In the early eighties, my brother Bob, who was eighteen at the time, started to have breathing issues. As the only boy, I had always wondered why my sister and I were the athletes of the family, but when we learned about his breathing issue, we understood why. He had mentioned that doing sports, he always struggled but thought it was normal.
At first, the doctors diagnosed him with asthma. As time when on, it became severe asthma. As more time went on, he would get bouts of bronchitis and that turned into severe bronchitis. His main drug therapy was inhalers, theophylline and prednisone. Thankfully, the drugs for asthma today have advanced by ten folds since the 80’s, but unfortunately, my brother was used as a “guinea pig” and he lost.
As the years progressed, my brother’s breathing got worse. The doctors in the suburbs of where we lived were limited on their protocols, so they would up the dosages of his steroids. Steroids are great short term, but if a person is on them longer than a week, it can start to cause havoc within the body. After three months, the steroids will take over the adrenal glands, so to speak, and run it unnaturally. Back in the eighties, there were no other options, so we thought.
We lived in an area where there are some top hospitals in the country, so my brother was told by specialists to go out to the National Jewish Hospital and Research Center in Colorado, now called National Jewish Health. This was seven years after being diagnosed with just asthma. He was only supposed to be at the National Jewish Hospital and Research Center for three days but instead, he ended up there for almost three weeks. The doctors ended up taking an actual piece of his lung out to biopsy it. The results ended up showing that he had a rare form of diffuse panbronchiolitis, which is more common in Japan.
Diffuse panbronchiolitis (DPB) is an idiopathic inflammatory disease, which affects the respiratory bronchioles, causing a severe obstructive respiratory disorder. If left untreated, DPB progresses to bronchiectasis, respiratory failure and death. Because DPB was more common in Japan, it was not recognized here in the US. In Japan, unless severe, the protocol was to treat with an inhaler and Erythromycin, which has anti-inflammatory properties.
When my brother came back, he was very weak from all the tests that had been done and ended up in the hospital. The steroids, which he had been on for seven years, reduced his immune system significantly. The hospital started to follow the normal protocol but my brother and sister-in-law fought tooth and nail until they found the right doctor to listen. They went through six doctors. My sister-in-law had found the right books to show this doctor and he went along with what it said.
At one of my visits, I went to the library myself so I could find out more about DPB. To my surprise, one of the books said that if someone doesn’t respond to normal asthma therapies, to give a shot of epinephrine to see if they respond. If they don’t respond, the issue is deeper into the lungs. Which in my brother’s case, it is. So, why did the doctors not know this? Had they tried this earlier, perhaps they would have thought twice and done some research to see what the real problem was and not push, push, push the steroids.
The doctor that listed to him followed protocol of what they did in Japan at the time, and he ended up getting better, but not 100%. The steroids severely damaged his immune system, which in turn caused him to get repeat infections, which would land him in the hospital. The Erythromycin ended up interacting with his theophylline and that pushed him into having seizures. For two years in a row, it was a non-stop game. As soon as he would get out of the hospital, he would have seizures and end up back in. Oddly, he ended up going back and forth between two different hospitals and I never understood why. At the time, I had worked in a pharmacy, so I researched every single drug he was on and found that the theophylline also interacted with other drugs he was on. The very last visit to the emergency room for seizures, I ended up getting to the emergency room before my brother. When they wheeled him in on the stretcher, he looked like a starving kid from Africa. I was devastated and thought that I had to do something. As I looked up, I recognize one of his doctors, so I went up to him and started yelling with tears rolling down my face. I explained to him about the drug interactions and how it was the sole reason my brother kept having seizures. The doctor calmly told me that he was no longer my brother’s doctor, but he would speak to his doctors directly, and he did. But unfortunately, one of the doctors misunderstood the order and increased his dosage of theophylline. In turn, my brother ended up going into critical care for toxicity. This was not my brother’s first time in ICU or critical care due to lack of communication, so to speak. Doctors and nurses are saving graces, God bless them, but they are human.
Because of the mistakes made by the doctors, my brother always made sure to put up a list of medicines, dosages, etc.., along with allergies on a poster that would get placed on the wall behind him. He would always confirm that they saw it and follow it. This was before hospitals started doing the same thing. Perhaps they caught on finally after his death.
Not too long after he got out and stayed out of the hospital for a while, my brother found an amazing doctor at GWU. He had been the head Pulmonologist at NIH and was extremely interested in my brother’s case. Having had the connections to NIH, he was able to get my brother monthly immunoglobulin treatments to help build his immune system. The treatments helped to keep him out of the hospital significantly. He didn’t stay out completely but it was better. My brother was able to live a better life then he had.
My brother’s goal was to reduce or even get off of the steroids but his body wouldn’t have it. Even with the immunoglobulin treatments, it just didn’t work out in his favor. Towards the end of his life, his intestines perforated, so they had to take it out. When they went to put it back in, he did okay for a short while but then got pneumonia and sepsis, which took his life at the age of forty-three.
Medicine has advanced by leaps and bounds since the eighties but it is still not an exact science. There are still so many people who have to take steroids to get by, because doctors don’t know any other way. But knowledge is power and while my brother was alive, he always researched his medical conditions, doctors and whatever else it took. He did not always rely on the doctors and many times, he had to update them.
There are many great doctors out there, but many have so many patients to keep track of that they can’t focus on just one. With this in mind, if you have something going on doesn’t completely rely on what one doctor tells you, research it for yourself. Research it to confirm it or research it to come up with questions for your doctor. The internet is a great tool for all of us to use. We are lucky to have it.
For those who are on steroids long term, definitely check out all your options. Sometimes going to a more natural option, like hydrocortisone, can help. Or switch over to a different cortisteroid and try to reduce the strength. The sooner you can taper off, the better.
It’s sad and heart breaking that my brother had to use steroids to stay alive but in the end, it’s really what killed him.