How does it feel to be on dialysis? Will it hurt? These are two common questions I often hear from people new to kidney disease. First, let me advise you that not all dialysis experiences are the same. Your particular experience will depend, in large part, on you! Read on as I explain my experience with hemodialysis in the hope that someone can benefit from knowing what to expect if they are heading toward dialysis.
First, the needles, yes they hurt!! These are not normal needles either. Much bigger than your standard IV needle, which is 18-20 gage. Dialysis treatments process a large amount of blood, so the size of the needle matters when it comes to treatment time, how much blood can be processed per treatment, and your clearances (How well your blood is getting clean). Dialysis needles range in sizes between 14-17 gage. Unfortunately, when it comes to needle size, the smaller the gage, the bigger the needle. Have I scared you yet? Fortunately, there are a couple of things that will help ease the pain. Most doctors are willing to prescribe a numbing cream that you will have to wear over your access site for at least an hour so. This helps some, but in my experience it really was not very effective. Also, you may be a little numb in your access site from the surgery, so that may ease some of the pain. In honesty most patients just grin and bare it. If you learn how to cannulate (stick) yourself, the needles hurt much less. Over time you will get acclimated to the needles.
Moving on…. Your access site. Dialysis machines require access to a large about of blood in the body. This is artificially made by a surgeon. There are three major types of dialysis accesses: CVC (Chest Catheter), graft (artificial tube), or a fistula (The surgeon will sew a vein and a artery together). There won’t be any need for needles with a CVC, but it is a line that goes directly to your heart, and has a high risk of infection. Grafts can be inserted and used right away, but are prone to clotting. Fistulas are the preferred access type, but also takes the longest to use because they have to mature and may even require another surgery. In my experience, the beginning years of dialysis were challenging mostly because I had a hard time getting a stable access to work. The first thing you learn as a dialysis patient is that your access is your life line! No access, no treatment. I went through all of the access types in my first two years of dialysis! The numerous surgeries and the recovery time, is a major hurdle in dialysis. I ended up getting another surgeon before I finally got a fistula working long term. My current fistula has been working now for 9 years!!
Now, the treatment itself. First, I will say that in the beginning treatments were rough. I wasn’t in “pain”, but I was extremely tired and had the feeling of being generally unwell (sick). It was not fun for me the first couple of years. Along with all of the access surgeries, and getting acclimated to the treatments, I felt like crap most of the time. Headaches, extreme fatigue, stomach issues, muscle cramping, dramatic swings in blood pressure, are just some of the things I experienced. What I wish I would have known in the beginning is that I didn’t have to feel sick on dialysis, in fact I shouldn’t! The most discomfort you should feel should only be from sitting in one spot for so long. Your body is always communicating with you, if you pay attention. One of the major side effects of dialysis is low blood pressure. Having a blood pressure suddenly drop is an indescribable feeling. I have often wondered if that is what is feels like to die. I want to stress that sudden blood pressure drops are a medical emergency! Generally, your body will give you clues before you get to that point. Here are some symptoms I have experienced before my blood pressure crashes (In no particular order):
- Headache
- nausea
- sweating
- fast heartbeat
- muscle twitching/cramping
- blurry vision
Everyone is different, but once I learned what my signs were that I had enough. I was able to respond or get my nurse to respond by adjusting my treatment for that session. A big mistake I see a lot of new patients make is being silent when they are experiencing symptoms. They may feel that they are supposed to feel sick and try to tolerate it, but in truth, feeling sick is an indication that your treatment needs to be adjusted. Always let your nurse or your nephrologist know how you are feeling during treatment. Your treatment prescription can always be tweaked to fit your body.
Blood pressure drops can happen for a variety of reasons, but usually it is because there is a drastic change in the amount of fluid in the body in a short period of time. Sticking to your fluid restriction will be paramount! The more you drink, the more fluid will need to be removed during treatment, and the higher the risk for a blood pressure drop!
Takeways:
Unless you are going to experience a blood pressure drop, dialysis should not “hurt”, you may feel tired after but once you rest, maybe have a good meal, you should be fine.
The needles hurt, but they are a momentary discomfort.
You may have many access surgeries.
Hopefully, you found this helpful. If you have any questions, you can send a message to kdunfiltered@gmail.com or join the Kidney Disease Unfiltered Facebook group where we have a great community of folks willing to answer your questions.