Dialysis is different for everyone, but there are a lot of similarities, too. The initial shock of realizing you need it due to some form of kidney failure or disease — whether acute or chronic — followed by acceptance, followed by buckling down and doing what you have to in order to be healthy, is all normal. My own acute-onset kidney failure resulted in immediate dialysis. Many patients require an arteriovenous (AV) fistula or graft for long-term treatment, whereas I had a central catheter placed for immediate hemodialysis. The body aches, edema, headaches, exhaustion, and nausea, hand-in-hand with an inability to urinate, made it very clear my kidneys were in trouble.
Getting set up for treatment
One of my least favorite parts of dialysis was being weighed before and after each session. Who wants to be weighed twice a day, three days a week? A basic physical also accompanies every visit. I had a PICC line (peripherally inserted central catheter) placed. The best thing about a PICC line is blood draws can be done without poking you; the worst is the constant ache and potential for infection (which I got), bruising (got that too), and the long catheter kinking and needing replacement (mine did) when it becomes clear no amount of finessing will get blood out or fluid in.
I was quickly overwhelmed by an all-over, flu-like sensation and cramps. Speak up; don’t try to be the strong, silent type. Your doctor can adjust your dialysis prescription to alleviate the worst of your side effects. Nothing is perfect; after all, your blood is being removed from your body and filtered through a machine. But there’s no reason to suffer in silence when changes help.
Mood swings were one of my biggest problems. There were days I didn’t want to be spoken to, touched, or even looked at. Overwhelming exhaustion is another common side effect. You may be tempted to drive yourself, but they aren’t going to allow you to leave the hospital until you are well enough. You will need help more often than not. Headaches and migraines are also common. During dialysis, headaches and migraines became a regular part of my life.
Ask someone to drive you. Have a significant other or best friend (lucky you if those are one and the same) tag along. You need someone who understands your personality so you don’t have to spell everything out. Make sure they’re educated in what dialysis is and what to expect so there are few surprises, and be positive they can handle you at your worst. There could be vomiting and crying, or you may fall asleep the instant you collapse into the passenger’s seat.
Interaction with caretakers
Your nurse is an important part of Team Get Well (insert name here). If they’re cranky, rough, or lacking in humanity, ask for someone else. You are your own best advocate. One nurse couldn’t hit a vein to save her life (or, obviously, mine). She tried repeatedly, blowing every vein she touched. I tried to grin and bear it, but after the third visit of torture at the hands of Attila the Phlebotomist, I spoke up. The nurse who took her place was fantastic. Even though your veins may be so worn out they’re leakier than a sieve, there is no excuse for rough treatment. Your nurse should be compassionate.
I knitted my much-loved nurses hats and scarves. As someone also in the (veterinary) medical profession, I understand long hours, cranky patients, and impossible-to-hit veins. You are not required to become Pollyanna. Kidney failure, dialysis, and transplants are incredibly difficult. We’re all human. We have good and bad days, and when we have a serious illness, the bad tends to outweigh the good. All we can do is our best, and if our best means wearing a bedpan as a helmet on some days and using the same bedpan as a weapon on others, so be it. Not that I’ve ever thrown objects, yelled at those I love, or cried hysterically while in the hospital — after all, we’re all superhuman! We should be perfect and never suffer even the slightest breakdown. Wrong. Give yourself a break. Apologize later (you’ll want to) and let your loved ones and the medical staff know you appreciate them.
If you can schedule your thrice-weekly treatments for the afternoon or evening shift, it will allow you to go straight to bed without feeling like you should try to stay up because it’s daytime. Trying to force yourself to stay awake is a bad idea. Follow your prescribed diet; food is incredibly important. Your diet affects how you feel and heal.
You will get through dialysis. A.A. Milne, through Christopher Robin, says it best: “You’re braver than you believe, stronger than you seem, and smarter than you think.”