Quick back story. I had henoch schonlein purpura when I was 5. They brought in a specialist to diagnose me. I've been dieting and managing CKD since then. I guess it was inevitable that I would need a transplant one day. Just never thought it would be this soon.

Proof: http://imgur.com/XZh7HKo

My fundraiser: http://www.youcaring.com/medical-fundraiser/kidney-transplant-help/233838

Comments: 377 • Responses: 90  • Date: 

VonLorin94 karma

How can I check to see if we're a match? I'd gladly donate a kidney to you...

PureBookTodd42 karma

You can contact my nurse and she will set you up with an appointment and test. PM for details. Thank you so much for just considering it.

nails_are_my_canvas24 karma

I wish I could get match tested, but I don't know if my kidney would be viable? I'm O+, but I had a severe kidney infection last year and so my kidneys are now a bit weaker as a result.

PureBookTodd29 karma

You would probably not be a good candidate. But thank you for the offer. Now go make someone's day :)

Lildrummerman32 karma

What's Hemodialysis like? I'm 23 years old, about 6-7 years post transplanted and was on peritoneal dialysis but I understand that the two treatments are very different.

PureBookTodd29 karma

It's not so bad. Before using my fistula I used my catheter which is still in place. It's run above my collar bone and down into a vein that runs into my heart. My catheter is a little sensitive so I can't move a lot or the machines alarm will go off. I believe the tip of one of the tubes is laying on the wall of a vein. The tubes have to be reversed in order for it to work on me. I'm not suppose to eat or drink while filtering. My diet is much more restrictive than peritoneal dialysis. After treatments I'm often light headed and very weak and need too eat protein. I generally feel better after I stuff my face and sleep. The next day I feel amazing! Care to share your experience?

Lildrummerman22 karma

Mine was nightly an the catheter was insterted directing into my abdomen right into the peritoneal cavity as to flush the toxins in my body. At night I would 'load up' a bag of saline liquid onto 'the machine' (it's what we called it back then, I'm not sure of it's actual name' and connect myself to it. While is slept, I filled up, then drained of the solution, and every morning before school I'd cut open the dispose of the bag by cutting it open, then dumping it into the toilet. I only had it for a year and a half but it really did a doozy on me developmentally. As a kid I had no access to kids my age outside of school so I was a little bit behind socially (I just figured out how to read a room like...1 year ago lol) but it wasn't cancer and it wasn't terminal so I'm grateful for that, but I can't deny the negative effects of having such an adult disease as a kid.

TL;DR Filled up with fluids via saline bag+catheter, was an awkward little disaster child.

PureBookTodd6 karma

Did it smell bad? Did you have to worry about infection? These are the reasons I haven't switched. I can't imagine having to go through this in school. Glad you're doing good now! How's your diet?

whitepowderybeef12 karma

I worked as a dialysis nurse for years. PD is so much easier on your body. Hemo is much riskier as far as infection is concerned. Are they cannulating your fistula yet?

PureBookTodd5 karma

Yeah I have been told that. I'm so scared of doing it at home because of infection. Yes I am at my second treatment with my fistula. So happy to have the catheter removed once they go up a needle size!

whitepowderybeef7 karma

Showers will soon be in your future! :) Does your unit have a home therapies department? Even if it doesn't, ask your nurses or nephrologist about PD. I wish you all the best with transplantation!

PureBookTodd12 karma

Oh my god I can not wait to stand under a hot faucet for three days straight! I believe they do. I'm just worried about infection at my house. I have a cat.

beopenguin12 karma

I had a perm-cath for 7 months waiting for my av fistula surgery. The first day I was allowed to shower, I remember crying from the feeling of finally getting clean. Damn that was a good day. Best of luck on the search, you never know where your donor will come from. My donor was a girl I met on ok Cupid. She signed up to be tested after the first date. (Hemo for 4 years and transplant for 1year. )

PureBookTodd6 karma

Wow that is an amazing story! Thank you for sharing.

whitepowderybeef3 karma

PureBookTodd6 karma

Thank you!

takeandbake2 karma

Ask the dialysis center about training options for home hemodialysis in the future...it may not be an option for you now, and it's a big learning curve, but people who do home hemo love it! They can do dialysis on their schedule rather than dependent on the center's schedule (dialyze during long shift then feel sleepy and need to nap after going home).

Have you ever looked at this blog?


PureBookTodd3 karma

It sounds great honestly. If I don't get a kidney soon and can work around having a pet I would love to do it. No I haven't seen that yet. Thank you!

takeandbake3 karma

It takes time...you won't likely be able to jump on the wagon with the training program yet because it sounds your fistula is relatively immature and you've only been dialyzing for a short period. Ppl who enter home hemodialysis training are experienced and really know their treatments well.

For example, one woman I know did in-center hemo prior to entering the home hemo training program. During in-center dialysis, her daughter, less than 10 years old, knew how to take her mom's blood pressure, the mom cannulated herself, and the daughter knew what was going on. Note, this was not any pressure from mom for the daughter to take care of her mom, but the daughter thought it was fun and interesting. Those ppl are the best candidates for home hemo--they get to the point where they are really doing all the in-center stuff by themselves!

Get to know the hemodialysis staff, learn everything you can!

PureBookTodd1 karma

I absolutely will look into this. I don't know if I can cannulate myself just yet, a little nervous. Hearing about her daughter having fun doing it is so beautiful. Thank you for that story.

Lildrummerman3 karma

It didn't really smell too bad, I listened to the doctor and drank a LOT of water so it was really water-y. I absolutely always had to worry about my infection and went to the nurses office to change my gauze/site nice and cleaned.

Before I go on, I want to explain to people why it's so funny to me that you've mentioned your diet multiple times

When you get any sort of kidney disease, SALT is one of the main things the doctors try to sway you from. Let me tell you something, nominally healthy people of the world, salt is literally the key to taste in about 100% of food. /u/PureBookTodd (btw, Todd and the Book of Pure Evil reference?) here is DYING to get his hands on any food that isn't essentially steamed veggies, and terribly bland chicken breast.

Let me rest your worries, my diet is 100% unrestricted. I do eat healthy, BUT I am allowed to eat foods like bacon, fries, burgers, etc. But my advice: don't ever reach for the soda. Kidney stones WILL happen, which is why I only drink water.

Long story short, you will have bacon again my friend.

PureBookTodd3 karma

I love drinking water. I don't ever retain fluid and my salt levels are always stable. Although I do not salt anything and I use a lot of herbs and salt free seasoning I do not have to eat as bland as I use too. I eat turkey bacon every once in a while. Yes it's a reference ;). The main thing I'm looking forward to is pizza. My god I miss pizza!

baberunner2 karma

PD dialysis solution smells sugary. Not a good smell but I would rather smell that then a lot of other things.
There is no swimming or shower sex with PD. Hey, it may be TMI but it is relevant, my husband and I have only been married a few years. We are only 32. He was diagnosed with interstitial nephritis (sp?) and end stage renal disease (or CKD I just got corrected) last March. At first we did some dietary changes but we don't have to worry about out so much anymore.
To quote my husband (who has been on both dialysis types) "Fuck hemo!" He was very tired on hemo. With PD he can leave a fairly normal life even if he has a specific bedtime now. :) He is waiting for a transplant as well. Best of luck to you! Keep your spirits up. You are not alone. :)

PureBookTodd3 karma

That's really encouraging! Your husband sounds funny :) I hope the best for him as well and I hope you two together the best. Everyone needs someone like you in their life.

Uncle_Humpy1 karma

I just want to say good luck. I'm 40 and started undergoing this experience this year completely unexpectedly. I was previously healthy and then had unexplained kidney failure in May this year. I have a donor who is keen and the early signs are looking good for compatibility.

PureBookTodd1 karma

Thank you for the wish of good luck. Good luck to you as well!

OlafSpassky26 karma

Hey man, just came to say good luck with everything. I recently turned 30 and was on dialysis for seven years before I got a transplant last year.

Also, I had a suggestion as to donors. I was one the list in my state for 8 years, and was pretty much at the top, but wound up getting a live donor kidney through a paired donation program, and I would suggest that option if you have someone who wants to donate to you but doesn't match.

Have you had the unfortunate displeasure of infiltrating your line yet?

PureBookTodd9 karma

Thank you for the wishes.

What was the name of the program it sounds like a great option. I have a few friends considering donating. They have not been evaluated by my nurse yet.

I'm not sure what that is. So probably no, it sounds terrible.

minnick2711 karma


Its great if a friend wants to donate but doesnt match

PureBookTodd3 karma

Much thanks! You guys are amazing!

OlafSpassky6 karma

Here's the one that I participated in. The information on it is halfway down the page.


PureBookTodd3 karma

Thank you so much!

Mark_JT8415 karma

In all seriousness, how do I go about seeing if I can donate one of mine to you?

PureBookTodd11 karma

I can PM you with details.

Mark_JT848 karma

Why are we getting downvotes for this?

PureBookTodd10 karma

Reddit. Enough said. Pay them no mind.

Arpikarhu10 karma

how long can you stay on dialysis before you have to have the transplant?

PureBookTodd5 karma

That I really don't know. I've heard older people tell me they have been on for 30 years. I don't think they are on the list. It's a strain on the heart but it can be done. I take flax seed oil to help with heart health.

MakesNoSenseInAnyWay10 karma

How do I know if I can donate?

PureBookTodd12 karma

If you want to just donate to anyone you can try http://www.kidney.org/transplantation/livingdonors

If you want to donate to a specific person you need to contact their nurse at their transplant hospital.

Ranaeil6 karma

I just wanted to come here and say that it's very brave of you to post this on reddit. I posted here a few months ago about needing a transplant and now my donor is 1 step away from us having a surgery date for my transplant. I wish you nothing but the best.

How are you handling the diet? How many binders do you have to take with your food?

PureBookTodd3 karma

Thank you for that. Did your donor come from reddit? I wish you much luck as well :)

I take about 4 800 mg pills of renvela. One time a nurse told me to take a bite of my food and then take my pills and eat the rest of my food so they could bind. It made so much sense!

AmzeyWamzey6 karma

I recently donated my kidney directly to the national list in the UK, and I'm wondering what your feelings are about receiving a kidney from a stranger. If you did accept one would you have an interest in meeting this person in the future, or would you feel uneasy doing so? I have a mild curiosity as to who received mine but I am not strongly inclined to find out, and I wonder if meeting me might have some sort of negative psychological effect on the recipient, such as (unwarranted) guilt. I wouldn't want to offend them if they happened to contact me in the future.

PureBookTodd3 karma

Personally I would love to meet the person who donated. I would probably spend a very long time trying to make it up to them that I am using one of their organs to live. How can you repay someone that saves your life. Also I would probably be convinced that I will start some what acting like them just out of silliness.

kurt10046 karma

Around 6 months ago I started working as a tech at a dialysis clinic. I already have close relationships with many of my patients. I kinda have my favorites. What is your relationship with your techs and nurses from the other side of the chair? What advice can you give me on being a better tech?

PureBookTodd6 karma

I'm not really too close to any of the technicians. I just moved to this new unit because I didn't like the old one. There was one gentleman at the old one who would try to relate to me and I found that comforting. There is another gentleman who works at this one and has shown interests in the books I read. If you want to be a better tech just pay attention to your patients. Get to them asap when they are cramping. Ask them how they are doing or if they need anything. Just being treated like a friend instead of a patient makes all the difference.

kurt10046 karma

Personally I prefer to avoid the cramping if possible. How long have you been on dialysis? Congrats on being put on the list by the way. I see a lot of patients who aren't able or willing to put in the effort to do it. I think it would be really cool if Reddit found you a kidney. It's a bold strategy.

PureBookTodd3 karma

Yeah avoiding it is the best. This tech the other day made me cramp so bad because he didn't notice that I never pull anything because I still have urinary function. I've been on since January of this year. Thank you I'm happy to be on the list. Yeah if I was offered a kidney from reddit I don't know what I would do. I started a fundraiser to give my donor some help with medical bills and personal bills for taking time off work.

minnick273 karma

Did you tell your tech you dont pull anything off? I was a tech for 5 years and always listened to my patients. There were people that i put a .4 removal in and thats only because we would normally use 1 bag of saline for the setup of the circuit and then another bag during the blood return.

PureBookTodd1 karma

I forgot to inform him because I assumed everyone knew. My pull history clearly had all 0's. He is just very hyper and young. The nurse got on to him about it.

minnick272 karma

You should always ask what they are pulling. If they feel the need to take more off they should tell you why. Its your treatment, not theirs.

PureBookTodd2 karma

Absolutely. I will from now on.

NotElizaHenry3 karma

Are you sure about the legality of giving money to your donor? I'm on a donor list for a paired donation and I was told many, many times that I couldn't accept money from anyone involved. And while lost income from time off work is a concern, your insurance covers all of your donor's medical care related to the transplant for two years.

PureBookTodd1 karma

The hospital told me that the donor themselves needed insurance and that my insurance would only cover me. No one has told me yet to not give money to my donor. If it is a problem then i will just donate it to the Nation Kidney Foundation.

kurt10041 karma

If you get a lot of interest in this AMA, perhaps you should post a link to that fundraiser at the top? That's something I would be interested in.
Edit: also maybe some info on how/where people can donate kidneys

PureBookTodd1 karma

I'm not sure if that's allowed but I will try. Thanks!

YourSpellingSucks1 karma

What blood type you got I think I'm a+ and I also have two kidneys

PureBookTodd1 karma

I'm o positive but I think there is so much more that they test. If you PM me I can give you my nurses info.

skajoeskawork6 karma

I work for the pharmaceutical side of one of the bigger dialysis companies. I don't often get to interact with patients so this is great.

  1. What has been the biggest lifestyle change outside of diet and dialysis? Read more, less sports, dating, etc. I just watched a patient with a broken wrist ride a century (100 miles) last weekend and was floored by him. It was the day after dialyzing too.
  2. What has been your biggest struggle with your pharmacy(ies)? With clinics?
  3. Do you plan on participating in any type of awareness campaign? Most people don't realize young people can have CKD and would be very interested I think.
  4. What is something you wish more people understood about dialysis?
  5. What's your favorite subreddit?

Thanks for doing this. I hope you get a donor soon and best of luck.

PureBookTodd4 karma

  1. I definitely read a lot more. I haven't been working so my endurance has dropped but I do exercise and lift weights. Work was my primary source of exercise. I play the guitar a lot more now and can see my improvements. My relationship is great although it has been tested by me getting so depressed and her not fully knowing how to deal with it. We prevailed though. We are a strong duo. I can still ride my bike with ease. I cook so much more and have such a better sense of taste. I am much more patient with others. This has really slowed down life for me.

  2. The only thing I can think of is having to go wait in a room for hours so a doctor can take my blood pressure and tell me I'm ok for a surgery. They do that every day at dialysis. Not sure why I had to drive to a separate building and waste my day. But I really don't care in a big way.

  3. I haven't thought about any campaigns but I certainly am now. Thank you for the idea!

  4. I wish more people would understand that it's not a great solution for end stage renal failure. I feel like we can do so much better. Also I want my roommate to understand that I'm not immortal because I get my blood cleaned.

  5. My favorite sub reddit is /r/food because I can take almost anything I see on there and make it kidney friendly.

Thank you for you good luck wish!

WonderWeasel915 karma

Funny. I'm on break from my job....as a nurse in a dialysis center, and I happened upon this AMA.

I guess I'd like to know, what's it like being probably one of the youngest people in your center? Most of my patients are 45+ years of age, many of them disabled and missing limbs due to uncontrolled diabetes. Do you do treatments the typical 3 days a week in a center, or are you doing PD at home?

If you've been managing CKD since you were around five, have you been dialyzing since then as well, or did you have enough kidney function to stay out of dialysis for a while?

PureBookTodd4 karma

I definitely feel out of place sometimes. Every once in a while an older person will talk to me and it makes me feel good. Other than that I feel like people may look down on me like my CKD may be self inflicted due to drugs or something. I'm doing hemodialysis and just started using my fistula. I was just placed on dialysis in February of this year.

i_overexplain5 karma

Brother, I was on haemodialysis for three years, 28 to 31, before getting a transplant last year. Being surrounded by people much older than you at dialysis can really do a number on you psychologically. Try to stay in work if you have a job you can still do, it helps. The only other thing I'll say is I had a catheter while they were trying to sort my fistula out (ended up with a graft) and my first shower in six months was so fucking amazing. Just the best thing. Oh, and I legit don't think anyone's judging you. They're far more likely to think 'poor lad, he's only young and he's in here'. Keep on with life, brother.

PureBookTodd2 karma

Thank you so much for those words. That actually made me tear up for a second. I am so psyched about a shower!! What kind of work were you doing at the time. I was building bikes but I took a break. Now I want to get back at it but we are slow right now.

i_overexplain2 karma

Mine was an office job. I kept full time hours for ages, because in my head even though I was dialysing 3x a week, wasn't really ill bc i was able to work full time. That ended when I collapsed at work and got sent home. Keep your hand in something at work if you can or it gets you down. Also, YMMV and IANAD, but as a young guy with I'm presuming no health issues apart from this kidney bullshit, you may be able to get away with more as regards diet than others, especially when you're dialysing 'properly' thru the fistula at top speed. Talk to your dietician. Bananas are out, but the very occasional slice of pizza might not be.

PureBookTodd4 karma

Cool thanks for the advice. I made some pizza the other day with buffalo sauce that was made from only peppers and i loaded it with veggies, chicken, and no cheese. It was delightful. I do miss bananas too. Before i went on dialysis i ate one almost everyday. Which may explain a lot.

WonderWeasel912 karma

Oh, okay. I was wondering why further up you mentioned that you have a catheter. Usually we try to get those removed ASAP. I'm 23, and there aren't a whole lot of people in our age group on hemodialysis. It's always a little out of place to see a younger person in my clinic.

I know this is your AMA and all, but if you've got any questions, feel free to ask me. I know patients are sometimes reluctant to ask things when they start dialysis. It's a whole new world with lots of rules and changes, and things that are difficult to understand. Hell, I'm still learning. But, if you've got something you want cleared up, or don't totally get, feel free to pm me.

PureBookTodd2 karma

Yeah I definitely want it out ASAP. Thank you. If I can think of something I absolutely will.

mrrp3 karma

I just listened to an interview on choosing transplant recipients.

Dr. Ezekiel Emanuel on the ethics of choosing transplant recipients

Do you have any strong thoughts on the process you'd care to share?

PureBookTodd5 karma

I'll have to listen to it later. I only have %20 battery left. I'm not really clear on the process. I just know they evaluate you depending on your age, health, and how committed you are to dialysis and keeping your mineral levels stable. I would have to say I agree with that. There are only so many kidneys to be given. I know there may come a day when I'm older and will need another kidney and I may be denied.

TotallyAGG4 karma

Or hopefully by that time 3D printed organs are a viable alternative.

PureBookTodd2 karma

That would be amazing. Or if stem cell research was more widely used.

criss9903 karma

What's your favourite pass time to do during your treatment?

PureBookTodd5 karma

I go through phases. Lately it's reddit. Before that it was read. Before that it was this 3 hour block of American dad and the Cleveland show. My all time favorite is sleeping or meditating. Time just flys by.


There's something about being sick that makes you lose interest in one thing and gain a lot of interest in something else very frequently. I went through a similar span when I got my heart transplant.

PureBookTodd3 karma

Wow! A heart transplant?! How was it Going through that. How do they even do that? I agree. It's like it rearranges your brain.


Surprisingly it was very easy. At first it feels like you were ran over by a semi truck but I was able to go to a 5 kilometer walk a couple months after transplant and I started to feel like new a year later. The first year is sort of tough because the drugs drag you down.

Some people's brains are affected after transplant this is why they do tests to make sure that your brain is functioning normally. They make sure all of your senses are working, that you are able to do simple math, and in my case advanced math (I was a construction engineer and working towards programming now), and so far I'm functioning top notch. I had an artificial heart (LVAD by Heartware) but that's a whole different story.

Cheney, the Vice President under Bush wrote a book called Heart: An American Medical Odyssey. His story is very similar to mine, minus the politics of course.

PureBookTodd1 karma

That's really cool. Thanks for sharing. I'm glad your better now and have a successful career.


No problem, it was my pleasure sharing it. You might feel like you're at rock bottom right now. But speaking from experience, sometimes you have to reach rock bottom in order for things to get better. I have met young people that have had kidney transplants and they are all looking very healthy. With your age, you will make a quick recovery and reap the benefits of your new-funded health.

Best of luck, keep your head up, and win this battle.

PureBookTodd2 karma

Your comment definitely is keeping me in high spirits!

kellhus3 karma

Hey man, I hope you find someone. I am myself are at 13% kidney performance and have to start dialysis next year. I am terrified to tell the truth, I feel like I can't start anything for now until I am fixed again. How do you deal with it? Even after the transplantation there will be some time before you are back to normality.

PureBookTodd1 karma

Really the only thing that is a big problem is the strain that it can put on your body. Don't be afraid of it. There are so many people out there on different types of dialysis living normal lives. Don't put anything but unhealthy eating/habits on hold for your kidney disease. I promise you that you can do this!

kellhus1 karma

Are you afraid of the medicine you have to take after the transplantation? I took prednisolone for half a year back then when I tried to stop my body from attacking my kidneys. It fucked me up bad. I gained about 66 lbs and couldn't lose them to this day.

PureBookTodd2 karma

I'm terrified of the medicine. I absolutely hate prednisone. I gained so much weight and had a fat ugly face haha. But I lost it and stopped taking it after weening myself off. Though that may be a contributing factor to where I am today.

slipperyoatmeal3 karma


PureBookTodd2 karma

The main thing I noticed in earlier years was blood in my urine. But I thought I had it under control being as that hasn't happened in a while. Right before I was put into the hospital I was having intense headaches and itchy skin. I stopped eating salt and slowed down on caffeine. Keep monitoring your BP. Never ever ever take NSAIDS. Stop all sodas and caffeine. Take it easy on protein. Research research research! Look up your diet and stick to it no matter what. Always have insurance and go for regular check ups. Just because you feel fine and have no symptoms does not mean you are ok. If you don't want to have a new kidney every 10 years, take charge now. They don't take out your old kidneys unless they are covered in cysts. Your new one goes in the front near your abdomen. Dialysis sucks. Please take care. Good luck to you!

Rolead2 karma

My question is not to you directly, sorry, but I thought I might get an answer here. Has it ever happened that a kidney donor developed a condition requiring him to get a transplant himself? Not because of the surgery, but just as a coincidence.

And I wish you the best of luck, OP!

PureBookTodd2 karma

Thank you for the wish of luck. That's a very interesting question.

dorkian_gray2 karma

Has dialysis affected your sex life at all? How about exercising in general?

PureBookTodd3 karma

I'm not sure if it was dialysis or my blood pressure medicine but I did have trouble with erections at first. I've notice that I am less interested in sexual activity but not totally uninterested. I can not exercise as hard as I would like to but I can stay in shape.

whereamitho2 karma

WOW! i had henoch schonlein purpura last year for a few months (i was 26) and you're the first person i've heard of talk about it since. No one else knows what i'm talking about when i tell them about it and show them the photos. I also was not informed by my doctor that it could lead to needing a transplant in the future so this is good info.

My father was on dialysis for 5 years until my best friend donated her kidney to him last December. I hope you find your donor soon!

What was your experience with henoch schonlein purpura like?

PureBookTodd2 karma

Yeah, everyone looks at me strange to like I'm speaking a different language when I mention it. It was a long time ago but I remember blood in the urine and not being able to stand on my own for a few days. It only leads to a transplant if it attacks your kidneys which is rare. Thanks for the wish of luck. Hope yours never progresses. And I'm glad to hear your dad got a transplant!

mblaumuller2 karma

I recently started working for a nephrologist, rounding in the hospital and at the dialysis clinics. Just a few questions.

  1. Are you going to have your tunnel cath removed soon?

  2. Have you had trouble keeping your albumin levels up? (Any tips I can give the patients I see?)

  3. Do you still make any urine? If not, does it feel strange to no longer pee?

Random fact: Did you know that long term dialysis can actually damage the remaining kidney function a patient may have left.

I wish you the best of luck in finding a suitable donor, and in your future endeavors minus the 3 times a week dialysis.

PureBookTodd1 karma

  1. Yes they told me after 3 uses of my next needle size I will have it removed.

2.No my albumin is great. I eat a lot of chicken and eggs. I eat a protein rich meal everyday directly after dialysis. I rarely eat a meal without protein in it.

3.yes I never lost urinary function.

I never knew that. I always assumed dialysis was giving my kidneys a break.

Thank you for you wishes.

mblaumuller2 karma

Oh I know you must be excited about getting the tunnel cath removed!

Short term dialysis doesn't cause any damage to remaining kidney function, but long term often does, especially if your time on the machine increases. The machine plus tubing takes about 200ml of blood out of your body for the entire time you run. So on average that's -200ml for 4 hours 3 times a week for 52 weeks over years. This means there is less blood in the body to perfuse the kidneys. That would not be a big deal if it were occasional, as in the case of acute blood loss due to an injury, but over time can really take a toll on your kidneys. The body will perfuse the heart, brain, and lungs first when the body is low on blood.

And now that I have rambled on for way to long, I will again congratulate you on your acceptance to "the list".

PureBookTodd1 karma

Thanks for that I for, seriously. At one point the transplant scared me so much I just wanted to stay on dialysis forever. This definitely helps me know that I made the right choice. Ramble on :) and thank you again.

Kirstyisthirsty1 karma

Albumin isn't the greatest marker of protein. I see plenty of frail old ladies with albumin levels of 40+

PureBookTodd2 karma

I did not know that. Thanks!

SaltyBabe1 karma

I recently went through all the work up to get a double lung transplant, it's a lot of work. What is the process they use to get you on the kidney transplant list?

PureBookTodd2 karma

I don't remember all the test they did but it was a lot. Blood test, cardiac test, stress test, X-rays, they injected me with something that made me feel like I was peeing on myself. Several other things that I don't know the name of.

SaltyBabe1 karma

Oh that contrast for a CT scan that makes you feel like you're peeing! I've done that three times (not lung related) and every time I semi-panic that I'm peeing! Do you have to keep your tests up to date too? I know several if mine I have to re-do every so many months while I'm on the wait list.

PureBookTodd2 karma

I probably will have to if I am on the list for a long time. I just got approved to be on the list last week.

Miles_Prower11 karma

Have you considered PD?

Btw kidney transplant is one of the easiest organs to get. And you being young you will have an excellent chance of getting one.

Best of luck to you!

PureBookTodd2 karma

I have but I think I have to get rid of my cat bc of risk of infection. Thank you!

kidneyboy791 karma

I had three cats when I was on PD. No problems, they never even looked at the tubing.

The only problem now, is post-transplant you're not supposed to change their litter.

PureBookTodd1 karma

That's good to know.

Can I never change it out? I thought that would just be for a little while.

kidneyboy791 karma

Well, I'm not a doctor, but...there is a warning on most brands of litter about it. I guess I'd think never, because you'll always be immuno-suppressed after the transplant.

PureBookTodd2 karma

That sucks. Well time to train my cat to poop in the toilet.

kidneyboy791 karma

Yeah, I hear that. We have two cats at the moment, and I feel guilty every time my wife has to change their litter. I have done it a few times, here and there, and have not gotten any crazy infections. But, like I said, there is a warning on most litters, so it's not something to fuck around with.

PureBookTodd2 karma

I will keep this in mind, thanks dude.

luellasindon1 karma

I have a cat that I got before my kidneys failed completely. I had her through hemo, and I still have her now on PD. I was on the cycler before and she was fine, didn't touch the line at all, and now that I'm back on bags she's good with those too. Couldn't give two shits.

The only thing is that I'm not supposed to deal with her litter since I am immunosuppressed (Vasculitis caused the kidney failure) so I get someone in to take care of that every few days for me.

It's definitely possible to keep a cat and be on PD.

PureBookTodd1 karma

Thank you for that. I don't know what i would do without her. I have to get over the guilt of someone else cleaning her litter box though.

asterixspacejohn1 karma

did you ever deal with the depression of the whole thing ?

im 24 and have been on hemo dialysis for 5 years

PureBookTodd3 karma

Yes i did. I have had spouts of depression all my life and have seen a few therapists. I have not seen one since i have been on dialysis though. I refuse to talk to my social worker because she creeps me out. But I do think I'm managing well. I've found exercise and being outside helps me a lot. That and i stopped smoking pot.

Frodafett1 karma

How do you know if some one is a match? How could someone see if they are a match?

PureBookTodd1 karma

You would have to get some testing done by the hospital that is doing the transplant i believe.

tami61 karma

Do you already have a donor or you're waiting for one? How long will it take for them to find you a match? I'm in the middle of Europe but I have two completely healthy kidneys. Is there a way we can remotely check our compatibility? Is this idea even viable due to our distance? I really don't know how these things work in the international environment, so if you have some details, please do let me know.

PureBookTodd1 karma

I'm not sure how that would work either. I think there are organizations that can pair us up. I haven't been made aware if distance is a problem. Although I believe the longer the kidney goes without oxygen the less likely it is to work. Though I'm not 100% on that.

halfsane1 karma

Hey man. I am 30 yrs old. I was diagnosed with stage 4 CKD last year. I will need a transplant eventually as well. The sudden news freaked me out and its always on my mind. How have you been able to manage your situation for so long? Any advice? Good luck to you!

PureBookTodd2 karma

Proper diet and exercise. Do not take NSAIDS. Do not eat salty foods. Do not drink caffeine. Keep an eye on your blood pressure and lay off the protein. Just stay really strict with your limitations. Other than that just stay happy and live a great life. Good luck to you too buddy!

SmarmyArmy1 karma

Best of luck to you! Hope you get a donor soon. I work in the field, taking care of the hemo machines and water treatment stuff. I'd be happy to answer any questions you may have about how everything works in the clinic. How many transplant lists are you on?

PureBookTodd2 karma

Thank you for the wish of luck. Can you tell me why they put potassium in my dialysis solution if I'm not suppose to have potassium? Why not leave it out and let me have it? Maybe I don't quite understand that part though. I believe I'm on the two. Living and deceased. Are there more?

SmarmyArmy2 karma

Good question! It's all about diffusion. You need a certain amount of potassium in your blood to survive. Potassium is one of the compounds that can be removed through the diaylzer. So what they are trying to do during your treatment, is get your blood potassium level to a normal level. It is very common for dialysis patients to have high potassium levels, sometimes dangerously so. There needs to be some potassium in your dialysate, because if there was none, the treatment would remove too much of the potassium in your blood. That is a bad thing and would make you really sick. So it's all about balancing your blood potassium levels. Hope this makes sense! And yes, there are a ton of different potassium/calcium formulations. You said you are on a 2 potassium, which is very normal.

PureBookTodd2 karma

Thank you for that, it was very informative. What types of things can the dialysis machine not get rid of?

[deleted]1 karma

As a dialysis patient, what is the best things that friends and family can do for you to show support and comfort for you?

PureBookTodd1 karma

Learn that persons diet and try to make them food or buy them food they can eat. My mom still doesn't know what all I can eat. My gf on the other hand try's really hard. If they are feeling depressed about their situation, don't pressure them. Just get them out of the house.

sloth_runner1 karma

My mother had henoch schonlein purpura as a child as well, though never needed any other care other than a month in the hospital right after she was diagnosed. How much is time a factor? How does henoch relate to CKD?

Sorry that I don't know much about either...just curious.

PureBookTodd2 karma

Are you asking if she could still have damage years down the line? If so I'm not sure. I'm not too sure how it relates either. Sorry I couldn't be much help on your question. Some of these other people are technicians, nurses, and pharmacists. Perhaps they can help.

WangHubris0 karma

What's your blood type?

PureBookTodd2 karma

O positive

WangHubris2 karma

I'm B+ :(

PureBookTodd2 karma

It's okay. :::hug:::

[deleted]0 karma


PureBookTodd1 karma

Neither. I can't eat bananas, but when I could they were whole. I've never personally seen a bird fly into anything.

hajj_3-4 karma

Are you afraid the dialysis machine will stop working whilst you are asleep and you will die?

P.S Enjoy your sleep tonight.

PureBookTodd2 karma

Haha no. It's not life support. It's an artificial kidney that I use 3 times a week.