June 30, 2016
If I could count on my fingers all the times I have suggested to a doctor what could possibly be the cause of an illness with my or my family’s health, I would need another pair of hands. Listen to your gut instinct.
The latest disturbing and debilitating problem: A forceful, violent, dry chronic cough, that’s gone on nearly a year. Last summer I starting coughing, out of the blue. No cold. No previous cough. It was just “there.” I have never smoked (other than the time in junior high taking a puff or two), am not around second hand smoke or chemicals that could cause damage to my lungs. I did not rush into the doctor because, let’s face it, I am so tired of going to my regular doctor appointments (and at the time, physical therapy was thrown in the mix too.) So in October at my regular physical exam with my primary care doctor, I mentioned it to her. After a brief looksy, she said “You have post nasal drip.” OK… so what do I do? Nothing. In December the cough took off. More and more and for no reason. I had just began a new rheumatoid arthritis drug and wondered if that could be the cause, a side effect perhaps? In February, my rheumatologist upped my dosage and the cough seemed to intensify. I coughed, and hacked, and choked, and barfed, and peed until I couldn’t see (literally feeling like I was going to pass out.) I read up on my RA drug and it stated a rare side effect COULD cause this and that and yes, coughing was one of those side effects, but the doctor seemed to think it was not the drug. I trust her knowledge of my treatment.
In April, this cough took on a life of it’s own. I mean, I coughed 16 hours a day. Even when I slept at night, I’d be awakened by my body turning against me. And my Poor Jenni. She can not handle the loud noises coming from my lungs. She gets very agitated by it all and because she is non verbal, she’ll make a sound back to me letting us ALL know of her displeasure with her mama. (Sorry my dolly doodle.)
I called my doctor (primary care) and told them I needed to be seen ASAP. I couldn’t (and can’t) handle this coughing. In the meantime before I went in, I had read up on my medications I take and one drug I was put on by this doctor almost a year before- Lisinopril- does cause coughing. It’s an ACE inhibitor used for treating high blood pressure. She put me on it not for high blood pressure, but for keeping my kidneys healthy. I recalled I had been on this drug about 10 years ago and had to stop because I developed an annoying throat clearing issue and a slight cough. As soon as my previous doctor heard of the symptoms, I was taken off of it. So at this office visit, as I was coughing up my lungs, they immediately gave me a breathing treatment: nebulizer, albuterol and I inhaled and choked the entire time. I mentioned that I thought it could be the Lisinopril and was shut down. “No, it’s asthma.” (Hmm… shouldn’t my lungs feel better and relived after sucking in this jitter-inducing medication for 25 minutes?) So I was sent home with my own nebulizer machine and picked up prescriptions for a ton of Albuterol. I was told to use the treatments when the coughing is BAD. (Uh, it’s ALWAYS bad. And embarrassing if out in public.) No matter how many times I inhaled the medicine, the more I would cough. A vicious circle. I even tried Claritin for a few months, but it did nothing but empty my wallet.
I had also seen my rheumatologist In April and she sent me for a chest ex-ray. She said she would call me if it was bad news. Luckily, no calls from her office. I had an appointment scheduled for June to see her.
In May, all I did was cough. Not just an annoying cough, but a forceful and violent cough. The more research I would do, the more I felt it was the ACE inhibitor. I went to my rheumatologist at the end of May not being able to hold out until June. I wanted to know WHAT was making me cough. Was it the rare side effect from the RA drug? (Seeing my primary care doctor didn’t seem to think it was her prescription of Lisinopril, I thought I’d give this route another whirl of questioning.) She did not seem to think so and told me to continue on it because I have made SO MUCH PROGRESS with it controlling my swollen joints and pain. I got the appointment and she said I needed to see a pulmonary specialist. Great, yet ANOTHER physician added to my life. I came home from the appointment with the rheumy and called the pulmonologist she recommended. A three week wait. IN the meantime, I sent my primary doctor and note through the handy online patient portal that so many physicians use now- which I love- and I told her that I really felt the Lisinopril drug was causing my coughing and reminded her of my previous encounter with this drug 10 years before. I got a note back saying “DO NOT STOP THE LISINOPRIL”.
This past Monday I saw the pulmonologist. I had blood taken for a blood gas test, had numerous breathing tests and another round of Albuterol. After 30 minutes of tests I met with the doctor. He looked over ALL my history, the paperwork I filled out and asked me many questions. He was searching online on his cell phone as we spoke (maybe he was on twitter, facebook, instagram :0 ), looking at my drug list, and strongly felt it was the LISINOPRIL. He said the timeline fit perfectly and that LISINOPRIL is a known cough inducer. He told me to stop it IMMEDIATELY and that I needed to start on a heavy dose of steroids as soon as I stopped the ACE inhibitor. I did both. I took my first steroid pill of 50 mg yesterday morning and within hours the cough lessened up. Took my second dose this morning and I think I have coughed slightly a few times.
I see him again in 2 weeks for more lung testing but he was pretty confident it is the LISINIOPRIL. The same drug and concern I had told my primary care doctor about over the last 6 months or so.
Why is it that most doctors won’t listen to a patient’s concern or check out the information? Not that I am the self diagnosis guru that I might sound like, but I have been correct in this area concerning ME- and my children- for so long (cerebral palsy; pneumonia; Multiple Sclerosis; Rheumatoid Arthritis;… why can’t I be taken seriously? Especially when the diagnosis’ all turned out to be true. This has happened to me on so many different occasions, over so many decades, with many different doctors. Here in Vegas, and also in California. So it’s common apparently for physicians to blow off a patients input.
All I know is, I am sticking to my guns from here on out. If I am certain of what ails me, then I am going to pursue it until I am blue in the face. This coughing for one year was completely unacceptable. My lungs are rejoicing; as well as my poor bladder!