“Eat, drink, and be merry, for tomorrow we dialyze”
I had surgery to implant a fistula in my left arm December 4, 2006. A fistula is a surgical connection made between an artery and a vein. As the blood pumps through the fistula, over time, it gets larger to the point it can be used as an access point for Hemodialysis.
I was scheduled to start hemodialysis March 7, 2007 in the hospital, but there were complications and my fistula could not be used (my fistula wasn’t large enough yet. The gruesome story about how that discovery was made involving the dialysis needles and blood spurting from my arm, I’ll tell another day). The next day, a catheter was placed in my neck to be used for hemodialysis until my fistula was ready. The catheter went from my jugular down to my heart and looked like this:
Everything was working fine with my catheter until May 3, 2007. One of the main rules of having the catheter was not to get it wet. Like Gremlins. But May 3, 2007 was the day of my Great-Grandmother’s funeral. It rained that day and keeping the catheter dry was the last thing on my mind. The catheter got wet and became infected and I was admitted to the hospital on May 4, 2007.
I graduated to hemodialysis. the end of May 2007 and was on hemo for 15 months. I had to go to the clinic 3 times a week, four hours at a time. Basically, I sat in the chair while 2 needles were inserted into my fistula. It looked something like this:
The dialysis machine pumped blood out of my body (about a cup at a time), cleaned the blood, then pumped it back into me. It looked something like this:
This process took about 4 hours. Afterwards I was bandaged up and sent on my way. I was on fluid and food restrictions galore. I could only have approx. 24-32 ounces of fluids a day and I was on a low-sodium, low-phosphorus, low-magnesium, low-potassium, low-taste diet.
I quickly discovered everything I liked to eat was high in all of those things. I kept to the diet as best as I could…well…I tried to…no, that’s not true either. Let me put it this way, my heart was in the right place regardless of what I ate.
I had surgery to start Peritoneal Dialysis on August 14, 2008. The benefit of being on peritoneal dialysis was that I could do it at home and on my own schedule.
I had to dialyze 4 times a day, every 4 to 6 hours. I would fill my peritoneal cavity with 3,000ml of dialysis solution, let it dwell for 4-6 hours, then drain out the the fluid (with toxins and impurities) and refill. Every. Single. Day. The process took about 30 minutes. So I had to arrange my day every day to make sure I dialyzed. It looked something like this:
Overall, dialysis was just that, an adventure. In and out of hospitals, excruciating muscle cramps in my legs and hands, that washed out completely drained feeling after every hemodialysis session, the fatigue, etc.
Several times I would leave the door to my apartment unlocked. I would sleep with my phone under my pillow because I felt so bad during the night that if I had to call an ambulance they would be able to get to me easier.
I learned a lot about myself, about hope, about trusting God, and staying positive. Some days were better than others, some days my attitude just sucked and I hid in my apartment I felt so bad physically.
However, FSGS is one of the best things that has ever happened to me. It helped shape me into who I am today. It is a part of my story. There are things I learned, esp. about myself, I would not have learned otherwise. I would not be the person I am mentally, emotionally, and spiritually without FSGS. I love what Michael J. Fox said:
“I am okay. My body is not okay, but I am okay. I am not my body.”
And now, for the end of the trilogy: Transplant!