Shaquilla Gordon shares her experience living with paroxysmal nocturnal hemoglobinuria (PNH), from preparing medications and emergency cards to managing treatments while traveling. She reflects on the importance of planning ahead, advocating for her needs, and finding confidence in balancing safety with the freedom to explore new places.
Transcript
Hello. So my name is Shaquilla Gordon. I live in Florida. I was diagnosed with PNH in May of 2017.
Being a patient with PNH, traveling now is like a job. So before I travel, I like to fully prepare myself to make sure I have everything that I may need, or just-in-case items. And what I mean by that is, for one, I always stay conscious of the date that I’ll be leaving and coming back. That way I know if my treatment falls on any of those dates, and if so, what does that mean for me?
So if it’s not just like a weekend trip that I’m planning — and I know I don’t have treatment during that weekend, then the extra preparation comes in. Well, how many treatments do I have while I’m gone? So I make sure I pack that amount of medicine and I always pack one more extra and the extra supplies as well to administer my medication.
Then I make sure I have like a small cool pack that will keep my medication cold while I’m traveling. Especially if I have a long flight, where I know everything is taken care of until I get to the nearest refrigerator to place my medication since I do self infusions.
Also, I carry around emergency cards. So with those emergency cards, it basically says the dates of my infusion, the type of medication that I’m taking, the name of my physician, and contact information. Also, the contact information for the pharmaceutical company that handles my medication.
Then I also have a second card that has my diagnosis on there. It also advises on the different safety mechanisms for my port — as far as what type of imaging the port will allow — to make sure everyone has all of the information that they need.
Before I go, I like to make sure I know of the different facilities that’s nearby, different physicians. So I normally pull up a list of in-network hospitals, and in-network hematologists that I may be able to see or go to if I have any complications or any issues. That way I’m ahead of everything. I also keep access to my patient portals.
Going different places, people are unaware of PNH, even the providers within hospitals. That way I can have just like a mini shot of my records and what my accounts look like and everything like that and then they’ll be able to communicate with my provider even after hours.
So that’s the preparation that I do to travel. That way, I feel comfortable, I feel safe, and also letting my physician know that I’ll be out of town as well, especially during times where I have treatments scheduled. That way we can kind of coordinate those things together if I need any assistance.
We don’t want PNH to dictate how we live. But at the same time, we still have to have a strong awareness of how we’re feeling. So if we’re on a trip — no matter how fun, how beautiful — let’s take that time to put ourselves first.
My first long flight was from Florida to California. Even though I’m taking blood thinners every day for the rest of my life, I still have to be mindful and careful of, when I’m traveling, how long am I sitting? So that’s especially on the flight. So from Florida to California, that’s a very long flight to just go straight through.
So being on that flight, I found myself every hour on top of the hour, just kind of getting up, stretching my legs, going back and forth. If you don’t have that aisle seat and you’re sitting next to someone on a flight, let’s not be embarrassed just to say, “Hey, if you don’t mind, I may have to keep getting up periodically because I do suffer with a rare disorder that may cause blood clots, so I just need to work my legs. But I will try not to disturb you as much as possible.”
I was just on that flight to California and I’m like, “Oh my god, I’m going to have to keep getting up in front of all of these people. And they’re going to be like, ‘Why does she keep moving?’” So I had to kind of suck that in and understand that my health and well-being is priority. So I need to open up more to others so that they understand. And I don’t feel as bad. So, “Oh my god, why is everyone looking at me like I’m weird?” or something like that.
Always just be self-aware. Be self-aware of how you’re feeling. Please, never feel like you’re doing too much or you’re being over worried and consumed with the idea of traveling and having PNH. But for the most part, never let PNH dictate how you travel or what you do. You dictate how you travel with PNH, while still being self-aware.
We’re not going to be crazy or oblivious to the fact that we have a diagnosis, but at the same time we don’t want to be held hostage to PNH when it comes to traveling, where now that’s checked off the list. No, not at all. So we just make those arrangements to get where we need to get safely. And while we’re there to be able to safely enjoy ourselves as well.
