What I’ve Learned About Preparing for Surgery With Sickle Cell Disease

When living with a condition like sickle cell disease, effective communication between different hospital departments and the patient is imperative — especially when the patient is having a surgery that could result in complications.

I recently had a port-a-cath placed so I can receive blood exchange transfusions long term. This is usually a short procedure, where patients are admitted and discharged on the same day. Of course, as luck — or rather, “unluck” — would have it, that was not my experience.

I had a sickle cell crisis post-surgery and unfortunately had to spend a week and a half in the hospital. However, I think this could’ve been avoided. Let me explain.

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My surgery was scheduled for 9:30 a.m. I’d wanted it to take place first thing in the morning since I wasn’t allowed to eat or drink anything, including water, after 2 a.m. that day. The surgery ended up being delayed, and my hematology team was not told when it would take place.

The surgical team was finally ready for me at 1 p.m. However, by that point I’d gone almost 12 hours without any water — even though it’s well known that dehydration can trigger a crisis. To mitigate this risk, I think the surgical team should have given me IV fluids once they knew the surgery would be delayed by hours.

Next, I think better communication with my surgical team before my port-a-cath placement would’ve helped. Because I take blood thinners as part of my daily medication regimen, I reached out to the surgical department as soon as the surgery was scheduled to ask when I should stop taking that medication. Surgery always carries a risk of bleeding, and taking blood thinners beforehand increases that risk significantly.

When I spoke with the surgical team, I was told to “stop taking my medication 48 hours beforehand.” So I did exactly that. I didn’t take any medication for two days leading up to the surgery.

Once I got to the hospital, my hematology team was unsure why I’d stopped taking all of my medication, and I explained that it’s what the other department had advised. But apparently the surgical team meant that I should only stop taking the blood thinner — not all my medication! My hematology team ensured I took all of my meds, bar the blood thinner, that morning, but I’d still gone a few days without my critical drugs. In the future, I’ll be sure to triple-check this!

Lastly, I think patients should be clearly briefed ahead of time about what will happen during the surgery. I’d been awaiting the port-a-cath placement for years, but it wasn’t until I was being wheeled into the operating room that someone mentioned an incision would be made in my neck.

Two fun facts about me are that I’m extremely squeamish, and I hate people touching my neck. The thought of both of those things happening at the same time sent me into overdrive, and I had an anxiety attack. My body was shaking violently and uncontrollably, and I couldn’t breathe. I had to be sedated for the surgery.

I’m certain that putting this stress on my already dehydrated and unmedicated body was the straw that broke the camel’s back, triggering the crisis.

This experience highlights the importance of clear communication between all parties to ensure the proper measures are in place pre- and post-surgery. This is doubly important when the patient has an underlying condition that could potentially be triggered by issues that may be small and insignificant for many.

Going forward, I will double- and triple-check all plans and arrangements before having surgery to hopefully prevent any complications related to sickle cell disease.

Note: Sickle Cell Disease News 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 other 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.