I've had kidney problems since the age of four but the actually failed in February 2016. I got onto PD as soon as I could but unfortunately I wasn't able to get the clearances I needed so I had to go onto hemo in December 2016. To get the hemo started I've started with neck lines then moved to a chest line. Finally I had my fistula made and now I've started using that. Ask me anything :)

My proof: https://www.instagram.com/p/BOS-qkBDi4I/

Comments: 83 • Responses: 31  • Date: 

hoppy102813 karma

How long have you been on the transplant list?

I am in the same boat as you, I was diagnosed with end stage last year after never having any problems, after 4 months on Hemo I went on to PD, which evidently didn't take enough toxins out and within 6 months I went from being totally mobile to now being in a wheelchair with sever e metabolic neuropathy. I am back on Hemo and starting to feel a little better but still have lost total feeling in my Feet. I just got the last surgery that I needed to get on the transplant list last week. Good luck to you my friend

Keep an eye out for this but my nephrologist and every other doctor I have seen has never saw it escalate this quickly.

J4nner10 karma

I've only just got on, I'm really lucky as my brother is a match. I have a couple of things to sort out but I'm hoping to get my op this year sometime. That's crazy how it changed your life so extreme. Are you in the chair all the time? Be careful with your feet if it's anything like what diabetics have with loss of feeling then it can lead to all sorts of nastys. Stay strong and take it easy bud.

martigan993 karma

Hi, in theory could you live doing dialysis forever? How often do you have to do it? Can you eat or drink anything?

la_peregrine12 karma

There are dietary restrictions on both peritoneal and hemodialysis. Biggest ones are phosphorus, potassium and fluids. All are restricted. You need to eat a lot of protein, which naturally contain phosphates. You do take phosphate binders to help but have to read the ingredients for added phosphates. Sadly in the US sodium phosphates is a common preservative. Vegetable sources of protein are bad with soybeans being on the never ever should you eat list. So are any milk products, so no milk, no cheese, no youghurt, no sour cream, no ice cream, no soy milk products. Oddly enough cream cheese and almond milk are OK in moderation. No dark sodas.

Potassium is a doozy. If you are on PD, you can have more but on hemodialysis you can be severely restricted. The hemodialysis restrictions can be truly brutal : 2-3 servings per day, exclude fun things like potatoes, oranges and bananas. White rice and bread are better than whole grains. Canned veggie is often better than the raw one since the canning can leach out pottasium.

Dialysis patients loose their ability to produce urine. PD can preserve whatever residual function you kidneys have, and you can absorb or give up fluid via the peritoneal membrane (in exchange for calories). Hemodialysis can be set to 0( most centers suck at that) or pull some. Still your fluid intake is limited to avoid fluid overload. Bye bye soups, watermelon, refreshing drinks...

Salt is another thing that nutritionists hammer on. But the literature doesn't support this. Sadly most nutritionists continue to spread the misinformation making the diet harder than it is.

Either way dialysis patients take a shuttle. Of meds: phosphorus binders or two, fiber, blood pressure meds (esp due to fluid overload), PTH regulators at some point (because if your phosphorus calcium balance gets out pottasium f whack you will either calcify you organs and blood vessels or leach calcium out of your bones), special dialysis vitamins in part because severe veggie restrictions and in part because their body can't take the nutrition version and turn it into the version the body uses, some antiinflammatory herbal stuff since they are always running low grade inflammation, epogen ( the hormones that the kidney would produce to tell the bone marrow to make red blood cells), iron so that red blood cells can be made, and special vitamin d.

This is more or less the list if you have no other problems like diabetes and what not.

Forgot another one : bye bye chocolate too.

Edit: a shuttle of meds is what autocorrect thinks i meant when i type a shitton of meds...

J4nner2 karma

Amazing, you've basically spelt out my life! Haha

J4nner3 karma

Hi, yes I can live forever!! Haha no on a serious note there are guys who I meet at treatment who have been getting dialysis for ten years plus so I've got a long way to go yet. You can eat and drink whilst on dialysis you just have to do everything with one arm as you get treatment in the other. I get treatment three times a week (Mon, We'd and Fri) for five hours at a time.

Onuma13 karma

What has been the scariest thing you've dealt with as a child, and now as an adult? Are there still things involving your medical situation which scares you at all, or are you more-or-less inoculated to the routine?

J4nner2 karma

Very good question. I only remember small amounts of when I first got I'll. I do remember though the feeling of not really knowing what was going on, there were doctors and nurses everywhere so as a small child that used to scare me. As an adult I kind of just take everything as it comes at me. Getting told your kidneys have failed is never nice but as I have been expecting it for so long it wasn't the massive shock it should have been.

Dr_Prunesquallor3 karma

My kidneys failed as an adult, my first reaction as we realised they were failing was ..oh well, what are kidneys anyway, how bad can that be..big learning curve followed.

J4nner1 karma

Yeah I hear you, I have had kidney issues nearly all my life but the amount of info I have had to take in since they failed has been unbelievable. I have found the more I know about my condition the less I'm worried, is this the same for you?

Mythril_Zombie3 karma

I'll bet dialysis is boring. Are there ever any hot nurses that want to help pass the time by... Inspecting your tubes, if you know what I mean?

J4nner5 karma

Haha that would definitely make the time go by quicker. Unfortunately though I can't imagine that happening. I'm on a ward with 14 beds I'm sure the other patients would get upset :)

w00tah2 karma

I understand all too well. My brother went through RF, and had to have a kidney transplant (his mother was a match; different moms, him and I). He lived without issues up until about 3 years ago, and started going through failure a 2nd time. He's got a fistula as well, and does dialysis 3 times a week.

Not really so much a question as a plea: Please don't be like him, do what the doctors ask so you don't end up going back into failure because you're too stubborn to listen.

That being said, what caused your situation? Hereditary condition, birth defect of sorts, etc?

J4nner1 karma

I plan on really looking after the new kidney when I get it trust me. I'm really not wanting to do this again for a long time if I can help it. My kidneys were diseased when I was four years old and I ended up with nephrotic syndrome. My kidneys have been gradually getting worse since then.

racord3602 karma

Hi! Fellow ckd and dialisys patient here. I've been on both pd and hemo. I'm currently doing in center treatments and today happens to be the first day my fistula was used. I have some questions: 1. Are you listed and do you have any living donor prospects? 2. How many and what binder are you on? 3. What do you like better, hemo or pd?

J4nner2 karma

Hi, to answer your questions 1. Yes I'm listed and I also have a living donor. I'm very lucky that my brother is a match. Hopefully if everything goes ok I should be transplanted this year sometime. 2. I'm on Sevelamer (Renagel) 1600mg three times a day. I take take just before I eat a meal. I also take an extra tablet if I have a big snack. 3. Of was better as I could do it overnight. I plugged myself in and fell asleep it was great. But I feel better on hemo. I know it's clearing more toxins as I generally feel like myself again. I've managed to get my hemoglobin up as well on hemo so I'm not so tired.

How did your first fistula session go? Mine blew as soon as she stuck the needle in! Good job I've still got my parma-cath in my chest.

Take it easy.

Gruvmaster2 karma

How old are you and is there anything you could have avoided or to have detected sooner?

J4nner2 karma

I'm 34 and unfortunately not. I had a disease called nephrotic syndrome when I was four which slowly degraded my kidneys.

Gruvmaster4 karma

I'm sorry. I hope you get too live life to your fullest...

J4nner3 karma

Thank you

dukeofcypress3 karma

What was the cause of your nephrotic syndrome? I read elsewhere that your hematocrit is back up, good to hear! Is that with help from exogenous erythropoetin? How are your albumen levels and do you need supplemental albumen?

J4nner2 karma

I had strep throat when I was four and a germ from that went to my kidneys and kicked it all off. I got my hemoglobin up (although it took ages) by EPO and iron. I get it every Monday whilst in for treatment. Can't believe how much better I feel now it's back up. My albumen levels have always been on the low side but never low enough to do anything about it.

Shwoos2 karma

A friend of mine whom I have known for 13 years has had 2 transplants for the same kidney and is now on a transplant list for a third. His first transplant was from his dad (who has since passed on), and his older sister. He often expresses how miserable he is about not being able to do much in terms of activities. To try to make him feel better, a group of mutual friends and myself play D&D with him on regularly. My question is, what sort of things brighten your day?

J4nner2 karma

I have two children and a wife who I love spending time with. Unfortunately I've had to give up work for the moment so I'm a househusband and I really like it. I used to do a lot of activities including surfing which I've not been able to do which sucks. I try and get outside as much as I can which is always good.

That's great that you and your friends take the time to cheer your friend up. I've seen some people get really low whilst being in this situation so having friends like you guys will be doing your friend wonders.

DrTitanium2 karma

Thank God for the NHS, right? I'm in my final weeks of medical training now and will start working as a junior doctor (fingers crossed!) in July.

What have medical personnel done that annoys you most? What can they do better?

J4nner1 karma

The thing that annoys me the most is seeing the staff (doctors/nurses) being short staffed and having to struggle. As an example on nights on the ward where I get treatment I've seen 14 beds nearly all full and only two members of staff on. The poor guys never seemed to sit down once, that's when mistakes can happen. Like you said though thank God for the NHS it truly is a wonderful thing. Good luck with everything.

StudlyMadHatter2 karma

Have you considered doing home hemo and/or nocturnal hemo? You definitely should because of the improved outcomes, but if you're not considering it I'm curious as to why.

J4nner5 karma

I've just started my home hemo training. I have to wait for my fistula to mature properly first though. I'm aware of the improved outcomes plus I can dialise at a more sociable time. It's 2.13am where I am and that's just me getting home from treatment.

hoppy10283 karma

I'm 30 and We are in the same exact situation, I just got my fistula in my wrist last week and also started training for home hemo 2 weeks ago.

J4nner1 karma

Good luck with everything :)

StudlyMadHatter2 karma

That's awesome to hear! What system will you be using at home? If they'll let you do it, you should push for nocturnal. Dialysis is like BBQ - long, low, and slow gives you the best results. As long as you secure your needles really well you won't have to worry about an accidental (and catastrophic) needle disconnection.

J4nner1 karma

I've never heard of nocturnal dialysis? I used to do the PD overnight but the hemo has always been while I've been awake. Sounds good though I'm going to ask about it on Friday when I have my next treatment session.

StudlyMadHatter2 karma

Definitely look into it. I think you're in Europe, so I don't know the laws, but there aren't any devices that are strictly approved for it...it's all "off label". Google it on some of the dialysis boards and you'll learn more. If you really want your life back, feel great, work a normal schedule, etc. then nocturnal is the only way to go. If your doctor doesn't like it because of the risk of needle dislodgment in the middle of the night you should push back. I once met a dialysis patient (who was also a dialysis nurse) that had been alive for 25+ years doing nocturnal. It's really, really awesome.

J4nner1 karma

Thanks for the info

samwise09122 karma

On a personal level, what are some of your favorite films?

J4nner3 karma

As sad as it maybe my favorite films are the lord of the rings trilogy. Just can't get enough of those little fellas! Haha

Noremad_0gre_11232 karma

Do you believe in God? If so, are you angry?

J4nner9 karma

No I don't believe in God I'm an atheist. I've had the "why me" bit but then I just remember that there are people in a lot worse situations then me. I might have to get treatment three times a week but I have a good life.

talenklaive2 karma

With doing the at home hemo, do you need a home nurse to help set it up each treatment? Or do you get all the training to do it entirely yourself?

I ask because I was also diagnosed with ESRD last December. I started out on hemo, but the Dr's wanted to get me off of hemo and onto PD pretty quick because my blood clots so badly in the machine. I've been on PD for a little over a year and only recently they've (tentatiely) taken me off dialysis as my kidney function did improve a bit. But they have told me that if it gets worse again, which its likely to, then I'll have to look at hemo again.

J4nner1 karma

I have to complete a training folder and get signed off with competencies before I can get home with hemo. You learn everything from washing your hands , setting the machine up to doing your own needles. They recommend that someone is always in the house with you when you dialise as you could go flat. My wife is completing the training as well so she can do everything as well.

throway_nonjw2 karma

Are you going OK with the haemo?

I only asked the question to say this. My son had nephrotiuc syndrome when he was one (left his mother and I a complete mess, but that's another story). We managed to keep him okay until he left home, and then he didn't take care of himself and after a few years ended up on PD for a couple of years (the bags! the boxes!) before it stopped being as effective. They moved him to haemo end of 2015, putting in a fistula, having him go to a clinic 3x a week for dialysis, until they provided him with a machine that performed dialysis overnight. Three months ago, a kidney suddenly became available, and transplanted fairly quickly. Since then he's picked up fairly quickly and his life is much closer to normal than it has ever been, and he's getting ready to be a dad for the second time in April. He's 27.

My point is, hang in there. It can take time, but your turn will come around, and when it does, with the way medicine is improving these days, it'll be good. Good luck.

J4nner1 karma

Thank you for your kind words. I'm glad to hear your son is doing better.

rickmuscles2 karma

Once you're healthy, what are your goals for the future?

J4nner1 karma

I would love to get back to work offshore again if possible. I used to work a good rotation and really enjoyed my job so I'm aiming for that. I'm not sure if I'll be able to pass a medical once I have my transplant so I'll have to wait and see. I would also like to get back surfing. I'm going to try again once I get this tube out of my chest but it will have to be a flattish day as I get gassed quite easily at the moment.

rickmuscles2 karma


J4nner2 karma

Appreciate it thank you

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themeatbridge1 karma

Good point. OP, Imma need to see your creatinine clearance rates.

J4nner1 karma

Haha not sure how to show you them? My last lot of bloods showed my creatinine level was over 800 (pretty dialysis)

_VincentVanDope_1 karma

Is there anything that you specifically regret?

J4nner3 karma

Nothing I can think of? Everything that's happened has been beyond my control. I just try and make the best out of every situation.

iamreeterskeeter1 karma

If you were able to get a kidney transplant, would your new kidney be at risk as well?

J4nner3 karma

No my original illness was only with me when I was young. It effected my kidneys but once the new one is in it will be fine.

iamreeterskeeter1 karma

I wish you the speediest discovery of a donor.

J4nner1 karma

Thank you

themeatbridge1 karma

Are you on a transplant list?

J4nner1 karma

I am yes

Dr_Prunesquallor1 karma

any sign of tx on the horizon or are you expecting a long wait?

J4nner2 karma

I'm really lucky as my brother is a match. We are just sorting a few things and then hopefully the transplant can go ahead. Hopefully later this year.

roda13131 karma

Can you travel? Go to the UK they cant refuse your treatment here.

J4nner2 karma

I'm in the UK, Scotland to be exact.

spaceship-earth-13 karma

I wish you were going blind instead, cause then I could say, see ya later alligator. How ya doin?

J4nner1 karma