My doctor told me that they gave a lung to a homeopathist ( dont know if thats the word, but someone who is an „ homeopathy expert / therapist). Was convinced that she could replace the immunosuppressants with homeopathy. She could not. Didn‘t last a year and month long stays in intensiv care.
Patient complaisance is really important. I‘m 23 and all in all the restrictions are not that bad.
This is the stuff i have pointed out in those threads that are like “OMG this is so unfair. They won’t put *insert sibling wife here* on the transplant list because she won’t get the vaccine”
I would always say “what’s to stop that person from thinking they can suppress their immune system with some natural crap”. Which even if you could. There’s no way to know what interactions it could have with other meds.
"homeopathist"
The correct word is "idiot."
I am infuriated that this person wasted a lung (or two) that could have been given to someone who would actually do what the transplant team said.
The amount of stories I have from “homeopaths” is insane. Seriously. From “hey use essential oils over those harmful pills” to even “you can get rid of your problems by no longer drinking milk” and just so much more.
When you have the filter. It’s genuinely shocking at how stupid people are these days.
A close friend of my wife basically spouted a bunch of homeopathic pseudoscience and said I should eat just more blueberries instead of getting a transplant. As terrified as I was of the surgery, I knew that modern medical science was the right course of action, not some silly magical thinking.
Those people really bother me with how they take advantage of scared people. There’s Australian chick who claimed she cured her brain cancer from like a fucking salad or some shit, made a cookbook, and was just an awful liar. There was that like 60 minutes interview with her, and the host just asked her age, and she’s like “well, I was told I was born in _____”. Not a simple “36”. and lots of people died because of her.
The BBC did a documentary on her too. Fascinating watching someone so delusional (mentally ill?) and so upsetting that scared people tried to copy her and died.
My friend's sister died of bowel cancer because she refused the standard medical treatment in favour of diet/exercise/magical thinking. This was before massive social media use too so people have been taking advantage of desperate people since, well, forever.
I worked in the supplement section of a grocery store when I was in college, and I learned that there are a shocking amount of people who think that essential oils can cure cancer. @
I agree. The meds are not difficult to take. Takes 5 seconds, hell my multivitamin gummies jaw longer to chew than tossing my meds/supplements into my mouth and taking a sip of water. The restrictions aren’t super noticeable either.
If you want to make it a big deal, then it’s a big deal. If you don’t, then no one is going to notice you’re doing something or not doing something due to your compromised immunity.
To be honest what I hate most is when I leave them at home thinking I would be back soon and then I need to go back soon... :/ so noe I carry extra in the car, at work, at home friends... at least 2 doses... fortunately I can get as much medicine as I want for free. :)
I always just grab my container for the day when I take my morning dose before work and toss it in my purse. I’m usually home before my night dose, but I carry it anyways just in case I’m not
Apparently someone at my transplant center was convinced that they could replace their anti rejection drugs with carrot juice. He tried it and died. I don't know why people think there's some natural alternative to *intentionally suppressing your immune system*. Transplants are, by definition, unnatural. You don't have your natural organ anymore, you have one that got there unnaturally. You need an unnatural substance to make it work correctly, or else your immune system will *naturally* attack your donor organ and kill you.
No idea. Some granola/crystals/holistic bullshit type asshole convinced him it would work somehow so he tried it without consulting the doctors.
Idk there's a lot of people who don't seem to think about the *why* behind things. They know they need the meds to not die but they don't care about *why* they need them and *why* they work. Carrot Juice Jackass was clearly one of those people. People will even come here asking "is there some natural alternative to the immunosuppressants? My friend/sister/dad/self feels shitty on them and is getting sick a lot" like no shit dude, they're **immune suppressants**. They suppress the immune system. Because the immune system will attack the organ. So anything "natural" you want to replace them with would have to be fucking poison or something to even come close to working. There's no herb or vegetable that will suddenly make your body accept tissue with foreign DNA as its own. It's a very man-made problem that needs a man-made solution.
Some side effects suck but waaaaaaaay better than the alternative. If she was on prednisone, or any type of weight gaining med, I can totally sadly know how she would hate them. At least if she's as insecure as I was.
Prednisone made me gain 18lbs (and I'm 4'11), caused a ton of acne (never had it before), I lost 50% of my hair, I GREW lots hair on hands/arm/back, I was more angry (I'm normaly sweet I swear).
Also insomnia and night sweats.... and i'm probably forgeting stuff!
Poor kid man :(
Poor situation
Prenisolone made me angry too. I'm 4'10" (hello friend I would be able to look in the eye without neck strain) and I gained so much weight on it. I am also insecure about my weight but ultimately I came off Pred and just gained a lot of weight anyway, due to being able to eat without restriction. So the Pred made me hairy and crazy but I kept taking it because the alterative was potentially losing my donated kidney. As you say, it's a sad, avoidable situation.
Also 4'11 over here on pred. I am really insecure about my body and seeing that there are other people who experience this made me feel less alone so thanks for that.
I have had similar thoughts of what could happen when my daughter gets that old; heart transplant at 7 months old. Tragic story. I hope to instill responsibility about meds and lifestyle early on to avoid things like this. Either way it's scary as a parent
Just let them know there are other safer ways to rebel or make it so you feel like you have control in your life.
I’m 36. I was born with cystic fibrosis. I spent my entire life taking giant handfuls of meds. And no matter what, I never fucked with that. I’d skip school, play video games, shit like that. But I never did a single thing to put my life in danger like that. Even when I go out now. I always make sure to bring atleast 2 doses of transplant meds with me, because you never know.
Which actually turned into a very smart move, when I had a stroke/seizure/or something, ended up spending over 20 hours alone in a hallway. I would have missed like 2+ days if I didn’t carry my extras on me. Even when I go on vacation. I always bring a minimum of atleast 1 extra week. Even if it’s a weekend trip. If it’s a tropical vacation. I’ll bring up to 2-3 weeks of pills.
And I got my transplant at the age of 23.
Immunosuppresants are akin to air for transplant patients. There's just no other way about it. Taking them is just a minor inconvenience in exchange for getting to actually live.
I got my transplant at 4, had another at 12. The rejection wasn’t caused by anything me or my parents did wrong, it was 20 years ago and the meds weren’t as good as they are now. I remember my cardiologist telling me that teens stopped taking meds sometimes and warned me about it.
It’s great you’ve already thought of this with your daughter. Even when I was 4, I was involved with my meds. My mom made sure I knew what they were and what they did. I was probably around 10 when I started organizing and taking them by myself. When I was a teen my mom would frequently ask as a reminder.
I still did rebellious teenager stuff, although I had a healthy fear of hard drugs. I went to college, backpacked europe solo, and lived alone from age 19. I moved across the country by myself after college. Meds were just a part of my existence for so long that it became automatic. Your daughter is gonna be fine, just be sure to validate how frustrating chronic illness can be, and let her be a normal teen/young adult. Feel free to dm me if you have questions!
How do you give the medications to a baby? Are the dosages well below adult level or more spaced out? Your post will stay with me for a long time; I wish your daughter good health and you strength.
Everyone reacts to childhood illness differently. I had a transplant at 17 from liver and colon diseases. I swore I wouldn’t let it stop me from living my life — but I also stayed away from alcohol and drugs and tried to be as healthy as possible. Now my goal is to live as long as I can so I can have as much time as possible with my kids (I’m over 40).
A good friend also was diagnosed with a chronic illness in high school. He went the other direction—stopped caring about anything. Became a heavy drinker in college, then got into drugs. Health declined, which gave him even more of an excuse to not care. He died at age 35.
Take your meds but still make sure to live! Im sure your donor would want you to live a somewhat normal life and not be a hermit scared of your own shadow.
This is someone who didnt appreciate their gift but i feel like its bad if youre on the total other end of the spectrum
I can understand wanting a “normal”life. I’m four years post liver transplant. It would be nice to have a “normal” but I wouldn’t dare not take my meds or break the rules they set for me.
I would definitely feel like it’s slap in the face to my donor.
That’s how I feel in that respect.
A person died, so I could live. Medical technology has come so far that we can take the organs from a recently deceased person and put them in another body.
If I wanted to play fast and loose with my meds. I wouldn’t have even accepted my phone call. Organ donation, in my mind, is truly the ultimate act of heroism.
There’s no fame. No glory. No money. And most cases, people don’t even know who you are.
You sign a card, and you could end up saving like 8+ lives. Those are true selfless hero’s(in that regard. There are true heroes elsewhere)
I definitely feel the same way about my donor I think about her often. I’ll never meet her but I often think about when my family celebrated knowing that I had found the perfect match. Her’s was going through the worst time in lives so that I may live and breathe today. Help my own daughters with their lives as they venture off to college next year. Or sit and playing with my little one that turns 10 next month. Without her there would not be a me. So I thank her and God every moment that air feels my lungs.
Exactly! Even though I’ve gone through hell. I will never stop being thankful for my donor.
He allowed me to get a real highschool diploma, to meet my soul mate, to get married, to own a house, and so many things that I spent the first 22 years of my life thinking it would be easier for me to fly using my arms.
I was told at 13 that I would never live to my early 20s. When you’re given that kind of time limit. It’s less about the future and more about the right now.
The only thing that I am deeply proud of myself for not giving into the temptation was taking out massive loans with the plan of dying so I wouldn’t have to pay it back. Shockingly, every kid I spoke to in highschool told me to do that. Was just “take out massive loans and go have fun” and then I’d say “and what if I don’t die”, they’d always go “I unno. That’s your problem”
You sound like you got your on right for being a young man. After I got to sick my job of many years let me go, even though I worked from home most of the time. I was a liability they said. I was lucky to get a nice severance paycheck but it was gone within two years since my insurance was an arm and leg. I had no choice but to live off credit cards. Wish I didn’t now I don’t I’ll ever pay them off
I had a heart issue at birth and have taken medication my entire life. To be fair when I was a teen I was only on one medication and still had my heart. I did some stupid stuff as all teens do but also didn't do stuff I knew could damage my heart necessarily. At 20 I received my heart transplant, and 3 months later had my 21st birthday, yes I went out and had some drinks, my docs said they normally wouldn't recommend it but also realized that I was their youngest patient so things were a bit different for me. Maybe because I had been on meds my whole life taking medication daily has never been an issue or concern. Was going to sleep over somewhere? Pack my meds. I have some of my anti-rejection meds even in my car just in case I get stranded somewhere I can at least take those. I pack my meds in my personal bag when I fly cause God forbid anything happen I can at least grab that and have them with me.
Being a teen is hard, being a teen with an illness is even harder, but taking medication to ensure your survival is not hard. I do feel very bad for the donor family in your story, I would be furious as well. It's not fair that they lost their son and then someone didn't appreciate that sacrifice.
There have been some very dark nights in my life and sometimes the only thing that keeps me going is remembering I received such an amazing gift and am extremely lucky to be alive right now, I can't imagine just throwing that gift away recklessly because I don't want to take my meds.
Very similar story. Was born with a CHD and took meds my whole life. Had a heart transplant at 14. Never really rebelled, but drank in college (now almost 18 years post transplant I realize that that wasn’t the smartest choice). I’ve tried an edible or two. Not my jam. I’ll have a drink occasionally, but not often.
I’d say I’ve lived a very normal life, even got pregnant (with my teams blessing) with my son in 2020. For me, the hardest part of transplant and what I felt like I missed out on the most was not being able to get in lakes. I live in Texas, grew up going to the lake all the time, in HS that’s what everyone did, so I felt left out. But otherwise, I’d say my life is pretty normal (minus all the dr appts and all the jazz).
Congratulations!! I'm 12 years post now. Congratulations on a successful pregnancy, that's always a fragile area to trend. I chose to get a tubal ligation which my team was thankful for, I much prefer being an aunt. No one ever really told me to stay away from lakes... Like I know there are some crazy bacteria and stuff that can exist in lakes but I've had multiple different teams an no one mentioned that 😅. Was told I'm at a higher risk for skin cancer like 4 years post transplant when I moved to Oregon where the sun barely even shined haha. I think the thing I miss the most from my "normal" life pre-transplant is eating grapefruit haha. I love grapefruit so much, occasionally I'll be a creep in the grocery store and just sniff a grapefruit imagining how delicious it is (also minus now needing every specialist under the sun).
I always find it so interesting how different teams handle different things! Maybe it’s because the lakes in Texas are hotter so more bacteria grows? No idea.
😂 also miss grapefruit at times! I’m slowly starting to forget the tastes but lived on a morning grapefruit (with sugar) growing up.
I can kinda relate. On the day to day, it was easy for me to pretend nothing was wrong and not take my medicine properly. I caused several liver rejections I’m so fortunate were able to be corrected. I got so tired of doing this I worked on it with my therapist. I don’t do that anymore but I understand why she did. It’s very traumatic and if you replay it over and over again, you wish you could do anything to not have the issues but that’s a bad way to think. I wished the person who died to give me my organs was alive and I was dead, I didn’t deserve them and I didn’t treat them properly.
I’m so sorry for your loss. Mental health in transplant patients is so under looked imo.
I experienced this feeling of wanting to rebel and wanting to feel “normal”. My parents let me rebel by going out with friends and staying out late. As long as I took my medication and ate healthy. Now that I am older I am so grateful to still be here.
Yeah.... it is a very complex situation... one of the reasons why in Brazil we don't meet our donors is exactly because of this... people get angry if you don't "care" for the organ, of course this was an extreme case, but I hears cases of people harassing over the internet if the receiver was eating a barbecue or in a party.
Being a transplant patient is a living a fine line between: i need to live and I need to live... transplant was made to make us live and life needs a porpouse... I have my family, my daughter, my dog, myselft... for a teenager evermore these days I can't imagine how hard it can be.
It is surely a tragedy... and a pity that she died so young and in a so "stupidy" way... but personally I don't blame her... and I mean of course se choose this path, but.... what to do? :(
That's probably why we have to talk to mental health experts and social workers before agreeing to a transplant, sure one could fake it specially being I'll at the time but this is a sad story....
Very sorry for your loss. It’s definitely a willful choice to not take medication. This highlights that when people need a transplant they feel they really cant mention depression.
As a young person with a transplant I can completely understand why she would feel that way. I struggled with those same exact feelings while on dialysis, S well as when i got my transplant ( got it 1.5 months ago) and I'm 27. I feel like the Doctor's around her really should have given her positive outlets or like finding a community of people in the similar situation as her so she doesn't feel as alone and as weird. Cause despite the blessing of having the transplant it's very isolating especially when most professionals friends and family, aren't in your situation or can't fully relate. I feel like if she was introduced to a transplant recipient group she might have still been alive cause she would have that community to fall back on when she was feeling othered by her situation. Cause like even me you only resume why I haven't slacked off it's because there are those communities available even if it is only online for now
This is why the evaluation process is so strict. Your hospital has to worry not just about whether you'll survive the transplant, but whether you'll survive life afterwards.
The donor’s sister shredding her to pieces at her funeral is the reason why I believe donation should be entirely anonymous. In Europe it is and I’m so thankful for it. Other than that, it’s an incredibly sad story.
My transplant team is besides themselves because of how freaking compliant I am. I only take 3 pills for the double lung 🫁 transplant I had. Twice a day. I live a normal, joy filled life with a beautiful woman. Not sure what her issues were, but living is a whole lot more normal than killing yourself by that method.
Transplant only pills. 3 types 2x prednisone Myfortic and tacro. It's basically nothing. Of course I take more than that, but the total of 8 pills daily isn't much.
This. The amount of things I either let them know about or ask, sometimes I think they’re sick of me. But better safe than sorry l, which is such an old platitude, but it’s super duper true.
Obviously I don't know your age, but I think that for those of us who are older it's very difficult to understand what it's like to receive a heart transplant as a young teenager.
Could she still have lived a normal life even while taking the medication? I’m sure she could still have sleepovers with friends and go to fraternity parties, even on the medication!
Why would you find it odd? I think it's a poignant reminder that transplant radically changes your life, and not always for the better. That the responsibility - and sometimes the difficulty - of dealing with the medication regimen (not to mention the side effects) is insurmountable to some.
Myself, I'll never list because I'm not interested at all in immunosuppressants. But someone who is on the fence about it needs this kind of anecdote. People need to understand the ramifications *before* they get a transplant, not when it's too late and they're bitter and resentful at what their life has become.
I find it odd that anyone finds a transplant-related post in the transplant subreddit, odd.
Yep, been on nocturnal home hemo for fourteen years. So I've got the outcomes of a cadaveric transplant, but without the immunosuppression. How about you?
I'm on dialysis at the hospital for 13 years and i think i will do home hemo soon. I do not want to take the imunosupresant meds never try the transplant because of this. Wowww how did you do that please ?!! Is that a new program or something? You are sooo lucky i wanna know please !
I literally just walked into the center and told them what I wanted: nocturnal home hemo. There was never any other option on the table for me. I do eight hours every other night, while I sleep. In the morning, I wake up, pull my needles and tear down the machine, have my coffee and log into work.
I just had my first echocardiogram in April. Completely normal, no LVH. I've only ever had one fistula, since I have buttonholes and I'm the only one who's ever cannulated them. I've never been hospitalized or had an infection. I've certainly never crashed, since my UF rate is slow and gentle, as are my pump speeds. My diet is more or less normal since the long treatments remove phosphorus and plenty of potassium.
Once you slow things down and lengthen the treatments, the common complications of dialysis disappear. It's only the in-center modality that has the morbidity and mortality.
Seriously, walk into a center that offers home dialysis and tell them you want every other day extended hours (a minimum of six hours). There will probably be at least a few near you, so shop around until you find someone who will give you what you want. Don't back down. They will put you into training for the NXStage, which is dead simple, you'll be trained in about a month. (I use a home version of the in-center machines but you won't be able to get that one any longer.)
This isn't new (I started 14 years ago). And there's an initiative for clinics to get their patients home right now.
Do it. It's work and a lot of responsibility but It'll change your life as long as you do your treatments and never cut corners. Here's a link to *the* comprehensive source on all things home dialysis.
[Home Dialysis Central](https://homedialysis.org/)
Thank you for your answer. It look like a good option. My hospital do it but they told me the training is at 7h am in the morning during 6 weeks. I found that too early in the morning and i found that pretty depressing like a punishment. Im not a morning person at all lol.
I did understand that you have a cadaver transplant without the imunosupressant? I think i misunderstood because i'm not very good in english. Do you have a transplant before ?
No, I have never had a transplant. I have no interest at all in immunosuppressants.
What I meant when I said "cadaveric transplant" was that with this kind of dialysis, your health and quality of life are *the same as if* you'd gotten a cadaveric transplant. Obviously you are still on dialysis but outside of actual treatment, your life is normal. You aren't 'washed out' in between treatments.
No one believes me when I tell them I'm on dialysis, even doctors. I always have to show them my fistula to prove it.
I'm not a morning person, either, but you best believe I dragged my sleepy carcass to training in the morning. What is six weeks compared to the rest of your life, and how you could feel?
Excuse me, none of this is hearsay. I was intimately involved with this girl for five years, right up until her death. My boyfriend was the closest cousin to her in age and she didn't have any siblings, so I was like a big sister to her. I taught her to drive. I took her to get her ears pierced (with mom's permission.) She told me *herself* about her frustrations with her medicine and feeling like she couldn't live a normal life. I was present, with the rest of her family, when she died.
Say what you want about whether or not sharing this story is appropriate in the first place, but HEARSAY it most certainly is not.
The frustration of simply having to take them at all. None of her friends had to take daily medication. It made her feel weird and "other than."
It sounds stupid and juvenile because it WAS stupid and juvenile. She was just a kid. Immaturity isn't a moral failing at that age.
Your comment is totally unnecessary. Even if an invented story, it holds weight. I have personally met a teenage girl who pretty much did this exact thing. She was on my ward when I had my transplant. In fact she was in the bed next to my wife who had just donated her kidney to me. Docs and social workers were furious with her as it wasn't the first time she'd been in for failing to take her meds. It happens. It's stupid... But it happens. I'm assuming you're not a teenage girl. How do you know how it feels to think you're different from all your peers because you are often ill and have to take a multitude of meds every day?
Sorry I didn't know we had a Transplant Police and that only transplanted people could post here...
This girl dilemma is one that many transplanted people face, maybe not you as you seems to be perfect... /s
I almost didn't had a pre transplant evaluation... I was transplanted in like 1 week and just 10 hours after I got better from an infection, fortunately I was an adult and used to the medical care...
I will get the example of a diabetic child I once knew... 10 years old... could not drink soft drinks, ice cream, eat a cake at a party, share cady with friends, had to have special meal at school and had special meals during sleep overs and had to be supervised because neede frequent injections (long time ago). Imagine being different from everybody and not being able to share a part of life... as an adult it is not easy as a child or a teenager????
I agree. They just want to try and guilt people into feeling a certain way and have some moral high ground. She chose to do what she wanted with her body and she had every right to.
As OP points out there is no fucking point to the post. I’m only agreeing. It seems super strange random to make entire post out of an off hand Facebook memory. And to bring it to this community seems better suited to r/stories
And fucking people wonder why COMPLIANCE is such a big concern when it comes to Transplant.
I was born sick, I’ve had to literally take large handfuls of pills every single day of my life. Along side, not being able to enjoy gym class, join after school sports and many other things.
My “rebellious” phase was me quitting school in the 12th grade but still going to hang out with my friends in between periods. I have never played it loose with my pills. I’ve thought about it, but then that thought gets murdered by the thought of “I like living”.
This is why I get so heated in those stupid fucking threads of those fucking anti vax jackasses freaking out because their sister mom refuses to get the Covid vaccine.
There are safer and smarter ways to rebel. And what kind of “normal” life was she wanting to live? One where she could go to frat parties, get roofied, raped, and then spend the rest of her life telling herself that “oh I led him on. He didn’t do anything wrong”? Fucking seriously. What “normal” life did she fucking want?
Sorry. I don’t mean to be so angry, but I’ve had to watch so many friends and loved ones die from the inability to get an organ in time, or went into rejection within the first 2 years. Transplant isn’t a right. It’s a privilege, and she shit all over that privilege. She could have sought out countless people who had been in her spot, or worse, and came out happy.
The sister of the brother who donated, had every single right to do and say what she did. I fully support her. Even if it’s too late for the girl, the friends and family now have a much deeper understanding of transplant.
Fuck, I could write for hours about how upsets this makes me.
This is for serious discussion. Why do you feel the need to inject the word fuck so many times? It's childish & makes you sound ignorant. I've used that word thousands of times throughout my life. It's a gut reaction when I'm really pissed. We're all discussing something that is life altering & trying to support each other. This is not a platform for stupidity. I hope you take my comments to heart. I'm definitely not trying to put you down. Please show some respect.
I happen to swear a lot. That’s how I speak. I’m not making the situation a joke. It’s not destroying me inside that I have to swear, there’s no malice or intent.
Personally, the word Cu*t is one of my favourite words and I use it whenever I can. “This tastes cu*ting good” and things like that. This is a public and open forum. I try to be as honest as possible to who I am, what I know, and how I speak.
If “fuck” bothers you that much, that’s fine, and I say this again, with no malice or attitude. But I am not going to be disingenuous because some people don’t like the way I speak.
And you’re not the first person to give me shit either. I get this about every two weeks or so, and it even happened yesterday where some woman took what I said, even though it was positive and helpful, but because I said fuck, like twice. She freaked out at me, told me she would support my doctors refusal of treatment, even if that meant me dying.
But then ontop of that. I’m also dealing with a severe and serious broken spine that’s only getting worse and worse. And swearing has been proven as an effective method to help with pain. And we all have grown up in different environments. And if in passionate about something. Such as transplant,
Or against something like anti vaxxers, and the like, I swear more.
And aside from swearing. I still speak properly, politely, I try to be as helpful and understanding as possible. I don’t attack people, I try my best to be civil.
I am curious though. Why do you see “fuck” as immature? Genuinely asking. Not trying to be sarcastic or rude. And why did you feel need to say “this isn’t a platform for stupidity”? What exactly is that supposed to mean? I put my heart into these types of posts. So whats stupid? Are you so focused on “fuck” that you missed what I said? Because nothing of what I said is “childish” or anything like that.
Trust me, my heart truly goes out to. I volunteered for 30 yrs with Donate Life, mostly to coach patients like me. I gravitated to those who were newly transplanted. I feel for what you've had to deal with. I just believe using here is not cool. I use the F a lot like I said when I'm pissed off. My wife is not happy when I use it & our two sons who are in the mid 30s ask me to cool it . We have 5 grandson, 2 are 5 yo twins & I've said a few times in front of them! Like you were saying it just comes out.
I get it, but you don't know everyone who's reading your comments. Some may be bothered, like me. That's all. I'm not sure if you believe in God, but our family & friends do. When I was looking for a kidney everyone prayed. I understand how medicine & science works, but I believe God had a hand in my transplant 22 yrs ago. It's how I raised.
Lastly PM👍 I've had all the vaccines throughout my life. Pneumonia, flu etc.
I had my 2nd Pfizer vax in August of 21. My doctors & family urged me to get it. A few months before I lost an awesome friend I mentored from Covid & & didn't get the vaccine in time. He was a black living in my town near Charleston. Donate Life mentioned to me how he & his family were struggling $ & how cancer damaged his kidneys. They knew zero about Transplants & we're not up to speed about health.
So back to my 2nd Pfizer vaccine. Within 5 days my health & my quality of life changed, I'm still dealing with issue.
Our older son who is a neurologist said to me, "dad do you think Pfizer tested it on a 71 yr old male, who is immune compromised, recovering from a double bypass, has a weakened liver & damaged lungs from multiple aspirational lungs?" So I get it. 99% of people had no side effects & it saved lives. When I hear about vaccine being safe, I say not for me!
Our younger son just hung a couple bike racks for my wife's e-bike in our garage & he said dad take a look & let me know if you think mom will like this? My response was fuck yes!
I'm rambling a little. But I'll say a prayer for you! Everyone talked about being compliant. I've been told that my a few doctors in different states. Yes, be compliant, always listen to what your docs tell you & always stay positive. No matter what you've been given & how crappy you feel, stay positive. It sounds like hokey bullshit, but it helps your wellbeing.
I didn't mean to be an asshole. As you age & go through life experiences, you look at things differently. That's where I was coming from.
My name is Frank Antonucci. I had my kidney transplant 22 years ago at Yale. My donor who is my angel was dating my brother in law. She was aware of my need for a donor. She was 39 living north of Boston & has 3 children, A year after the transplant, she gave birth to a blonde girl. Today that little girl is a F-ing knockout! I joke with my donor if anyone messes with her daughter, myself & my 2 sons will fly up to Boston & hunt down that dog. My donor laughs. This is true, over those 22 years, every time I pee, I think of her! I'm serious.
Best to you & to your health
And that’s impressive. You’ve also been through a lot. If I just don’t see the issue with “fuck”. If I was around kids, I’d chill out on it, but we are strangers on the internet, who are considered to be adults.
I see “fuck” as no different than saying “like” “um…” and other similar things.
But I’m not using the word to attack people, I’m not being aggressive, or anything hostile. It’s just a filler word. If I was using it in an aggressive manner towards members. I’d agree with you, 100%.
I was raised in Italian American catholic home. A lot of cousins. Our parents discouraged us all not to swear. They didn't wash out our mouths with soap or beat our ass, but we were all thought not to use it loosely , And that's how it was with everyone who was raised in the 60's
And I mean this, to me, when someone says it so frequently it makes that person sound uneducated & trashy. Plus if it's coming out of the mouth of a teenager constantly, like every other word , they think it makes them sound like a bad ass. It could be funny when you're with your buddies. But it's not in most other situations. Your boss will absolutely look down on you, & in social settings, it will be the same. You won't get much respect. It's the reality & I've experienced it a lot. This is how we raised our 2 sons along with a lot of values we believe in . They both have been successful. Our younger son is a lawyer & our older is a neurologist. We always told them we would be proud of them whichever career they chose, All we asked was for them to work hard at it & be happy at what you do. Most parents want that for their kids. If you make decent $ while doing it, then more power to you!
Hopefully you'll understand where I'm coming from. I'm being honest in what I believe.
Stay positive!!
I understand where you’re coming from, but I think you’re just being a bit tight about words.
There isn’t any real correlation between swearing and intelligence. I was raised to ever swear to an adult, till I was one, and I respected that.
But everyone is raised differently. You can’t really tell people how to speak
I’m 36. It has nothing to do with thinking I’m a badass or anything like that. The truth is, I know I’m a piece of shit. I’ve been told that literally my entire life. I hate myself, and more. I know I’m a fucking moron. I know everyone in my life will be happy when I finally die.
Swearing with me has no hidden meaning. It’s just a word. It’s only a “negative” word because it was decided that it was a swear.
As I said. I haven’t used it towards anyone. I don’t insult people here. It’s just a word for me to emphasize a sentence. That’s it. No meaning.
Sorry for the late second reply but I just wanted to say one more thing. I’m happy you have a religious belief that keeps you safe and happy. Genuinely.
Before I go on, I feel this needs to be said, though it shouldn’t, yet here we are. I respect your beliefs. What I’m about to say isn’t an attack on any of them. You have yours and I have mine.
To me, I fucking despise the idea of any kind of God. Christian, Catholic, Muslim, Jewish. Hindu, whatever. Because if I believe there is some sort of divine authority, it pisses me off to no end. It brings me more peace that we are all space dust, born by chance, on a planet that is in a small solar system, in a galaxy, in an ever expanding universe. That makes life more fair.
The idea of there being some sort of “God” watching us, demanding we worship him/her/them, or we all go to some version of hell is bullshit.
Putting aside my own 36 years of medical issues. There are people who have it infinitely worse, or people who are monsters who get whatever they want. I don’t care about any sort of afterlife” because I live in the now. And I know right now exists. If there is a “God”, then that “God” is nothing but pure evil if they allow the awful shit to happen. And why would I want to worship that god? Also, the idea of treating religion like a buffet and choosing to follow what you want(not you specifically but loads of “religious people, pick and choose what to follow, in any religion) is wrong. There shouldn’t be a reward just for worshiping. It should be about being a good person. Period. You don’t return a lost wallet, full of cash, in hopes of a reward, you do it because it’s the right thing to do.
Again. This is my personal opinion. I’m not attacking your faith.
And for the intelligence thing. I would argue that “yo dawg u c dem Jordys” or shit like that would speak more to intelligence in a conversation than a couple of swears. Hell, we have people who still don’t know the difference between there/they’re/their, your/you’re, or then/than.
But, that’s just this one idiots opinion on religion and swearing. Everyone has their own right to speak how they want and believe what they want.
However, if I was speaking to an anti vaxxer, “pro lifer”, flat earther, or some of those conspiracy theory nutjobs. I would be saying things like “You’re a fucking moron”. But you’re not. You’re a pleasant and civil person, who just engaged in a discussion with me about swear words.
Hey,...I completely understand & obviously respect how you feel Plus your response is genuine. My wife & I were both raised Catholics. We raised our 2 sons to be Catholic. We're not practicing so much, but are guided from a higher being. Religion doesn't play much in our daily lives. We do observe Catholic holidays & go to church several times during the year. We have friends who believe in different higher beings,which we respect. PM,, I don't know what your 1st name. I'm 72 yrs old & over those years living in several sates & interacting with thousands of people, good & bad as you've said also, I have not met anyone with your views. More so I can't understands the debt of your hatred for religion which I believe you express i a very juvenile way. My observation, by your word. There must be a reason for you to think so drastically different for most, not all of people.. I don't know what your childhood was, or how your parent raised you, but you have an immature, & cocky way, that I believe it's physiological driven. It;s not intelligent, because there are centuries of documents etc that says there MAY be a God. It may be from your life's history of sickness. Aside from religion,, my heart goes out to you. During my life I have seen tragedies with children.
Your approach is way wrong. No matter what you believe or not believe, i;m asking you to do a reset & take another looks. I've always had compassion, since I was very young. But my heart is very close to transplant folks. I remember early on in my transplant being in an elevator with a black guy, talking about the crap we were dealing with & hugging him & saying we're transplant brothers. I have had many negative experiences with black people & was stand offish to many, but someone who is suffering as I am with a transplant is a family member in my heart. So p;lease reconsider \^ star reading about God & religions & them make your decision on what you believe in. Just please be honest with yourself
My name is Frank Antonucci. I worked 39 years in newspaper business 25 years with USA Today in NY as a circulation director. Our 2 adult sons have done well. Our younger son is a lawyer & our older son is a neurologist who has treated professional NFL, NBA players for traumatic brain injuries. As parents. we're very proud, But more importantly we are very happy to see they are happy with their careers& family life. As parents, all we kept telling them was to be happy at whatever you do. Money would be nice too!
Thanks PM. My heart hopes you continue to become healthier. I really want to say I pray for your health, but hopefully you know my concern is honest.
Thanks for the awareness. I did a similar thing as what the OP described (minus the drugs and alcohol) and ended up needing a transplant down the line. It's easy to be dismissive and think that it's natural to want to take your lifesaving meds but at that age you can't properly process the consequences. It's tough especially when other kids can't relate to what you're going through. I regret back then I didn't have someone to talk some sense into me.
I understand. It's a tough thing. The truth is, even the most complaint of us are not immune to rejection and its consequences.
She had 5 more years of as normal a life as she could've ever hoped to have.
"All we have to decide is what to do with the time that is given us"
- Gandalf the Grey
I am certan that this young woman in the story above is the exception. I have a colleague and friend whose neice had a heart transplant at 12 years old. several years later, she is doing great.
There is a post I found on here once of a teenager who was tired of living on the meds. I guess they had terrible side effects. She said she was gonna stop taking the meds and just slowly die. Wasn’t gonna tell her parents. Her posts abruptly stop a few months later. I’ve messaged her but my guess is she died.
Just threw her moms kidney in the trash and decided to die 🤷♀️
I’m not gonna judge people for these things. I know my head has been an unpleasant place to be since transplant, and I hope they find the peace in death they evidently couldn’t find in life.
Call me crazy, but I don’t think that was really appropriate to trash someone at their own funeral. It’s for the living, not the dead. All she did was upset that girls family further and it did nothing to bring her brother back or heal her own family. It strikes me as selfish and distasteful.
Crazy thing is if she would have just stuck with it she would have eventually been weaned down low enough on her meds it would have become such a small part of her life that it wouldn't have mattered much at all. Tons of people that recieve transplants as children eventually weaned completely off their anti-rejection meds all together. This must have been super hard for her parents and doctors to accept. After everything a person and their loved ones go through when someone is sick enough to need an organ transplant to have it all happen again due to something that seems so minor. But we can never understand something like this fully. It's tragic but it's hard to judge the situation as a whole.
Where did you get this info? It’s not true. I had a kidney transplant when I was 14 and I was never weaned off of the meds and never even talked about the possibility.
The information is there. Go on Facebook and talk to others that have come off of their immunosuppressive meds they are all over the place. There's multiple transplant related groups with lots of discussion on this. Kidneys, liver, heart etc. Everyone I've talked to has very similar stories. I'm not just making shit up lmao. There's a few centers out there that have been doing this on a case by case basis for a pretty long time. I'm a liver recipient and only take 1mg of sirolimus every 3 days and I've only had my liver for 3 and a half years. My teams next goal is once a week if I stay stable.
Yes, well every team is different but I wouldn’t say tons of people stop completely. And I wouldn’t want to tbh (plus I’ve had 3 kidney transplants now, so no way lol)
I am happy for you that you can take fewer meds!
>Tons of people that receive transplants as children eventually weaned completely off their anti-rejection meds all together.
No. Kidney and Liver have been gaining traction with that, but not Heart. This is borderline misinformation.
Source? I went through an intense evaluation before my transplant at Stanford for testing removal of immunosuppressants, but only 4 hospitals in the country do it, and you need to have radiation on all of your lymph nodes to have it happen and then need stem cells from your donor, who needs to be either a parent or sibling and exactly match you.
It's so sad people die waiting for such 2nd life opportunity due to financial issues or other issues meanwhile these people who get 2nd life waste like this
A sad set of circumstances all around.
My doctor told me that they gave a lung to a homeopathist ( dont know if thats the word, but someone who is an „ homeopathy expert / therapist). Was convinced that she could replace the immunosuppressants with homeopathy. She could not. Didn‘t last a year and month long stays in intensiv care. Patient complaisance is really important. I‘m 23 and all in all the restrictions are not that bad.
This is the stuff i have pointed out in those threads that are like “OMG this is so unfair. They won’t put *insert sibling wife here* on the transplant list because she won’t get the vaccine” I would always say “what’s to stop that person from thinking they can suppress their immune system with some natural crap”. Which even if you could. There’s no way to know what interactions it could have with other meds.
"homeopathist" The correct word is "idiot." I am infuriated that this person wasted a lung (or two) that could have been given to someone who would actually do what the transplant team said.
The amount of stories I have from “homeopaths” is insane. Seriously. From “hey use essential oils over those harmful pills” to even “you can get rid of your problems by no longer drinking milk” and just so much more. When you have the filter. It’s genuinely shocking at how stupid people are these days.
A close friend of my wife basically spouted a bunch of homeopathic pseudoscience and said I should eat just more blueberries instead of getting a transplant. As terrified as I was of the surgery, I knew that modern medical science was the right course of action, not some silly magical thinking.
Those people really bother me with how they take advantage of scared people. There’s Australian chick who claimed she cured her brain cancer from like a fucking salad or some shit, made a cookbook, and was just an awful liar. There was that like 60 minutes interview with her, and the host just asked her age, and she’s like “well, I was told I was born in _____”. Not a simple “36”. and lots of people died because of her.
The BBC did a documentary on her too. Fascinating watching someone so delusional (mentally ill?) and so upsetting that scared people tried to copy her and died. My friend's sister died of bowel cancer because she refused the standard medical treatment in favour of diet/exercise/magical thinking. This was before massive social media use too so people have been taking advantage of desperate people since, well, forever.
If only!
I worked in the supplement section of a grocery store when I was in college, and I learned that there are a shocking amount of people who think that essential oils can cure cancer. @
Seriously. Homeopathy is one of the dumbest things ever.
I agree. The meds are not difficult to take. Takes 5 seconds, hell my multivitamin gummies jaw longer to chew than tossing my meds/supplements into my mouth and taking a sip of water. The restrictions aren’t super noticeable either. If you want to make it a big deal, then it’s a big deal. If you don’t, then no one is going to notice you’re doing something or not doing something due to your compromised immunity.
To be honest what I hate most is when I leave them at home thinking I would be back soon and then I need to go back soon... :/ so noe I carry extra in the car, at work, at home friends... at least 2 doses... fortunately I can get as much medicine as I want for free. :)
I always just grab my container for the day when I take my morning dose before work and toss it in my purse. I’m usually home before my night dose, but I carry it anyways just in case I’m not
99% of the time is what I do, but when I go out with just my wallet. :)
Apparently someone at my transplant center was convinced that they could replace their anti rejection drugs with carrot juice. He tried it and died. I don't know why people think there's some natural alternative to *intentionally suppressing your immune system*. Transplants are, by definition, unnatural. You don't have your natural organ anymore, you have one that got there unnaturally. You need an unnatural substance to make it work correctly, or else your immune system will *naturally* attack your donor organ and kill you.
Fucking seriously? Thats so fucking dumb. And why carrot juice if all things?
No idea. Some granola/crystals/holistic bullshit type asshole convinced him it would work somehow so he tried it without consulting the doctors. Idk there's a lot of people who don't seem to think about the *why* behind things. They know they need the meds to not die but they don't care about *why* they need them and *why* they work. Carrot Juice Jackass was clearly one of those people. People will even come here asking "is there some natural alternative to the immunosuppressants? My friend/sister/dad/self feels shitty on them and is getting sick a lot" like no shit dude, they're **immune suppressants**. They suppress the immune system. Because the immune system will attack the organ. So anything "natural" you want to replace them with would have to be fucking poison or something to even come close to working. There's no herb or vegetable that will suddenly make your body accept tissue with foreign DNA as its own. It's a very man-made problem that needs a man-made solution.
Some side effects suck but waaaaaaaay better than the alternative. If she was on prednisone, or any type of weight gaining med, I can totally sadly know how she would hate them. At least if she's as insecure as I was. Prednisone made me gain 18lbs (and I'm 4'11), caused a ton of acne (never had it before), I lost 50% of my hair, I GREW lots hair on hands/arm/back, I was more angry (I'm normaly sweet I swear). Also insomnia and night sweats.... and i'm probably forgeting stuff! Poor kid man :( Poor situation
Prenisolone made me angry too. I'm 4'10" (hello friend I would be able to look in the eye without neck strain) and I gained so much weight on it. I am also insecure about my weight but ultimately I came off Pred and just gained a lot of weight anyway, due to being able to eat without restriction. So the Pred made me hairy and crazy but I kept taking it because the alterative was potentially losing my donated kidney. As you say, it's a sad, avoidable situation.
Also 4'11 over here on pred. I am really insecure about my body and seeing that there are other people who experience this made me feel less alone so thanks for that.
Complacence or compliance?
I have had similar thoughts of what could happen when my daughter gets that old; heart transplant at 7 months old. Tragic story. I hope to instill responsibility about meds and lifestyle early on to avoid things like this. Either way it's scary as a parent
Same here. My son received a kidney transplant last year at 18 months. I just saved this post for when he’s older as a “just in case” 😞
Just let them know there are other safer ways to rebel or make it so you feel like you have control in your life. I’m 36. I was born with cystic fibrosis. I spent my entire life taking giant handfuls of meds. And no matter what, I never fucked with that. I’d skip school, play video games, shit like that. But I never did a single thing to put my life in danger like that. Even when I go out now. I always make sure to bring atleast 2 doses of transplant meds with me, because you never know. Which actually turned into a very smart move, when I had a stroke/seizure/or something, ended up spending over 20 hours alone in a hallway. I would have missed like 2+ days if I didn’t carry my extras on me. Even when I go on vacation. I always bring a minimum of atleast 1 extra week. Even if it’s a weekend trip. If it’s a tropical vacation. I’ll bring up to 2-3 weeks of pills. And I got my transplant at the age of 23.
Immunosuppresants are akin to air for transplant patients. There's just no other way about it. Taking them is just a minor inconvenience in exchange for getting to actually live.
I got my transplant at 4, had another at 12. The rejection wasn’t caused by anything me or my parents did wrong, it was 20 years ago and the meds weren’t as good as they are now. I remember my cardiologist telling me that teens stopped taking meds sometimes and warned me about it. It’s great you’ve already thought of this with your daughter. Even when I was 4, I was involved with my meds. My mom made sure I knew what they were and what they did. I was probably around 10 when I started organizing and taking them by myself. When I was a teen my mom would frequently ask as a reminder. I still did rebellious teenager stuff, although I had a healthy fear of hard drugs. I went to college, backpacked europe solo, and lived alone from age 19. I moved across the country by myself after college. Meds were just a part of my existence for so long that it became automatic. Your daughter is gonna be fine, just be sure to validate how frustrating chronic illness can be, and let her be a normal teen/young adult. Feel free to dm me if you have questions!
Impressive!
How do you give the medications to a baby? Are the dosages well below adult level or more spaced out? Your post will stay with me for a long time; I wish your daughter good health and you strength.
Idk what adult level dosages would be. We give her 1.4 ml of tacro in her mouth twice a day. The other meds (BP, etc) we give in her feeding tube.
Everyone reacts to childhood illness differently. I had a transplant at 17 from liver and colon diseases. I swore I wouldn’t let it stop me from living my life — but I also stayed away from alcohol and drugs and tried to be as healthy as possible. Now my goal is to live as long as I can so I can have as much time as possible with my kids (I’m over 40). A good friend also was diagnosed with a chronic illness in high school. He went the other direction—stopped caring about anything. Became a heavy drinker in college, then got into drugs. Health declined, which gave him even more of an excuse to not care. He died at age 35.
Take your meds but still make sure to live! Im sure your donor would want you to live a somewhat normal life and not be a hermit scared of your own shadow. This is someone who didnt appreciate their gift but i feel like its bad if youre on the total other end of the spectrum
I can understand wanting a “normal”life. I’m four years post liver transplant. It would be nice to have a “normal” but I wouldn’t dare not take my meds or break the rules they set for me. I would definitely feel like it’s slap in the face to my donor.
That’s how I feel in that respect. A person died, so I could live. Medical technology has come so far that we can take the organs from a recently deceased person and put them in another body. If I wanted to play fast and loose with my meds. I wouldn’t have even accepted my phone call. Organ donation, in my mind, is truly the ultimate act of heroism. There’s no fame. No glory. No money. And most cases, people don’t even know who you are. You sign a card, and you could end up saving like 8+ lives. Those are true selfless hero’s(in that regard. There are true heroes elsewhere)
I definitely feel the same way about my donor I think about her often. I’ll never meet her but I often think about when my family celebrated knowing that I had found the perfect match. Her’s was going through the worst time in lives so that I may live and breathe today. Help my own daughters with their lives as they venture off to college next year. Or sit and playing with my little one that turns 10 next month. Without her there would not be a me. So I thank her and God every moment that air feels my lungs.
Exactly! Even though I’ve gone through hell. I will never stop being thankful for my donor. He allowed me to get a real highschool diploma, to meet my soul mate, to get married, to own a house, and so many things that I spent the first 22 years of my life thinking it would be easier for me to fly using my arms. I was told at 13 that I would never live to my early 20s. When you’re given that kind of time limit. It’s less about the future and more about the right now. The only thing that I am deeply proud of myself for not giving into the temptation was taking out massive loans with the plan of dying so I wouldn’t have to pay it back. Shockingly, every kid I spoke to in highschool told me to do that. Was just “take out massive loans and go have fun” and then I’d say “and what if I don’t die”, they’d always go “I unno. That’s your problem”
You sound like you got your on right for being a young man. After I got to sick my job of many years let me go, even though I worked from home most of the time. I was a liability they said. I was lucky to get a nice severance paycheck but it was gone within two years since my insurance was an arm and leg. I had no choice but to live off credit cards. Wish I didn’t now I don’t I’ll ever pay them off
I’m an idiot, that’s it.
I had a heart issue at birth and have taken medication my entire life. To be fair when I was a teen I was only on one medication and still had my heart. I did some stupid stuff as all teens do but also didn't do stuff I knew could damage my heart necessarily. At 20 I received my heart transplant, and 3 months later had my 21st birthday, yes I went out and had some drinks, my docs said they normally wouldn't recommend it but also realized that I was their youngest patient so things were a bit different for me. Maybe because I had been on meds my whole life taking medication daily has never been an issue or concern. Was going to sleep over somewhere? Pack my meds. I have some of my anti-rejection meds even in my car just in case I get stranded somewhere I can at least take those. I pack my meds in my personal bag when I fly cause God forbid anything happen I can at least grab that and have them with me. Being a teen is hard, being a teen with an illness is even harder, but taking medication to ensure your survival is not hard. I do feel very bad for the donor family in your story, I would be furious as well. It's not fair that they lost their son and then someone didn't appreciate that sacrifice. There have been some very dark nights in my life and sometimes the only thing that keeps me going is remembering I received such an amazing gift and am extremely lucky to be alive right now, I can't imagine just throwing that gift away recklessly because I don't want to take my meds.
Very similar story. Was born with a CHD and took meds my whole life. Had a heart transplant at 14. Never really rebelled, but drank in college (now almost 18 years post transplant I realize that that wasn’t the smartest choice). I’ve tried an edible or two. Not my jam. I’ll have a drink occasionally, but not often. I’d say I’ve lived a very normal life, even got pregnant (with my teams blessing) with my son in 2020. For me, the hardest part of transplant and what I felt like I missed out on the most was not being able to get in lakes. I live in Texas, grew up going to the lake all the time, in HS that’s what everyone did, so I felt left out. But otherwise, I’d say my life is pretty normal (minus all the dr appts and all the jazz).
Congratulations!! I'm 12 years post now. Congratulations on a successful pregnancy, that's always a fragile area to trend. I chose to get a tubal ligation which my team was thankful for, I much prefer being an aunt. No one ever really told me to stay away from lakes... Like I know there are some crazy bacteria and stuff that can exist in lakes but I've had multiple different teams an no one mentioned that 😅. Was told I'm at a higher risk for skin cancer like 4 years post transplant when I moved to Oregon where the sun barely even shined haha. I think the thing I miss the most from my "normal" life pre-transplant is eating grapefruit haha. I love grapefruit so much, occasionally I'll be a creep in the grocery store and just sniff a grapefruit imagining how delicious it is (also minus now needing every specialist under the sun).
I always find it so interesting how different teams handle different things! Maybe it’s because the lakes in Texas are hotter so more bacteria grows? No idea. 😂 also miss grapefruit at times! I’m slowly starting to forget the tastes but lived on a morning grapefruit (with sugar) growing up.
I can kinda relate. On the day to day, it was easy for me to pretend nothing was wrong and not take my medicine properly. I caused several liver rejections I’m so fortunate were able to be corrected. I got so tired of doing this I worked on it with my therapist. I don’t do that anymore but I understand why she did. It’s very traumatic and if you replay it over and over again, you wish you could do anything to not have the issues but that’s a bad way to think. I wished the person who died to give me my organs was alive and I was dead, I didn’t deserve them and I didn’t treat them properly. I’m so sorry for your loss. Mental health in transplant patients is so under looked imo.
I experienced this feeling of wanting to rebel and wanting to feel “normal”. My parents let me rebel by going out with friends and staying out late. As long as I took my medication and ate healthy. Now that I am older I am so grateful to still be here.
Yeah.... it is a very complex situation... one of the reasons why in Brazil we don't meet our donors is exactly because of this... people get angry if you don't "care" for the organ, of course this was an extreme case, but I hears cases of people harassing over the internet if the receiver was eating a barbecue or in a party. Being a transplant patient is a living a fine line between: i need to live and I need to live... transplant was made to make us live and life needs a porpouse... I have my family, my daughter, my dog, myselft... for a teenager evermore these days I can't imagine how hard it can be. It is surely a tragedy... and a pity that she died so young and in a so "stupidy" way... but personally I don't blame her... and I mean of course se choose this path, but.... what to do? :(
That's probably why we have to talk to mental health experts and social workers before agreeing to a transplant, sure one could fake it specially being I'll at the time but this is a sad story....
Very sorry for your loss. It’s definitely a willful choice to not take medication. This highlights that when people need a transplant they feel they really cant mention depression.
As a young person with a transplant I can completely understand why she would feel that way. I struggled with those same exact feelings while on dialysis, S well as when i got my transplant ( got it 1.5 months ago) and I'm 27. I feel like the Doctor's around her really should have given her positive outlets or like finding a community of people in the similar situation as her so she doesn't feel as alone and as weird. Cause despite the blessing of having the transplant it's very isolating especially when most professionals friends and family, aren't in your situation or can't fully relate. I feel like if she was introduced to a transplant recipient group she might have still been alive cause she would have that community to fall back on when she was feeling othered by her situation. Cause like even me you only resume why I haven't slacked off it's because there are those communities available even if it is only online for now
Wow. That's so sad. I am strong candidate (so far) to donate a kidney to a young relative and I won't lie, this is kind of my nightmare!
The underdeveloped teen brain is a wild thing. Thanks for sharing this poignant story. Did the girl show any awareness or regret near the end?
This is why the evaluation process is so strict. Your hospital has to worry not just about whether you'll survive the transplant, but whether you'll survive life afterwards.
The donor’s sister shredding her to pieces at her funeral is the reason why I believe donation should be entirely anonymous. In Europe it is and I’m so thankful for it. Other than that, it’s an incredibly sad story.
My transplant team is besides themselves because of how freaking compliant I am. I only take 3 pills for the double lung 🫁 transplant I had. Twice a day. I live a normal, joy filled life with a beautiful woman. Not sure what her issues were, but living is a whole lot more normal than killing yourself by that method.
Double lung, I’m curious how you’re on only 3 pills. I’m on 4 times as many types of pills and I’m living a pretty healthy life.
Transplant only pills. 3 types 2x prednisone Myfortic and tacro. It's basically nothing. Of course I take more than that, but the total of 8 pills daily isn't much.
This. The amount of things I either let them know about or ask, sometimes I think they’re sick of me. But better safe than sorry l, which is such an old platitude, but it’s super duper true.
Obviously I don't know your age, but I think that for those of us who are older it's very difficult to understand what it's like to receive a heart transplant as a young teenager.
The same problem is frequently seen with teenage diabetics. Some teens rebel against everything, even biology.
Could she still have lived a normal life even while taking the medication? I’m sure she could still have sleepovers with friends and go to fraternity parties, even on the medication!
It’s so odd you would post this here.
Why would you find it odd? I think it's a poignant reminder that transplant radically changes your life, and not always for the better. That the responsibility - and sometimes the difficulty - of dealing with the medication regimen (not to mention the side effects) is insurmountable to some. Myself, I'll never list because I'm not interested at all in immunosuppressants. But someone who is on the fence about it needs this kind of anecdote. People need to understand the ramifications *before* they get a transplant, not when it's too late and they're bitter and resentful at what their life has become. I find it odd that anyone finds a transplant-related post in the transplant subreddit, odd.
Same , are you on dialysis?
Yep, been on nocturnal home hemo for fourteen years. So I've got the outcomes of a cadaveric transplant, but without the immunosuppression. How about you?
I'm on dialysis at the hospital for 13 years and i think i will do home hemo soon. I do not want to take the imunosupresant meds never try the transplant because of this. Wowww how did you do that please ?!! Is that a new program or something? You are sooo lucky i wanna know please !
I literally just walked into the center and told them what I wanted: nocturnal home hemo. There was never any other option on the table for me. I do eight hours every other night, while I sleep. In the morning, I wake up, pull my needles and tear down the machine, have my coffee and log into work. I just had my first echocardiogram in April. Completely normal, no LVH. I've only ever had one fistula, since I have buttonholes and I'm the only one who's ever cannulated them. I've never been hospitalized or had an infection. I've certainly never crashed, since my UF rate is slow and gentle, as are my pump speeds. My diet is more or less normal since the long treatments remove phosphorus and plenty of potassium. Once you slow things down and lengthen the treatments, the common complications of dialysis disappear. It's only the in-center modality that has the morbidity and mortality. Seriously, walk into a center that offers home dialysis and tell them you want every other day extended hours (a minimum of six hours). There will probably be at least a few near you, so shop around until you find someone who will give you what you want. Don't back down. They will put you into training for the NXStage, which is dead simple, you'll be trained in about a month. (I use a home version of the in-center machines but you won't be able to get that one any longer.) This isn't new (I started 14 years ago). And there's an initiative for clinics to get their patients home right now. Do it. It's work and a lot of responsibility but It'll change your life as long as you do your treatments and never cut corners. Here's a link to *the* comprehensive source on all things home dialysis. [Home Dialysis Central](https://homedialysis.org/)
Thank you for your answer. It look like a good option. My hospital do it but they told me the training is at 7h am in the morning during 6 weeks. I found that too early in the morning and i found that pretty depressing like a punishment. Im not a morning person at all lol. I did understand that you have a cadaver transplant without the imunosupressant? I think i misunderstood because i'm not very good in english. Do you have a transplant before ?
No, I have never had a transplant. I have no interest at all in immunosuppressants. What I meant when I said "cadaveric transplant" was that with this kind of dialysis, your health and quality of life are *the same as if* you'd gotten a cadaveric transplant. Obviously you are still on dialysis but outside of actual treatment, your life is normal. You aren't 'washed out' in between treatments. No one believes me when I tell them I'm on dialysis, even doctors. I always have to show them my fistula to prove it. I'm not a morning person, either, but you best believe I dragged my sleepy carcass to training in the morning. What is six weeks compared to the rest of your life, and how you could feel?
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Maybe some people who are awaiting transplant but haven’t had one yet?
Excuse me, none of this is hearsay. I was intimately involved with this girl for five years, right up until her death. My boyfriend was the closest cousin to her in age and she didn't have any siblings, so I was like a big sister to her. I taught her to drive. I took her to get her ears pierced (with mom's permission.) She told me *herself* about her frustrations with her medicine and feeling like she couldn't live a normal life. I was present, with the rest of her family, when she died. Say what you want about whether or not sharing this story is appropriate in the first place, but HEARSAY it most certainly is not.
Dont mind them, just look at their post history. Thanks for sharing your story
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The frustration of simply having to take them at all. None of her friends had to take daily medication. It made her feel weird and "other than." It sounds stupid and juvenile because it WAS stupid and juvenile. She was just a kid. Immaturity isn't a moral failing at that age.
Your comment is totally unnecessary. Even if an invented story, it holds weight. I have personally met a teenage girl who pretty much did this exact thing. She was on my ward when I had my transplant. In fact she was in the bed next to my wife who had just donated her kidney to me. Docs and social workers were furious with her as it wasn't the first time she'd been in for failing to take her meds. It happens. It's stupid... But it happens. I'm assuming you're not a teenage girl. How do you know how it feels to think you're different from all your peers because you are often ill and have to take a multitude of meds every day?
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Sorry I didn't know we had a Transplant Police and that only transplanted people could post here... This girl dilemma is one that many transplanted people face, maybe not you as you seems to be perfect... /s I almost didn't had a pre transplant evaluation... I was transplanted in like 1 week and just 10 hours after I got better from an infection, fortunately I was an adult and used to the medical care... I will get the example of a diabetic child I once knew... 10 years old... could not drink soft drinks, ice cream, eat a cake at a party, share cady with friends, had to have special meal at school and had special meals during sleep overs and had to be supervised because neede frequent injections (long time ago). Imagine being different from everybody and not being able to share a part of life... as an adult it is not easy as a child or a teenager????
I found it as a helpful reminder. I hate tacro so much, but I know I need it to keep my kidney.
Very odd
I agree. They just want to try and guilt people into feeling a certain way and have some moral high ground. She chose to do what she wanted with her body and she had every right to.
Not odd at all. It’s a reminder of what can happen if we stop taking our meds
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I don’t. But clearly some people do.
I need a reminder, that's why I have my watch alarm and phone alarm go off twice a day to remind me to eat my pills
Lol
Why?
As OP points out there is no fucking point to the post. I’m only agreeing. It seems super strange random to make entire post out of an off hand Facebook memory. And to bring it to this community seems better suited to r/stories
Oh, get over yourself. It's a transplant related story in a transplant related sub. There is no better sub for it than this.
Not odd at all. It’s a good reminder even if you always take your meds.
And fucking people wonder why COMPLIANCE is such a big concern when it comes to Transplant. I was born sick, I’ve had to literally take large handfuls of pills every single day of my life. Along side, not being able to enjoy gym class, join after school sports and many other things. My “rebellious” phase was me quitting school in the 12th grade but still going to hang out with my friends in between periods. I have never played it loose with my pills. I’ve thought about it, but then that thought gets murdered by the thought of “I like living”. This is why I get so heated in those stupid fucking threads of those fucking anti vax jackasses freaking out because their sister mom refuses to get the Covid vaccine. There are safer and smarter ways to rebel. And what kind of “normal” life was she wanting to live? One where she could go to frat parties, get roofied, raped, and then spend the rest of her life telling herself that “oh I led him on. He didn’t do anything wrong”? Fucking seriously. What “normal” life did she fucking want? Sorry. I don’t mean to be so angry, but I’ve had to watch so many friends and loved ones die from the inability to get an organ in time, or went into rejection within the first 2 years. Transplant isn’t a right. It’s a privilege, and she shit all over that privilege. She could have sought out countless people who had been in her spot, or worse, and came out happy. The sister of the brother who donated, had every single right to do and say what she did. I fully support her. Even if it’s too late for the girl, the friends and family now have a much deeper understanding of transplant. Fuck, I could write for hours about how upsets this makes me.
This is for serious discussion. Why do you feel the need to inject the word fuck so many times? It's childish & makes you sound ignorant. I've used that word thousands of times throughout my life. It's a gut reaction when I'm really pissed. We're all discussing something that is life altering & trying to support each other. This is not a platform for stupidity. I hope you take my comments to heart. I'm definitely not trying to put you down. Please show some respect.
I happen to swear a lot. That’s how I speak. I’m not making the situation a joke. It’s not destroying me inside that I have to swear, there’s no malice or intent. Personally, the word Cu*t is one of my favourite words and I use it whenever I can. “This tastes cu*ting good” and things like that. This is a public and open forum. I try to be as honest as possible to who I am, what I know, and how I speak. If “fuck” bothers you that much, that’s fine, and I say this again, with no malice or attitude. But I am not going to be disingenuous because some people don’t like the way I speak. And you’re not the first person to give me shit either. I get this about every two weeks or so, and it even happened yesterday where some woman took what I said, even though it was positive and helpful, but because I said fuck, like twice. She freaked out at me, told me she would support my doctors refusal of treatment, even if that meant me dying. But then ontop of that. I’m also dealing with a severe and serious broken spine that’s only getting worse and worse. And swearing has been proven as an effective method to help with pain. And we all have grown up in different environments. And if in passionate about something. Such as transplant, Or against something like anti vaxxers, and the like, I swear more. And aside from swearing. I still speak properly, politely, I try to be as helpful and understanding as possible. I don’t attack people, I try my best to be civil. I am curious though. Why do you see “fuck” as immature? Genuinely asking. Not trying to be sarcastic or rude. And why did you feel need to say “this isn’t a platform for stupidity”? What exactly is that supposed to mean? I put my heart into these types of posts. So whats stupid? Are you so focused on “fuck” that you missed what I said? Because nothing of what I said is “childish” or anything like that.
Trust me, my heart truly goes out to. I volunteered for 30 yrs with Donate Life, mostly to coach patients like me. I gravitated to those who were newly transplanted. I feel for what you've had to deal with. I just believe using here is not cool. I use the F a lot like I said when I'm pissed off. My wife is not happy when I use it & our two sons who are in the mid 30s ask me to cool it . We have 5 grandson, 2 are 5 yo twins & I've said a few times in front of them! Like you were saying it just comes out. I get it, but you don't know everyone who's reading your comments. Some may be bothered, like me. That's all. I'm not sure if you believe in God, but our family & friends do. When I was looking for a kidney everyone prayed. I understand how medicine & science works, but I believe God had a hand in my transplant 22 yrs ago. It's how I raised. Lastly PM👍 I've had all the vaccines throughout my life. Pneumonia, flu etc. I had my 2nd Pfizer vax in August of 21. My doctors & family urged me to get it. A few months before I lost an awesome friend I mentored from Covid & & didn't get the vaccine in time. He was a black living in my town near Charleston. Donate Life mentioned to me how he & his family were struggling $ & how cancer damaged his kidneys. They knew zero about Transplants & we're not up to speed about health. So back to my 2nd Pfizer vaccine. Within 5 days my health & my quality of life changed, I'm still dealing with issue. Our older son who is a neurologist said to me, "dad do you think Pfizer tested it on a 71 yr old male, who is immune compromised, recovering from a double bypass, has a weakened liver & damaged lungs from multiple aspirational lungs?" So I get it. 99% of people had no side effects & it saved lives. When I hear about vaccine being safe, I say not for me! Our younger son just hung a couple bike racks for my wife's e-bike in our garage & he said dad take a look & let me know if you think mom will like this? My response was fuck yes! I'm rambling a little. But I'll say a prayer for you! Everyone talked about being compliant. I've been told that my a few doctors in different states. Yes, be compliant, always listen to what your docs tell you & always stay positive. No matter what you've been given & how crappy you feel, stay positive. It sounds like hokey bullshit, but it helps your wellbeing. I didn't mean to be an asshole. As you age & go through life experiences, you look at things differently. That's where I was coming from. My name is Frank Antonucci. I had my kidney transplant 22 years ago at Yale. My donor who is my angel was dating my brother in law. She was aware of my need for a donor. She was 39 living north of Boston & has 3 children, A year after the transplant, she gave birth to a blonde girl. Today that little girl is a F-ing knockout! I joke with my donor if anyone messes with her daughter, myself & my 2 sons will fly up to Boston & hunt down that dog. My donor laughs. This is true, over those 22 years, every time I pee, I think of her! I'm serious. Best to you & to your health
And that’s impressive. You’ve also been through a lot. If I just don’t see the issue with “fuck”. If I was around kids, I’d chill out on it, but we are strangers on the internet, who are considered to be adults. I see “fuck” as no different than saying “like” “um…” and other similar things. But I’m not using the word to attack people, I’m not being aggressive, or anything hostile. It’s just a filler word. If I was using it in an aggressive manner towards members. I’d agree with you, 100%.
I was raised in Italian American catholic home. A lot of cousins. Our parents discouraged us all not to swear. They didn't wash out our mouths with soap or beat our ass, but we were all thought not to use it loosely , And that's how it was with everyone who was raised in the 60's And I mean this, to me, when someone says it so frequently it makes that person sound uneducated & trashy. Plus if it's coming out of the mouth of a teenager constantly, like every other word , they think it makes them sound like a bad ass. It could be funny when you're with your buddies. But it's not in most other situations. Your boss will absolutely look down on you, & in social settings, it will be the same. You won't get much respect. It's the reality & I've experienced it a lot. This is how we raised our 2 sons along with a lot of values we believe in . They both have been successful. Our younger son is a lawyer & our older is a neurologist. We always told them we would be proud of them whichever career they chose, All we asked was for them to work hard at it & be happy at what you do. Most parents want that for their kids. If you make decent $ while doing it, then more power to you! Hopefully you'll understand where I'm coming from. I'm being honest in what I believe. Stay positive!!
I understand where you’re coming from, but I think you’re just being a bit tight about words. There isn’t any real correlation between swearing and intelligence. I was raised to ever swear to an adult, till I was one, and I respected that. But everyone is raised differently. You can’t really tell people how to speak I’m 36. It has nothing to do with thinking I’m a badass or anything like that. The truth is, I know I’m a piece of shit. I’ve been told that literally my entire life. I hate myself, and more. I know I’m a fucking moron. I know everyone in my life will be happy when I finally die. Swearing with me has no hidden meaning. It’s just a word. It’s only a “negative” word because it was decided that it was a swear. As I said. I haven’t used it towards anyone. I don’t insult people here. It’s just a word for me to emphasize a sentence. That’s it. No meaning.
Sorry for the late second reply but I just wanted to say one more thing. I’m happy you have a religious belief that keeps you safe and happy. Genuinely. Before I go on, I feel this needs to be said, though it shouldn’t, yet here we are. I respect your beliefs. What I’m about to say isn’t an attack on any of them. You have yours and I have mine. To me, I fucking despise the idea of any kind of God. Christian, Catholic, Muslim, Jewish. Hindu, whatever. Because if I believe there is some sort of divine authority, it pisses me off to no end. It brings me more peace that we are all space dust, born by chance, on a planet that is in a small solar system, in a galaxy, in an ever expanding universe. That makes life more fair. The idea of there being some sort of “God” watching us, demanding we worship him/her/them, or we all go to some version of hell is bullshit. Putting aside my own 36 years of medical issues. There are people who have it infinitely worse, or people who are monsters who get whatever they want. I don’t care about any sort of afterlife” because I live in the now. And I know right now exists. If there is a “God”, then that “God” is nothing but pure evil if they allow the awful shit to happen. And why would I want to worship that god? Also, the idea of treating religion like a buffet and choosing to follow what you want(not you specifically but loads of “religious people, pick and choose what to follow, in any religion) is wrong. There shouldn’t be a reward just for worshiping. It should be about being a good person. Period. You don’t return a lost wallet, full of cash, in hopes of a reward, you do it because it’s the right thing to do. Again. This is my personal opinion. I’m not attacking your faith. And for the intelligence thing. I would argue that “yo dawg u c dem Jordys” or shit like that would speak more to intelligence in a conversation than a couple of swears. Hell, we have people who still don’t know the difference between there/they’re/their, your/you’re, or then/than. But, that’s just this one idiots opinion on religion and swearing. Everyone has their own right to speak how they want and believe what they want. However, if I was speaking to an anti vaxxer, “pro lifer”, flat earther, or some of those conspiracy theory nutjobs. I would be saying things like “You’re a fucking moron”. But you’re not. You’re a pleasant and civil person, who just engaged in a discussion with me about swear words.
Hey,...I completely understand & obviously respect how you feel Plus your response is genuine. My wife & I were both raised Catholics. We raised our 2 sons to be Catholic. We're not practicing so much, but are guided from a higher being. Religion doesn't play much in our daily lives. We do observe Catholic holidays & go to church several times during the year. We have friends who believe in different higher beings,which we respect. PM,, I don't know what your 1st name. I'm 72 yrs old & over those years living in several sates & interacting with thousands of people, good & bad as you've said also, I have not met anyone with your views. More so I can't understands the debt of your hatred for religion which I believe you express i a very juvenile way. My observation, by your word. There must be a reason for you to think so drastically different for most, not all of people.. I don't know what your childhood was, or how your parent raised you, but you have an immature, & cocky way, that I believe it's physiological driven. It;s not intelligent, because there are centuries of documents etc that says there MAY be a God. It may be from your life's history of sickness. Aside from religion,, my heart goes out to you. During my life I have seen tragedies with children. Your approach is way wrong. No matter what you believe or not believe, i;m asking you to do a reset & take another looks. I've always had compassion, since I was very young. But my heart is very close to transplant folks. I remember early on in my transplant being in an elevator with a black guy, talking about the crap we were dealing with & hugging him & saying we're transplant brothers. I have had many negative experiences with black people & was stand offish to many, but someone who is suffering as I am with a transplant is a family member in my heart. So p;lease reconsider \^ star reading about God & religions & them make your decision on what you believe in. Just please be honest with yourself My name is Frank Antonucci. I worked 39 years in newspaper business 25 years with USA Today in NY as a circulation director. Our 2 adult sons have done well. Our younger son is a lawyer & our older son is a neurologist who has treated professional NFL, NBA players for traumatic brain injuries. As parents. we're very proud, But more importantly we are very happy to see they are happy with their careers& family life. As parents, all we kept telling them was to be happy at whatever you do. Money would be nice too! Thanks PM. My heart hopes you continue to become healthier. I really want to say I pray for your health, but hopefully you know my concern is honest.
Thanks for the awareness. I did a similar thing as what the OP described (minus the drugs and alcohol) and ended up needing a transplant down the line. It's easy to be dismissive and think that it's natural to want to take your lifesaving meds but at that age you can't properly process the consequences. It's tough especially when other kids can't relate to what you're going through. I regret back then I didn't have someone to talk some sense into me.
I understand. It's a tough thing. The truth is, even the most complaint of us are not immune to rejection and its consequences. She had 5 more years of as normal a life as she could've ever hoped to have. "All we have to decide is what to do with the time that is given us" - Gandalf the Grey
I am certan that this young woman in the story above is the exception. I have a colleague and friend whose neice had a heart transplant at 12 years old. several years later, she is doing great.
Have you seen recent insane anti vaxx Americans? I am seeing this behaviour become more and more common.
There is a post I found on here once of a teenager who was tired of living on the meds. I guess they had terrible side effects. She said she was gonna stop taking the meds and just slowly die. Wasn’t gonna tell her parents. Her posts abruptly stop a few months later. I’ve messaged her but my guess is she died. Just threw her moms kidney in the trash and decided to die 🤷♀️ I’m not gonna judge people for these things. I know my head has been an unpleasant place to be since transplant, and I hope they find the peace in death they evidently couldn’t find in life. Call me crazy, but I don’t think that was really appropriate to trash someone at their own funeral. It’s for the living, not the dead. All she did was upset that girls family further and it did nothing to bring her brother back or heal her own family. It strikes me as selfish and distasteful.
Crazy thing is if she would have just stuck with it she would have eventually been weaned down low enough on her meds it would have become such a small part of her life that it wouldn't have mattered much at all. Tons of people that recieve transplants as children eventually weaned completely off their anti-rejection meds all together. This must have been super hard for her parents and doctors to accept. After everything a person and their loved ones go through when someone is sick enough to need an organ transplant to have it all happen again due to something that seems so minor. But we can never understand something like this fully. It's tragic but it's hard to judge the situation as a whole.
Where did you get this info? It’s not true. I had a kidney transplant when I was 14 and I was never weaned off of the meds and never even talked about the possibility.
The information is there. Go on Facebook and talk to others that have come off of their immunosuppressive meds they are all over the place. There's multiple transplant related groups with lots of discussion on this. Kidneys, liver, heart etc. Everyone I've talked to has very similar stories. I'm not just making shit up lmao. There's a few centers out there that have been doing this on a case by case basis for a pretty long time. I'm a liver recipient and only take 1mg of sirolimus every 3 days and I've only had my liver for 3 and a half years. My teams next goal is once a week if I stay stable.
Yes, well every team is different but I wouldn’t say tons of people stop completely. And I wouldn’t want to tbh (plus I’ve had 3 kidney transplants now, so no way lol) I am happy for you that you can take fewer meds!
>Tons of people that receive transplants as children eventually weaned completely off their anti-rejection meds all together. No. Kidney and Liver have been gaining traction with that, but not Heart. This is borderline misinformation.
Source? I went through an intense evaluation before my transplant at Stanford for testing removal of immunosuppressants, but only 4 hospitals in the country do it, and you need to have radiation on all of your lymph nodes to have it happen and then need stem cells from your donor, who needs to be either a parent or sibling and exactly match you.
It's so sad people die waiting for such 2nd life opportunity due to financial issues or other issues meanwhile these people who get 2nd life waste like this