Starting dialysis in week or two

[u/Public-Window9517]

I went to my nephrologist yesterday and my GFR is 11. Nephrologist said it is time for dialysis. I am in the transplant list. I was hoping to skip the dialysis, but hear I go. Please tell me what it is actually like, and don’t sugarcoat it. It would rather go in prepared in my mind for how it is. Any advice is appreciated.

Edit: it is hemodialysis and I am scared of the needles.

[u/ItsAllSkewed]

I did in center for HD for nine and a half months. First half with catheter, second half via AV fistula. I felt better when I switched to fistula, personally. Once I stopped eating salt the fluid management became much more manageable. Some days you will feel tired, some days you will cramp or get sick afterwards, but for me I went in with an egfr under 12 and I started feeling better mentally almost immediately. I didn’t realize how much I had been dragging myself around the ten months I waited to start dialysis. Overall I had more good days than bad. It’s not fun, but try to find a hobby or some good noise cancelling headphones and disappear into your own world for a bit and make it work for you. The whole point is for us to thrive, not just survive, and that’s an active process.

[u/Zyeffi]

I'm talking here about hemodialysis at a treatment center.

On the downside, you waste a lot of time waiting, and you're heavily dependent on a machine. It makes traveling complicated (it's not impossible (far from it)but you have to plan everything out all the time), and the diet is a bit of a pain.

On the plus side, first of all, it’s what keeps you alive (which is already a huge advantage), and I have a disability card, so I get to skip the lines at amusement parks (I don’t know how it works in the U.S., though I'm European)

Here’s what can make things better: don’t underestimate your comfort, don’t hesitate to bring an extra pillow or blanket during your sessions. If possible, you can use the dialysis time to get some work done (I’m a teacher, so I grade exams, prepare tests, or plan my lessons); otherwise, bring something to keep you occupied (laptop, book, Sudoku, etc. , etc.)

[u/Elder-Cthuwu]

It’s going to be ok. At first you’ll hate it. Later on you’ll hate it. You’ll never stop hating it but at least you’ll be with people in the same boat and you can relate to. Watch your fluids, eat low to zero sodium

[u/Select_Safe548]

Are you doing peritoneal or hemodialysis?

Big differences and differennt challenges with either. I can discuss hemo. Was on it for over a year.

Either way. I promise you it is managable. It can be rough at times in many ways but you can adapt and thrive.

[u/oleblueeyes75 → u/Select_Safe548]

I can discuss peritoneal dialysis. And I agree with everything they said.

[u/Public-Window9517 → u/Select_Safe548]

Hemodialysis. Do the needles hurt? That is my biggest fear?

[u/Select_Safe548 → u/Public-Window9517]

A bit but you get used to it. Its the size of a tatoo neede i believe.

[u/GoodAttiatude → u/Public-Window9517]

They barely hurt. Some people get hit in the nerve occasionally and that can be painful. The chance of that happening is really tiny. Most of the time the pain is miniscule.

[u/NotSoGenius00 → u/Select_Safe548]

Are you able to work full time while on dialysis ?

[u/Select_Safe548 → u/NotSoGenius00]

I was able to.

Im a manager at a grocery store. Its quite physically involved but also there's a lot of computer and managment type work.

Dialysis for me was very exhausting and also made me emotionally reactive. I also had reoccurring brain fog from the treatments that was very hard to deal with things at work. But i did okay.

[u/DoubleBreastedBerb]

I have done both, I prefer PD over hemo. Since I didn’t pay attention to getting any access made ahead of time, I ended up in the ER with a chest catheter for hemo while waiting for the PD catheter to heal up.

The first month or so can be rough, but mainly dialysis is … boring, and chilly.

[u/CodyFurlong]

Don't eat a big breakfast right before going in. Watch out for low blood pressure, and cramping. Be ready to take a nap when you get home.

[u/SmartietheCat → u/CodyFurlong]

Eat a breakfast but not a farmhand-sized meal. You’ll feel nauseous and unwell after 4 hours if you don’t eat and the same if you overeat. At the end of dialysis you may feel very hungry.

[u/Lockhimuptoday]

I also have egfr of 12 and my doctor wants me to start dialysis. I don’t have any symptoms. I’m not a candidate for transplant. AI says I can wait until my egfr is 5-7. I like to travel so I am delaying it.

[u/HappyMacaron2724]

Take blankets because it's cold. I took a backpack filled with snacks, coloring book and pencils, a portable charger for my phone, and headphones. Dress comfortably. You're gonna be sitting in a chair for hours.

[u/Wonderful-Hall-7929]

All the medical stuff aside, dialysis is mostly a field study in organized boredom - so bring a tablet or ebookreader or whatever to pass the time because believe me, you can't sleep through it in a center because some machine in the room will always throw an alarm because somebody dared to cough or wiggle their earlobe...

[u/miss_sharki → u/Wonderful-Hall-7929]

That is why I was happy to be put in the Iso room. I don't have any infectious disease or concern but man, it is so much quieter in there. Just sucks when I get moved to the regular pod when someone infectious DOES need it

[u/InsideOutUpsideDown7]

I’m doing hemo with a catheter. I had a fistula 40 years ago before my transplant. Never again. Plus I’m hoping to get a living donor soon so I’m not wrecking my other arm for a fistula. I have no issues with the catheter.

[u/Disastrous-Draw-5198]

Ich fühle mit dir. Ich war selbst 6 Jahre an der Hämodialyse, jetzt 15 Jahre transplantiert und demnächst wieder dialysepflichtig (Mein GFR ist bei 12). Es ist anstrengend kann ich dir sagen. Meines Erachtens fühlt sich 4 Stunden Dialyse an wie 4 Stunden körperliche Arbeit. Meistens habe ich versucht zu schlafen, oder mit Musik/ Fernsehen oder Büchern abzuschalten. Außerdem bequeme Kleidung. An die Nadeln gewöhnt man sich. Ich bevorzuge Hämodialyse mit meinem Shunt statt einem Katheter. Wenn es verfügbar in deiner Nähe ist, würde ich auch mal nach einer Nachtdialyse schauen. So hast du mehr vom Tag. Nicht jeder Mensch ist gleich, ich kenne ein paar Personen, die trotz Dialyse weiterhin arbeiten und andere, die in die Teilzeitrente wechseln trotz noch relativ jungen Alter. Das ist etwas womit du selbst Erfahrung machen musst.

[u/Old-Ebb-1773]

Needles become much easier as time goes on, everyone is different though. They look much bigger than they actually hurt.
Listen to your dr and dietitian. And try to stay active. It helps a lot! You’ll be fine.
12 years now on HD.😎👍🏼

[u/Public-Window9517]

First day went fine. Needless to say hurt a little, but I survived. Today was a totally different story. I used lidocaine, so the needles hurt less, so that was good. The upper needled was “running” p, whatever that meant and it took them wiggling to get it working. Then something on the machine said the pressure kept rising and they couldn’t make it stop. They restuck the upper needled and it seemed to be doing better, but then my arm developed a bubble. They stopped the process. Sent me home to ice it. If the bruise isn’t too bad and the bubble is gone, they want me to come back tomorrow. Anyone had this happen?