It sounds like a cliche but it’s the truth: my life will never be the same. All because of a couple of little organs in my back.
I’m departing from my usual modus operandi to do something different. No history article here, and no combating of bad science and the fringe. I’m going to use this article to share some personal information about myself, which I generally don’t do. But in writing this I’m hoping anyone who reads the article can take advantage of my cautionary tale.
It actually started a very long time ago. Sometime around my mid-twenties I was diagnosed with Type 1 diabetes. I am now fifty. I adjusted well to the disease and lived for many years with no problems. I took my insulin, tried to watch my diet, rarely bothered with regular doctor visits, and went my merry way. Are you listening, readers with diabetes? Many people have the disease. And everything in this paragraph describes many folks’ experiences with diabetic.
It started to change in the spring of 2014. I was going blind. I had developed serious hypertension (high blood pressure) and it, together with diabetes, was attacking my eyes. The technical term for this is bilateral diabetic retinopathy, which means the disease was damaging the retinas in both eyes. Well, I rather had to go to the doctor for that. I spent the entire summer and much of the fall going to Northwestern Memorial in Chicago to undergo extensive laser surgery and numerous other treatments. This included three invasive major surgeries to my eyes and even injections in one of my eyes. That wasn’t fun.
Northwestern did an amazing job restoring my vision. It will never again be perfect, but it’s pretty good again. But this article isn’t really about my vision treatments. It was only the first sign, which I should’ve taken more seriously. I had a battery of blood tests for the first surgery and they were concerned about my kidneys. The bloodwork showed they were not performing optimally. My primary physician—yes, I was regularly seeing a doctor now—emphasized that I see a nephrologist, a doctor specializing in kidney care.
So I rushed to the nephrologist, right? A smart person would’ve—but I wasn’t being smart. I skipped it and hoped for the best. My vision continued to improve but thanks to the appalling disaster that is our health-care system in the United States, I eventually lost my health insurance. I could no longer afford regular visits with a doctor.
As it happens, and as I now know, soon after I couldn’t report to the doctor on a regular basis, my blood pressure was creeping back up. I could see this on the little blood-pressure machine I use at home, but a machine doesn’t treat blood pressure. It only alerts you to it. I went on my merry way, again.
The symptoms were starting to show. I was getting more and more tired. I was drifting off to sleep at work, which was something I never did. I was putting on weight and my legs, ankles, and feet would get swollen. I had a serious cough and felt heavy. I have a medical background from training as a paramedic many years ago, so I certainly had an idea what was wrong: kidney disease.
It all came apart last November (2016). One morning upon climbing out of bed to get ready for work—I promptly collapsed like a bag of potatoes to the floor. I could not get back up. I was conscious but not very alert. It’s difficult to describe the experience. I had almost no awareness of the passage of time. I remember thinking that I need to text my boss to let him know I wouldn’t be coming in, and I managed to snag my phone from the edge of my desk, but I couldn’t make my fingers work. Meanwhile, the phone eventually started to ring, and I suspected it was my boss calling to check on me. I couldn’t operate the phone to answer, and was surprised to discover I could barely even talk.
I thought I was having a stroke.
At some point I heard a knock on my door, but I couldn’t answer. A few more knocks, and then I heard the jangling of keys in the lock. I live in an apartment building and the handyman, Mike, came in to check on me. My boss had called the apartment management, so that’s why Mike was at my door.
Mike found me sitting there on the floor. He asked me some questions and I understood everything he said, but I could only nod or give a thumbs-up. I couldn’t talk or move. I could only sit there on the floor, staring at my desk, like some sad version of performance art.
Mike called 911.
Everything that transpired from there resulted in a long and epic journey, as they say. Mike told the paramedics that I’m diabetic, so the first thing they did after putting an oxygen mask on me was test my blood sugar. On a normal adult male without diabetes the blood-glucose level should be roughly between 80 to 100 (going from memory here). My blood sugar was usually around 120, which is high but not terrible for a Type 1 diabetic.
That morning, as I sat slumped on the floor, my blood sugar was 26. To this day I’m amazed I never passed out.
The ambulance rushed me to Weiss Memorial, which is nearby my place in Chicago. There they put me on oxygen with epi. That opened my airways right up. I really liked oxygen with epi! And then they did a full blood panel. One of the things they test for in a diabetic is creatinine, a protein that builds up in your body but that healthy kidneys will flush out. The creatinine level in a healthy male my age is between 0.8 and 1.3 (mg/dL).
There in the ER at Weiss Memorial, my creatinine was over 10.
My kidneys were shot. They still have some function, and almost every doctor and nurse I meet asks if I’m still peeing. I still am, which must show some kidney function, but there may come a time when I will stop peeing altogether.
I had to go on dialysis. I spent eight days in the hospital undergoing batteries of tests and scans, and started dialysis almost immediately. For the short term a surgeon implanted a catheter that stuck out of my neck so they could wheel me down the hall to a little room for dialysis. Soon before I was finally discharged from Weiss Memorial, they moved the catheter to my upper-right chest, just above my nipple. And there it sits to this day.
After getting home I immediately started dialysis in a clinic similar to this one:
There, every Tuesday and Thursday and Saturday, I sat in a chair for four hours so my blood could be circulated through a machine and filtered. That’s what the catheter is for: so I could have my body connected to the machine. I’m not much for selfies, but here’s a closeup of my chest I took while sitting in one of the chairs last December:
Apologies for my pasty-white flesh. You can see the white bandage on my right chest. Underneath that is where the catheter enters my body, into a major blood vessel. From there it goes into my heart. From the white bandage you can see two tubes descending: one tube sends my blood out and the other sends it back in, freshly filtered. A healthy person has two kidneys that do this filtering very well, to scrub out excess fluids and waste products like creatinine. But I’m now one of those folks whose body needs help with this.
Needless to say I now have a nephrologist. I actually met him when I was admitted to the hospital. I like him quite a lot. From the start he thought I would be a good candidate for a different kind of dialysis. When you sit in a chair in a clinic for several hours to have your blood cleansed, the process is called hemodialysis. That’s what I was experiencing since November. You can do this at home, too, but hemodialysis can lead to unpleasant side effects. Numerous times while in the clinic I experienced some of them: especially low blood pressure and epic cramps. And I do mean epic. Largely because of these side effects, if you do hemodialysis at home you need to have someone with you while you’re undergoing treatment. This option wouldn’t work for me because I live alone.
But the other form of home-care is called peritoneal dialysis. I was a good candidate for this. It doesn’t require someone to be with you. Inside your abdomen is a stout lining called the peritoneum that holds your stomach, intestines, and other abdominal organs in place. Along the way some brilliant researcher discovered that the peritoneal lining can filter blood just like a dialysis machine does.
To prepare for this I had to undergo yet another surgery, this time at St. Francis Hospital. The surgeon implanted a new catheter in my abdomen, which extends from my body to the left of my navel. Back at my dialysis clinic a nurse attached an extension (transfer set) to it so I could use the catheter with their specific machinery. It looks something like this:
No, that’s not a photo of my body. I’m not that sleek and curvy, but you get the idea. The coiled end sits deep inside my abdomen and the brunt of it, with the extension the nurse put on, sits outside my body.
True to my luck, however, sometime soon after the catheter was implanted, it got badly kinked inside my body. I had to undergo yet another surgery to have it fixed. The surgeon couldn’t explain how it got kinked so badly inside me but is confident it won’t happen again. The surgeries were not at all pleasant but at least the catheter started working.
As I write this article, I’ve just completed four full days of training to use the equipment inside my apartment. On this, the fifth day, two nurses came over to my apartment to watch me prepare the equipment for tonight’s treatment. I’m done training, and it went well. Three different nurses trained me at the clinic, and they were terrific. From now on, every two weeks, the clinic’s chipping department will be delivering fresh supplies to me. I took this photo so you can see most of the supplies piled inside my apartment:
Hopefully I won’t need anything in that closet too soon, but I don’t think I will. These boxes are just the solution bags that will be filtered through my peritoneum, so my blood can be cleaned. Every night I will use two 5,000 ml bags and one 3,000 ml bag. The solution is basically a form of sugar water that pulls the accumulated toxins through my peritoneum, as well as excess fluids my weak kidneys can no longer flush out. All of this drains into bags on the floor. Here is a photo of the machine:
The machine is called a cycler. It’s not large but is quite heavy. I’m thankful for the handy-dandy cart that was designed especially for it. The lit-up screen gives you directions for proper set-up and takes you step-by-step through the process, to get it going. On top and to the left and right are the solution bags that will fill my peritoneum and flush out—the drain bags are there on the floor, to the left.
I’ve been training all week on this device, so I can tell you the fluid that enters the waste bags looks a lot like weak urine. You empty the bags into the toilet or a sink. They drain pretty quickly.
All of this is called peritoneal dialysis. This is my home treatment. Eventually they will remove the old catheter that’s still in my chest. I look forward to that because I am not allowed to get it wet. Since it was implanted last November, I have not been allowed to take a normal human shower. I take sponge baths instead. I miss showers and want to take them again.
Thanks to the cycler (the machine in the above photo) there’s really not much chance of screwing up and harming yourself. The machine basically won’t let you do that. But the process involves a lot of connections with tubing, and the single-greatest risk with peritoneal dialysis is infection. Specially, peritonitis. I want to avoid that. So I wash my hands carefully, use hand sanitizer, wear a mask, and let none of the connections touch the floor.
My first full treatment is tonight. I have the machine ready to go, so it waits till I connect my catheter before bedtime. It will run overnight, as I sleep. The process really does work. Together with the hemodialysis I was undergoing in the clinic, this whole process has turned my health around. I breathe clearly. I sleep quite well. I have much more energy during the day. There is still some swelling, but not nearly that much. I have lost over thirty pounds. My bloodwork is looking pretty good lately.
But it’s really not something you want to do unless you have to. It takes a lot training, commitment, and discipline. This is now my life. This is my new reality.
So take it from me, people, and learn from my mistakes. Take care of yourselves. Eat healthy, get exercise. See your doctor regularly. If you have a disease like diabetes, make sure you keep it under control. And did I mention, see your doctor regularly?
I wish you all good health. Thanks for reading.