Three days after we had just moved into our newly purchased home, our seemingly normal life was about to be rattled by this unforgiving disease. We were so busy unpacking our things when all of a sudden, I felt funny, and a nagging pain in my head became so excruciating that I started vomiting endlessly. Everything tasted like chemicals; something that a hairdresser uses when perming someone’s hair. My blood pressure went through the roof and my cuff burst open because it can no longer read my pressure; the last read was 255 over 200.
My husband finally took me to the emergency at Providence Hospital and the nurses took my blood pressure, took blood samples and took urine samples as well. A few hours of waiting, my nephrologist came to break the news that my kidneys had completely failed, and the next step was dialysis. I never knew what that word meant until the first day that I sat on that chair.
My mind and body were in complete denial that I could possibly die of complications. I shut all those horrible notions in my head and continued life as if it wasn’t there. I continued life at work and at home while waiting for my first day of treatment. I had lost a tremendous amount of water weight and I dropped from 150 lbs down to 118 lbs. That was one of the few silver linings during my darkest hours. My last good memory before I descended into the dialysis abyss was attending a pre-release party of the last Harry Potter series. I held on to that memory and I continued reading books throughout my treatments.
On my first few days of Hemodialysis treatments, my body was in complete shock and I was always nauseated and light-headed. I brought this to my nephrologist’s attention during his nightly visits to the clinic. Dr. Hulman was an amazing Nephrologist. He listened to me and paid attention to my complaints and trepidations seriously. I documented how my body felt before and after the treatment. I asked him if it was normal to feel all these things and if there was anything else we could do to improve how I felt over the course of the treatment. I remembered looking at my bloodshot eyes after every treatment. Most of the time, my body felt like a very heavy log that I could hardly take a step.
After reevaluating my condition, he changed the filter one size smaller and the nurse was ordered to cut the heparin from 10 cc down to 5 cc on my regular day and no maintenance on the machine at all. During my menstrual period, the heparin was reduced down to 2 cc and no maintenance on the machine. During my first month of treatment, I was not told by anyone that a dose of Heparin during menstrual period could really be catastrophic. After the first mishap, I made sure that the nurse knew when I was on my period.
The changes to my treatment made a big difference right away. It was not perfect, but I no longer have bloodshot eyes and the feeling of heaviness after the treatment. The duration of my treatment was reduced to 2 and a half hours instead of 4. Not everyone was happy with how I managed to get my doctor to approve my newly redesigned treatment. Some nurses disagreed with my new treatment and they muttered under their breath that they wouldn’t be responsible if my blood clots the machine due to insufficient doses of heparin. Thankfully, each treatment went well without any malfunctioning equipment. I stayed awake each treatment because I was afraid that someone might put an extra dose of Heparin in the line while I was sleeping.
Two years passed by and I learned to live with my disability. I became resilient and have triumphed over my weekly battle with a great amount of fortitude.
Two years later I received the gift of life and vowed to never stop helping people during their darkest hours of their lives. I have dedicated myself to become a care coordinator in the hopes of being able to advocate for the helpless patients in Alaska. Once in a while, the thought of “rejection” creeps in my head. But, that does not deter me from doing my mission to enrich the lives of others even for a short period of time.
Love life!
Thelma Desjarlais
Care Coordinator/ Patient Advocate
CEO/Seven B Sisters Care Coordination
Kidney Trails 