Bert’s column two weeks ago dealt with illness as one of the “black holes” in our lives and gave us wonderful insights into the paths to healing through tending to these trials so that “love may enter and replace fear.” I had my first personal experience with one of these black holes two years ago.
I had eaten a very good meal (one that had more fat than I usually eat) in a nice restaurant. A few hours later, I developed abdominal pain and bloating that woke me from sleep. I couldn’t get comfortable. I wanted to throw up, but didn’t and couldn’t even make myself by sticking my finger down my throat. I thought it would just go away, but it didn’t.
The pain and nausea weren’t getting better several hours later, so I went to the emergency room. After an hour or so in the waiting room, I began a short workup that showed everything was normal except the gallbladder — no stones or inflammation, just “sludge” that probably wasn’t causing the problem. By this time, the sun was coming up. I was told to follow up with my family physician.
The pain slowly improved, but the nausea persisted. I could drink, but I didn’t want anything to eat. That was still the case when I saw my doctor. My physical exam was normal. He ordered more lab work and asked me to follow up in a week.
Nausea and lack of appetite persisted. When I came back the next week I had lost 5 pounds. Labs were normal and nothing had changed on my physical exam. I was to come back in two weeks if I wasn’t better. I wasn’t. I was still nauseated, still didn’t want any solid food, but could drink. But milkshakes were too much. I lost another 10 pounds over those two weeks.
My doctor ordered more labs and a CT scan of my abdomen. Everything was normal. Next a scope of my esophagus and stomach: normal except for decreased motility in my stomach and a little bit of irritation of the lining of my stomach, but I had now lost another 5 pounds. So, the decision was made to insert a feeding tube to “buy some time” for whatever had gone wrong with my GI tract (perhaps a virus) to get better.
Thus began my first hospitalization (since I was born). It was only three days, but they were eventful. I had the surgery to place the tube and two days to learn how to use it. In order to get enough calories in to maintain and eventually increase my weight, the feedings had to be given 12-18 hours a day. To avoid the possibility of reflux of the feedings into the esophagus potentially to the lungs, I had to sleep sitting nearly upright. I was sent home after a 20-minute training from a rushed and apparently disinterested employee of the durable medical equipment company that was supplying my pump.
As you might imagine, these five or six weeks had played havoc with my mental health, too. Questions swirled around in my head — will my GI tract get better? Will my insurance pay for all this testing and treatment? What did I do to bring this on? etc., etc.
I got better. I slowly began to eat more and after almost three months on the tube feedings, it was taken out and I’ve been eating normally since.
1. Let your support system know when you’re sick. Looking back, I am amazed at how much calls, cards, emails, visits, offers of meals and other assistance from family, friends and colleagues and the thoughts and prayers behind them buoyed me up when I was down.
2. If possible, have your spouse, significant other or a close friend with you when you discuss going home from the hospital with your doctor, when you are getting your discharge instructions and at every outpatient visit, if possible. The amount of information that needs to be exchanged in these meetings is very often substantial. You may not be functioning on all cylinders when these conversations take place. It’s great to have someone present to take notes and ask questions you don’t think of and to provide input as to how they think you are getting along.
3. The stress of illness, testing, hospitalization, surgery, sleep deprivation, etc. makes your brain work overtime trying to keep things together. Expect very strange dreams, even nightmares, and ask for help if the stress seems to be interfering with your healing process.
If you have experienced the stress of a significant illness or have taken care of a loved one with a serious illness, please share your “lessons learned.” We will pass them along in a future column.