IAmA 2-time heart transplant recipient, currently on the list for a 3rd heart as well as a kidney.

If you buy 3 do you get the 4th free?

Fingers crossed!

how much does it cost you to have a new implant, and does the price as a child differ much from your current one?

According to google, about $1.5 million. I'm sure it's higher than it was for my first two due to inflation and additional treatments. I support universal healthcare and having caps on profits for pharmaceutical and insurance companies, which I believe would lower the cost. If I weren't insured, I would not have been listed.

Not listed as in your choice or… you would have no choice you’re just not eligible because of insurance?

Hoping for your speedy recovery, thank you for sharing your story!

They would have denied me being listed at my evaluation.

Ok that is insane. I’m sorry! I can’t believe that in additional to medical reasons, you might not been eligible for insurance reasons. SMH…

Thank you for answering!

It's so upsetting. I think about all the resources and support I have, and I feel so grateful despite this shit situation. I can't imagine going through this without support and affordable healthcare.

How much did it cost you or your family personally though? I think that's what the question was asking.

For this one, my only cost that's not covered is cost of living for relocating to the city where I'm transplanted for 3 months, and finding a 24/7 caregiver. I am fortunate to have very good health insurance.

I don't know how much the first two cost my family, they didn't tell me because we struggled a lot financially and I don't think they wanted me to feel guilty about that. My mom did have good health insurance, though.

How long do you have to wait to get a heart? Asking for a friend... Also, I'm not sure if this is a stupid question, but are there robot hearts yet?

There are a ton of factors, but in summary there are 7 status levels and you're placed according to severity of current illness. I'm status 4, which at my hospital means an average wait of one year.

And I have often joked that I'm holding out for a robot heart! Alas, we're not there yet, but I hope that is in the near future. Pig organs also have a lot of potential, which seems weird and creepy but they're remarkably similar to us and could be used to essentially carry an organ tailored to the recipient.

Do you fear that after a third transplant you may need a fourth, fifth, more?

I hate to ask this, but how many hearts until you decide that your body just isn't up to this?

I ask, because my liver is not doing well, all my own doing. Taking that much paracetamol may not kill you but it will fuck up blood tests. I would like to think if/when the time came I would say give it to someone else, but I don't know if I will be strong enough.

I'm really hoping for an option other than a deceased donor in the future if my new heart fails again. I think there's some promising technology and that keeps me hopeful. Some days I feel like I'm not up to the challenge, but I want to live. Even being disabled and having all of the issues I have, I love life and I never take it for granted. I just wish there were more options for everyone needing a new organ.

Are the developments in mechanical hearts promising? I must admit my only knowledge in that area comes from TV drama.

According to my cardiologist, lab-grown hearts and pig organs are probably the most promising. Media representations of organ transplants tend to be pretty terrible (although I did love the House episode where everyone gets a rabies-infected organ, I think that has actually happened and they test for it now).

I read (a long time ago, so my memory is not great, but think 20 years) that pigs growing human organs was a very promising field of study, has it advanced to the stage of human trials?

There has been one attempt at transplant, unfortunately he died. I am so grateful for him, it's very brave to try such an experimental treatment and even though it wasn't entirely successful, his sacrifice with help the progress.

A hospital in my area recently did a fully mechanical heart implant, the first in a female patient. It's new technology, but impressive nonetheless. I would hope you could be considered a candidate for such a device, since you have had chronic organ rejection.

Story

That's awesome! I hope so too.

I random Redditor, hope your life is as long as you want it-and no longer-and you have the best family and friends all the way through.

Because you deserve it!

Thanks friend 😊 I’m blessed with a large network of supportive friends and family, and I have my partner of 8 years who keeps me optimistic about the future. I’m very lucky in that way!!

If you get enough transplants, will you eventually run out of fresh artery to sew the new organs onto?

Ha, I don't know about this one! Never thought about it.

How did you cope with covid and lock down? I imagine it would be very stressful being on immunosuppressors and all.

It was, although I think having a lifetime's experience of being extra cautious about germs and disease helped a lot. I also have access to extra booster vaccines and Evusheld, a monoclonal antibody preventative treatment. I always wear a mask and have managed to avoid it so far.

I’m doing a travel RN gig near Boston and we’re offering Evusheld. We’re also giving monoclonal antibodies. I love it and am glad to be helping susceptible populations.

I hope it's more widely available soon! I had no negative side effects and can get another round after 6 months.

I'm a cancer survivor who is pretty healthy and young-ish but I'm paralyzed by the fear of death. I assume you've had to come to grips with this. Any advice?

When I became disabled due to rejection about 7 years ago, it coincided with my dad being diagnosed with terminal cancer. He died after only 5 months. I worked with a therapist so I could come to terms with his death, as well as my own mortality. For me, talking about it really helps. I make sure my family knows my wishes so that they can advocate for me if I become incapacitated. I see death as a release from everything, and I try not to fear it, mostly I feel sad about my loved ones and how much it will hurt them. I had to cope with some guilt around that and learn that it's not my responsibility to manage others' emotions in case I die. But I have a very strong will to live!

Haha, I'm not crying. Thanks for sharing. I don't talk about it at all so that might be good for me. My kids are young and leaving them alone is the thing that scares me.

Seriously, thank you.

I can't imagine going through this and having kids, it must be so scary. I want to write a letter to my partner that he will see if I don't make it, maybe something like that could help you. Best of luck!

My partner had leukemia at 39 and we both thought she would recover, mainly because the doctors were convinced she would. We didn't plan for the alternative, we just kept an action oriented mindset and tried to make the best of things. At this point, you can tell she didn't make it, but it happened in the span of less than a week - going from hopeful to "there's nothing more we can do" and then she was gone. I wish I had a letter. I'm not trying to guilt you into writing one because I can't fathom the strength that must take, especially at a time when I imagine you don't have the strength for many things. That might be me projecting. Trisha was a great person and you sound great and full of life too. Anyway, I hope the best for you and your partner. Your story made me feel like sharing my own, which I don't do very often, but it brought up the feeling of "if I could go back in time" and I just wanted to say that I'll be thinking of you and rooting for you and your family. Thank you for sharing 💚

I'm so sorry for your loss, that sounds devastating. I wish you both had more time to prepare for her death, and it was probably so overwhelming to decline so quickly. I'm sure that if she had more time, she would have made it clear how much you matter to her. I wish you all the best in your grieving process.

Wish you the best. Out of curiosity because I am not sure how the procedere is , do you have a lot/a big star on your chest ?

Yep, and my sternum pokes out a bit because my lungs were cracked open at such an early age, and I received a large heart relative to my age. It took me a long time to love my scar, but I'm very proud of it and I think it makes me look like a badass.

What are your thought on donor compensation as a way to relieve shortages of donor organs? Iran has a regulated system of compensation for kidney donors and as a result has no kidney waiting list. But many people react viscerally against it. You have much more skin in the game than the average person, so I’d be curious to know your thoughts.

I guess I have mixed thoughts about it. I consider myself anti-capitalist and I don't think that anyone should donate due to poverty. My kidney will come from the same deceased donor as my heart. I think an opt-out system is ideal, versus our current opt-in system in the states.

As someone who will probably need a heart transplant eventually... How do you cope with being chronically immunocompromised in a post-covid world?

It's been hard. I had overwhelming anxiety the first two years of COVID, and then I got more sick and more immunocompromised. Frequent hand-washing and being careful about germs and contagions has been my reality for my entire life, so other than masking it wasn't too hard to adhere to those guidelines. I got an extra booster due to my status, and I'm eligible for Evusheld which is a preventative monoclonal antibody treatment. It's available to most transplant and cancer patients.

It's all about balance and risk assessment. I don't want to be a shut-in for what could potentially be the final year of my life, and I am fortunate to have a support system of friends and family who know to be extra careful around me. I've managed to avoid COVID so far, as have my housemates.

Hope all is well. Is your heart rate kept at a constant bpm as I think the vagus nerve is cut so it can't be controlled? How does this affect you with exercise emotions or sleep?

My resting heart rate is 115, but I’m used to it. I have very low stamina and have noticed that the higher my RHR the lower my energy. I’ve never slept well but I’m not sure if there’s a correlation. Mostly it’s annoying when I go to doctors appointments, the nurses are really alarmed and think it’s due to stress haha. I also have a very “loud” heartbeat, I can see my bpm just by looking down.

Thanks for the answer. Another question. Because of your situation are you offered any experimental procedures or medical devices? Or are there other options on the table that would cost a lot of money?

Not really, because experimental treatments usually go to a more typical patient or as a last resort. There aren’t a lot of transplant programs that will list me due to my high antibody count, so I have to seek treatment at a specialty hospital in another state. If I had been denied there I’d have been open to experimental options. Recently they performed the first transplanted heart from a pig. The recipient died a few months later, and I cried when I heard that. I’m so grateful to him for his bravery and contribution to science.

That would lead to another question. What's your view on both life and death? Coming from your situation?

I try to not take life for granted, as it was gifted to me twice. I'm a disability justice advocate and I believe that with the right support and I can live a fulfilling life even with the setbacks that I've had. I am not afraid of death - I think of it as a release from everything, good and bad. But I love my life and will continue to fight for as along as I can.

This guy's heart rate is off the charts. 1 is typical. 2 is rare, and 3 is almost unheard of.

Four hearts per lifetime is very high.

It is, but that's because most transplants are done in older patients. If you receive a heart at a young age, it is typical to need another one. The average transplanted heart lasts 14 years. The hospital I go to specializes in re-transplantation and dual-organ transplantation, so they have a lot of those cases. Also I'm a she :)

My badass uncle lived 25 + yrs with a transplanted heart. And I have a friend whose daughter has had two heart transplants. Like you, her first was when she was very young. I will be thinking positive thoughts about your upcoming transplant.

Thank you so much :) I'm sorry your uncle is no longer around (that's what your comment seems to imply, apologies if I'm wrong), and I hope your friend's daughter is thriving.

Would you want to keep any of your ex-hearts and were you given the option?

No, I don't wanna be haunted. I was offered to see it after my second but I declined.

Listen up man. The fact of the matter is this. You are about to the the 5 time 5 time 5 time 5 time 5 time WCW organ transplant recipient. You can survive this sucka!!!

Thank you! But I am a she :)

Do you feel guilty getting a third heart when there are those who will never get a transplant? I mean, even in baseball you only get 3 strikes... Here you are with a 4th. Would heart 2 or 3 have worked in someone else? Do you have any survivor's guilt?

Sometimes I do. It's an inherently flawed system when there aren't enough organs to go around. Everyone deserves a chance, and I wish we had an opt-out donor system in the states versus opt-in. But as long as my doctors are willing, I will keep fighting to live and advocate for universal healthcare, progressive new therapies, and organ donation education.

Are you undergoing dialysis now? Are the heart and the kidneys the same issue?

Not yet, but I will probably need to start before the transplant. They will come from the same donor, and yes my kidney problems are due to long-term effects of the transplant.

Feel free to DM me if you have questions about dialysis or kidney transplants. I was on dialysis for 7 years, and have had 2 kidney transplants. Happy to help.

Thanks so much. I'm prepped for peritoneal dialysis but I'm hoping to hold out for as long as I can. I will take you up on your offer if and when I am ready to start.

I’ve been on both peritoneal and hemodialysis, and also had a kidney transplant. If you ever have any questions, feel free to PM.

Thank you :)

What made your heart fail a second time and how long it's been working? Is it natural to expect or some underlying condition. Just wondering bcz i skipped my immunosuppression and that sent me to 2 week hospital trip. Still figuring if it did some peem damage on second heart

There isn't really a clear answer, on average a transplanted heart lasts for 14 years. I suffered acute rejection from unknown causes, I've always been pretty diligent about taking my meds. My medication load has tripled in the last year so it takes a lot of focus and management throughout the day.

Why do you need three hearts? Shouldn't you leave some for others?

Anyone who receives a heart at a young age will need another transplant eventually, as the average lifespan for a transplanted heart is 14 years. I follow the rules and manage my health well, so I was accepted at a hospital that specializes in re-transplantation. It's an inherently flawed system when there aren't enough organs to go around, but I have a right to seek treatment. I advocate for organ donor education, universal healthcare, and research into alternative solutions in the future.

Thank you for doing this AMA. Since your life is literally worth several million dollars, you've inspired me to think about the value of mine. My body is a high-quality product in perfect working order, yet I routinely mistreat it. I'm 25 and I've wasted the last 7 years of my life without even enjoying them. What do you value in life?

It's easy to take life for granted when you've been healthy, and good people make bad health decisions all the time. I encourage you to care for yourself, but at the end of the day only you are in charge of your life and health!

I have a lot of curiosity about the world, and I love to learn. I am a compassionate person and I find a lot of joy in connecting with others. I love my family and I want to be there for them and see my niece and nephew grow up. I have an amazing partner of 8 years, and I don't want to leave him. I love my dog, who is blind, and I hope to foster and adopt more special-needs dogs after I recover. My friends often turn to me for advice and mental support, and I'm glad I can give that to them. I'm just not ready to give up, although I've accepted that I may not survive this.

Why did you need a transplant as a child, cardiomyopathy or a congenital condition?

Restrictive cardiomyopathy, probably due to a virus.

I have idiopathic cardiomyopathy and they think it is from a viral infection. My EF was as low as 12 to 15% and I was placed on the heart transplant list. I had to wear a life vest and luckily the medicines worked and my EF is up to 45 to 55% miracles do happen!! Hang in there this isn't for the weak which I'm sure you know a lot better than I do lol

That's great to hear! It certainly isn't. This lifestyle requires a lot of diligence and resilience. Some days are a real struggle but I just try to picture my life one year from now, when I'll hopefully be back home and on my way to a full recovery.

That’s fucking scary. Sorry if that sounds selfish.

Btw are you also an “alien” cyclops or just a sewer mutant? ;)

Sewer mutant :)

This might sound stupid but What’s your favorite color, and why is it your favorite color?

Mines Grey because it goes with everything and reminds me of bunnies.

Actually this question is weirdly relevant! After being stuck in the hospital/recovery house in a different city for a couple months at age 12, I remember being in awe of how lush and green everything looked when I got home. So my favorite color is green 😊

How are you holding up, mentally and emotionally? You have a good support system around you? Really hope you're not kept waiting long, best of luck.

Since this will be your third transplant, do you know if there's been any advances that will help with rejection, or will this just be a continuous cycle for you, possibly (hopefully not) needing another in a couple of decades?

I have my good days and my bad days. It's been about a year since I got sick and I've been able to process and accept that this is my reality. I have a great support system, excellent insurance, and I see a therapist weekly just to vent and cry. I'm also on anxiety medication. I'm also very resilient because I learned very young how to take care of myself and be diligent about medication, check-ups, and germs.

I am hoping that, if and when this next heart fails, we will have moved on from requiring deceased donors. I talk a little about these options in my other comments. But I try not to worry too much about the future after I'm recovered.

What have some of the mental and emotional challenges been, and how did you push through them?

Anxiety about my health, COVID, and getting the call for transplant. I felt extremely depressed for a while after my hospitalization which led me to get re-listed. I still have bad days, but thanks to a supportive network of friends and family, a great therapist, and comprehensive healthcare, I'm able to stay hopeful and I try to enjoy life as much as I can.

What keeps you going instead of just giving up?

I love my life. I received two life-saving gifts and not a day goes by when I don't think of my donors. I felt really defeated when I got sick again, but every day I try to visualize myself post-transplant, living a happy life with my man and my dog. I have so much more to experience and I don't want to miss out.

Why the hell would he give up, what a stupid comment

not stupid, also I'm a she.

At what point arw you disqualifies from new organs?

A lot of hospitals would not list me due to my high antibody count, so I have to seek treatment at a center that specializes in do-over transplants and dual organ transplants. They have a very strict vetting process and require comprehensive insurance, 24/7 caretaker support for at least 3 months post-transplant, verification that I and my caretaker can afford relocating for that time period, a psychological evaluation, recommendations from my hometown cardiologists, no history of drug use, no history of medical noncompliance and skipping medication, a number of vaccinations including COVID, flu, and meningitis, a stable home life and support system, and frequent visits to the gynecologist, dentist, primary care doctors, dermatologist to assure there aren't infections that would impede the recovery process.

How old were you with the first? Were you old enough to remember? If you remember, were there any differences that stuck out to you at 12? With recovery, or just how you feel as time goes on? Do you have more restrictions on your activities after two transplants, vs if you'd only had 1 by your age now? Sorry for the prurient curiosity, I'm very curious about if you'll be able tell some kind of difference after your next transplant. Is it possible your RHR will change?

Good luck with your next surgeries, I hope everything goes well for you and you have swift healing!

I remember very little from the first, and I didn't really comprehend how extreme of a situation it was. At that age it was probably a lot harder for my parents than it was for me. I think I blocked out the pain and I don't have any trauma from it.

The second was a nightmare. 12 is already a hard age to be because you're finding yourself, starting a new school, and going through puberty. I was extremely resentful of my healthy friends and felt like I had to grow up way too fast. I definitely experienced a lot of trauma that came rushing back when I got listed again.

After both transplants, I felt normal and healthy for years. Granted, I don't remember what it's like to NOT be a recipient, and I've always had low stamina compared to my peers. But I worked, graduated college, moved states, backpacked in Europe, and had a pretty great life after my second transplant. I am disabled now and will be considered fully recovered one year after the surgery. I can't wait! My RHR will probably go back down but it will always have a minimized range and be faster than normal.

Thanks friend!

maybe not the best question, but how much of the cost is covered by insurance etc? Would like to know specific amount of costs, but just percentage is fine too.

I moved to another state mainly so I could have accessible health insurance after I turned 26 and wasn't covered by my mom's insurance anymore. They are covering basically everything except for living expenses when I have to relocate for the transplant and recovery. I am very lucky to have such good healthcare and I'm a proponent of universal affordable healthcare for all.

that is huge relief to hear that. hope all goes well!

Thank you!

Where do the hearts come from?

They come from a deceased donor. Since I was a child for my first two and required children-sized hearts, it was their families who decided to donate the organs. Usually donors have suffered a TBI and are declared brain dead, since other causes of death tend to affect the organs too much to transplant.

It's important to talk to your loved ones about organ donation if that's your desire, as well as join local registries and sign your driver's license.

My donors are anonymous unless both parties request to meet. I have never met mine but I would agree if they wanted to.

Will the surgery go in over your previous scar or will they go a different route because of it?

They will open up the same scar, and I'll have a new one for the kidney. I've had a scar for almost my entire life and learned to love it, it's a reminder of how much I've overcome. That being said, I'm kinda bummed that it's going to have to reheal again, it looks pretty gnarly for a while.

What do you like to do for fun ? Do you have hobbies or like to do anything special ?

I'm a great cook and it's nice being able to focus on that now that I'm too sick to work. I read a lot, like 2 books/week, and I recently picked up crochet and started learning a new language. I require a lot of intellectual stimulation but I'm pretty sedentary in general due to my low energy levels.

Do you have any book recommendations? I love reading too!

I like sci-fi a lot, especially Neal Stephenson and Octavia Butler. My favorite book is probably Reamde by Neal Stephenson. I often seek out novels written by non-western authors, some recent good ones were Build Your House Around My Body and We Measure the Earth with Our Bodies.

I'm also weirdly into medical history as a hobby, especially plagues. The Great Mortality by John Kelly was a good one, as well as How to Survive a Plague by David France, and The Family Who Couldn't Sleep by DT Max.

What wizard did you get cursed by?

Not sure, it is my life’s work to find out and get my revenge!!

I have heard that some heart recipients notice new (and mostly temporary) food likes/dislikes that may have been the same as the donor. Did you notice anything like this?

I have heard this but have not experienced it. Personally I'm a little skeptical of these claims, as I usually only hear them from non-recipients, but there is some research that it might actually occur in some cases.

Do you feel it’s a waste giving you three when other people may still need their first one? Or do the people needing their first one get a higher priority level on the list? I was always under the impression there is a shortage.

I’ve answered this elsewhere in the thread.

What does it feel like to have somebody else’s heart beating inside of you? Thanks for the awesome AMA and hope everything goes well!

It makes me feel grateful to the donor family, for making such a difficult decision after losing a loved one.

Do you have to get frequent biopsies of your heart (threaded through the artery like a cardiac catheterization)?

I skimmed through a book written by a young woman who received a heart transplant and she talked like the biopsies were so awful. But maybe her heart condition was different and required different care? She did mention that additional transplants are often needed.

Yes, I get biopsies and/or caths yearly, and a few times in the past year since I got sick. They're not fun, but honestly they don't bother me that much and they're not too invasive. I like my doctors and I'm a good advocate for myself, and I have a crazy high pain tolerance at this point.

How do you deal with the immunosuppression? I just got meds for an autoimmune disease but they will make me immuno compromised and it’s scaring me and so I haven’t started them yet.

It's kind of hard to say because I've been immunocompromised since I was 4, so I don't remember what it feels like to be "normal." I've always been pretty risk-averse so I use a lot of hand sanitizer, I'm cautious when there's illness going around, I get all the vaccines I can, I'm very careful in caring for wounds, and I having been wearing a mask in most communal settings since COVID started. It's hard, but it will get easier!

Do you have to take any extra anti rejection drugs for having two different transplanted organs? or is it still the same ones?

I'm hoping to stay on the same two drugs I've been on since I was 12, but they might replace them with others. Interestingly, I learned that dual-organ transplants actually have a lower risk of rejection after a year. No one's exactly sure why, but perhaps having two foreign bodies from the same donor helps regulate the immune system, if that makes sense. It's one of those, "we're not sure how this works, but it does!" situations haha.

So, this will probably come off wrong but...

What makes you prioritized for a 4th heart when there are people waiting on getting a 2nd?

I've answered this question elsewhere in the thread. There are many, many factors when it comes to listing and status level.

Are you on dialysis? If so, which modality have you found appealing?

Just curious as I work in the field.

Thanks!

I was recently prepped for peritoneal dialysis, however I'm still producing urine and am trying to hold off as long as I can. It can get exhausting managing my kidney symptoms and medication but I'm getting used to it and my function is hovering around 15%. I adjust my diuretics according to need and I'm on a low-salt, low-fluid diet.

Echo tech here - fingers crossed you get your new heart and kidney soon! What was your CHD that caused you to need a transplant? Is your new heart rejecting?

Restrictive cardiomyopathy for the first, coronary artery disease caused by long-term, low-level rejection for the second. I have had two bad episodes of rejection, the first one was 7 years ago and I became disabled due to it, the second one was what prompted the listing.

When was the last time you could "forget" your condition and absorb yourself in a life joy? Please don't say, "Rings Of Power". :-)

I’m pretty good at compartmentalizing. I enjoy reading, podcasts, crochet, crosswords, writing, cooking, listening to music, and language learning. I tend to hyperfixate on things so it’s easy for me to dissociate. That being said, sometimes I get really down and I suffer from panic attacks and anxiety. Fortunately I have a great therapist and I have access to anti-anxiety medication, an SSRI and xanax for the bad days.

Is there any sort of feeling that something has changed after recovery? Like does your body give any sort of signal somethings changed or does it transition pretty seamlessly

Other than feeling a lot better and requiring immunosuppressants (which come with a lot of side effects), no not really.

What meds are you on? I’m on mycophenolate mofetil and tacrolimus, but that’s for kidney transplant. Not sure how it varies for different organs.

I've been on cyclosporin since I was 4, and sirolimus as well since my second transplant. Since I'm doing this one with new doctors, I'm not sure if they'll change the meds or not, but I don't think I'll have more than the two. Weirdly enough, dual-organ transplants actually have a lower rate of rejection after the first year, and they're not quite sure why that is.

Immune system is like… hmmm I’m kinda suspicious of that one, but if there are two of them, I guess it’s fine.

Haha, pretty much!

What mental challenges have you faced after the transplants? Have you needed therapy to cope with the idea of having a foreign organ inside you?

And last but not least, and with all the empathy I have for you, at what point do you think you are still entitled to keep receiving a 4th, 5th and so on transplant? I know this is a question that is mixed w ethics and other topics but I'm interested in your opinion

I have pretty bad anxiety, which was greatly exacerbated by COVID. I do see a therapist, mostly so I can have a safe space to cry and vent. It is odd knowing that I have someone else's organ, but I truly see it as a gift and I'm happy that something good could come out of another family's tragedy. Anniversaries are very emotional because, while I'm so grateful to still be alive, I know there's a family out there grieving because it's also the anniversary of their loved one's death.

​

Sometimes I ask myself the same thing, ethics-wise. The reality of the transplant system is that there aren't enough organs to save every person who needs a transplant. I believe everyone has the right to seek life-saving care, and the vetting process for getting listed is very strict. I hope there will be other treatment options in the future, and I don't know what I would do if this heart fails again. I try not to think about it too much and trust that I'll deal with it if and when the time comes.

Hi there, I'm hoping you get the call soon! Are you under restrictions for where you can go (as in traveling)?

I'm not, since I'll already have to be flying commercial to the transplant location when I get the call. If I travel out of the country I would basically be put on a pause until I returned and not get any offers during that time. But I saw my family back home last month, and I don't plan on traveling anymore because I want to be at home when I get the call, and I live relatively close to the hospital (same coast, at least).

Curious why not a pacemaker vs another heart?

I genuinely don’t know enough.

To be honest, I'm not entirely sure.

What's your job?

I haven't worked for the past year because I've been too sick, but I've worked as a professional baker and more recently at a non-profit for domestic violence survivors.

How do you have such good insurance if you aren’t currently working? Glad you are able though! The insurance system is terrible in the US.

Because I live in a state that provides affordable medical coverage for all. Insurance shouldn't be connected to your job, and it's very depressing that many people who have similar conditions have to keep working in order to keep their insurance. Affordable universal healthcare for all!

Do you ever feel like you’re supposed to die, and you’re greedy taking multiple organs that could save multiple other peoples’ lives?

I’ve answered this question elsewhere on the thread.

How often have you made and/or received the "change of heart" joke?

Also, what do they do with the old heart(s)? Do you get to keep it(them)? Like, in a jar?

Not often haha, but in general I do try to have a sense of humor about my experience.

I'm not really sure how long old organs are kept for research purposes. They did ask if I wanted to see it after my second transplant, but I declined. Don't think they'd let me take it home, nor would I want to!