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MedicalI have end stage renal failure, I've been through peritoneal dialysis and now I'm on hemo dialysis. ASK ME ANYTHING!

Feb 15th 2017 by J4nner • 14 Questions • 188 Points

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/

Q:

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.

A:

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.


Q:

Interesting, thanks

A:

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.


Q:

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.

A:

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.


Q:

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?

A:

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.


Q:

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.

A:

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.


Q:

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.

A:

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


Q:

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

A:

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.


Q:

godspeed

A:

Appreciate it thank you


Q:

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?

A:

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.


Q:

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

A:

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.


Q:

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

A:

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


Q:

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

A:

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.


Q:

Is there anything that you specifically regret?

A:

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.


Q:

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

A:

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