This is a difficult post to write, but I need to write it down somewhere. Mark, the love of my life, has chronic kidney disease. I wanted to write down our experience with it through the years.
Mark had high blood pressure and had to be on two different medications to keep it under control. When he was first diagnosed, his doctor had him get an ultrasound on his kidneys. They noted that they were smaller than normal, but we weren't told that. In 2019, Mark's doctor stopped accepting our insurance. Mark ran out of medication and went without for a couple of months. He started noticing some symptoms and went to the Instacare on August 29 to see if they could write him a prescription for blood pressure meds. When they measured his blood pressure it was in the neighborhood of 225/156. They told him to go to the emergency room. When we got there they gave him hydralazine to bring his blood pressure down quickly. They took labs and found evidence of kidney damage. His new doctor put him on 4 blood pressure medications when he got out of the hospital.
He was referred to a nephrologist. He met with him and was told his kidney function was about 26% at that time, and that he would eventually need a kidney transplant. He had to get a kidney biopsy to determine what the cause of the kidney disease was. The biopsy was in October of 2019. It showed that he had IgA Nephropathy. It was explained to us that in Mark's body, his IgA, which is part of the immune system, isn't quite formed correctly. This immunoglobulin gets stuck in his kidneys, causing scarring over time. We consulted with a dietitian to learn all the diet needs of Mark's condition. We were told to get labs to monitor his condition. He was told that when his kidney function dropped below 20% he would need to be put on the transplant list.
When the Covid-19 pandemic hit, Mark's numbers had been stable. He took a break from getting labs as we didn't want to risk sending him into the hospital frequently. We took great care to keep him healthy during that time.
In early 2021, Mark began to notice an increase in some symptoms, such as nausea and ammonia breath. We realized he hadn't had labs for awhile. When he did finally do them again, his kidney function was below 20%. I remember it being 18%, but I may be wrong. The next labs, his function was even lower. He was told he had to start dialysis quickly. His nephrologist recommended that he try peritoneal dialysis.
Peritoneal dialysis is when a catheter is placed into the abdomen. A concentrated mixture of sugar, salt, and water is pumped into the abdomen. The fluid pulls excess water along with some of the nitrogenous waste across the peritoneum. After a few hours, the fluid is pumped out of the abdomen to be replaced by more of the dialysate. The whole process is done in the comfort of your own home, while you are sleeping. It is a lot gentler on the body than hemodialysis. Mark was working full time, going to school part time, and had three kids, so this option seemed like the best fit for him.
He was referred to a general surgeon to place the catheter. We chose to ask the surgeon who removed my appendix (and in 2022, my gallbladder) to place his catheter. His catheter surgery happened the week after Memorial Day in 2021. His new dialysis nurses monitored the healing of the catheter site.
During that month of healing, Mark and I both attended training on how to run the dialysis machine at home. We had a nurse visit our apartment and make sure we had the proper plumbing and everything. We had to learn to use sterile technique to make sure he didn't get peritonitis. We got books with troubleshooting guides and phone numbers to call in case we had alarms in the middle of the night we couldn't resolve on our own. We got the machine itself, a cycler. We got our first shipment of dialysate, and other supplies. Those came on large shipping trucks. We had to learn how to order the monthly supplies needed. There was so much information to learn about how to take care of Mark.
Mark's first day of dialysis was June 29, 2021. He had to use almost 15 liters of fluid every night, two 6 liter bags, and one 2.5 liter bag that would fill his abdomen and do slower dialysis throughout the day. His treatment took 9 hours to complete. The machine had a 12 foot tube that connected to him. It also had a 12 foot drainage tube that we taped into the bathtub to drain the used up dialysate.
We worked closely with his dialysis nurses that first little bit as we began his treatment. He had to get labs done frequently to monitor his health. We had to adjust his diet according to his labs. We had to sometimes put heparin into the dialysate to make sure he didn't get fibrous masses in the tubing. He would sometimes get injections of erythropoietin. As time went by, he was able to reduce his blood pressure medication due to the dialysis.
There were all kinds of challenges. The hardest for me to watch was when the machine would do the initial drain and it would sometimes suck on Mark's insides. It was so painful for him and he would lie on the floor in agony waiting for the machine to finish the suction. He was often nauseous because of the fluid taking up room in his abdomen and pushing on his stomach. One of his main symptoms was fatigue from the uremia, and that was also difficult as he needed rest, but had three young children at home.
That first summer, we didn't really do much. Mark wasn't allowed to swim with the catheter, and since he had to be plugged in every night, he was unable to go camping, which is something our family loves to do. The summer of 2022, we bought an RV battery and an inverter to connect it to the cycler. We bought a big tent and tested it out on a campout with Mark's older brother. We were able to go on 5 camping trips that summer because of the battery. It had enough power for two nights. I am so grateful that we were able to still enjoy life a bit during that time.
I'm not sure how to end this post, except to say that there were many miracles that we saw through this time. God had us in His hands and I saw his help many times throughout this trial.
