Life of Quality?
Hey there! So some of you may be wondering what my quality of life is like as a dialysis patient. I am going to give a little overview of how close I can come to normal living. What do you consider a normal life? My definition of normal might be skewed so I'm hoping that it comes close to that of healthier people. Surprisingly, I have many things that healthy people have. One of those things is a job. I recently got a job as a photographer with a pretty cool photography company. It may sound easy but it can actually be a lot of work. Dialysis has occasionally interfered with my schedule during busy weeks. We do a lot of school photography and during graduation season I occasionally had to end dialysis early to make it to a morning event on time. Obviously this is not ideal but it is the decision that I made. The earliest I had to get up was around 4:30am. I would have informed the scheduling coordinator that this was happening but I had already confirmed all the events on my schedule so I felt responsible for the times that I had agreed to. It was probably dumb of me to prioritize work over my health but I don't believe that it has greatly impacted me in the long run. I still feel great. I was originally a temp worker with the company but I recently took on a year long position which so far has been a fun learning experience. I'm quickly transitioning back into acting like an adult. I was in a forum recently where someone mentioned that once their kidneys fail they have no interest in living their life on dialysis. I wanted to be helpful but I didn't do a great job so that is why I'm writing this post. This week I am working Monday through Friday. I'm sure there will be many more weeks like this. As you can see, you can basically work a full-time job on dialysis. There are many people whose kidneys failed after they've already established their careers. I've heard of a doctor going to the dialysis clinic super early in the morning to complete their dialysis before work, which means that you can even work a time consuming thing like hemodialysis into your schedule! I mean, if a doctor can do it... Your life is not over just because you have to do dialysis! We can only hope that it will be temporary, but if you do end up on dialysis for a long time you can still have a great quality of life! Another thing I manage to have that "regular" people have is a healthy social life! I leave my house all the time (but I also enjoy hanging out at home too). I see my friends fairly regularly. I managed to go camping in a tent this summer (thank you manual PD!) and I frequently go fishing with my father. I drive everywhere all the time. I try my best not to limit myself. I live in an apartment in the city and I am fairly independent. I set up my dialysis on my own every night. I won't say that everything is easy, because it isn't. I have my struggles. I broke my foot recently (thank you PD machine) and had to lumber around for a good month and a half before I could walk almost normally again. I have to see a lot of doctors which can be inconvenient and annoying. I've had a couple of hospital stays which are also no fun. Though that sounds like a lot, I didn't lose that many days to the hospital and I'll often try to put more than one appointment on one day so that I don't lose too many days. I'll tell my hospital stories another day. Another problem I personally have is a lack of motivation. I can't say for sure whether it is a dialysis problem or just a regular old life problem. I'm sure that dialysis affects my ability to be motivated because it is quite an intense experience. It can be hard to stay afloat at times but it can be better if you take the time to figure out what helps you feel good. For the most part I feel great and I feel mostly healthy. Also, if you're wondering, people cannot tell I'm a dialysis patient unless I tell them. My catheter is usually well-hidden (not that I care too much if people see it) and I still manage to look good and be energetic. I'm still enjoying my youth (almost 26!) to the extent that I can. I've been on dialysis for 2.5 years and a lot has happened. I've done many amazing and fun things. You can still travel while on dialysis, you just have to arrange all of the details beforehand. Dialysis sucks but it's not the end of the world. I don't think dialysis is a good enough reason for anyone to give up on their life. People have been working on new technology to improve the lives of dialysis patients so it may just be worth the wait. I have occasionally felt hopeless but there are still some things that keep me going, like the idea that future medical innovations will help prolong my good health. If you've been following anything I've written thus far, thank you for reading! I hope you all are learning some new things about living life with a chronic illness! Obviously there are so many different illnesses and my experience is one of so so many. And remember to be kind to your fellow humans because you really have no idea what kind of things they are going through.