Hi there, I am Brody Black, Non-Directed Kidney Donor and Library Enthusiast, and I am here to discuss non-directed kidney donation, public libraries and how we can make the world a better place. I'd love to talk to you about all that and so much more.

Proof: https://www.instagram.com/p/BzGb1nenywb/ https://www.instagram.com/p/BzGb1nenywb/ (Proof will be posted again at the bottom as well.)

https://imgur.com/fgzkz1B (me)

The username is from Joe Hill's novel The Fireman, she is the incredible heroine that I am not quite, but we both have a good dose of Poppins in us.

A week ago I gave my kidney to a stranger, it was the end to a long process that lasted a bit less than a year, and realistically began long before that. I first considered kidney donation as I watched posts come up on Reddit's front page for people asking for kidneys. It spoke to a part of me that said, "I can do that", but it took awhile to take root, and it was Dylan Matthews' video on youtube (https://www.youtube.com/watch?v=x7EglP5A2Hg) in which he discussed his experiences donating a kidney to stranger through non-directed donation that spoke to me. It was like lightning striking, I felt it in my bones, that's what I wanted to do. So, I went through the National Kidney Registry (https://www.kidneyregistry.org/?cookie=1), did tests for them, got approved and they asked me which hospital I wished to proceed forward with, it was an easy choice. From there I did the rest of my work-up, surgery and recovery with the UCLA Transplant Program (https://www.uclahealth.org/transplants/kidney). That is the short story.

I am a week out of surgery and I look, act, and live a fairly normal life. I can't lift 10 pounds or over, or exercise. It is a good time to loaf, guilt free. In this time of goofing off I am watching horror movies, playing Fallout 4, reading novels, going on long walks, doing crosswords, and trying to perfect making onigiri. I am on a grand total of two medications, Tylenol and docusate sodium, and have been on only that since my second day out of the hospital. My grand total stay in the hospital recovery unit (TRU) was about 24 hours.

During my many, many trips to UCLA for work-ups, I started to kill time by heading to the closest public library, a suggestion of an old friend. It was an immediate crush, and as I learned about all the programs and services they offer to their communities I fell in absolute, overwhelming love with the LAPL system. As a way to get to know the library system and Los Angeles better I decided to start visiting every library branch they have. I have seen 18 of 74 of them, I have attended 3 events (and am set to visit another 2 very soon), and I have taken the tour of Central Library. Through them I have learned that a library is nothing is without its staff, and if you want to accomplish anything in the entire world, please start at the library. They can make absolutely anything happen, and know where to find the resources that will get you to where you need to be. They are one of the last, greatest institutions that exist solely for the benefit of humankind, I hope we get to keep them forever.

Beyond that, I am a platelet donor, blood donor, library supporter (they need that sweet funding), food bank supporter, a good friend and kind to service workers. I have doubts about this dubious world we live in and I think the only way it will get better is if we put in the work, the time, and the money. Together this can get better, but we can't do it alone. The more we bring attention to these causes, the more we can get done. Let's do this, together. I need you.

Ask me anything.

Love,

Brody Black

Proof: https://www.instagram.com/p/BzGb1nenywb/ (Same as posted at top)

https://imgur.com/fgzkz1B (Also still me)

This show is over, 13 hours is about all I think I have in me, it has been an honor. Take care and have good days, and nights. Love, Brody

Comments: 179 • Responses: 62  • Date: 

alaskat1248 karma

Re: Kidney Donation -

How long was the procedure? What does the scar look like? What did you do to prepare (physically, emotionally, mentally) for the surgery? What diet restrictions do you have? Why did you pick UCLA? How long is the recovery period? What can a pen pal gift you to support this truly awesome, awesome thing you did for another human being?

Re: Libraries -

Which library has been your favorite and why? What are you reading now/next? How did you pick a library to donate to?

You are a truly amazing human being ❤️❤️❤️

HarperWillowes55 karma

First things first, I am a hideous rotting pumpkin right now (https://imgur.com/QoEkiPo).

The procedure was about 4 hours. I was out the whole time. What you are looking at was taken today. The end scar will look much like a c-section scar (it is right above my pubis).

I got in the best shape I have been since high school and plan to keep it up for my long term one-kidney-wonder health. I researched, talked to the people I loved, and wept to a lot of inspirational songs by Watsky. It was actually pretty emotional and embarrassing. Talking about this stuff in person still gets me all teary eyed, it is such a heart on your sleeve moment. The vulnerability is absolute.

My diet is a reasonable diet, the type we are all literally supposed to do as adults. It is actually easy, veggie-heavy meals, lean proteins, limited fat and salts, limited alcohol, no excessive sugars or overeating. The doctor's standard prescription.

UCLA is a fantastic hospital, they have an amazing staff and some of the best doctors, nurses and surgeons around doing better west of the Mississippi is harder to do. There isn't a word I have for them that isn't glowing.

The full recovery until they let me lift 10 pounds and over is 6 weeks, I must wait so that I don't herniate myself in over-exuberance.

As far as gifts, I love a good animal shaped mug.

Next I'll get to the library question.

mintmartini13 karma

Welcome to being a living donor! I donated mine to someone I didn't know 14 yrs ago (was in my early 20s) and got the same C-section cut... As a heads up, you may experience worse periods than before because they cut thru the abdominal wall where you typically cramp from. Heating pads are the only thing that saved me. Despite all the pain for those years (hysterectomy last year thankfully) it was worth it. My recipient is still doing really well and is a part of my life now.

HarperWillowes6 karma

Thanks for the welcome and the heads up, I really do appreciate it. I'll keep that in mind next month, and thank you for helping me, I am still learning here.

daninger499510 karma

Can confirm... UCLA is an excellent hospital with great doctors.

HarperWillowes15 karma

An while we're at it, shout out to the anesnteiologists who did an incredible job of making this all painless, and keeping my eyelash extensions intact. It's my vanity thing.

HarperWillowes15 karma

Yes! This! My surgeon is, beyond being the very best at the business of surgery, a stand up, brilliant and thoughtful man. And the whole staff was just like that. Never have I felt like I was in better hands.

I_Love_You-BOT18 karma

I’ve gifted you a silver because you are an awesome human. Never forget that.

I am a bot trying to spread a little peace, love, and unity around Reddit. Please send me a message if you have any feedback.

HarperWillowes12 karma

I love you, I love you bot. Together we are meta.

HarperWillowes12 karma

Exposition Park has to be my favorite, if only because it is my library. It is where I go to chill, on a bad day it is my haven. All of the events I have attended have been there and I am really getting to know the library and the community it exists in. The experience in really immersing.

I am reading Strange Weather by Joe Hill, next is How To Ruin Everything by George Watsky. Great reads, I promise.

When I decided to donate I just went ahead and gave to the LAPL as a whole, it was easier than picking just one. Expo is a favorite, but they're all my babies.

And thank you, being a good human being is one of those things for which there is no resting on laurels. I hope to keep earning my keep.

eternalrefuge8644 karma

Let’s say that for some reason down the road you go into some sort of renal failure, are you bumped up the transplant list for having donated a kidney?

Also does having donated a kidney make you any more likely to develop renal failure later in life?

Hats off to you for your generosity!

HarperWillowes79 karma

Yup, if I need a kidney later I get it within a week or so, top of the list. They will honor my gift should anything happen to me later, they run a good business that way. If they didn't I don't think they'd get many donors.

Statistically speaking, kidney donors live longer lives than the average person, we had be in good shape to give and there is a mild sort of a sword of Damocles to incentivize us in sticking to our better habits. We'll call it the scalpel of Damocles. The odds of renal failure in me jump from 0.3% to 0.9%. Which is a risk I am willing to take.

eternalrefuge8610 karma

Ty for your reply. I’ve rolled around doing something like this before but never got any further than donating blood/plasma. It’s inspirational.

HarperWillowes23 karma

And let's not sniff at blood or plasma donation. In my travels to and from UCLA I met a man that received many many units of blood. His life was saved by donors, medical professionals and emergency responders. But they needed all of us. That's what you are doing, what many people are. Each unit matters, a person will need as many as they need to the last drop.

HarperWillowes17 karma

The long road is leading up to the surgery, because 26 hours after surgery I was outside with a friend watching her kid play in the fake grass.

I was surprised how fast the donation part is once you finally get there.

There was a staff of 50 truly incredible people and they were there for me endlessly. I feel badly in a way because this wasn't some great hard thing. It has been shamefully easy in the end. Part of me feels a bit silly for thinking this was some huge deal. It is my surgeon's Wednesday, and if you saw me today at the market you'd never know.

HarperWillowes18 karma

All my love to you all. I am out for the night, thank you for coming, I really didn't expect this turn out. I'll drop by upon waking to see if I need to do any clean up.

Edit: Apparently I am not ready to go to bed yet, I am still here.

SoCalDad3515 karma

How does it feel before vs. after? Do you notice a difference in how you feel physically?

HarperWillowes32 karma

Here is the stunning thing, and I really mean this because it floored me, I feel the same. It is seven days out from the surgery and I only feel inflation pain from the surgery (they inflate us like balloons for the laparoscopic procedure) if I walk 15 minutes briskly and only feel the surgical wounds when my clothes brush against them roughly. The gas bubbles from the same inflation shift when I change orientations and I feel that as well. It's not pain, it's just odd.

That said, if someone moved towards me to hug me I'd step back: I am healing, don't squeeze me.

SoCalDad357 karma

Great answer, thanks!

One more question - will you need to modify your diet going forward? Fewer/no alcoholic drinks (if you do that), etc?

HarperWillowes18 karma

I can't drink excessively, but that is hardly an issue. Previously, I only had a two cocktails a month. That is something I can keep doing if I wish to. My diet is the standard good judgement diet. We all know we should eat the carrots not the chips, drink the water not the juice. Now my stake is higher, so I'll keep listening to common sense.

That said, there are celebrations, holidays, and fantastic restaurants, and I am allowed to have a meal of pleasant opulence here and there, just no heavy drinking. But there have to be reasons to live for, and a fine meal is very up there for me. It's fine, just in moderation.

honestlyopen6 karma

Ah man, I don't feel the same. I didn't feel nearly as badly as they made out I would, but the same? I slept for ages. The wound is perfect and only bothers me the same way it bothers you. I am exhausted and it feels impossible to get comfortable. Two of my wounds are the n the side I normally sleep on. I gotta stop reading this thread because I am getting jealous of your recovery. That being said, last week I did feel a lot better than this week.

HarperWillowes5 karma

Ugh, I am so sorry. That must be awful. I do feel the same, except for on long walks. It sounds rough where you are, but not out of the possibilities I was told to expect. Here's hoping you get better soon, and find a comfortable way to sleep. Sometimes a body pillow helps. Take care.

2Krunch12 karma

In a world of misery, why bother?

HarperWillowes45 karma

Honestly, a deeply fair question. We make our light in this darkness, if there is enough of us we can really do something. If you wait for someone else to prove it is worthwhile you might die waiting. But if you light that first torch, you never know who else will follow next. Really.

HarperWillowes28 karma

I'm here because of Dylan Matthews, and someone has a new kidney because of me. It took one person.

2Krunch7 karma

Your situation crossed my mind when I woke up this morning.

I hope you maintain your enthusiasm. The world needs more people like you.

HarperWillowes14 karma

Thank you. I hope the world offers you more than misery. You deserve so much more.

Skiie12 karma

Is a kidney donation Tax deductible ?

do you feel your powers have left with only one kidney left?

HarperWillowes21 karma

It is not tax deductible. They state legally that there can be no monetary value or exchange. It is worth $0.

I feel exactly the same as with two, except now I have a renewed fear of getting stabbed.

daninger49955 karma

They should add that to the list of side effects from the procedure! lol

HarperWillowes10 karma

Oh, they do, it is under the crushing and stabbing part of the risk discussion. Seriously, they'd warn you if the procedure might make your shoe come untied one time more than usual each year.

daninger49953 karma

Oh man, talk about causing anxiety!! By the way, since I have your attention, I just want to say that what you did is incredible. Not many people would do it and it is amazing that you saved a life. Also, i have lived in LA for quite a while and still haven’t seen the inside of a library. Thanks to your post I am going to check one out tomorrow morning!

HarperWillowes9 karma

Also Central has a machine that dispenses short stories on receipts near one of the entrances, be sure to pick one up if you go.

schwam_919 karma

I'm a 28 year old getting my first kidney on July 3rd after 3 years and 2000 hours of dialysis. I dont really know what my question is but I could use some reassurance. I just want to live and be treated like a strong young man again.

HarperWillowes8 karma

I wish I could give you the reassurances you want, it is hard to say what the future holds. I hope the surgery goes well, and the recovery, and everything after. Its awful I can't say better, but if you'd ever like to talk sometime, let me know.

schwam_912 karma

It's ok. I am lucky to be completely healthy other than the kidney disease. I know it's super routine at the hospital I'm going too. I'm almost more nervous about life without strings attached after forgetting what it's like to be my age. Other than that I hope the pain is manageable. They say the pain meds are really effective.

HarperWillowes3 karma

My pain was managed exquisitely, and planned to end in me needing less medication overall for less time. That I can say of my experience.

I am glad to that you will be free soon and joining the outside world. It may feel like you've lost your place, but I have hopes you'll find it soon. And really, I am here to talk, about anything.

HarperWillowes3 karma

May I suggest Central Library for the inaugural visit? There is a tour, I believe at 12:30 pm. (https://www.lapl.org/branches/central-library/docent-tours-central-library)

HaleyDara10 karma

In terms of choosing to do a non-directed donation, did the idea of having a family member or friend who may need a kidney in the future ever give you pause? That would be my biggest personal concern. How will you handle it if sometime down the line, someone close to you needs a kidney and you could have been a match?

HarperWillowes22 karma

First off, in non-directed donation I could have used UCLA's voucher system. If I knew someone in my family or life that had a real risk of needing a kidney I could get a voucher for my donation now that would send them to the top of the list when they needed one (https://www.uclahealth.org/transplants/kidney-exchange/giftcertificateprogram). It is an inspired program, it makes giving a much more fearless prospect.

Here's the hard part, I believe in a better world, one where we do what we should because it is the right thing to do it. If more of us gave, we wouldn't need to be scared of having to saved one for our loved ones. It is something I am willing to chip in on. Someone's loved one needed a kidney, and they have one. Their whole family and all their friends have changed lives. There was a world where that didn't happen, and they kept waiting, never knowing how long.

There is no correct decision. It is a strictly a personal call that we do are best to handle well. There are no wrong answers. This was mine, and it absolutely isn't the right one for everyone. That said, that voucher system really helps ease that dilemma.

My loved ones will most likely know passingly a hundred people, any of whom can be a paired donor with them, match or not. Paired donors are an amazing thing.(https://www.hopkinsmedicine.org/transplant/programs/kidney/incompatible/paired_kidney_exchange.html) If I am the only person they know, I will campaign high and low to get them a paired donation or a match. But when someone needed me I was there, and that isn't something I think I would regret. And, I'd deeply like to hope, that my loved one would love me, somehow, for that anyway even on our darkest day.

Edit: spelling error.

HaleyDara9 karma

Wow- that voucher system is incredible. As is your answer and reasoning!! I really appreciate your time, effort, and ultimate gift to a stranger. I’m a paramedic so I like to think I have a little understanding of this on the medical side. I wish there were more people like you in the world.

HarperWillowes10 karma

Believe me, I am glad as all get out to have you. There has been more than one person in my life that has been saved by people like you.

We could use more people like you, as long as we are asking for things.

EagerPhilanderer6 karma

You have overtaken Mr Rogers as my favourite person.

HarperWillowes4 karma

If you met me on the street I'd be just a stupidly sincere and glowing, but I also swear like an absolute sailor and make some fairly lewd jokes.

One doesn't really preclude the other, I am still as much this (https://www.instagram.com/p/By6HlzjnjiK/) as I am this (https://www.instagram.com/p/BynvfoFpWhb/ blobby bottom right). It is actually an odd cocktail, sweet people are surprised by the crass part of me and the wilder types find me hopelessly saccharine rubbish.

EagerPhilanderer6 karma

See, even better.

From someone coming up to their third year of dialysis (and in need of a third kidney... C'est la vie), know that you're awesome.

HarperWillowes5 karma

Here's hoping for your kidney, philandering is a lot more fun on a new one.

twuewuv10 karma

Funny this pops up today because my wife, /u/addewagon, and I were just talking about this subject. She has a kidney problem where basically the renal artery is wrapped the wrong way around her kidney, so the blood flow is restricted and it’s painful as hell at times. There don’t seem to be many solutions outside of “deal with it” and “donate it”.

Donating it would be on down the road, so my question to you is, what would you do differently if you could go back and prep for donating again?

HarperWillowes11 karma

I actually felt I nailed this, surprisingly. The physical stuff is easy: be active, be a healthy weight, eat a reasonable diet, sleep well and drink fluids. Everything that you've probably heard a thousand times. For aerobics I danced, did yoga, did the roller derby work out I have on dvd and walked hours at a time.

There isn't anything I can think of right now that I would have done differently.

The work-up process takes forever or rather it just feels that way (about 9 months), sometimes you're waiting for results or the next set of instructions. When you're in doubt as to what is going on be proactive and call your coordinator, make sure that ball is still rolling. Sometimes a message of what they want next may not have gotten passed to you yet and you'll get it sooner if you ask. It is the keeping at the work ups that is harder than any prep.

Edit: corrected a word.

failex9 karma

Who is Dylan Matthews ?

HarperWillowes28 karma

Oh, how I deeply love you for asking this.

He's my hero, in the "he's still just a human" kind of way.

He is a journalist for Vox who wrote an article and made a video for his donation of a kidney to a stranger, it is grounded in the hardest of facts and statistics (where I am clearly all heart and emotional drive). This is his work (https://www.vox.com/science-and-health/2017/4/11/12716978/kidney-donation-dylan-matthews).

I don't expect you to go through all of it, it is just there if you want it.

Roughly: he decided that donating a kidney is a net good for the world, so he did it. He told as many people as he could so that he could make sure the good would be part of a chain that never ended. I'm here, so his isn't that wrong.

L0chy8 karma

As someone who is currently going through paired donation, in the UK, with my mum (I'm the one in need of a new kidney, she is donating). This post eases so many of my concerns and worries about the surgery. The fact you are up and about and able to do things so quickly eases the worry I have for my mum after surgery. Thank you for donating and for the helpful post.

Do you have any dietary requirements now or are you allowed to eat what you like?

HarperWillowes8 karma

Hey, you caught me, I can't sleep. My diet is pretty much the same for me since I started with a good base. Most meals are vegetable heavy, the meat is lean, lower sodium and lower fat, no excessive sugary things. I generally have a couple cocktails a month, and that should remain fine. Besides that, the rare meal out, the fancy dinner and the festive dinner spread are all still allowed in on the edges. Nothing genius, just sensible eating.

L0chy2 karma

That's good to know! Sorry you can't sleep! Is there much pain still after the surgery?

HarperWillowes3 karma

The main reason for being awake is just all the excitement of doing the AMA, it is stressful and thrilling and all sorts of emotions. After surgery upon waking there was some pain and occasionally through my brief hospital stay. But it was always managed exceptionally well. I spent one day in the hospital and the next I took one hydrocodone, and since then all my pain has been managed by acetaminophen.

That said, I have been a bit of a cakewalk type anomaly.

HarperWillowes4 karma

If you search for the comment by honestlyopen you'll see all recoveries are different. But all of us went in being okay with the worst outcomes for recovery, and we're all happy for any better than that. These are choices we understood, and I don't think many of us would give them up. I'd try to go in with reasonable expectations as set by the doctors, and if it ends up a easy recovery, that's gravy.

FrancisCastiglione127 karma

What's an interesting or unknown fact about libraries? They were my refuge growing up.

HarperWillowes6 karma

They were mine, too. The safest place for a nerdy kid is the library, I absolutely lived in them. To me one of the biggest secrets, that absolutely should not have been one, is what the librarians are capable of doing. If you come in and want to find an image of the original plate from the first Grimm's Fairytales to turn into a 3D printed model, they could get you on the track to figure it out start to finish, and in Los Angeles you can also use their 3D printer.

The best secrets are probably trapped behind librarian lips. We'll never know.

FrancisCastiglione129 karma

I'm gonna write some erotica and call it "behind librarian lips".

"At the sight of his thick tome, her decimal system became all Dewey".

HarperWillowes4 karma

Haha. I have no words.

BfloAnonChick6 karma

When you say you can’t lift 10 pounds or over, or exercise, is that a permanent restriction, or just while you’re recovering from surgery? Are there permanent restrictions on your physical activity?

(I was given to understand that once someone was down to one kidney, there are, but I’m not sure if that’s actually true.)

HarperWillowes18 karma

That restriction is for the first 6 weeks of recovery, so that I don't bust myself open like a tragic piñata. After that, it is life as normal.

There are some permanent restrictions, mostly those regarding contact sports and bad judgement. I am not really allowed either. No roller derby, no hang gliding (one lands hard on those inflated landing surfaces), no drinking excessively or overeating. I am also on the hook for staying in relative shape and keeping up with healthy decisions. But they are all the things you know you should be doing already.

HarperWillowes12 karma

I do need to tell all medical and dental professionals that I only have one kidney, that's an issue.

BfloAnonChick7 karma

Makes sense. :-) (I had to visit my dentist yesterday after an, um, significant absence, thank you dental phobia, and because it’s been awhile I had to fill out a new medical form. They want to know EVERYTHING!)

HarperWillowes13 karma

They also prescribe medication. Medications can be kidney damaging so they need to decide if the medication is still the right decision in my case or not. And even if it is kidney damaging, it still might be the right choice, they'll just monitor me closely. Medicine is frequently like that, they are walking a fine line.

HarperWillowes8 karma

And good on you for returning in the face of fear, it means something.

Shinesparked6 karma

What kind of programs and services does LAPL offer?

HarperWillowes10 karma

The Los Angeles Public Library system has more than you can possibly imagine. They have: services to help get homes for the homeless and those about to become homeless, services to help people become citizen, they can teach you a different language, they can teach you to read, they can help you get a job and improve your resume, they have makers and sewing machines for you to use, they do free tests for HIV, they have play kits with projects for children that can be taken home for a week, they are working on installing a public recording studio in Central Library presently, and for the entirety I'd have to send you to their site as a whole (https://www.lapl.org/) in tandem with their events section (https://www.lapl.org/events) and their calendar (https://www.lapl.org/whats-on/calendar).

Following them on Instagram is also a good start.

If you've bought a book recently, I'd encourage you to get a library card and start enjoying the online free books, music and movies.

The events reflect the community of the library and the need of the patrons. It is beautiful. I've never seen an organization so diverse and so dedicated to helping everyone get what they need.

HarperWillowes9 karma

Oh, and September 3rd at Lincoln Heights Library they are offering free eye exams and glasses through the library and UCLA if you come in and register. Children and adults. Seriously.

HarperWillowes8 karma

They feed children for free during the Summer.

scrody696 karma

Hey I’m Brody Taylor. Do your hilarious friends call you Scrody too?

HarperWillowes13 karma

It's actually never happened. I am a girl and a bunch of first dates thought it was so funny to call me Bro. I did not feel the same.

CptnCumQuats3 karma

Were they named Chad Thundercock

HarperWillowes6 karma

Tragically, no.

supadupactr4 karma

Such a selfless thing to do. I have a couple questions :

  1. Did anyone discuss the risks involved, like possibly you could die during the operation? What made you still go through with the operation?

  2. Do you know who the stranger was? If so, do you feel the need to meet them or say anything to them?

  3. What is “non-directed”?

HarperWillowes17 karma

Oh, boy howdy, everyone told me the risks. Every doctor, medical professional, every surgeon, every nurse. All they do in the work-up part of organ donation is talk about the risks, painfully and practically enumerated.

The odds of dying were 3 in 10,000. Which isn't that bad, but I treated it as a real possibility. I spent my last day exactly the way I would have wanted to, like my last. I left the people I loved well cared for and treated all goodbyes as potentially final. In hindsight, this was a bit overdramatic. I am now here to look quite the ham.

I did it anyway because my donation starts a chain that will ultimately end up getting kidneys to 4 or more people, one off the waiting list (https://www.kidney.org/transplantation/livingdonors/incompatiblebloodtype). In the slim chance of my death, there would be five renewed lives. It is an offer too good to pass up, especially for an outcome so terribly unlikely.

My recipient is anonymous. The stranger gets the freedom to live their life unknown to me. They owe me nothing, not even contact or thanks, and I love that it is that way. I want them to go forward and live their lives, be with their families and to enjoy the best the world has to offer. There is nothing I feel the need to say to them, all I want is their happiness.

Non-directed means I offered to donate a kidney to someone unknown to me, without being asked, without expecting anything in return.

Edit: fixed one spelling error on "offered".

russianpotato-3 karma

I think what you did is amazing. But I would want to be thanked and celebrated by that person. I would want them to know they owe me their life, and I think there is nothing wrong with that.

HarperWillowes11 karma

I don't think there is anything wrong with wanting praise for having done something well or having done something to look out for another, it is a type of social currency we use to reward good behaviors. Maybe if you made that arrangement in advance, someone would be totally cool with the agreement. That seems like a before series of events discussion sort of thing though, managing expectations and all.

It isn't something I want. My wants are closer to home: a warm meal, good company and that sparkling look of laughter in someone's eyes. I got that for what I did, I am happy.

Edit: fixed a phrase.

HarperWillowes11 karma

Some of the other risks are the chance of kidney failure: it goes from 0.3% to 0.9%.

My kidney function drops to 85% but that is still more than I will need up until my dying day.

Crushing accidents that hit my remaining kidney and rupture it can kill me, as well as the previously mentioned stabbing.

I could have died on the table: 1 in 3,333.

And other risks are just things that might make me sad. My kidney could have been rejected, though they would have managed that medically before it was ruined the best they could, but it is still a possibility. But it could still get ruined prematurely in my recipient.

It seems like a risk worth taking. My kidney will most likely give someone 15 to 30 years of living, and even if it was rejected tomorrow, I'd consider it worth the risk. Without my donation the possibility for any immediate change would have been nothing.

HarperWillowes4 karma

It has been thirteen hours, and I need to go to bed. Take care!

jblack263 karma

What is your honest opinion on why folks who have some health issues could not donate a kidney or another organ ? I will preface and say I Am an RN, however I have morbid obesity and have had gastric bypass surgery and have had 13 pounds of skin removed already years ago. In my mind I keep thinking that they have done enough messing around in there and changing things- then what would the difference be in taking out an extra organ ?

By the way- my scars can beat yours - not that it matters because your scars are for a much better purpose and a greater good and you were able to share yourself!!

HarperWillowes8 karma

Not being able to donate an organ can often be a heartbreak for the person who wants to donate. There was a brief moment where I thought that was me and I was crushed. When I found out that wasn't the case the sense of the profound honor that I physically could hit me as hard as the perceived loss had. I feel deeply for anyone who can't donate, and wants to, but there are so many ways to give and these bodies are just one way.

I see us all as opportunities. We all have something to give to the world, no matter who we are, what our bodies are like. I am glad to share my world with these people. You never know who will be the person you need or the one that changes your life for the better. I'm grateful, for everyone.

You are giving. There shouldn't be a barometer. Thank you for doing so with your life.

Hehe, I joke about my scars. Anyone who would hold them against me doesn't deserve to see them. Same for your scars.

snusmumien3 karma

How do you feel about the sacrifice from a medical point of view? Take for example the fact that now you will have to be taking real good care of your blood pressure for life, meaning lifelong treatment with antihypertensives.

Your remaining kidney will still experience a period of compensatory growth, however the solitary kidney will never match the filtering capabilities of having two kidneys. Maxing out at about 70% of full function. This will affect how your body metabolizes everything from medicines and vitamins to illegal drugs.

Not to mention the possibility of any surgical complications that might not be apparent for years to come. Mainly adhesions that might cause or attribute to developing gastrointestinal disease in the future.

Lastly, where you given enough information to feel you did a fully educated decision? Have to say, a very brave choice!

HarperWillowes5 karma

I am not on antihypertensives, and they are not at present anywhere in my scheduled future. Maintaining a healthy life is an absolute priority, and if lifestyle choices are not enough in my later life and I do need blood pressure medication, I plan on taking it as prescribed.

My doctors have said up to 85% for the high end of kidney function as a max, as did their paperwork. No, it will never be 100%, but the percentage I have is more than enough to carry me on for the rest of my life. Should the unexpected happen and I lose the function of my remaining kidney I am first on the waiting list for a replacement.

Part of having one kidney is telling my doctors and dentist that I have one kidney, and telling them what vitamins I take. After I clear my decisions with them, I should be set to make good, healthy choices for my long term health.

Unsurprisingly, part of the donation deal is no illegal drugs. Those aren't part of my life, and they won't really be missed by me.

I was given abundant information. Education is one of the biggest focuses of donation, and the risks are covered with every single professional until you can recite them back. There isn't a doubt in my mind that I was informed of every relevant thing, and the outliers.

For me it was the right choice.

Ayayrun3 karma

Hey there. My family member recently went into kidney failure and it turns out I’m the same blood type. What test do they do on you prior to donating? Is there a biopsy? I’m curious about the specifics of the process but can’t seem to find anything but broad general information.

HarperWillowes6 karma

The initial tests are largely blood, and urine collection and samples.

There was no biopsy as part of my work up.

There will be many more targeted test on your personal health as you move through the work up. The medical professionals in charge will walk you through the specifics and answer any questions you might have, and you can back out anytime, including as they are wheeling you into the operating room. You are never obliged to move ahead, nor should you feel like you have to.

The beginning part was easy for me, vials of blood, urine in a cup, and a urine collection. That is how it began. From there everyone has a branching path, and the staff will walk you through that as you proceed. And, please, ask questions of them!

That is probably why all the answers you found have been vague.

HarperWillowes3 karma

I am still here for half an hour.

omnisephiroth3 karma

Hi! I’m gonna ask a lame question, but how much did your kidney weigh?

HarperWillowes4 karma

I didn't ask! There were so many people you have to see before they'll let you leave and they have advanced tasks they want you to complete, like walking to the bathroom and urinating. I was in such a rush to barrel through all the rigamarole that I simply didn't get to ask. I will ask at my check up and add the weight here though. Promise, promise.

Sillysocks-Realm3 karma

What’s your favourite book?

HarperWillowes10 karma

Cat's Cradle by Kurt Vonnegut Jr. is one of my top re-reads. I love the fake religion, I love the end of the world, I love the sense of connection among people.

murphykills2 karma

what are you trying to make up for?

HarperWillowes5 karma

It is a fair question, and a good friend asked me the exact same thing when I told him what I was doing.

I have seen terrible things happen, and there is so much we can't stop or prevent, these slow moving catastrophes. In this world there is pain and suffering, and it seems to be handed out without any merit or sense.

But there are things we can fix, meaningfully repair. I wanted to mend someone's life for 15 years, because I could and because I will never be able to prevent all the ills of the world.

In the face of life, I think all we can do is try to make a meaningful impact, and I would feel like I failed if I didn't try to do better by the rest of humanity. When the worst comes I may not be able to do anything, and when I can do something, I will.

murphykills2 karma

well, then i want to try your drugs cause that's too zen for me to even relate to.

HarperWillowes6 karma

It's hardly zen, it's ardent. The desire in me to try and do better and care for people is more like a fire, a stable one. It is just one of those drives that lives inside me, and you should see some of the Mary Poppins tricks I have pulled to try and get smiles out of people. There is effort in all of it, and some of it is anger at how poorly we humans can really treat each other. This isn't some pious, serene state of mind. I am on a long, slow march, blazing brightly.

And Tylenol regular strength is over the counter, and the other medication I'm on, docusate sodium, yeah, I think you can pass on that.

Really you don't need either.

Trytosurvive2 karma

Do you expect anything from the recipient- in terms of way they live or use/treat and the gift? Would anything upset or annoy on the way the recipient behaves?

HarperWillowes4 karma

I do not know the recipient, and will most likely never know them. The gift is theirs to do with as the please. My only wish is that they are happy. This is the way I prefer it, they are indebted and beholden to no one.

Trytosurvive3 karma

as A recipient I sometimes feel that I’m letting the donor down - that I’m just living a ordinary life and not doing anything amazing... to be honest I always thought that a living donor To a stranger had some sort of screw loose - I suppose because I cherish my kidney and had renal issues all my life to give a kidney away seems like madness to me. I really wish I could have lunch with you to see if your normal... you seem normal... I must be the weird one with life baggage. In any case anyone who saves a person from dialysis is amazing and I really hope karma pays you back 💖 to all those living and deceased that donated, you will never truly understand the depth of our gratitude and love

HarperWillowes4 karma

That is really common for recipients, to feel they are letting some one down. I can speak for no one but myself, but I can tell you how I feel.

I am not extraordinary, and neither do you need to be. You getting to live a normal life is exactly the sort of dream I have for the person who gets mine. It is all I ever wanted for them, normal.

We all have baggage, and I am my own type of weird, though I am sane enough.

Thank you, and from this donor, be happy, experience your life, it doesn't need to be grand, it just needs to be yours. I am glad I was lucky enough to be well enough to share. I think it has made both of us better.

funnybunny991 karma

Hi, Have you read “The Library Book”, Susan Orlean’s excellent new book about the big fire at the LA Central Library?

HarperWillowes2 karma

It is absolutely in my reading stack, you can't be the girl visiting all of LAPL and not read that book. Central is a dream, I go there sometimes as I wait for my new library to visit, some open later. The wonderful women I have met who work the gift shop are beginning to recognize me, and that alone keeps me on thinking of the next library trip to plan.

HarperWillowes2 karma

They'll start noticing if I am slacking or have dropped the cause.

FallingSpear1 karma

My dog walker donated his kidney. He didn’t do an AMA because it didn’t make him unique or special. Or is it because you like libraries? Then that’s weird to think your so special people must want to ask you questions. Question: do you consider yourself narcissistic? Did you donate your kidney for attention?

HarperWillowes9 karma

Your dog walker is statistically unique, even if it doesn't make him feel so. There are under 7,000 donors a year and over 150,000 people on the waiting list. Over 4,000 will die waiting for one this year. That he gave and someone received is actually remarkable and up lifting. These are all US statistics. And I think he's special, that was a loving thing to do.

I don't consider myself a narcissistic, but it is fine if your perspective doesn't jive with mine. I am here because someone did something similar and it changed the life of me and my recipient, and I am grateful.

Non-directed donation is rare, fewer than 500 a year, I believe. The odds of running into someone if you wanted to ask some of these questions would be exceptionally rare. I know this because I wanted to talk to someone who had done it, it was really hard. If there is someone who might have a question, as I had, I'd like to be there for them.

My donation was to give someone 15-30 years of a better life. This is all a flash in the pan for me, tomorrow I will be back to being no one. But that person gets their life. And this is here for anyone who was looking for information like this, as I was.

I'm not special, and I don't need to be. It's okay to just have knowledge to share.

Edit: corrected a figure.

Vladutz19-8 karma

Why would I want to know anything about you? I couldn't care less about you.

HarperWillowes11 karma

I seem to have bothered you, I am sorry that it has made you unhappy. Do something that makes you happy instead of hanging around here, the world is full of possibilities. I hope the rest of your day is better.

Blastoys2019-10 karma

Do you have bf rn? Like a person bf.

HarperWillowes6 karma

I am not presently interested in dating.

meanestcommentever-22 karma

What’s the biggest dick you’ve taken?

HarperWillowes16 karma

I have sincerely never measured any of them, I wouldn't know.