I was born with PKD (polycystic kidney disease) and after turning 21 I found out I had 3 years before I would need a transplant. I am now 22 and recently suffered a massive infection and was incredibly dehydrated which coursed irreversible damage to my kidneys and they are now well and truly on their way out. I was told that I wouldn't be able to carry a baby full term and if I did they would have extreme disabilities as my body wouldn't be able to give it all that it needs for it to develop fully. Which means that if I was to unfortunately fall pregnant I would have to terminate.

I also suffer from depression and am unable to go on the dose I require of anti depression medication because of the state of my kidneys.

Feel free to ask me anything.

Here is my proof, I hope I did it right :/

http://s65.photobucket.com/user/Cel_Reilly/library/?sort=3&page=1

Comments: 162 • Responses: 51  • Date: 

TheMadHatter61039 karma

I don't have any questions, but I do have some advice for when you if you ever do start dialysis. I have been on dialysis for around 3 1/2 years. It's kinda become part of my routine. I have it every Tuesday, thursday, and Saturday, I'm actually typing this from dialysis right now.

The first six months or so, it completely sucked. I was pissed off every time I had to go, and with everything that was happening, it was not a good time in my life. However, after the first six months, it became part of my routine, it became "normal."

Now, the things that I have found to help is this:

1) Bring something to entertain yourself with. The dialysis clinic you eventually will go to may have a tv, but that will get old quick. Bring a book or two, your phone for games/reddit, or even a laptop. However, the thing I have found to help the very most with the boredom, is a Kindle fire hd. Now, you will need go wifi at the clinic, as well as an amazon prime membership. With this you will be able to watched entire seasons and series of tv shows as well as movies. All for a yearly payment of $100, it is by far, the very best investment I've made to maintain my sanity. It is HIGHLY recommended.

2) Always go to dialysis in a good mood. I don't care if you have to fake it and literally tell yourself "I'm happy." If you go to dialysis in a piss mood, it will only make it go by slower, and do NOT want that.

3) follow your dialysis doctors advice to the letter. You will have to start a dialysis diet, in order to maintain low levels of phosphorus and potassium ( which do not filter out well with dialysis.) You will have to eat low phosphorus foods and take phosphorus binders with every meal. For the love of god please do this. High phosphorus will make you feel like shit, and high prolonged levels can lead to amputation(s). Also take ALL of your medications as prescribed. They will be able to see if you don't take them, and if you dont, it will count against you when you try to get on the list, they may actually reject your application because of it.

4) Drink as little as you can. Eventually, you will stop peeing, so every drop you drink will stay in your body, until you next dialysis session. However, your body can only take off so much fluid at a time. My limit, for example, is 3.3kilos. However, I'm a really small guy. If you go past you limet, your blood pressure might drop ( as it does with me) or you may start cramping ( as it does with most other people.) If either of these things start happening, get some ones attention immediately, it can get REALLY bad if something is not done.

Really, all this is about making the best out of a shit situation, and just trying to maintain your sanity.

Sorry about the probably poor grammer/spelling. As I said I'm typing this at dialysis and can only use one hand to do this.

If you or anyone else have any more questions, or even just want to talk, please send me a PM and I will answer any questions about this.

CelR199213 karma

Holy moly! You have no idea how much this helped me. Some of the stuff is what my mum has told me. She has it as well and was on dialysis until she got her transplant in 2011. My mum was pretty old so I'm praying I'll have a lot more energy than she did.

Are you able to work? I work full time in childcare which my specialist HATES because I get sick a lot but I love it so much and don't want to give it away because I know I'm good at it lol.

My mum used to do it so she could have the weekends off. She was on hemodialysis and did it from home. I'm guessing you're on hemo?

In terms of energy levels how did you feel? Being 22 I still have a long way till my retirement lol and getting my super out is a waist because there is like 3 grand in there so I'd like to hold down a full time or part time job if possible.

Thank you so much for the advise :)

TheMadHatter6109 karma

Yes, I am on hemodialysis. I also used to do it using a Monday-Wednesday-Friday schedule, but recently switched to Tuesday-Thursday-Saturday because I switched dialysis doctors.

I'm only 19, and I do not actually have a job at the moment. However, I am currently teaching myself web design and graphic design, and I try to have a 8 hour "work day" of teaching myself this every day. And, before I graduated, I also was able to maintain going to school while on dialysis. I have also talked to a lot of other dialysis patients, and some of them have actually been able to maintain full time careers, although a lot of them also are only able to do part time.

My energy levels are pretty normal for the most part. I have problems with my feet that prevent me from doing so, but if I didn't, I'm pretty sure I would be able to go for a run everyday. It's not like I'm tired all the time or anything.

I think that you will certainly be able to have at least a part time job, and if you really wanted to, you could have a full time job. You would have to schedule your dialysis around you job ( and sometimes vice versa.) Usually there are three different shifts at a dialysis clinic. You might be able to do something like work from 8-4 and than go to dialysis from 5-9, although it would depend on the clinic. Than there is always home hemodialysis, or paratanial dialysis (no idea how to spell that) as well, but I've never done either.

You can also try to find a job that you could do from home, or that has flexible hours. That's what got me into web design, is the fact that even if I were to get a job with an actual company, instead of doing freelance work, I could do my work from home if I needed to. Depending on the company of course.

Another thing is, you WILL feel better once you get on dialysis. My kindeys started failing 6 months before I got on dialysis. Those six months were hell. Any physical movement was exhausting. I once timed myself, and it took me 5 minutes to get up three flights of stairs at my old school. It felt like I weighed 300 pounds, but I barley was even past 100.

The week that I started dialysis I started feeling better. It was practically overnight.

Oh, one more thing. If you do hemodialysis, you will eventually get a fistula. They will do the surgery for it, and while it is forming over the following months, they will use a chest catheter for dialysis. When I had my fistula done, the surgeon said it would take three months for it to be able to work properly, and to use the catheter until then. However, the people at dialysis said that they would use it after two months, and they did. Not a good idea.

A fistula is basically a combined artery and vein. they put two needles in it. One to get blood from you into the machine, and one to get blood from the machine to you, all in one circet. Well, when they are done with dialysis, you have to apply pressure where the needles were one at a time in order to make the bleeding stop.

Well, because they used my fistula a month before they were supposed to, the "applying pressure" part did not go to well. I was kinda scared to do it my first time, so I had one of the dialysis techs apply the pressure. It was one of the most painful times in my life. They have to hold around a total of 25 minutes to get both of them to stop bleeding, and I was actually crying from the pain for the whole twenty minutes, and afterwards as well. All this actually caused my whole arm to swell, and hurt for days afterwards. I could not even bend my arm for those days because it hurt so bad.

I thought it was normal for it to be like that, and I did three treatments like that. I had accepted my new hell, and thought I would never be able to use my right arm as long as I was on dialysis, because as soon as I would feel better, it was the next dialysis day, and it would all start over again.

However, after three treatments of hell, I saw the surgeon who actually did the surgery, and he said that those idiots were not supposed to be using it yet. And that's why it was like that.

Needles to say, I went back to using a catheter, while my arm and fistula healed. Once It did, I started using it, and there was no pain at all when I had to apply pressure, and I maintained use of my arm.

So yeah, when you eventually do get a fistula, DO NOT let them use it until the surgeon says it's good, and if it hurts really bad when you applying pressure, it's to early to use it.

I hope your Mum's kidney lasts a long time, and I hope you can get yourself a match as well!

Again, if you (or anyone) have anymore questions or just want to talk, don't hesitate to reply, or send a PM

CelR19924 karma

You have no idea how much you've helped me. You've put a lot of my concerns at ease.

I hope you're able to get a transplant soon, are you on a list?

Thank you so much!

savyleigh22 karma

How does someone go about donating a kidney?

CelR19924 karma

Hello :)

In Australia you have to elect whether you wish to be an organ donor or not. They used to do it when you went for your license but now it's changed and then when you pass on they'll remove your organs and pretty much send them where ever they need to go. Things like kidneys are great because you only need 1 so if a person dies they save 2 people with their kidneys.

Other ways to donate are if you know a relative or close friend who is in need you can donate one of your kidneys or whatever. I know in the states who can get a donation from anyone but unfortunately here it's illegal for some stupid reason.

INeverEffinSleep12 karma

How much does this affect your daily life currently? Do you have to do some type of dialysis already?

Also, you mention getting pregnant. Is this currently a concern (or want) of yours?

CelR19929 karma

I get a lot of migraines and they get worse every time which i was told was linked to them failing so I take medication to try and help with them.

I get exhausted really easily, which can be annoying at my age because obviously I would like to "party" lol. I work full time tho so it's not too bad.

Sometimes the cysts rub together and my kidneys get really sore. I work in child care and it conflicts with my lifting, I can't hold children on my hip because they get really sore and sometimes I get lightheaded.

I have high blood pressure as well so I get dizzy spells but those are medicated as well.

Working with children, having one myself is constantly on my mind. My partner isn't ready for children yet but I feel like I'm ready just can't afford it. A lot of my friends are having children which makes it hard for me because I feel like I can't. So it does play on me but not as much as it will.

work0987612 karma

A lot of my friends are having children which makes it hard for me because I feel like I can't.

You're 22 and a lot of your friends are having kids? wtf

CelR19922 karma

Yep, and getting married. They start early here I'm guessing.

It puts a lot of stress on my partner because he thinks I want him to propose but I don't lol not until his ready and as for children's well it's a matter of tough titties. Can't have them yet.

PrinceParadox11 karma

Where are you from? I'd be willing to test and see I am am a match for you

CelR19923 karma

I'm from Australia! :)

PrinceParadox3 karma

I live in the states... DO you know your match info?

CelR19923 karma

I have been given the slip to go and find out but as I pretty much have everything counting on my dad being a match I will be a complete mess if he isn't.

His had his test but everytime I get to the building I freak out and don't go in.

Zoijja10 karma

Sorry to hear about your predicament :(
I do have one question: What happens if your kidneys do fail? Is there an artificial kidney-mechanism they have for if you can't find a donor?

CelR199211 karma

Hello, thank you for your question.

At the moment they are testing if my dad is a match for a donor kidney. If his not a match I will go on a 5 year waiting list for a transplant. However my kidneys have to fail completely before I am put on the list. While I wait for my transplant I will be on a dialysis machine.

Zoijja5 karma

It's good to know you can be looked after without kidneys. And your dad is a great guy. Good luck getting better!

CelR19925 karma

Thank you very much! :)

halfpakihalfmexi2 karma

This is probably a stupid question but if he is a match, you get it, right? I just realized how stupid that was. Why would he be a match but you still have to wait. I'm sorry for wasting your time reading this. Best of luck

CelR19923 karma

Lol no it fine. Yeah if his a match I will get his kidney.

However he needs to lose weight. His not obese or anything like that but they rather you be a certain weight to make it safer when they operate.

While he gets prepped though I will still need to go on dialysis.

deni_an2 karma

Look into peritoneal dialysis if you can. You'll have more freedom and actually be more hemodynamically stable (and feel better more days of the week) than if you do hemodialysis. It does take effort on your part but you can move around be your own caretaker instead of relying on the dialysis nurse/tech.

It's not an option for everyone but let your health team know you're interested - sometimes doctors don't even offer it because so many aren't willing to take care of themselves so it's a bigger risk on the doctors part.

CelR19922 karma

Hi thank you for the advise!

My mum has been on both peritoneal and hemodialysis so I've been lucky in a sense to witness both in action.

She first tried the peritoneal but she got a massive infection in the tube inside her stomach and had to go to into hospital and have it removed. Put I like the idea of watering my plants with the stuff that's removed lol.

She then want on the hemodialysis and they trained her so she could do it at home. Most of my fear comes from hemo. There where a few times where I would come home to blood everywhere from where she'd inserted it into the fisher wrong or didn't get it connected. Plus the size of the needles freaks me out! Lol

CoughCoughMom2 karma

Do you have PKD in both kidneys? What are tbe chances of a donated kidney growing cysts? I have one kidney myself; I had Wilm's tumor that was found at 14 months old during exploratory surgery. I had a huge lump that kept growing (it was the tumor).

Kidneys are one of the most sought organs. I hope one day there will be more options available since so many people need them. Good luck to you!

CelR19922 karma

Yeah I have it in both kidneys and in my liver. I'm not sure of the science behind the transplanted kidney being infected with the cysts, I personally have never heard of it happening before tho.

supersad55628 karma

I had a transplant 11 years ago when I was 22. My only reminder is the daily fist full of pills I take. Besides that my life is completely normal. Hang in there it does get better!

CelR19923 karma

Thank you! In a way I'm excited for them to fail because once I have my transplant I feel like I'll no longer have it hanging over my head.

kishypoo7 karma

First off, condolences for all that you're going through. Sounds like a rough time and I hope you can stay strong and get that transplant!

As for my question, I hope I can word this without being too rude and offensive, and I sincerely apologize if you interpret this negatively. What I basically want to ask is, since your doctors have told you that pregnancy is not advisable for you right now, would you consider adoption instead? And since PKD is hereditary, would you consider going with adoption instead of biological children even after receiving a transplant, to avoid possibly passing on the disease?

Please do not misunderstand; I do not want to tell you you can/should never bear children because of your condition. Just curious how your condition factors into the decision. I also felt inclined to ask the hard question because of what you said here:

I'm ready just can't afford it. A lot of my friends are having children which makes it hard for me because I feel like I can't.

You're obviously giving it serious thought and just want to suggest keeping your options open... And also mention that just because your friends are having kids doesn't mean you need to. :) Live your own way.

Best wishes!

CelR19923 karma

Thank you for your question. No way, what you've just said what I question myself.

In terms of passing it on, I am extremely worried about. My mum passed it on to all of her children, however they don't have it bad just me. My siblings have it but not bad, they will most probably live their life with no drama's.

I personally am torn because there is a 50% chance that I will pass it on to my own children but they may also not get it or get it but not bad. So it's just a matter of whether I'm willing to take the chance, which at this strange I am unable to truly answer with confidence.

Adoption and fostering is something I've always wanted to do regardless of whether I have my own children or not. I'm a very affectionate person so I have a lot of love to give.

But of course like anyone I would love to have my own, I guess not having the choice right now is a blessing because now I have to go throw the back end of this condition and see if it's something I am willing to risk passing on.

Thanks for your questions :)

DarylThomasGilbert5 karma

[deleted]

CelR19923 karma

My partner is no where near ready to have children yet, his a very work orientated person and he wants to get as far in his field of IT before we bring children into the equation.

If my dad doesn't match however and I'm still on the waiting list for a kidney at say age 27-28 it will be something we will consider yeah.

fellowhomosapien5 karma

Reddit! Somebody give this woman a kidney!

CelR19921 karma

Bahaha thank you!

YayVelociraptors4 karma

Hey, my grandfather had kidney failure and had to undergo a lot of dialysis. Do you have to do any of that? I'm sorry to hear about your predicament. How likely is it that you'll get the kidneys?

CelR19923 karma

Hello

If my dad isn't a match I will have to go on dialysis until the perfect match comes on the donor list.

Unfortunately it's not just blood that needs to match, you have to have the same tissue type as well.

But if my dad is a match I will still have to dialyse for like a month or so while he gets prepped for the operation.

CavalierEternalz4 karma

I recently lost function in my transplanted kidney (had it done when i was 2). Now currently am on dialysis twice a week with minimal function left. Sorry to hear about your condition, luckily you're not alone :D.

CelR19922 karma

Aw no! I am so sorry to hear that. Are they making any plans to replace it or?

No, I've been told to join a support group so I can talk to people going threw the same thing.

Just posting this AMA has helped me so much.

Totesmcgotes7024 karma

I'm 23, female, currently on dialysis. I'm a mod at /r/dialysis come on over if you need people to talk to, ask questions, etc.

To be honest, it's not so bad. The toughest part for me is watching my diet. I looooove cheese, yogurt, milk, etc. now I can hardly have any. Also the liquid restriction sucks. Worst part, I'm not eligible for a transplant because of my insurance....it sucks. I totally understand where you're coming from on the kid part, but hopefully your states waiting list doesn't take so long. (For example NV AIS 2-3 years while CA is 5-7 years wait time) Mind if I ask what state you live in?

Best of luck OP!

CelR19922 karma

Hello!

I live in Queensland Australia. Our waiting list is 5-10 years but if you're lucky it can be earlier.

What kind of dialysis are you on, if you don't mind me asking.

Than you for the link I'll pop over. There are some days where I melt down about it just the general fear of it so it'll be nice to talk to people who are going through the same!

Totesmcgotes7022 karma

Ohh, well hopefully your dad is a match. I'm on hemo, I was on peritoneal for a while (8 hours overnight, every night) and I enjoyed the dietary freedom but unfortunately my site started to scar, so I had to return to hemo. Do you know which type you would like to try? Yeah of course, a lot of people just vent lol and it's nice to talk to people that know exactly what you're going through.

CelR19922 karma

Yeah fingers crossed. I'm more inclined to go with the peritoneal. Simply because I remember my mum went with it first because of the freedom she had on it. Also because my mum fishler freaks me out lol.

Jagerkush4 karma

Hey, I don't have any questions for you (annoying, I know, I'm sorry guys)-- just wanted to let you know to not give up hope. My little brother was born with a disease that caused various severe health problems his whole life, including making him appear to look severely pregnant (which sucked a lot for a teenage boy), and a failing liver. He was on a transplant list for 2 years, never had even one possible donor, from age 18-20. Last summer his liver completely failed and he almost died of a blood infection, and then miraculously received a liver the day afterwards. He is doing great now; first time in his life that he's ever been completely healthy. He looks handsome, normal, and has been dating a few girls (like a playa) this year, and finally got to start to college at the age of 21. Never give up hope, your life could become GREAT!! I know how much this sucks for you right now, but you need to just hang on and have faith that things will get better. Feel free to PM me if you ever want to talk about anything. My brother is my best friend, we're only a year apart and have been roommates since he graduated high school, so I know pretty much everything that went through his mind as everything was happening.

CelR19923 karma

I'm so glad that it was a happy ending for your brother. I hope he find the right girl.

My stomach is huge as well, my mum says it's because of the size of my kidneys and my liver is enlarged as well, it hangs just under my ribcage which was a pain when everyone was wearing those high belts because I couldn't wear them lol.

Reading this made me feel so happy, I'm so glad everything has turned around for him. I've watched my mum suffer with the same disease I have so I know it's hard watching someone and not being able to help.

Jagerkush2 karma

When you get the transplant your stomach will go back to normal! Seriously, my brother lost 40 pounds during his transplant surgery because of all the fluid they drained out, and they also took out his spleen which weighed about 22 pounds. Now his stomach is perfectly flat, honestly a little concave because he is so skinny now (not a bad problem to have for us girls lol). Luckily those flowy shirts and tanks are in right now and they look so cute! I'm so glad I could pass on a little happiness to you! I'm a 22 year old girl too, and us twenty somethings need to stick together, so PM me if you ever want to talk!!

CelR19923 karma

Oh I hope so, my mums put on a lot of weight because of the steroids so I'm not looking forward to that but she did lose a lot of weight whilst she was on dialysis which I don't mind lol.

For sure! Same to you, I have a few penpals so another one wouldn't hurt lol :)

BatMatt933 karma

Serious question here. In case you dont get any kidneys, do you have a bucket list of things you want to complete?

CelR19928 karma

I haven't really given it much thought.

I know I really want to travel tho. Europe mostly

BatMatt933 karma

Gotta meet the british.

CelR19922 karma

Bahahaha exactly!

horde073 karma

What does someone do if they would like to see if they are a viable donor?

CelR19923 karma

Unfortunately in Australia there are a lot of red tape with donor transplants.

I know in the states they have like a stranger site where you can view profiles and donate to whom ever but unfortunately here you have to be a close friend or family member. Which I think is freaking ridiculous.

horde072 karma

That is ridiculous! What if family members or friends aren't a match? O well, I'm sorry?? I'm sure some guys on here are military, we could sneak you in, give you a new identity, get the new kidney and smuggle you out! It will work great!! :)

CelR19922 karma

BAHAHA, there is the donor list here but it could take from 5-10 years. The trouble over here is that kidneys are in such high demand and there aren't enough people willing to donate or sign at to donate their organs when they die.

Smuggling me in sounds like a great idea! I'm on board.

CoughCoughMom2 karma

About a month ago a Redditor did an AMA because he was a unknown donor. Very interesting, Look it up. He donated through University if Maryland (they're the leader in kidney transplants in the states); got tested, they matched him & the rest is history. He said he doesn't know the person nor does he want/need to meet them. It's just something he wanted to do.

Most days I think people are selfish pigs, but then I read a story such as that & it reminds me kindness does still exist.

Ok. So another question: in the US if you receive a kidney, your responsible for the $ for operations. Is that the same in AU? Say you had to wait on a match other than your Pop, and it was a living donator, would you have their costs as well?

CelR19922 karma

Um not sure how to answer this one. So I'll tell you what I do know.

My mum got a transplant in 2011 but you're not allowed to know where it came from or the circumstances of them donating it but you can send them Christmas cards and such. They have to be approved first though so you can't say who you are or anything.

I know my mum didn't have to pay for her operation but she did have to pay for a place to stay at for a few months after her transplant because she wasn't allowed to come home.

I know we have Medicare over here and I know I'm on it so I'm hoping I don't have to pay. Nothing's been discussed with me about it so fingers crossed.

SpoaMaster3 karma

what are you planning to do the next two years?

CelR19926 karma

I did have plans to travel because after I receive a transplant travel insurance is REALLY expensive but unfortunately I don't have the money to travel at the moment. Hopefully I will have the money at some point.

Other than that I'm just focusing on keeping myself healthy :)

JustAdolf-LikeCher2 karma

Where are you from?

CelR19922 karma

Australia :)

JustAdolf-LikeCher2 karma

Oh, I don't really know how healthcare is there. Are you insured?

CelR19922 karma

We have Medicare here which I'm with yeah. Things like life insurance though is a pain to get if you have a condition like mine or with any of your organs.

eddiefx2 karma

Both my Mum and my Sister have this condition and my Mum was told she could survive on dialysis for a long time before she got her kidney transplant. Her kidneys were effectively dead for several years before she got a transplant, I don't know if I'm asking a dumb question but can you not survive long enough on dialysis to get a transplant?

CelR19922 karma

Oh yeah! Of course. I'm not on death walk or anything like that lol. It's just not a pleasant experience. My mum has it as well and she got a transplant in 2011.

I think most of my fear of dialysis comes from her experience with it. She was in her late 50's so obviously being younger my experience will most probably be different.

But fingers crossed my dads a match.

TheSodesa3 karma

There is something that I'd like to ask you, and I hope that this doesn't come across as me trying to be rude, but here goes:

Considering there seems to be a strong hereditary component to getting this particular disorder, have you considered not having children of your own, even if it became an option in the future, and instead adopting if you ever got the urge to start a family?

Personally I would find this to be something to consider if I was in your situation. Heck, I don't even have Crohn's disease, which my dad has, but I've pretty much decided that I will not be having any kids of my own(the disease might still be in my genes, but recessive). There's just too many people on this planet already.

CelR19922 karma

Hello,

No you're fine, I've gotten this questions already but I don't mind answering it again.

As it is hereditary, there is a 50% chance that you will pass it on to your child. My mum passed in on to all of her children. The good thing though is that if you do have children and they don't have it than it stops there.

My sisters have children, one of my sisters children has it but he has no troubles with them and is said that he probably wont either. He actually plays football for some pretty big teams here in AUS. Contact sports are a BIG no no but because he doesn't have it that bad he was given the ok to play from his specialist.

I have 2 other nephews though, who have been tested and they don't have it meaning that they can't pass it on to their children either.

Its because of that reason that I am still considering and am wanting to have my own but of course I am not 100% confident in that decision.

So I guess you could say that being told I can't have them until I have a transplant is a blessing in disguise. I will have that time to experience what it is like when it goes pear shaped and will be able to decide whether I think it is worth taking the chance.

Thank you for your questions :)

saeryin2 karma

Is there any side effects to donating a kidney or only living with one kidney ? (after reading this im considering donating one of mine if i can handle it haha)

CelR19923 karma

Umm I think the recovery period is relativity short. I've never known anyone who's donated so I'm just going off what I've been told or have heard.

I know you have to watch your intake of alcohol and I think you have to watch your diet a bit but other than that I know you can live a long and normal life with just 1 :)

sjleader2 karma

Is there no one in your family who can donate?

CelR19923 karma

My dad is the only one who can and he has to match both tissue and blood type so fingers crossed.

Unfortunately all of my 4 siblings have the same thing so they can't donate.

I have cousins, aunts and what not but I'm not close enough with any of them for them to consider it. Time to start kissing arse lol

absolved2 karma

All four of your siblings have the same kidney disease? How does your dad decide who to donate to in that situation?

CelR19923 karma

2 of my siblings have passed from unrelated issues. So there is just the 3 of us left.

My brother hardly has it, he'll live his whole life with no drama's.

My sister has it worse than him but again she will live her life with no dramas.

I got it the worst and I need a transplant to keep on going so I'm the one that gets it. Plus I'm the youngest so pretty sure I'm the favourite :P

sjleader1 karma

Why does it take so long to test him...They can't do that in a few days?

CelR19922 karma

I suppose because they want to be 100% sure before they cut you open and chuck in there.

They can easily reject even if the tissue and the blood type matches. So they have to do a lot of test to make sure that won't happen.

ceilte2 karma

No questions, just ::hugs::

CelR19923 karma

Naw thank you :)

viviennecase2 karma

How do we find out if it would be a match? I'm sorry to hear about this. Have you thought of maybe if you aren't able to give birth (once you get the kidney), that you could do a surrogate mother type deal?

CelR19922 karma

He said that his had women who have had a baby 6 months after their transplant so it's not uncommon.

It I reach a certain age where I feel like I'm getting too old like 28( not saying that's old) or so than it's something I would consider yeah.

Thanks for your question!

Iwant2fuckshanewalsh2 karma

Im very sorry to hear this :( What kind of daily problems do you face because of your failing kidneys?

CelR19922 karma

Hey,

Um mostly I just get exhausted really quickly which means that I really have to watch my diet because exercise is like nah forget it.

Pretty much everyday I have a headache at the end of the day, I also get really bad migraines. I am on medication to try and keep them at bay but sometimes they get really bad.

I work in childcare, In some aspects it makes my job difficult because I have trouble with lifting children sometimes, especially the ones on the heavier side. Holding them can be difficult because I can't just put them on my hip as they sit on my kidneys and they get really sore and sometimes I get really lightheaded from it.

I also have high blood pressure so that can play a part too, some days are harder than others and some days you can hardly tell.

the1gordo2 karma

Hey, I don't have any questions, I just want to wish you best of luck with the future. It sounds like you deserve it.

CelR19923 karma

Aw thank you very much :)

BalgruufTheGreat1 karma

Do you think that there is more time until your kidneys fail?

CelR19921 karma

It's just an estimate, it could be a little longer but based on how much function I've lost over the year that's the figure his given me :)

NiceIce1 karma

Hey there, I am in a similar situation. My kidneys don't function properly. I am completely unable to process sodium, which is most commonly found in sodium chloride, aka salt, which is found in pretty much everything.

CelR19921 karma

Aw no! I'm sorry to hear that.

I'm not supposed to have salt but I love it lol

jboyarsky1 karma

How would you feel about lessening prisons sentences if they give a kidney transplant?

CelR19921 karma

I don't agree with it. They were given that time in prison for a reason.

Picturerazzi1 karma

Did you want to have a baby within the next two years?

Edited: typo

CelR19921 karma

It's not so much that I want one, it's more the fact that if contraception fails and I do fall pregnant before my transplant I will have pretty much have no choice in the matter. I would have to abort for both my own medical needs and that of the babies as if I was to carry one full term there would be complications and the baby could be under developed.

sleepyshouse1 karma

You can have one of mine if you have my kid. Deal?

CelR19921 karma

Bahaha! How old is your child?

sleepyshouse1 karma

Once i give you a kidney the kid should be born in around 9 months ;)

CelR19921 karma

Ohhhh, I didn't get it lol but now I do. Well you're more inclined to have one than my partner lol.

sleepyshouse1 karma

Just tell him its his, plus you know, kidney.

CelR19921 karma

BAHAHA! Sounds like a plan.

spooky9810 karma

Is the thought of dying even something you're considering right now? Or are you 100% confident that a transplant will occur?

CelR19922 karma

I'm not dying at all lol. If I don't get the transplant from my dad I will just go on a donor list.

The waiting list is around 5-10 years but you could get earlier if you're lucky. In the meantime while I wait I'll be on a machine called dialysis which will do pretty much what my kidneys can't do.

AloversGaming0 karma

I AM SURE YOU WILL BE FINE!!!! <3

CelR19922 karma

Thank you for taking the time!

HitsABlunt-4 karma

Have you tried fasting, Urine therapy or drinking pure water?

CelR19924 karma

Nah I haven't. I have rain water? I dunno what pure water is lol.

I do drink a lot of cranberry juice tho :)

HitsABlunt-1 karma

Rain water is close to pure water, Distilled water is the closest, RO is the next best thing. Drinking pure water is said to alleviate the strain on the kidneys by reducing the intake of inorganic minerals which your body usually filters out via kidneys and liver.

obviously this should be used to compliment what ever therapies you are currently under going.

urine therapy is the same idea but you just drink your urine. The science as to why Drinking your own urine actually purifies and increases your ability to clean your blood is unclear. but the immense popularity of this therapy and the amount of success it has had on almost all disease is hard to ignore.

The president of India openly practices Urine therapy!

considering the situation you are in, i would think you would be at least open to alternate ideas.

Last but not least is fasting, the idea behind fasting helping the kidneys is just the overall workload of the kidneys would decrease during the fast allowing them to repair themselves.

CelR19923 karma

I am in no way drinking my own urine, I have a bad taste in my mouth as it is I'm not adding pee pee to it lol

But the pure water doesn't sound like a bad idea, I drink a lot of water anyway. Simply because I enjoy the taste of rain water lol.

I'll look into fastening, I usually run the ideas past my specialist and he'll tell me what has worked for his other patients.

Thanks for the advise :)