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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.

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

TheMadHatter6103 karma

No problem!

I actually just started the process of getting on the list last week. Really happy about it! Thank you!