When hemophilia makes it harder to find care for other conditions

I am in a video game. My mission: Fight the medical bureaucracy and access care. I must complete three levels and capture the golden key, which unlocks a fortress where healthcare is obtained.

I’m stuck on Level 2. No matter what I try, I can’t gather the tools to unlock the door that moves me to the final level. This game is challenging: The rules change as I go, so I must figure out additional rules and gather new tools in real time. It is frustrating, and I often want to give up. Playing the game is exhausting.

In my personal life, I am struggling to unlock a level of healthcare. I am trying, desperately, to get an appointment with a gastrointestinal (GI) doctor.

The struggle started in the spring of 2024. I was having horrible GI symptoms that made it hard for me to eat, breathe, walk, or function. Level 1 of the game had few challenges. I met with my primary care physician (PCP), who diagnosed me with gastroesophageal reflux disease (GERD). She prescribed a medication to reduce acid reflux, and I felt better in days. My PCP then referred me for an endoscopy to ensure there were no additional issues.

The endoscopy was performed by a doctor who’s in the same healthcare system as my hematologist, whom I see for my hemophilia A. The two specialists coordinated my care beautifully. After the procedure, the doctor who did the endoscopy strongly recommended that I come to their digestive health center, where they could identify and fix the root cause of my GERD.

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I got a referral to the digestive health center and called a month later. Level 2 officially started when I discovered the referral had not been received, so I had it resent. Success! I was then added to the waitlist and told it would be some time before I could schedule an appointment. A few months later, I received notice that multiple doctors had quit unexpectedly, and the center no longer had the capacity to bring me on as a new patient. This happens too often.

After months of waiting, I had to switch gears. I made an appointment with a GI doctor more than 13 hours from my home, and was thrilled when an appointment opened four months earlier than I had scheduled. During that visit, I learned I will likely need more than one procedure to sort and treat my GI issues. Unfortunately, this specialist wouldn’t be able to bring me on as a patient. They referred me back to the digestive health center in the same system as my hematologist, but I still couldn’t get in.

I tried another GI clinic closer to my hematologist but was turned away. Every potential doctor said the same thing: I would be best served in the same system as my hematologist. I told them I couldn’t get an appointment but was still turned away. It makes sense, given the importance of coordinated care for those of us with hemophilia. But what do I do?

My daughters grew up with two moms. There is a joke we tell in our family: “It sucks to be a kid raised by two moms. You’re forever stuck in a loop of ‘Go ask your mother!'”

Stuck in a loop

As I struggle to find GI care, I feel stuck in a loop I understand but cannot control. Many parts of the U.S. are feeling the crunch of a massive and growing shortage of medical providers. In the area where I live, there is a two-year wait for a first appointment with a PCP, and you must apply (meaning people with more complex health needs are less likely to find care).

I’ve been stuck on Level 2 for 10 months now, and my symptoms are worsening. In fact, I found myself in the emergency room recently needing a “GI cocktail” and IV fluids. I am on stronger medications to control the GERD, which is now treatment-resistant. There are fewer foods I can tolerate. This game sucks. I hate being stuck. I cry.

Doctors want patients to be seen at the safest place for them. So what do we do when needs and circumstances are in direct conflict? I’ve continued to call GI providers, but every one has said I need to be seen at the one place that can’t take me. How do I unlock the door and reach the next level?

Thankfully, I realized (a little late) that I could reach out for help. It’s hard to ask. My hematologist kindly stepped in to assist and requested that I be seen. I’m hopeful this is the tool I need to unlock the final level and schedule an appointment with the digestive health center.

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.