragic accident and donated many organs including his heart. I'm taking a shot in the dark but would you mind telling me if the heart came from New Jersey?

No, mine came from Maine. If your best friend's family receives a thank you note, they can establish contact. Here's my story. https://m.youtube.com/watch?v=tHIKe6jFNTg

That was truly touching. How special to make that connection with your donor's family.

Thanks!

I'm a grown ass man and that 3 minute piece made me cry unabashedly. Best of luck to you, and I hope that the bond between your family and the mother of the donor is comforting to everyone involved.

Thanks!

Small town paramedic here.

We just had a patient move into my area with an LVAD. He's coming to our monthly training in a couple of weeks to help us get to know his device. I got a sneak peek of it last week and the whole setup is amazing. However, his device has no manual backup. If the batteries die and there's no replacement he has a 15 minute backup. He also has a bag he carries with emergency wall/car plug-ins. How was your LVAD in comparison?

Yeah, mine was similar. I had a wall unit that I plugged into overnight. I had two batteries on my that share the load. I had two more batteries in my travel bag along with a replacement computer controller. It would have taken a really rare event to leave me without power, but it can happen. How well you do with the device off depends on the condition of your real heart.

Good part of the country to be in! Have you had any financial complications along the way? Has your insurance coverage been comprehensive and cooperative?

Yeah, I have private health insurance from my employer and they've been great. Honestly, this is because a heart transplant is instantly understandable. If you have an autoimmune issue, they deny everything. I estimate the whole prosess at $5.1 million.

Do you remember anything as you were under? Maybe a sensation of dying or a euphoric phenomenon?

No, but I have flashback of feeling something like a dremell tool on me.

That sounds terrifying. I mean I can't even handle the feeling of pressure when a dentist drilling into a tooth for a filling!

It's not fun.

What is your favorite dinosaur?

I'm all about the horned Dinos!!!!

How does it feel to know someone else's beating heart is in your chest?

I ask because my Friend was a heart donor, and it broke my heart reading about the post where they were able to listen to their sons heartbeat in the lady's body that he saved.

Such deep feels..

This should answer your question. It's my story on TV: https://m.youtube.com/watch?v=tHIKe6jFNTg

There is no love like sacrifice, I am glad you got a second chance! Live long and prosper

Thanks, you too!

I'm really happy for you and your family!

Why did you need the transplant?

My dad is a transplant survivor and brother died of a genetic heart abnormality at 26.

Wow! I'm sorry.

My reason was a genetic condition that started in 2012. It's called hypertrophic cardiomyopathy.

Have you ever had an EKG or an echocardiogram?

Same disease.

I have them done once per year

So you have it, but it's under control?

I have always been clear of any issues, I get them done every year for my parents' sake.

Good! It really sucks!

Boston area here, same condition, but not nearly as serious... Mine mainly messes with me on stairs and whatnot.. But have had panic attacks off and on since I was diagnosed... Glad to hear you got your heart, sounds like you're taking good care of it... Wishing you many years of good health!

Boston area too! I had my care and transplant at B&W's. What hospital do you go to?

I'm at Tufts, with Dr. Maron... I'm doing okay so far, but it's scary as all get out, that's for sure.

I have a couple friends there. They seem to be doing very well. It is scary. I wish you the best.

Hey there! 2 time heart transplant kid here- age 20, if you need any tips-I've been doing this for 10 years so just PM me. As far as questions go- did you ever have to be on ECMO?

Wow! You're on another planet! Thank you for the offer. I might hit you up tonight.

No, I somehow managed to avoid that machine. The LVAD was as exotic as I got.

Do you feel under pressure to never do anything unhealthy, like eat junk food?

Yes! But I'll have a chip now and then. I can never eat deli sliced meats or sushi because of bacteria. I take about 60 pills a day. However, I can actually have a drink (just one a day.)

Is your stomach super sensitive? My uncle had to give up coffee after his bone marrow transplant.

Yes!!! It's awful.

No sushi!? Really???

Yeah, it's raw protein. It is full of bacteria.

Last month I forced my husband to go to the doctor because his legs were swelling and he was having a hard time breathing. We found out he had congestive heart failure at the age of 34. It is part genetic, part undiagnosed diabetes, and a virus back in January that caused everything to accelerate.

We are in the waiting stages right now but we have been told that he will eventually need a heart transplant. We will know for sure in about 6 weeks or so when they do another EKG and send him to Vanderbilt hospital. He has completely forged new habits now and is doing an amazing job of following the doctor's orders.

That being said, if he does have to have a transplant what advice do you have for us?

Exactly what he's doing now. These doctors are amazing at reading whether someone is serious about getting healthy or not. It helps if you can go to as many appointments with him as you can. Getting to know both of you really helps them. Make sure he understands that he will feel great soon. Here's something for the two of you to watch. It's me meeting my donor's family. https://m.youtube.com/watch?v=tHIKe6jFNTg

We went to our first cardiology appointment last Monday. The doctor was ecstatic about how well he was doing. He had bad edema and venous pooling and now that is completely gone! He has also dropped about 35lb (a lot was fluid but not all of it). I'm really proud of him. I'm sure he is going to be happy to know he is going down the right path. It's really scary for me but being able to talk to people who have gone through it have really helped us.

That's great! He can do it!

My uncle just had his transplant a few months ago after dealing with CHF, so I have an idea of what you went through. He was diagnosed around six or seven years ago, and along the way he was put on an artificial heart. Just a couple weeks before his transplant, his son was diagnosed with the same condition, and since then has also been placed on an artificial heart at the age of 22. Now the fear is that my uncle's other kids, and my cousin's own son, are affected by CHF. Same with my mom, and myself and my sisters. I had an EKG the other day that came up fine. But the fear is still there.

So my question is, have you had to go through this with your family? Was there ever any signs that you would be affected by this?

I'm so sorry, that's rough!

Yeah, we tested both my kids and my older brother. All negative so far.

Are you looking forward to having a robot heart in the future?

Na, I'll stick with the organic style.

Did you have to be on some waiting list ? How big the list if so ?? Gl with your new organ.

Yeah, I was listed for a year and a half - very short wait here in the U.S. My area of the U.S. is usually 3 to 5 years. There are 2,000 heart transplants in the U.S. per year and 3,000 people get listed during that same time so there's always a spill over.

Do you have a pacemaker? I have a buddy of mine that had a heart transplant and uses a pacemaker. Don't know if you have one too. P.S. I'm dextrocardia and only have one half of a heart so I know what you have been through.

Wow, you're a rock star! Seriously!

I had a pacemaker back with my old heart, but not now. It saved my life twice.

What was the cause of your heart failure? Did you have an undiagnosed congenital condition?

It was genetic ant it was hypertrophic cardiomyopathy. That means that the walls of my heart became really thick and my heart enlarged to pump. This brings on clots and poor blood flow.

Have you any children and have they been tested for the condition?

Yeah, I have two and they've both tested negative but they have to go once a year to re-check.

What is your opinion on the prohibition of an organ market? Also, how did you cope with the uncertainty that accompanies placement on the wait list?

I understand the restricted nature of the list. If everyone were an organ donor, there would be no reason to restrict transplant from anyone. The uncertainty was awful. Lots of stress, lots of anxiety etc. you have to be very strong emotionally.

My sister's boyfriend also has a heart transplant. Kick ass for making it through. How long will this heart last do you think?

Currently, the longest living heart transplant is 32 years and going. That recipient was transplanted at 6 months of age, so we should really get a feel of what's possible through her success. The average life extension is 12 years, but that includes people who die right away and others who are 29 years out. I'm hoping for 20+ years.

I can't remember how long it has been for him i think over 10 years. To make it 32 years from 6 months is amazing. Congrats again sir. How are the transplant drugs doing for you?

They are really rough. I'm a guitar player and my hands shake to the point where I can't play. I small price to play!!

Did you use the heart of one of your enemies? If yes, did you gain their strengths after the transplant?

Yeah, I got Dick Cheney's re-transplanted heart and I can now control billions of dollars overseas!!!

Did you have an artificial heart (VAD or TAH) before transplant?

Yes, I had an LVAD for 11 months. It kept me alive, but it wasn't living.

I am an artificial heart engineer. Which LVAD was it? Can you tell me some about your experience with it like showering, power management, complications, etc?

Welcome! You guys are the best!

I had the HeartMateII with the new controller with the display screen. I responded very poorly to it, but I knew it was keeping me alive. I had one VAD-induced stroke, but fully recovered. The issue I encountered was needing to be at a low RPM. I was in the 8,000 range and had bad blood flow. I got very sick wen they turned it up. I had to replace the controller twice in 11 months. I wasn't able to drive because I was so compromised. I could only walk about 100 feet with it.

I used the shower bag to shower and that worked well. My wife was an absolute angel and did my wound care and helped me with the shower prep every night. I never had a driveline infection, but all of my LVAD buddies did.

Let me know exactly where your questions are and I'll do my best.

Heart Mate 2 had a higher incidence for stroke :( but Heartware has GI bleed. I know what you mean about low rpm, that always freaks us out but is often necessary. What was the stroke and recovery like? Did you ever feel like a badass cyborg, or just get annoyed when others thought it was cool?

Yeah, it was kind of cool. The stroke happened in the hospital while I was talking to a nurse. I suddenly felt unable to speak or use my limbs. She knew instantly. I slowly returned to myself ofer the next 30 minutes, but my speech was slurred for a couple of days. Now I'm fine.

Have you ever meet the donor's family? if yes what happened?

Check it out. https://m.youtube.com/watch?v=tHIKe6jFNTg

What was your interaction with respiratory therapists?

It was tough because you see them when you're at your worst and it is really difficult/painful to give them what they need from you. I hated my trips down to see them because I would leave all blown out.

I take my respiratory boards Wednesday. I already have a job at a cardiac icu at a major university. I did my clinical rotations at another cardiac unit at a university hospital. I really enjoy seeing the patients come back and say hi! I hope to help lots of guys like you get a new lease on life!

You guys are heros. Here's something to lift your spirits. It's me meeting my donor's family. https://m.youtube.com/watch?v=tHIKe6jFNTg

Was your situation anything like from the movie John Q?

Never saw that. What was the premise?

Whaaaaaaaat!?

Yeah, totally unknown to me.

I'm curious, how long does a heart transplant last? Like isn't there a limit on how long that donor's heart can go for?

It's beginning to seem that in the right conditions, it could be 40+ years. However, the average is 12 years.

What is the current state of anti-rejection medication at for heart transplants? Do you have any problems getting a reserve of the medicine in case of emergencies?

Keeping my prescriptions filled is a lot of work. I take 3 main anti-rejection meds. Prograf, Cellcept and Prednisone. They're awful and have crazy side effects. They are very good at keeping rejection down.

How does it feel to have someone elses heart as yours?

Here's a good explanation. It's me meeting my donor's family. https://m.youtube.com/watch?v=tHIKe6jFNTg

This might be a weird question but what is your resting heart rate with your new heart?

Your original nerves from the brain to the heart are severed during transplant. They grow back over 2 to 3 years, but in the beginning, it beats wildly fast. About 90 to 95 BPM.

Are you tired of getting Tin Man items from The Wizard of Oz? (my grandpa never got tired of getting them. His whole office was full of Tin Man paraphernalia).

My grandfather lived more than twice as long with his transplanted heart than his doctor originally estimated :)

The tin man stuff did get a little odd.

What was the reason for you requiring a transplant?

I had a genetic disease called cardiomyopathy. It causes the walls of the heart to thicken and pump less blood. Eventually the heart enlarges and it's all down hill from there.

Well I'm happy it turned out fine for you, good luck with the rest of your life!

Thanks!

How does it feel to meet the family of your donor? My mother had a heart transplant a few months back and I often find my self thinking about the family. Wondering if they have any idea just how grateful my family is for every thing.

Here it is. This is me meeting my donor's family. https://m.youtube.com/watch?v=tHIKe6jFNTg

Congratulations! You are an inspiration.

My father just came home from the hospital today after 5 months of recovery from LVAD placement and subsequent complications. We are so, so excited to think about the day when he can be in your shoes following a transplant.

What is the most important way that family members can give support during this process?

Be patient with him, he will be scared. Whenever he goes to clinic visits, try to have a family member with him. Keep a log of upcoming appointments and a log of his prescriptions. Keep an eye on his anxiety level, guys tend to hold that in. Help him use the parts that go along with the LVAD - like the shower bag and battery belt.

You mentioned you take 60 pills a day. Is that temporary or will you have to keep that up indefinitely?

I'll always take 3. It will take me about two years to get down to that.

have any doctors recommended omega3s for your heart? and what do you think about eating fish and omega3s for heart problems?

Not yet.

Hey I'm on the transplant list. Not so critical yet but most likely will have to. How was the recovery? Are you able to do your usual stuff now? I'm rather excited to get a new heart as the one I have isn't functioning well and I have no energy to do anything.

I felt the same way! Yeah, it's great after transplant. You can breath and walk. It's kind of shocking. There's not too much pain. I left the hospital in 16 days and only on Tylenol. Recovery was challenging and I had a few setbacks - mostly getting pneumonia. But it's not very painful, but you need to take it easy. It's amazingly pain free. Best of luck to you!