Emergency needs become a wake-up call for this rural patient

Well, it was bound to happen sometime. My first ambulance ride.

I was awakened suddenly from a deep sleep at 2 a.m., my upper back in excruciating pain. A 10 out of 10. I waited a few seconds, trying to take a deep breath, to see if the pain would dissipate. No luck; it felt worse.

I sat up. I walked around. Breathing was hard. I drank something, which didn’t help much. I got a heating pad. It was awful, but within about 30 minutes the pain had subsided. I decided to wait a bit to see if it would continue to improve. Another half hour and my back felt a little better, but I had a squeezing feeling in my upper abdomen and my heart rate doubled.

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How to Best Advocate for Yourself in an Emergency

A 911 call from the middle of nowhere

I live in the middle of nowhere and the response time is slow, so I cannot dawdle when it comes to medical emergencies. I asked Siri to call 911, knowing that if I felt worse, I might be in no condition to call myself. I told the dispatcher I was having back and chest pain, and emergency services said they’d send someone right away.

Our local Cal Fire team arrived first and did an EKG, which showed a slight abnormality consistent with other tests I’ve had. The ambulance team arrived next and took their own EKG, with similar results. They decided they wanted me to be checked out to make sure nothing serious was going on. That was the right choice. I’d been having some heart and digestive issues, so, since symptoms can overlap, I knew it was critical to get this back pain looked at.

Their first time

That’s when the hemophilia fun began.

I told the ambulance team that I had hemophilia and shouldn’t take aspirin, especially because I was due for another dose of my factor VIII clotting medication. They gave me nitroglycerin instead, but hesitated to start an IV. I assured them it was OK.

There are a few misconceptions about hemophilia. Some people have told me it protects against heart attacks. Some research seems to support that, but other research has shown it’s doesn’t, particularly for mild or moderate cases. In some cases, the risks are even higher as mobility issues can cause people with hemophilia not to exercise enough.

On this night, everyone I talked to told me I was the first person with hemophilia they’d ever met. I wonder if I was just the first person with hemophilia they knew they’d met!

Everybody was kind, and they all listened to me. The tests determined I wasn’t having a heart attack. Most likely, I was experiencing a pinched nerve or the gastrointestinal issues I’ve been working with a clinic to resolve.

Going forward, in case I find myself back here again

I learned a couple lessons from this experience. If such a scare happens again, I’m going to carry with me some simple information about medical emergencies with hemophilia, with references, so I don’t have to explain things — because I might not be able to.

I was also reminded that it’s important to call before an emergency gets out of control. It can be dangerous to wait more than 20 minutes for an ambulance to arrive, get assessed, then spend another 20 minutes to get to the nearest hospital. In rural areas, calling early offers more protection. I’d rather call too early and be told I’m OK than wait too long and cause further issues.

While I continue to sort my current medical challenges, I’m so thankful for the emergency service providers who work to keep us all safe. We have to continue to show them grace as they cannot possibly know or understand everything about every rare medical condition. (Surprisingly, the doctor who told me I was the first person with hemophilia he’d met was in his 70s!)

It falls to those of us with a rare disease to educate people about our needs during an emergency. Thankfully, many are willing to listen and learn so they can help us.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.