In April of 2016, life was good for the Singers – Keith, Lorie, and their daughters Kayleigh and Rebecca. In early May of 2016, Lorie lost her job. One week later Keith was in the ICU with a Systolic blood pressure over 220. He was in the hospital for almost two weeks. We learned his kidneys were in really bad shape, but there was still hope for keeping him off dialysis. A month after that our Nephrologist (a doctor specializing in diseases of the kidney) told us that his numbers were getting worse instead of better.
We were told our best option was Peritoneal Dialysis (PD) – a type of kidney dialysis that uses the peritoneal lining of the belly as a natural filter. Waste is removed from the body through a kind of cleaning solution called dialysate, which is washed in and out of the body through a catheter several times a day. This type of dialysis is most often used for people who are a little bit younger and a little healthier at the start of treatment. PD is done at home (or anywhere really) with the hope that the patient can maintain their quality of life.
Within a few weeks, Keith had surgery to insert the catheter and Keith and Lorie were trained on how to care for the catheter site and to perform the dialysis. In August we started to doing the PD at home and prayed for improvement. At the time Keith was on short-term disability, and Lorie hit a major snag with her unemployment. Saying it was a stressful time would be putting it mildly.
Keith didn’t improve. He didn’t react well to the dialysis, he became very dehydrated and weak. That began what has become months of trying to find the right solution and the right schedule to help. In the beginning, Keith did four exchanges a day – around 6:30 AM, 12:30 PM, 5:30: PM and 11:30 PM – of “green” solution. Life revolved around dialysis and doing everything possible to help Keith.
At the same time, Keith’s short-term disability was cut-off because of issues with his doctor not filling out the proper paperwork. Lorie was still fighting for her unemployment. There was no income for most of August and September. It was a very scary time for the whole family. We couldn’t pay our rent, our electricity was turned off, and they threatened to turn off the water.
Thankfully a few local organizations were able to help pay the rent and put money towards the water bill. We signed up for all kinds of public programs to keep the lights on and food on the table. Finally, in late September and early October, the disability forms were completed and the problems with the unemployment were resolved. We were able to come off of the programs we were on and things looked up a little.
But, Keith didn’t bounce back the way the medical staff had hoped. We continued to adjust his solutions (changes from all “green” to all “yellow” and then to half-and-half) and exchange schedule for the next few months. It became very clear that Keith wasn’t going to be going back to work. More paperwork was completed, he was let go from his job and we lost his health insurance. Something we’re still wrestling with today.
Lorie, who has health problems of her own, was exhausted physically and emotionally by the time December rolled around. Keith’s dialysis was changed yet again to help them both – as of December 2016 Keith does one “purple” exchange, one “yellow” exchange, and is “empty” for four hours each day. A much easier schedule for everyone, and solution brought down his glucose numbers and his blood pressure. Finally, we’re gaining ground – we’ve got a long way to go until he’s back on his feet, but he’s beginning to stabilize.
You’d think that meant life was getting better, you’d be wrong. Lorie’s unemployment runs out in February of 2017. We’re back to not knowing how we’re going to pay the bills (forget about the money to secure our oldest daughter’s place at college). We’re trying to be strong and stay positive. Some days are better than ever.
Something told me (Hi! I’m Lorie!) that I needed to share our story. There have got to be other families out there going through PD and all the struggles that go with it. Maybe our story will help those families find their way through the scary shadows of insurance and treatment and programs. Hopefully, we can all help each other.