Blog by Jonathan E. Traylor, Sr.
Dialysis…What can I say? It’s definitely not an easy form of treatment and often the style of dialysis is forced or chose for you, some patients don’t even know or don’t get educated or get informed about choices, rightfully so in my case as an emergency kidney failure patient I didn’t really have a choice at first it was central line hemodialysis or death…which one would you choose? Me too! I choose to live, but honestly, I didn’t make the choice the doctors made the lifesaving decision because the only way to filter my blood was in this process called dialysis! The question is did I stay on in center Hemodialysis or did I switch to home dialysis? Keep reading to find out!
• In medicine, dialysis is the process of removing excess water, solutes, and toxins from the blood in people whose kidneys can no longer perform these functions naturally. This is referred to as renal replacement therapy. The first successful dialysis was performed in 1943. Wikipedia
After my near-death experience with kidney failure, I had been through a life altering traumatic event and that included a new treatment introduced to me as Dialysis, as I explained above it was not by choice but a must to survive. I basically woke up in the ICU and had unknowingly been on dialysis for 3 days and had 30lbs of fluid & toxins removed, this new treatment saved me but I had no idea what it entailed and I was in for a ride that I’ll not soon forget if ever.
I began a dialysis treatment regimen in the hospital, all I know is the whole process confused me at first, the red cap line goes here, blue cap there, nurses scurrying around, machines beeping loudly, phones ringing, I remember the distinct smell and I really can remember coming off the machine and how I felt the first time, I felt terrible, nauseated, drained physically and mentally I was confused and in a state of shock. I had a crash course of my new world of living on dialysis. I kept thinking this is a dream but unfortunately, this was real and like it or not I had to learn and adapt quickly to dialysis, if I wanted to survive!
I had a 2 week stay in the hospital and had been educated on dialysis, the side effects, the renal diet and much more. I remember the dietitian coming in saying, “You must give up this and that” some foods that was listed were some of my favorites but again I knew I had to listen, learn and apply to my life, this was crucial for survival. This was a lot for me because prior to this experience I had no knowledge of kidney disease, dialysis, much less a diet. I must admit my head was spinning from all the new info. I begin to realize that life as I knew it was forever changed and again, I had to make a choice, adapt or continue to be sick!
I continued with hemodialysis in center at a local center, this experience could be a blog all by itself. We were immediately greeted with being told that I needed to get rid of my permcath and to get scheduled for a fistula as soon as possible for fear of infection. I then had to deal with getting to know a whole new team of people, nurses, technicians and my Nephrologist and then there was the new schedule! I was scheduled to dialyze every Tuesday, Thursday, and Saturday and I had to be there at 10:00 am sharp, no excuses they would not put up with patients being late, it put them behind like a domino effect. I slowly felt like I was losing control of my life entirely, living on a machine, new diet, new team and new schedule! I quickly thought was this the way things were going to be for me now?
In-center dialysis became routine and I was getting used to it and started to get to know the staff, by then I had also changed my poor diet habits and actually started feeling better. I had lost a bunch of weight and extra fluid and went from a 3xxxl to a XL quickly, my clothes were just draping on me, that’s literally how much extra fluid that I had been carrying, yet again this unfamiliar treatment who had come into my life so abruptly and almost rudely became my saving grace. I think the hardest thing for me was getting used to the schedule and the fluid restriction, 32 ounces a day was my limit and I struggled at times during the long weekends, I started buying 8-ounce bottles of water to help with that and it helped me to remember to be mindful of my fluid intake.
As the weeks and months past I eventually had my fistula surgery, they tried to use it a little too early in my opinion and it had not matured enough for the sticking of the needles. I actually experienced infiltration and it was very painful with lots of bruising, it got so bad the vascular surgeon came over to show them where to stick me with his vein mapping machine. I had many ups and downs with my dialysis treatments, I had many terrible treatments with the side effects of dialysis, the chronic fatigue, the napping that took away from my family time, the constant dropping of my blood pressure sometimes dropping dangerously low, this was life now like it or not, still even with all of that I was grateful to be alive!
As I continued with my treatments, my team had been noticing my labs and my body’s response to dialysis and so they began to discuss getting me on the transplant list, finally some good news and hope of some day of getting off of dialysis. I was finally approved and I continued with my treatments. In the back of my mind, I always hated coming in on Saturdays, and I felt trapped in the weekly routine. I was getting depressed and frustrated with the thought of coming in every Saturday for the rest of my life or until I got a kidney donor, I was later told because of my blood type I would have a wait of 6-8 years for an O type kidney. It was heartbreaking to think of having to continue this regimen for that long!
One day I had come in for treatment and a technician had discussed with me the option of Home Hemodialysis, she discussed it was dialysis on my schedule and that I could plan my day around treatments versus being locked into the in center schedule. It quickly sparked my interest and I took the pamphlet home that night and discussed it with my wife and after watching some YouTube videos on the process my wife Melissa agreed to be my caretaker and assist with helping me do home dialysis. We began training about a month later and we picked up on the training very quickly and 3 weeks later we began doing Home Hemodialysis treatments, finally after 10 months I was going to get my weekends back! It was definitely exciting!
The main thing for us as a team was remembering all of our training because there was a bunch of steps to remember! Thankfully, we was sent home with our training booklets and binders to refer to and of course we had a call center we could call in case of issues. Our nurse at the center gave us her phone number as well so we could stay in touch and that was very beneficial. There are many things that you must keep in mind if you want to consider home dialysis. You must be willing to listen and learn and be willing to follow instructions, you must have a sterile environment, it must be clean and clutter free and have an area dedicated to your treatment, you must have the room for all the supplies ( our first delivery was around 74 boxes ), you have to be able to handle critical situations just in case ( such as low blood pressure and emergency return of blood ), it’s always a plus to have a caretaker to assist you, but there are many patients that do not have anyone to assist help them and I applaud them, True Warriors!
In conclusion, even with the ups and downs and mistakes made, I would choose Home Hemodialysis again over in-center simply because it was the best decision for me. In no way am I telling anyone to switch, but just know there are options and there is also PD ( peritoneal dialysis ) I can’t speak on that because I personally didn’t choose it as my form of treatment. Ultimately for me choosing home hemo was a great choice for me because it liberated me from the schedule from the dialysis center, I wanted my Saturdays back and i felt like if I was going to have to do dialysis that I was going to do it on my terms, like Sinatra said ” I did it my Way “. We had lots of issues with doing home dialysis, mistakes were made, defective equipment, supply delivery issues and more, but I would still choose this form of treatment again if needed. I honestly felt better with shorter treatments 5 days a week, I didn’t feel as heavy with fluid and the toxins didn’t have time to build up, my labs were better across the board and I was getting taken off of medications. I felt like I was getting my life back but I needed a kidney or I would have to continue with this regimen, would you believe me if I told you that I only did home hemodialysis for 3 months? Yes, after all the training, and all that I went through, I was blessed to get “the call” …I’ll tell you about that in my next blog!