Bernie’s Story
After Bernie was diagnosed with Bladder Cancer. He went the normal route of interventions. Six rounds of BCG (Bacillus Calmette and Guérin, a weakened strain of bovine tuberculosis) was inserted into his bladder to stimulate a response, it did nothing. Then another six rounds and again no response. The disease had now become muscle invasive, with evidence of metastases. Chemotherapy was next treatment. Six rounds of Cisplatin and Gemcitabine had some tumor shrinkage, but not enough response. He then tried a high level THC intervention. Three months went by, but he says he doesn’t remember much of that. The two year saga to this point, also included several bladder resections (surgery to cut-out tumor growth), and too many trips to the ER for uncontrolled bleeding from the resections, and clotted urinary catheters. Through all of this, his attitude and outlook always remained positive.
Bernie read about a Clinical Trial at NIH for people that were unresponsive to similar treatments and drove from Baltimore, MD down to NIH to see if he could qualify. After drawing about 12 vials of blood, the doctors told him he was in total kidney failure. It seemed that tumors had blocked off the ureter openings into the bladder. His creatinine was 8.8, (normal is up to 1.3) by the time they took him to emergency surgery it was 9.2.
The doctors performed emergency Bilateral Percutaneous Nephrostomy, which is inserting tubes directly into both kidneys through the back, to allow direct draining. The next day they showed him the ends of the tubes coming from around his back, and how they drained into small bags hanging from the bed. A nurse coordinator met with him to arrange a “supplies” provider that would take his insurance. The attending nurses were wonderful explaining how the set up works, “in a hospital environment”.
After watching the nurses come in frequently to empty the small Nephrostomy bags. Bernie immediately had his own input. The nurses were willing to listen to what he had to say. They brought him large Urinary bags, and found him the adapters needed to merge the two different style connectors. After a few days of recovery, he was given a few sheets of paper with instructions on “How to take care of your Nephrostomy”. These instructions basically explained how to “flush” the tubes when necessary, and how to simply hang the bags on one’s body. He was then discharged and sent home.
Bernie is an engineer at heart, a problem solver with a gift of figuring out how to do whatever needs to be done. He immediately started scouring the internet for information on everything from how to change the dressings, which he couldn’t see, to how to wear the bags during the day while out and about, and how to sleep with them comfortably at night. As Bernie likes to say, “There is more information online about mustache wax than there is about how to live with nephrostomy”. He spent the next two years experimenting with different products, styles of wear, and systems for “real life” comfortable living.
He had to fight with his insurance company and medical suppliers to have access to supplies he needed. In the end he succeeded. He had the supplies, and a system, and a routine that was convenient. Most importantly he had a comfortable way of doing life. Whether he was working from home in his bathrobe, unloading lumber on a job site, laying under his truck doing a repair, or sleeping 8 hours without having to get up to empty the small Nephrostomy bags.
As Bernie says it:
“I’ve never been a support group kinda guy. Maybe I could have learned some of this stuff there? But going through the daily ins and outs of my life, what I needed, each day, each night, in each environment, taught me the simplest and easiest ways to live, and I mean live comfortably. Heck, my tubes don’t even get stuck behind my legs when I drive anymore. Who knew? This information needs to be available to each person, from the beginning.”
His systems are adaptable to any home or office, male or female. We are glad he brought his story to our cause. NephrostomyLiving.org (opens in new tab) is what grew out of the abundance of learning Bernie had acquired. He wanted, “the next person to have this information available when they first get sent home. They have enough to do emotionally, figuring out their new life.”
Thank you, Bernie.
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