Long, Hard, Road to Diagnosis - Shaquilla's Story

Leigh Clark: Hello, everyone. I'm Leigh Clark, Director of Patient Services and welcome to our podcast series, which is Podcasts for Patients with the Aplastic Anemia and MDS International Foundation. Before we get started with our podcast, I'd like to thank our Diamond sponsors, Alexion and Novartis, and also the wonderful support of our patients, families and caregivers. Without everyone's support, the podcast series would not be possible. I have the pleasure today of talking with Shaquilla Gordon, who is a PNH patient. Hi, Shaquilla, how are you today?
Shaquilla Gordon: Hello, Leigh. I'm doing well. How are you doing today?
Leigh Clark: Doing great. Thank you so much for joining me today. Tell me a little bit about yourself.
Shaquilla Gordon: Okay. So again, my name is Shaquilla Gordon. I live in Florida. I have two teenage daughters who keep me busy and occupied, and I also work full time, so I have a lot going on in my life. But I'm doing very well. And I'm just enjoying Florida. 
Leigh Clark: Great. So tell me a little bit about what was going on in your life before your diagnosis of PNH.
Shaquilla Gordon: Uh, okay. So before my diagnosis of PNH, I was just getting into the corporate world, working full-time. My daughters then were like half the age that they are now, so six and seven. They were very young at that time and also needed a lot of attention. I had my marriage, I had my children, a good job that I was getting into and learning about and different things every day, and I was in school at that time as well. So I had a normal life to me, and I just had, I had a lot of goals and things that I was accomplishing. Things was going very well for me, I would say that. I was very happy at that time.
Leigh Clark: So you were very busy just living your life, being a active person and-
Shaquilla Gordon: Mm-hmm.
Leigh Clark: ... mom with all of the things that you were wanting for yourself.
Shaquilla Gordon: Correct, correct.
Leigh Clark: And what's, what changed? What, what changed for you prior to your diagnosis of PNH?
Shaquilla Gordon: I started to gradually feel unlike myself. Gradually, I would feel off balance. I would feel super fatigued and tired. I was just always exhausted. I became very forgetful, which is now the brain fog that we speak about. I would be coming into work, getting out the car, getting out the car and walking to the building, I start noticing problems where I felt like I was so out of breath and having these chest pains and I would just feel very foggy. And the symptoms started very light. It was sometimes they'll come and go, sometimes it'll be the beginning of the day and then as my day go on, I'll gain energy back. And then as time kept going, I'm just like, something's not right, even when the symptoms were just mild to medium.
So I'll go to the doctor, you know, they would run things and it didn't look like anything. Maybe I'm just anemic. So it was gimme some iron pills and, or maybe a iron infusion, eat certain vegetables, certain fruits; I try to have healthier habits as far as sleeping habits. Let me try to go to bed on time. Maybe I won't be as tired. Let me try to group some things together and I can manage my time better and that would ease the fatigue. But as time went on, it was getting worse, and worse, and worse. And nothing that I was doing, the healthier habits, the iron medicine, the B12 shots, nothing was working. So then I had to move on from my primary care physician to my hematologist to say, "Hey, I, is something going on here? My primary care doctor is treating me for anemia, but I'm feeling real bad."
And with it being a hematologist, they ran a complete blood work and say, "You need a blood transfusion." We started with that 'cause my hemoglobin was super low. So my blood counts were low, everything was just out of whack. Let's do a blood transfusion. It was still being treated as hemolytic anemia. Nothing else came about. I would get the blood transfusion and then I was back in my doctor's office a couple of weeks later, like, "I'm back to feeling how I was feeling before. Nothing is helping me." "Oh, you need another blood transfusion." So then that's when we started digging. That's when he started doing the bone marrow biopsies. Things are coming out clean. We're not seeing anything. That's when we are doing different tests. I was told maybe I had lupus, maybe I have leukemia. Maybe it's this, maybe it's that.
Nothing ever came about. I was put on different medications that's normally treating cancers and different things like that, but it did not help me. So we kept going for almost a year straight. My doctor told me, "Maybe I'll test you for PNH. I don't think you have it, but let's go ahead and test you for it. I don't know what else it could be." And I didn't know what PNH was. And at that point in time when he sent that test off, I didn't consider myself, if I would've looked at different symptoms outside of, like, anemia, low hemoglobin levels, I wouldn't have thought PNH, not until the weekend that he sent that test off and I had to go into the hospital because I was experiencing really, really bad chest pain, completely out of breath, not feeling well. They ran my counts at the hospital. My blood level was at a five, so I need a blood transfusion and because I'm having chest pain, they did a CT scan on me and that's where they found the blood clot in my lungs.
So when they found the blood clot, they gave me a blood thinner. Of course, I had the blood transfusion. Tthey, um, let me go later on, I think the day after I was admitted to the hospital. I called my doctor's office that Monday and I was like, "I was in the hospital and this is what happened." And they was like, "Well, we were just getting ready to call you because we got something to tell you. Can you please get to the office?" I got to the office and the flow cytometry test that they did on me show that I was positive for PNH, which further explained all of my symptoms, including the blood clot that I had, and that was the first blood clot that I at least knew of. But the whole time, I, I wouldn't know if I had more than one because I was steady being treated for anemia as I had, as I was just anemic and out of breath and it was just because of the anemia. So I, I really don't know.
But that year prior was very rough for me 'cause I started to feel less than a human, or less than an adult. I started to feel like I was not smart because of the brain fog. Things is going in one ear and out the other. I'm not comprehending things like I normally do. I didn't feel as sharp as I normally did. I didn't have the energy to run after my children, play with them, do things with them. I was always in the bed and dad picked up that mother-father role, which he ended up having to because I was very limited to what I can do and I'm saving all of my energy just to make it to work to help with the household.
So I was pushing myself to do things that I felt if I had a choice not to do them and I, I didn't have to do them, I wouldn't have done them. I spent a year very sick, almost a year very sick. And when I finally got that diagnosis, even though I didn't know what it was outside of it being a rare disease, I was very happy and very relieved just to know we got something here. We know exactly what it is and then the journey started with the treatments.
Leigh Clark: When you got to the doctor's office and what did they tell you about PNH and did they discuss any treatments with you?
Shaquilla Gordon: Yes, they did. So I would say we kind of started treatments right away. I would say I'm very thankful for my hematologist. During that year, he, he went off my symptoms, how I was feeling and the blood work, um, to try to figure out what was going on. And a lot of times providers don't instantly think of PNH. I wasn't showing blood in the urine. I didn't have a blood clot at that time that we knew of. It was a lot of different things that I was not exhibiting with PNH and I just looked like a regular anemia patient that's negative for leukemia, negative for aplastic anemia, negative for lupus, all of these different things and that's all that I had. But funny enough, when he told me that I had PNH, he was super excited because he was like, "Oh my god, this is, like, two to three cases in a million. It's, it's very rare. You don't get patients like this."
So he started telling me how rare the disease is, the treatment that I would be starting on, which I started on Soliris first. He made sure I had all of my vaccinations and the ones that I did not have that I needed prior to starting Soliris, he wrote them out. Great for me. He sent them over to my primary care physician and told her exactly what I needed and what to do, so I didn't have to go to my doctor's office and try to explain something that I'm just learning of. He basically wrote it out for her and sent the order.
Leigh Clark: It sounds like there was very good coordination of your care between the hematologist and your primary care physician. And how did you feel about that?
Shaquilla Gordon: I felt really good and relieved because it was one less thing for me to try to explain to someone else that I didn't know myself.
Leigh Clark: And then so you went on Soliris and how-
Shaquilla Gordon: Yes.
Leigh Clark: ... how was that?
Shaquilla Gordon: So my doctor, he basically gave me what the expectations were to say, "Hey, you're, you're, you'll be starting on Soliris. This will be a treatment that you'll be doing once every two weeks. Within the next six months, you should start to see improvement in your quality of life." So he basically set up that timeframe for me, let me know what my expectations were. I got the vaccines. I went in for a port placement that way I can get my treatments that way, and I was on treatment. I will say I started to become stable. I started to feel a little better than I started to kind of go downhill again, and we were trying to figure out what else can be done. At that time when I was diagnosed in May of 2017, it was the medications in the work for PNH, but it was not that many on the market. And the one that was on the market outside of Soliris, my doctor was saying at this time, "If Soliris isn't doing it for you, this one definitely won't be. It's not going to get you where you need to be."
We tried to do clinical trials. I was turned down because they told me on paper, she looks too sick. So we finally got to a point where my doctor pushed for me to get on EMPAVELI in good faith because I was starting to have frequent, blood transfusions again, not feeling well. He did bone marrow biopsies again. We did another round of that. We probably did two of those to find out they're clean again, nothing but the PNH. That's all that it is. It's just the PNH and, um, I don't have any leukemia or anything like that, no aplastic anemia because he was afraid that that may come into play. Uh, none of that.
So, he finally pushed for me to get on EMPAVELI and use in good faith. So I'm very thankful to him for that. Once I got on EMPAVELI, that was the best that I felt in years. That was the highest I seen my hemoglobin go to naturally. I was at a 10, 10.5 and I would get out and be in the house doing, cleaning up all morning long, you know, organizing, feeling good. And even when I lay down, I'm like, "I'm not even tired. Why? You know?" Because I'm, I, my body was trained, get in the bed, lay down, just sleep and I couldn't. And I'm asking everyone now, like, "What do you want to do? What y'all want to do today? You got something in mind? Let's do something. I'm bored."
I got on EMPAVELI and started really catching up on life. I started to feel real good. My EMPAVELI, I self-infuse myself three times a week. I've been on EMPAVELI for the last three years, almost four years now. I've been doing very well with it. Even the new medications that's coming out, I hear a lot about it. A lot is different now for PNH. PNH looks very different now. So it, it's been a good, it's been a good time. I would say that.
Leigh Clark: And you do have a PNH specialist that also helps with monitoring you. Would you like to talk a little bit about that? How often do you see them and how has having a PNH specialist on your team helped as well?
Shaquilla Gordon: So if I can go back a little bit with you, Leigh.
Leigh Clark: Sure.
Shaquilla Gordon: PNH is, was a condition that's very, it's very rare and it was something that I never heard of until I was diagnosed with it. So of course when you're diagnosed with something, you go to Google, you're searching, you're looking AAMDS Foundation came up for me and they had a lot of information and resources regarding, um, PNH and also, different conferences that was available for me to go and meet others like myself. That's where I found out and learned about second options, um, having a second option, a second provider, you know, someone outside of your primary provider and it's okay to have someone overlook.
I met PNH patients like myself who had other providers who looked after them, got recommendations as well. The foundation definitely helped with that, even the travel fund for AAMDS to help PNH patients such as myself. That's how I got connected with my hematologist that I see, my secondary hematologist that I see and I go see him annually. I see him every year and I take advantage of the resource, with AAMDS using the travel fund to see my provider. They're very supportive in helping me, making sure I'm able to do that appointment because I'm having to travel out of town to see him, every single year. And you guys helped make that possible for me and in helping making that possible for me, I feel very complete.
My PNH is still here, but it's managed by providers that I trust, providers that I love, providers that include me in their decision-making, providers that also discuss amongst themselves with without me, where they're able to bring their brains together to see what next steps should I take or should I take any. So with that being said, the foundation a big part in getting me where I'm at now, and the knowledge that I have now comes a lot from that foundation and me getting together with other PNH patients such as myself. That lets me know that I'm not alone and the things that I'm going through. Some of us was going through things much worse or very similar to, so yes, I do have a secondary physician that I see annually every year that also helps control my PNH.
Leigh Clark: Shaquilla, through everything you've been through, what have you learned about yourself and what is it that you would like other PNH patients to know?
Shaquilla Gordon: I would say I learned that I'm very resilient. In the beginning that being diagnosed with PNH, I felt very less than because the symptoms put me in a place where my mind was tricked as if it was me, and I learned that it was not. So I feel like I become very resilient. I don't give up. I advocate for myself a lot to the point where I have fallen in love and grew a true passion for also advocating for others and teaching others how to advocate for themselves. Um, sometimes you have to speak up. Sometimes if you're not comfortable with something, it's your body. It's things that you have to live with, things you have to go home with. You have to be around your children, your family, your spouses, um, friends, co-workers. This is your life.
So in that, I couldn't just sit down and let it take me down in my early 20s, early to mid-20s. I'm too young. So I, I gained that strength. So I become very resilient in how I carry myself, my health, the physical part, and also learning how to take control of my PNH. And everyone has their own PNH and it's all in how you control it.
Leigh Clark: Well, thank you so much for sharing your story, your advice, for other PNH patients. It's, really important for people to know they're not alone and the symptoms that they're experiencing are real and they are the symptoms that other patients e- experience as well. And if you'd like to learn more about PNH, about the treatment, or about the PNH travel grant that Shaquilla spoke about that is available to PNH patients to be able to see a PNH specialist, please visit our website, which is aamds.org. You can always give us a call at 800-747-2820 or send us an email to help at aamds.org. Thank you so much.
Shaquilla Gordon: Thank you.