Morning Reddit! Please keep me Company as im alone in the hospital over Christmas with a new kidney! Ask me Anything

Will your new kidney not hate you as much?

Hopefully it will like me and stick around more then 10years atleast

I hope you get longer than that. Good luck to you and Merry Christmas!

Me 2 ive Always tried to live healty since I got scholed about my disease when I was 12-16 so im quite proud of lasting to 28(1month to 29) while my brother and the average is early twenties. Hoping to make it last forever or atleast a long time because I really do not want to do this again haha

If all goes as it should, will your new kidney last you decades? Or will it degrade like your original kidneys?

If im lucky it could last 30+ years and if im unlucky a lot less :/ the body can randomly reject it anytime really and if I mess up my meds (have to take 1 each 12h from now to my death) it can mess it up aswell

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Cant you see my nick is Tomten (Santa Claus) and not Jesus? :o

Santa Claus is just his second resurrection. Or, rather, your second resurrection.

Hey, if your blood really was wine, does that mean that the rest of you were actually made of bread and all of it was soggy from soaking up the blood-wine?

Mhm soggy blood-wine

What're you gonna name your kidney?

Haha I dont have a clue, got any Good ideas? :p

Sidney?

Sidney the kidney haha :p like it

Kidney Kardashian if it pisses you. Pun intended!

God damn thats a Good one! Lets start a contest lol

What about Billy the Kid-ney? 😊 Wishing you a successful recovery!!

Yeah I like that one to :D thank you !

Do you have any big goals for the new year? Safe and happy holidays to you friend!

Yeah prob to clear red dead Redemption 2 haha

Now after the transplant I have a lot lowered immune system so my body doesnt reject the new organ. So I cant really be around people or Pets etc so my SO and dog went away today for Christmas and I will spend 2 weeks Home alone in a very clean apartment. Will go out some to exercise but mostly just play some new games I will buy During the Christmas sale ^{^}

After new year my aim is to get back to the gym after 3 months or so (thats when im allowed to meet people again), havent been to the gym in a year since Ive been very sick + started dialys which was just hell

Haven’t played Red Dead, but it’s on the agenda. I know you’ve been dealt a tough hand in your life, but I admire your resolve and optimism. We could all learn a valuable lesson from you. I wish you the best in your recovery and hope that all your wishes materialize.

Thank you so much, your words are really impactful. I have had a few rough days and this will help going forward

Dude red dead is so great and perfect for a time suck. Slow at the beginning but once you get passed the tutorial part it's great. I have never played a game where I actually felt invested in the mini side activities. But I loved fishing and hunting and playing poker. And the characters were really deep and interesting.

So much to do! Warning it is a HUGE game

Anyway, rest up and get better! Glad the operation was a success!

Yeah Ive been looking forward to it! Loved the first one and I will have loads of Time hehe

Why can’t you be around your dog?

With lowered immune system its not the best to be around dog hairs and dog kisses and my dog is a insane kisser haha

But I gradually get less meds so he can come home in a week or two

If you can, do some video chat with your dog. Let him see you and hear your voice, it will be good for both of you

Yeah planning on it for Christmas and so ^{^} we usually do when he goes away with me or SO

All the best, hope you have a speedy recovery.

It's funny that you mention finishing Red Dead Redemption - your life looks like you started out in "Hard Mode" - finishing a game is doable by most of us, but you just you surviving day to day is another level of achievement.

Hard mode Indeed But living in Sweden atleast gave me plenty of guides :)

Got any Tech Tips?

Dont shower with hearing aids

They’re getting more and more water resistant now that rechargeable is available, since the battery compartment is the most vulnerable to damage and corrosion.

What hearing aids do you wear?

I have oticons latest with bluetooth and batteries

I once showered with old ones when I was new with them and had to get new hehe

How many kidneys did you replace? Is your new kidney permanent or do you have to replace that in the coming years?

I could only take 1 from my brother ;) he kinda needs the other to survive hehe

My 2 orignal are not funcional anymore so I think my body will just absorb them and from now on I only have 1 to work with

I still have to eat a lot of medecation to lower my immune system so my body doesnt reject the kidney, some pills every 12h for the rest of my life. Very important

If I fail that or just being unlucky my body can reject it. Can happen at any time really 4months or 4 years or 10 years or 20-30 years. Some guy here have had his in 35years, longest I heard. My brothers first lasted 10 years

Im hoping for 10 and hopefully 20-30 or more

So you have three kidneys right now? Did they not remove the kidney that was replaced?

Nah they just leave em, They are basically just dead tissue now that Will get broken down and I will piss them out over time

How is the healthcare system where you're from? You sound amazingly brave for a person in this kind of situation! Merry Christmas :)

Im Swedish so its all free basically :) you have like 1200kr (around 120$) max amount a year for meds and hospital care so its like max 240$ per year if you max both

My meds cost like 5000 per Month lol so I max out first time and then just get it free for 11 months, pay for it in taxes But its worth it to know people like me dont have to starve to live

I dont know about brave, last night I cried for the first time in like 20 years, becausw of the pain :/ but ive been prepared since I was young so I knew it would happen

Brave is going through it, no matter what. You can scream or cry, but as long as you're not running or hiding, you're brave. :)

What has to be done has to be done

Funny tho first time I put in the CDK in my chest it wouldnt stop bleeding and I had to get new stitches 3 times During the night with more/thicker thread. By the 3rd time I was really soar due to all cleaning and shots etc so I was shaking in pain. The nurses asked me if I was ok and wanted to stop and im like just do it. The doctor they just called to do the last set was a older guy and he was like haha he knows he doesnt have a choose it has to be done cant leave it bleeding and im like yeah so do it xD

You ARE brave. I'm sorry you had to go through all that and I hope your health (and life in general) will only improve from now on.

Thanks for your kind words :) lets both hope everything gets better from here

Hope your family is the to hold your hand through the pain, gowned and gloved, but holding your hand never the less?

I live 2h away from my family so I have been going trough most of it alone, my fiancee have been to the hospital some but due to work not all operations before hand (but at night afterwards)

You look swedish

I take that as a compliment ^{^}

The old kidneys don’t get broken down, they just stay in your body

Oh cool I thought I heard somewhere they do :)

Edit: disregard apparently i cant read

My brothers first lasted 10 years

Wait. So you got several brothers right? One that you got a kidney from and one that also had a kidney transplant? Or did you get one from the first brother which lasted 10y and now your other brother also helps you out?

Sorry if I'm being nosey but i saw this pop up in several comments of yours.

I hope all goes well with this one :)

Yeah I have 2 Brothers

1 brother with the disease, he got a stranger kidney when he was 21 then his wife when he was 31

My other brother doesnt have the disease and gave me one now :) my first one

Hey! I’m on the list for a heart transplant, so may I annoy you with a 100 questions at another date?

Give me a PM anytime and I will answer anything I can!

Seriously rooting for you pal and hope it all goes well!

What’s something you want for Christmas that you can’t buy yourself?

Hmm prob collector edition AC Odyssey, have bought all other collectors but being on dialys for the last 6months with like half pay means I cant afford it :/ SO got me a gift card that should cover RDR2 tho

Update on this: have reacived donations on PayPal enough to order a AC collectors! Seriously insane you guys! Reddit is the best! :) gofundme is also up still I think im not really in charge but it seems to make some extra for Another game even which just blows my mind

Everyone here is just awesome and I wish I could thank you all personally! Thanks for all the support and well wishes and MERRY CHRISTMAS!

What platform?

Xbox one

For names, how about Krampus since it's messing up your Christmas?

Haha yeah or the grinch

Ohai Linus! Just want to wish you the best and I like your positivity!

Got any sweet music to pass the time with? I’m kinda fed up with what I usually listen to at the moment, so I’m in need of some new suggestions, anything goes!

Well I love a lot of different stuff but right now im listning to Weird Al Yankovic a lot and also Rammstein that I love ^{^}

What’s your favorite Weird Al song? And hopefully the surgeons who operated on you weren’t cuttin for the very first time.

I love the saga Begins and trigger happy xD also Dare to be stupid

What is a thing you're really sick of hearing people say to you frequently but they wouldn't say to others?

Do you want kids since my daughters will most likely get the same disease, getting that a lot when people ask about my disease

I have Alports. I have 2 boys and a daughter. My daughter has Alports.

Yeah if you are a man you cant give to sons since on your XorY chromoesone and the boys get it from the mother

Good thing its less harsh for girls so hope everything goes well for her!

How long are you in hospital for? I have had a couple of surgeries that kept me in for 4 or 5 days. My advice - be sweet to the nurses! They have the hardest jobs in the world and seemed to appreciate a real conversation once in a while - all the best to a speedy recovery!

Minimum 4 Days until they remove the cateter so that Will be monday, and then I might get to go Home monday if im peeing and such otherwise wait until im better :)

Yeah the nurses are top notch and im Always on my best behaviour with them, yesterday it was a bit ackward asking for numbcream for my pecker haha but the nurse was totally cool with it

Two questions:

1. You have $10,000, 2 weeks, and a plane ticket for anywhere in the world. Where do you go and what do you do?

2. Does pineapple belong on pizza?

Australia, and rent some scuba stuff to check out coral reefs

Yes its the best one I Always ask for pineapple on every pizza

Heyyy not relevant to the comment above just hoping you see this.

I’m NOT a post OP nurse and I don’t deal with kidney patients after their surgery however I saw the picture of your foley bag (what your urine is draining into) and it’s hanging above on your stretcher above the level of your bladder. For one thing that’s dangerous because if someone/ something causes the stretcher side rail to come down without someone paying attention the Foley could get ripped out of your urethra.

Also, as a nurse for regular patients the bag should never be hanging above the level of the bladder it can cause urine to flow back into your bladder which can lead to infection as well as urinary retention. You are someone who’s going to be super prone to infection I just want to maybe ask you to check with them that the bag should be hanging at that level.

Maybe it’s something I don’t know that needs to be done post OP for kidney transplant but I just wanted to double check as I am concerned and don’t want you to be put in any compromised position during your recovery.

Hope you have a great recovery and an awesome life with your new kidney!

Actually I thought it was bad to have it high aswell (alltho I was the one who put it like that to easy access it when standing up), I noticed it didnt really flow anything so I put it down so it was lower then my bladder :) hopefully I dont get any infektion from it dont think it was like for long maybe 1h or max 2

Thanks for the support and tip! Ill make sure to have it lowered

Are you on diet restrictions? If so, what will be your first meal when they are lifted?

Not really im pretty thin now, went from 78-70 During dialys and from 70-67.8 from this wednesday so they want me to eat haha

For now I just have 2 chooses per day but once I get home my SO have stocked the fridge with some micro pizzas I love so they will prob go down first

I wish you the best. I know how it is to stay in the hospital, be in pain and also bored.

I hope you’ll get healthy faster! Blessings!

How do you think it will affect your future life? Like, is this disease hereditary and can it affect your future kids?

Yeah its on one of my chromosomes so daughters will 80% get it, boys cant get it. Its a lot less negative for girls so I think its worth it. They dont get hearing problems and doesnt need a kidney until their 40s

Good luck! My mother had a kidney transplant 24 years ago, and it's pretty much reached it's use-by date. She's too old to have another transplant from the waiting list now, and doesn't want to go back on dialysis, so she's starting to get her end of life stuff in order, since we don't know how much longer she'll have.

Did your other brothers not match? I know it doesn't always work that way.

That sucks :/ I really dont want to go back to dialys either but im hoping my fiancee, future wife, will donate one if I ever need Another

I have 2 brothers, one of them have the same disease (we got it from mom) so he dont have any kidneys for sale ^{^}

I've always been curious about organ donation - I mean, if I don't need both kidneys, might as well help someone who could use one, right? Do you know what the process is like to donate a kidney? Is your brother who donated his kidney in the hospital with you or able to visit?

Well my brother had to go trough a lot of tests, like to check everything. They havent told me details so I assume some are unfortable

I think its like 12 tests over like 3 months to check if you are healthy and can survive with just 1 kidney, and so you dont have any hidden diseases that might make you need it in the future

My brother actually got denied at first because he was overweight. That was to give to my other brother 10 years ago. So until it was my time he did a bypass to lose weight and then he got declined because he might get some problems from the old surgery. Took the summer to get him approved he had to talk to some specialist because he was a increased risk. Whole thing got delayed and I had to start dialys so then we waited for Christmas

My brother and I shared our room until he went Home like an hour ago. Donating a kidney is less severe, you got pain but you dont get a whole new organ that starts cleaning your body etc. You just take something out and in a week he Will be fine. He was up and walking the same day. I could stand once my second day and it took 10min to get up, 10sec to faint basically haha

Anyone can visit unless they are sick tho since I have a lowered immune system now. But my brother is fine he can go back to work on tuesday for example ^{^}

Wow that's crazy how quickly he can go back to work, while you're quarantined for weeks. I'm glad you can get visitors in the meantime, at least! If someone could bring you something to help you feel better or make your stay more enjoyable, what would it be?

Yeah well he just cut something out and sticched it up ^{^} my body got a whole new element that is foreign etc

Hmm some good candy or maybe a new switch game ^{^}

What’s it like living in pelican town? Does the farmer delivering cactus to you get old?

Yes

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Its funny cause my fiancee is named Billie so she kinda wants that nickname if she ever have to donote one to me in the future

What would happen if you got a boner with the catheter in? I've always wondered how that works.

Happens all the time. That way we leave some slack in the line. You can also disconnect the Stat lock so there is more free movement.

Source: nurse

Have you ever put on any Cream on a cateters dick to relieve pain? Had to ask my nurse to do it last night

You guys are awesome! Lol it was a little ackward im sure

I really dont want to try it since im soar and pissing blood haha xD good thing not much turns me on around here, my brothers arse aint doing it

Did you get your brother's left or right kidney and who's decision was it?

I got the left and it was placed on the left

The head surgeon decided then painted arrows on me where to place it haha. Then some other surgeon just followed

What are some of your favorite ways to pass the time in the hospital? I know that can be a boring place to be.

Second, what’s the single-most unexplainable things that’s ever happened to you? (I.e crazy coincidences, ghost stories, etc.)

Also, Merry Christmas! Sorry you’re cooped up in a hospital for the holidays, but at least you’ve got a new kidney ;)

My phone is my life saver, playing 3 different mobile games and then Reddit ^{^} then visits from my SO is great. Other then that sleep or a book ^{^}

Hmm not sure dont think I have any :/

Merry Christmas to you to ^{^}

When will you be ready to play Obi Wan if Ewan McGregor doesn’t do it?

Just give me a call! Ill make sure to get the high ground

Whats that thing on your chest?

Its my CDK for blood dialys. Basically a tube that goes into my neck vein so they can take out my blood and clean it

I did this for 6months prior to getting the kidney, it basically does the kidneys job when your kidneys doesnt work. Did it 3 times a week for 3h and everytime I got migraine and spent the night puking. Had a ton of other issues tho it has not been fun

Hopefully my kidney works great now and then I can finally take it out in a week or so, They leave it in incase the kidney fails. You cant imagine how annoying it is to sleep/shower with that thing

Goddamn. I really hope the new kidney takes, good luck

Me to mate me to :)

Any fond memories of your old kidneys?

How great they were at pissing for 28 years, new one got some boots to fill

Why are you alone?

My brother just got sent Home and I cant Walk so well yet. My fiancee just arrived tho and staying some hours But right now im getting a new single room aswell

Once im Home I will be alone due to infektion risk, a common cold can basically kill me since I have a really low immune system so my body doesnt reject my new Kidney

Non surgery question but: What’s your tattoo of?

Which one?

Right arm I have a demon climbing my arm, first I did when I was 18, really liked it :)

Back + left arm is my own variation of the cursed seal from the manga Naturo. I have the seal on my back then it spreads out in every angle and covers my arm down to my wrist almost :)

Dang, that catheter doesn’t look fun. I had a kidney surgery a year ago and pissed blood jello for a few days, but thankfully no catheter.

Do you sometimes show your brother your catheter products so he gets to see what his kidney is up to these days?

My catheter was hanging on the side of my bed facing his bed and I peed like 6l the first day so he got to see a lot of it haha xD

And yeah blood jello is spot on

How’s it going mate, hope you’re having a good one. Gunna latch onto the planned goals question a bit, do you have any routines that have as a result of the condition? And/or would like to take up once you get discharged? Have a good xmas mate, Reddit is now your kingdom.

Im doing better just took my first Walk (like 20m) haha so im improving ^{^}

I will have to take meds every 12h so I Will have to start a routine around that :) other then that my Main goal is getting back to the gym and making that routine again as I havent been in a year and really miss it :/ used to go 4 times a week

Oh and swimming again! Cant swim with the CDK in my chest

Is anyone going to be visiting you? Is there anyone special in your life youre thinking of? Best wishes to you this Christmas and New year mate.

My fiancee is here now a few hours But she is going away for Christmas tommorow so will be the last time today :)

Were going to Skype everyday after tho so I can Skype my dog aswell :)

Hi! I wish you all the best and hope you'll be ok. What kind of music do you like?

Hi and thank you! I listen mostly to metal/rock But I also like trubadour and parody Music and I can stomach Most things ^{^}

Merry Christmas! Will you have family nearby to keep you company? If you’re allowed to eat normally at that point, I hope they bring you som Christmas treats.

If you like jigsaw puzzles, have someone bring you a couple to help pass the time.

I will be completly alone for 2 weeks due to infektion risk, and my family lives in Another city aswell :/ but my fiancee have stoked the fridge with Good food and also bought me 2 jigsaw pusszles ^{^}

I read that it also affects the eyes sometimes, do you have any vision issues ?

Yeah it can and I do have glasses but I think I have just a normal eye problem as I have had glasses for 10years

My brother needed glasses 2 years ago tho When he was 29 so that might have been more disease related

How come they didn’t shave your beard? They generally do in significant surgeries.

They shaved half my stomach as you can see in the pic of my kidney :) Its also very hairy

I got to wear a cap and something to cover my beard tho

Are you on tacrolimus or cyclosporine?

Im not sure actually, I havent gotten any meds names yet except the painkillers, I just swallow what I get xD

I will prob get a list before I get home tho

But if one of those is old and bad I recall my brother told me last year to get the new one (he got his second kidney last year) and I think the new is standard now

What book would you like to see turned into a movie?

Wheel of Time (many movies haha)

Have you subscribed to Pewdiepie?

Nah I dont use Youtube that much, not my thing

Are you a cat person, a dog person, both, or neither?

Dog person def, I had cats when I was younger and a dog now and I love my jack Russell so much its crazy

Besides Assassin's Creed what's your favorite video game series? Happy holidays to you too!

Hmm prob Diablo :) also love Borderlands, Elder Scrolls and Deus Ex ^{^}

Have you played Subnautica yet? Great game. Also, Slime Rancher. It's cute and fun and a great stress and depression reliever. I hope the time passes quickly and you don't get sick. I was on bedrest while pregnant for 3 months. It was... Not a good time. Maybe consider picking up a hobby besides gaming. Crochet is a lot of fun and there are plenty of male hookers in the hobby. It keeps your hands and mind busy, but you can also do something really basic and watch Netflix while pounding out next years christmas present. I'm also fairly positive there are patterns for kidney plushies.

Yeah I got games and books atm and might start training a bit at Home when im allowed :)

Im really bad at crochet sadly but my SO is really good ^{^}

What's the funniest thing that's ever happened to you?

Such a hard question! Prob teasing my brother and when he chased me looked back and then look forward right into a wall, must have looked funny