And Some Days I’m Grateful

By Karen Pellicano

I am not the kind of person who regularly goes to a doctor. I’ve been told by doctors that they know the problem is worse than I’m reporting, because the fact that I’m willing to go to the office at all, that tells them that something went terribly wrong.

When I started going to the doctor with crippling lower back pain, not once, but 6 times in two months, it should have sent up red flags. But at the time, my doctor’s office was a training center for new graduates who hadn’t picked a specialty yet. Doctors stayed for 6 months to a year, and then continued their education. One said I had IBS, because of my age and the fact that I’m white. One suspected a slipped disc. One decided that I was merely ‘hysterical’ and should take tranquilizers.

And that is how, on a beautiful spring Saturday morning, I ended up howling like a wild animal and waiting for my husband to return from work to take me to the hospital. I’m still not sure why I didn’t call 911 - at the time, it honestly hadn’t occurred to me. When my beloved pulled in at 1:00, I was waiting with my purse in my hand. The road between his work and our house was out of cell range, so he didn’t have any idea that something was wrong. Our daughter was in the house cleaning on overdrive to combat the stress, and I was attempting to comfort her, telling her that I was fine, then laying on the floor in a fetal position and screaming. She didn’t believe me.

Because I had a couple of hours of agony and no self-control, I turned to online self-diagnosis and determined that it was appendicitis. Armed with this knowledge and a bag to hold the vomit that was erupting from my body, we started the 40-minute drive to the hospital. By the time we arrived, I could barely stand up. I went to the front desk and announced that I had appendicitis. Then I collapsed. My husband came from parking the car and I was already in the treatment room.

The nurse told me it was a kidney stone and I told her that I knew she was wrong, because I googled the symptoms and it was clearly appendicitis. Then they gave me morphine and the world started to make sense again. I was only able to have enough morphine to last for 15 minutes at a time, so during those 15 minute intervals my husband and I made plans for next steps. By the end of the 15 minutes, I was barely lucid, begging for relief. And then the wonderful warm sensation of morphine would clear my mind for another 15 minutes of productive thought.

A CT scan showed that the left kidney was completely impacted with kidney stones and the right kidney had two stones that were 50mm and 75mm - a ‘normal’ stone is 2-5mm, and a very large stone is anything over 7mm. I was rushed into emergency surgery for the first of what would be six surgeries to remove stones and try to salvage the left kidney.

For the next three months, I was in surgery every other Monday, meeting with the surgeon on Wednesdays to discuss the viability of saving the left kidney and planning the next surgery or watching Gilmore Girls. I still worked every day, even though I had stents in both kidneys for the duration of the three months and by the end of the day Loreli’s problems seemed more manageable than mine.

Three months later, the left kidney is somewhat intact, functioning at 10%, the right kidney is mostly intact, functioning at 85%, and it’s over.

Except that it’s not.

My condition, it was explained to me, is very unusual and I will likely suffer from kidney stones for the rest of my life. The doctors would ‘keep an eye on it’ in regular tests. I would take a medicine which caused violent stomach revolts. At this point I had been a T2 Diabetic for a few years, and though the kidney complications had nothing to do with the diabetes, the diabetes very much impacted the kidney stones. So I was armed with the food restrictions of diabetes, and the food restrictions of my particular kidney disorder, nauseating medicine, regular testing and a survey to gauge my satisfaction with my care.

The food restrictions for each illness contradicted each other and I still struggle to figure out what to eat. I’ve had many more kidney stones and the diabetes has progressed. The kidney disorder turned into a life-threatening infection when the ICU was full of COVID patients. I learned that I make uric acid and calcium kidney stones, which came with further food restrictions. Four times a year I go for a battery of uncomfortable tests and I have permanent damage to all parts of my renal system.

I have the ability to see the future now. My surgeon told me that we know what’s going to kill me, we just aren’t sure when. I’ve had 11 kidney surgeries, countless ‘procedures’, regular stents in both kidneys for weeks at a time, blood tests and quarterly 24-hour urine collections.

Now that I have a sense of how my body works, all the fear of the past 7 years is threatening my mental health. Watching my body transform from strong and capable, to withered and tired has brought on a number of interesting changes. When I’m tired now, I sit down. I didn’t before. When I’m sad, I cry. When I’m hungry… Well, honestly, I still have a lot of issues around food. And when I used to tell friends ‘it’s not worth your health’ as a solution to their life problems - now I really embrace that reality. For me, it all fell apart on a spring Saturday morning and I’m still reeling from the issues and maintenance that come with that.

At my most recent series of appointments, every test came back in a safe range. For the first time in 10 years, I am tentatively healthy. Some days I focus on the word healthy, others I focus on tentatively. Some days I thank my body for what it’s come through, others I cry for what is still ahead. I cry for the fact that I will never be healthy without the caveat that it can all be taken away in a minute.

And some days, I’m grateful. I’ve come to realize that everyone should spend a few days or weeks in a body that doesn’t work as expected. You learn a lot about yourself and the kind of person you want to be.

I was very active before I got sick. I loved hiking and extreme mountain biking. There was no challenge I would rise to and I was proud of that. I hike slower now. I bike on the roads or smooth trails. I’m conscious of the fact that my immune system is compromised. I take medicine and wear a mask in a crowded place. But I also read more. Write more. Think more. Rest more. I’m a more thoughtful and compassionate person. I know that tomorrow could start the road to dialysis or diabetic complications and I take it more seriously. At 54, I’m going back to school to get my Public Health Degree because I want to help people learn to navigate the system that educated me the hard way. I recognize the toll that stress takes and I meditate throughout my day. It’s gone from being a 20-minute chore to check off a list, to a regular, normal part of my life. In a stressful meeting, I will excuse myself to go to the bathroom and take a minute to check in with how I feel. I have a continuous glucose monitor that embarrassed me at first, but now it’s part of my routine. I don’t care who knows and I’m happy to explain it to people with questions. I know that even if I don’t know how I feel, the beeper in my pocket knows.

Being sick and accepting that I’ll never be perfectly healthy again has given me the freedom to drop the shame of imperfection and really start to embrace the flawed people around me. I said my goodbyes and made my peace and then bounced back. Then I did it all again, and bounced back again. Doing end-of-life activities once is humbling, but doing it three times is enlightening. You start to understand what you’re saying goodbye to, what you need to hold on to until the very end, and what you have to let go.

Karen lives in New Hampshire with her husband and son. She enjoys all of the outdoor joys of New Hampshire living and is slowing down to appreciate it all more than she used to.