Ashlee Gambino - phaware® interview 549

My name is Ashlee "The Mobwife" Gambino. I'm a retired professional fighter. I've acted. I've done a lot of different things. I am now diagnosed with idiopathic pulmonary arterial hypertension. I'm in the severe category, so it's pretty far along. I can no longer fight, unfortunately. I have a central line pumping life-sustaining medication directly into my heart right now.

I performed on Fremont Street for two years when we first moved to Las Vegas. As a fighter, I would hand people a pair of boxing gloves, provided they weren't belligerently drunk, and they agreed to the rules, which where we weren't supposed to actually hit each other. We would shadow box each other. Of course, that turned real more often than not. That was a lot of fun. From there, I debuted in MMA for Tuff-N-Uff here in Las Vegas. Then, I became pregnant with my second daughter. Seven months after I had her, I debuted in professional boxing for a short notice fight to help them save a card.

I have two kids. I have Carmella, she's my oldest. She's nine years old. My youngest is Carmine, he's three. We lost Katana, she would be five right now. I was going to have a baby when I was diagnosed with this. I was very pregnant and unfortunately I lost her due to the complications of this disease.

I lost my daughter Katana to the incredibly rare disease called acute leukemia. It can be very fast acting. In her case, it was very fast acting and it took her very suddenly from us. It happened almost exactly a month right before my diagnosis. She passed away right after Thanksgiving and I was diagnosed a month later.

I was having these issues where I was trying to be an Uber driver. The shortness of breath is the biggest thing. I was also pregnant at the time. I would drive for one day and then I would sleep for literally two or three to make up for my energy loss. We had no idea what it was. Nobody here knew what it was. The very first sign of the pulmonary hypertension was after I had my son Carmine. They found that my oxygen was dropping at an abnormal rate. So doctors had extensively tested my lungs and my heart to see what was going on. At the time, the only answer I had gotten is that my heart and lungs looked perfect and athletic, and that there was nothing wrong. Obviously, there was though, because my oxygen was dropping. Now, in retrospect, that I know what it is I feel like there was signs before that also.

Before Carmine, I think it was happening too. That was around the time that I had debuted professional boxing. I believe that I was showing signs of that too, because I accepted the fight on short notice and I was out jogging and I just couldn't even make it to the end of the street. That wasn't normal for me. I would usually be able to take a jog no problem. It was really difficult to complete even just a jog, so I believe that that was trying to show me a sign that I had the pulmonary hypertension, initially.

We flew to Ohio from Las Vegas for our daughter's funeral. That's where most of our family is at. During that time period, I was having a very hard time making it up a flight of stairs. I would have to take three breaks, even just to get up one flight of stairs. My oxygen would drop all the way into the eighties, moving from one room to the other. I had the oxygen test due to recognizing that my oxygen was dropping after I had Carmine. I went to the hospitals seeking help knowing that I at least needed oxygen if nothing else. I didn't know what else to ask for at the time. They had sent me home, told me there was nothing they could do for me. I didn't even get oxygen.

That took three tries of going to different hospitals before I finally got transferred to a bigger hospital, and then even that hospital almost sent me home, too. But luckily, there was one doctor that had saw my echo and recognized that my heart was enlarged. If you know something's wrong with your body, then that means something's wrong with your body. Even if a professional disagrees with you and you know something's wrong you have to keep advocating for yourself, because if you don't, it's impossible to get the proper help.

The immediate plan of action was a whole team of doctors came in looking at me sad, because they had to tell me that I had to lose my daughter in order to survive. I didn't know it was a little girl yet I had to find out it was a little girl right before I lost her. That was probably the hardest decision I've ever made in my life. When you have pulmonary hypertension, getting pregnant is basically a death sentence. I feel very lucky to have survived Carmine's birth, possibly Katana's through pulmonary hypertension. I would not have survived with our new baby, baby Rain, we named her. If I would've even waited another week to try and get her to be able to survive, they weren't confident at all that I would survive. They couldn't even believe I was alive by the time I got into hospital. They wouldn't even put me into labor. So, I didn't even get a chance to hold her, because I wanted to just be put into labor. I didn't want to go any other route, but I had no choice unfortunately. I had to be stoic as I possibly could in order to survive that situation for my husband and my two children that are still here with me. So here I am.

When it first happened, they tried to just start me out on pills, and that wasn't helping fast enough. They felt like if I didn't switch to the IV therapy that I would not make it. We chose to go ahead and let them put the central line in my chest and very quickly I lost even the ability to go swimming, one of my favorite things to do. I wasn't able to train anymore. I mean, I couldn't even do the dishes when this first happened. I would try to walk three rooms down to a room that was private for me and my lips turned blue. It was a very serious matter.

All of a sudden, I had to learn how to do surgical things and mix my own medicine that would be needing to be mixed every 48 hours to keep me alive and learn how to work those pumps and change my dressing. It was such a shock to me. I knew that I was strong. I'm no quitter. That's why I planned on becoming a World Champion in martial arts. I really had to muster up some strength through this situation. I found myself really overwhelmed.

The first day that my nurses came into the hospital room and they started my lesson on teaching me how to mix my life sustaining medication, I had just gotten out of my first real shower after being in the ICU and everything. It was just very hard to deal with, but I did. I also had a completely torn apart knee. I don't really talk about that very much. I was pregnant. I couldn't fix it. My plan was to wait until after I had her to fix it. I had my knee brace in the hospital while I was moving around during all this too, so that was also a struggle for me.

I was in the hospital for almost a month. There was a lot of talk going on outside my room that they thought that I didn't know about, but they didn't think that I was going to make it. I really shouldn't have made it with how severe my situation was. When they found it my heart was twice the size as it should have been the right side of my heart that is, my pressures were in the hundreds. It was very, very severe. I mean, even now you can tell that my pressure is very high. I'm even getting out of breath trying to talk.

It's a very crazy situation to know that I have to deal with this, but if I don't, then I just lose my identity. My identity is to be strong, to be stoic, and so I had to push through it. Then in the end, my team of doctors walked in and explained to me that I had inspired them in many different ways, including medically. I realized at that point that I needed to keep doing that, that's why I started fighting in the first place so that I could reach a position of influence in order to inspire people to be and do better, and that's my mission. I'm going to keep following it. Even if I have to take a different route at this point, which I do.

It's definitely a continual battle. I have used my skills from fighting to help save me during one of my right heart catheterizations, which is by the way, the only way to read the actual pressure in your heart. My heart wasn't happy. I was conscious. I only requested the local anesthetic. I refused any type of sedation, because I don't feel like my heart can handle it. I had to use my fighter skills to calm my heart down, and I did. I used the same technique as I would in between rounds of a fight, for example.

But this whole situation, losing my daughters, being put on life-sustaining medication and having to deal with this on a day-to-day basis is definitely taking my toughness to a whole new level. I have to evolve daily with it. It's something that has not been easy to get through. I know that I'm a tough individual, but I have been fighting so very hard to get through this and to get to this point to even do these podcasts, because it's just a really humbling experience. I went from being a pro athlete to not even being able to walk across the street to the gas station without needing help in a wheelchair.

Now, I'm getting back to the point where I can walk a little bit more, but it's also progressing again, so now I have to go up on my medicine, because this is a progressive disease. It doesn't stop, just keeps going. They don't technically have a cure for it. The medicine that I am on is meant to ease your symptoms as much as possible until the inevitable, whatever. I don't want to believe that that's going to happen to me. I'm probably the most stubborn individual you'll ever meet. So, I plan on being around until they find some kind of a cure and then still sticking around.

I don't believe that my body is strong enough to get through the double lung transplant that is an option for people in my situation. I don't believe that I could even sustain being under any type of sedation, let alone them doing something as severe as the double lung transplant. So, it's not really in the talks for me at the moment. I'm kind of just stuck between a rock and a hard place. I have 15 pills I have to take every day, which is also new to me because I wouldn't even take a headache pill while I was breastfeeding or pregnant, so I hate pills. I have to take these.

You can hear my pump going off during this podcast. I have to have this pump pumping directly into my heart every day, all day. If it goes off even in the middle of the podcast, I have to stop and fix it, because it's life sustaining. Everything comes with their own challenges that you have to face and be strong in order to survive with. Yes, the inevitable of it making me pass away eventually.

My husband and my kids are very supportive. Even my toddler, he understands what I have to deal with and is very cute and very sweet, how well he handles it, and my daughter too. Even with support groups and meeting other patients and this and that, no matter what, ultimately you have to reach inside to find that kind of strength to get through something like this. You have to reach inside and pull that strength out from your heart, because if you don't, you'll just fall down this terrible slippery slope and you don't want to do that. You don't want to do that. Even in a situation like we're in with life sustaining medication, you have to find purpose somewhere. You're still here for a reason, so you have to keep fighting and keep yourself here and find that reason and exploit it.

I've had a goal for years to make appearances and do speeches. I'd like to go to schools and do it. I'd like to do it in any public setting, really. I just want to share my story and awareness of what happened to me, maybe what could be happening to one of your family members and a way that you could help save them, because if it gets ignored, then it'd ultimately end up killing somebody. It could have easily killed me and my daughter if I didn't keep trying asking for help. She would've suffered a lot more than she had to. It would've been just a terrible situation for my family. So you have to advocate for yourself. You have to reach out. So that's my goal. I want to do motivational speeches. I want to go out and do speeches to the best of my ability, even though they'll probably knock me on my butt for the next two days after that speech. I want to keep doing this. I want to keep sharing my story.

The most powerful thing that I have powering me and any type of courage that I have right now is my love for my family. That is the ultimate power that I have is my love and their love for me. Besides that, I also have a desire to reach out and share that with other people. I feel like we've lost our message of treat others as you wish to be treated in today's world, in society. Things are just slipping in such a bad direction. I want to reach out and help change that for us to be in a better way. If we would just become more positive as humans, we could easily evolve so much faster.

Right now, we're just stuck in this lull space of not knowing what we're doing, because everybody is so negative and we need to get away from that. So, I want to try and help spread that message, and that is also powering me to be courageous in this and to keep pushing forward.

My name is Ashlee Gambino, and I'm aware that I'm rare.

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