Being Well-Informed About our Diagnosis: Kirsten Braley

January 03,2020

When you have a chronic lung condition, catching a respiratory illness is a challenge. Pulmonary hypertension patients are faced with a decision tree when the first signs of illness emerge. Since I was diagnosed with idiopathic pulmonary arterial hypertension in 2017, whenever I begin sniffling or coughing I ask myself, “Can I treat this myself? Should I go to my primary doctor? Should I go to urgent care? Should I go to the emergency room?”

Treating it myself means that I can’t take any of the over the counter medications that I relied on pre-PH diagnosis. A PH patient must avoid medications that contain decongestants because they may raise our blood pressure. Using OTC medications without decongestants feels like the embodiment of the saying, “Taking a knife to a gun fight.”

If I choose to visit my primary doctor I will need to wait until they can squeeze me into their schedule. At my primary’s office they are also limited on the tests they can run in-house to provide rapid results.
For me, going to urgent care means waiting until the location I prefer opens at 8 o’clock a.m. In my urgent care experience, I have been seen by a doctor quickly and they are better equipped to run tests in-house (including a chest x-ray).

As a last result I reluctantly consider the ER. It’s incredibly hard for me to agree to go to the ER because that door seems to inevitably lead to a hospital stay. Besides blowing up your schedule for the next week, you are exposing yourself to unknown germs at the hospital and unknown care providers (I’m not sure which of those is scarier).

After dealing with a persistent cough for five days, I woke up in the middle of the night because I couldn’t get any relief. I had chills despite sweating. I was experiencing leg cramps in both legs that were worse than any leg cramps I have ever experienced. I was also suffering from an unquenchable thirst despite abandoning my typical fluid restrictions. I drank 50 ounces of water in five hours without making a dent in my thirst. I suspected that I had the flu since I hadn’t yet gotten my flu vaccine. I had decided to go to urgent care at 8 o’clock a.m. Then I finally took my temperature which was 102 degrees — I realized that I needed to go to the ER.

When you have a rare disease you will encounter care providers who 1) have no clue about your disease 2) remember something they once read about your disease years ago 3) think they know everything they need to know about your disease. In other words, you, yourself, need to know as much as you can about your disease and have questions about every suggested treatment.

At the ER they ran a bunch of tests. Ultimately they determined that I had pneumonia. When I arrived at the ER, I was severely dehydrated. The on call internal medicine doctor determined that I needed to be pumped full of saline. This was the right call when they began to treat me. However, as my treatment progressed I began to retain the fluids. I had to remove my normally loose fitting medical alert bracelet for fear my wrist was getting too swollen. It was a challenge to get the doctor to stop the IV fluid. I convinced the doctor to turn down the drip and waited to see my pulmonologist to ask him to pull the saline and order a diuretic. I was fortunate that it worked because I understand it can be a delicate balance that can lead to a frustrating fluid/diuretic cycle if not caught in time.

While in the hospital I felt like I had to demonstrate to each care provider that I knew more about my disease than they did. When I reviewed the hospital encounter reports the doctors commented that I seem well informed about my disease. I believe that my being well informed is why the doctors were willing to collaborate with me on my care plan. PH patients need to advocate for ourselves, otherwise we will be at the mercy of each care provider we encounter.

How do we become “well informed” about our diagnosis? Ask questions of your specialists and within your support groups. I have asked questions that made my specialist laugh out loud. Were they stupid questions? Not to me. Getting a laugh from my doctor reinforced that I don’t need to worry about that question anymore.

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