Hello all you happy people! My name is Frank Provo, and I am a Certified Public Accountant working in the insurance industry. I consider myself lucky to have an employer that is flexible regarding all of the appointments related to my End Stage Renal Disease (also known as Stage 5 Chronic Kidney Disease). I’m also a Type 2 Diabetic, which helped get me into the ranks of my fellow CKD warriors. When my illness isn’t making me feel sick, tired, or both, I enjoy spending time with my friends, going on road trips, and learning everything there is to know about Thailand.
5 Invisible Symptoms
- Anemia. The kidneys produce the erythropoietin (EPO) that tells the bones to produce red blood cells. In the later stages of Chronic Kidney Disease (CKD), the kidneys produce much less EPO and, in turn, the body has fewer red blood cells with which to transport energy, oxygen, and antibodies.
- Chronic Fatigue, related to the anemia above, and also thanks to various vitamin deficiencies caused by the type of dialysis I do. Protein supplements, vitamin supplements, and iron infusions help, but some days I can barely get out of bed, feel generally nauseous, or I’ll become dizzy after a simple walk to the mailbox.
- Lowered ability to fend off illness, also related to the anemia above. Antigens that fend off future colds, flus, and our friend COVID-19 reside in the red blood cells. Fewer red blood cells mean I get sick more often than a healthy individual. For example, I had significant COVID-19 three times in 2023, despite multiple vaccines and prior exposures.
- I am cold most of the time. The build up of wastes in the blood, combined with the aforementioned anemia, makes it difficult for my body to regulate temperature. Some CKD folks also experience intense itching along with poor temperature regulation, so I consider myself blessed in that regard.
- Reduced urine output. I can last through the whole movie or sporting event, no problem, but the downside is a build up of waste products in my blood, painful swelling in my legs, and fluid retention just about everywhere else. My doctor told me if my urine output had gone to zero and I hadn’t started dialysis, that the fluid would eventually have filled my lungs. Scary stuff!
4 Things That Help Me Manage Pain
- Gabapentin. I developed neuropathic foot pain as a result of Diabetes, which has been exacerbated by the kidney disease. A small dose of gabapentin nightly usually quiets the pain or takes the edge off.
- THC gummies. Just one or two, I think about 10-20mg, helps when the Gabapentin doesn’t.
- Movement. I am not the best with exercise, especially given the chronic fatigue, but getting out for some kind of walk or just doing something, often reduces the swelling in my legs and makes the nerves in my feet feel less angry.
- Peritoneal dialysis. I’ll get into this more below, but home dialysis reduces fluid retention and
has helped stave off some of the more significant symptoms of CKD.
3 Ways My Life Has Changed
- Diabetes diminished my eyesight, gave me neuropathic foot pain, and led to the early onset of Chronic Kidney Disease. Meanwhile, kidney disease itself has made my day-to-day unpredictable. Will I have the energy to get to work on time or visit friends? Maybe I’m feeling too swollen or sickly to do anything even if I can leave the house. When I do feel good, I have to juggle biweekly clinic visits, monthly blood draws, and infusion appointments. I cancel, avoid, and reschedule things quite often these days.
- I am no longer a “night owl.” Peritoneal dialysis is a miraculous treatment that injects and removes dextrose solution from the abdomen, which in turn draws out fluid and waste products as well. Unfortunately, each exchange takes approximately 2.5 hours, which means I am tethered to a machine from roughly 10pm at night until six in the morning, assuming the machine doesn’t alarm and wake me up. Once I’m awake, I tear down and shut down the machine, as well as clean and rebandage my abdominal catheter exit site. The whole process of getting ready adds another hour or more to my morning routine, so staying up late is rarely an option anymore.
- Changed perspective. I used to be full-tilt into video games, comic books, movies, and all of the things you’d expect a nerd to be into, often to the exclusion of others. Think “Sheldon Cooper.” Now, I’m usually too tired or apathetic to lean into my hobbies. However, I appreciate calm moments and social time much more now. A half-hour cuddling my cat or a lengthy conversation-over-coffee with a friend is just what I need these days. I’m also far less in my head than I used to be. When I interact with people now, I try to listen a little better and give a little more grace than I would have before.
2 People Who Inspire Me
- Stephen King. Twenty-five years ago, he was hit by a van and almost died. In the years since, he has written dozens more books and continues to help others to improve their writing. He’s also an activist for human rights causes. His accident could have made him bitter, but instead it made him more resolute toward the things that are important to him.
- Mark Briscoe. A professional wrestler that formed a tag team with his brother Jay, performing together for nearly 20 years before Jay was killed in a car accident in January of 2023. Mark still wrestles and often calls out to his brother before performing his finishing move, the “Jay Driller.” I don’t understand how Mark isn’t consumed by grief every time he enters the ring. Yet, there he is: smiling for the camera, audibly asking his brother for support, and providing an example of how to continue on through tragedy.
1 Thing You Want People to Know
Chronic Kidney Disease isn’t solely caused by Diabetes, but Diabetes is one of the leading causes. If your doctor says you’re prediabetic, diabetic, or are showing signs of decreased kidney function, please start the management process NOW. That goes for any serious diagnosis. The human tendency is to put aside medical challenges, but the sooner you act to give the body the care it needs, the better off you’ll be in the long run.
I wish I had lowered my blood pressure sooner. I wish I had acknowledged the symptoms of diabetes before nerve and blood vessel damage set in. I wish I had adopted healthier eating in my 20’s. At multiple steps in my life, I put aside what my body and doctors were telling me, and now I have a tube in my abdomen*, often feel like death warmed over, and am awaiting a kidney transplant that will bring a lifetime of immunosuppressing drugs.
That said, I don’t want to leave off on a stern note. I genuinely do try to enjoy the time when I’m not bound to the machine or running between appointments. I love life, my friends, and my cat… and I always have optimism. When I feel physically or mentally awful, I trust that there will be a good day coming soon, or at least a good block of hours. I have the same optimism for those reading this. Some of your invisible burdens are downright awful, but I hope that, whether through medical intervention or sheer force of will, you get to experience good days too.
I don’t actually feel the tube in my abdomen and rarely notice the dialysis fluid inside me at night, so
it’s not as horrible as it sounds.