I’m Aware That I’m Rare: Brittaney Valim (458)

the phaware® interview

In this episode, Brittany Valim shares her experience with pulmonary hypertension and her journey towards a heart and double lung transplant. She now lives a fulfilling life as a mother, student, and aspiring nurse. Brittany encourages others to embrace life and ride the wave, appreciating the rarity of their experiences.

My name is Brittany Valim. I am 34 years old, and I was diagnosed with pulmonary hypertension in 2010. In 2009, I decided to go on a big hike, they’re called the Punch Bowls in Santa Paula, California. I noticed walking up to the trail, which is a really steep hill, I started getting out of breath. I thought it was just because I just had a baby two years ago and I’m overweight. We kept going on this trail. The more and more I kept going, the more and more I started losing breath. I was holding onto tree branches to climb up these hills. Finally, when I got down from the hike, five hours later, I decided that I was going to relax and just figured my body was just not ready for that. I decided that I was going to go to the doctors.

I was wrongly diagnosed for a year with high blood pressure. I was rushed to the ER after many other ER visits and I was told I had pulmonary hypertension. They sent me home to go see another doctor who disagreed with the emergency room doctors. A month later, I was rushed to the ER again, and that’s when I was kept in ICU and was told that my heart was so bad that I could have possibly died.

When I was in the ICU, they were trying many different IV medications. I remember them trying one of them. I remember getting so sick that we could not do it. I think I was in the ICU for about two to three weeks. My hardest thing was not, “Oh my goodness, this disease I have,” it was more, “My son is at home, and I cannot see him,” because the swine flu was pretty big at that time, so no visitors could really come in.

There were people passing away all around me, so that was freaking me out and giving me anxiety. Then, at the end of my stay, we finally figured that Letairis and sildenafil would be my treatment from then on out. I have idiopathic pulmonary hypertension. They have no idea how I got it. I believe that it was from my son. I can’t quote that, no doctor has said that’s what it’s from. But when I look at pictures from after me being pregnant until I was sick, my neck was pretty swollen and so was my face. I just took that as maybe my heart had a lot of fluid around it, and no one really saw it before then.

I was 21 years old, and I wanted to do what every other 21-year-old wanted to do, and that was going dancing and hanging out with friends. So, those first years, actually, for a long time, I struggled with having this diagnosis because I was in my 20s, and I just wanted to hide everything under the rug, so I acted like everything was fine. I went out and probably did way too much more on my body than I should have, but I was still taking medication.

In 2018, I got sent to the ICU again. We used to tell my son that it’s just, “Mom needs a tune-up. Mom needs a tune-up.” I was put in there, and my doctor and my nurse at Santa Barbara Cottage Hospital sat me down and told me, “Hey, look, we need to try something new.” They came up with the IV meds, the sub-q and Tyvaso at the time. I was in my late twenties now, and I said, “Oh, I want Tyvaso.” I was going to beauty school, so I didn’t want a pump. The thought of having something attached to me all the time just was not for me. I did good on Tyvaso, but I hated taking it. After I started Tyvaso, I was able to go to the gym. I was able to kayak with my family at that time, but I was just not compliant with taking it. It was just too bulky. I had to put it in a bag and everybody always stared at me when I was taking it. I was over it.

I decided to tell my doctor that I did not want to do it anymore, and I was no longer compliant with it. He suggested that I do sub-q or IV. I had a serious talk with my nurse, at that time, at Santa Barbara who is amazing, she’s my saving grace. She told me that sub-q would be really hard, and that’s when I decided I want the intravenous line. From then on out I was taking it and it was making me very sick for a long time.

I finally realized that, hey, I need to change my life and what I’m doing. When I got sent home on oxygen that same time, the pump isn’t what scared me so much, it was the oxygen that got me shook. That’s what caused me to say, this is the real deal now, this could be your life forever being on oxygen and that’s when I decided to change my partying habits, my cooking habits, my exercising habits. I was ready to change. IV meds, did save my life for a while.

For about five or six years, I was on IV meds, and in 2018 when I moved to San Jose, California from where I had been before, I started noticing that I was just not breathing well. I couldn’t work as much. I was getting sick more often. We started talking about the transplant list. So in February, in 2020 is when I officially got put on the transplant list. I had to have my mom come in and help me live, because there’s times I couldn’t even get out of bed I was so weak. I needed help with my son. Just house cleaning, I have two dogs. But it still didn’t hit that, “Oh my goodness, I’m one day going to be on a table and I’m going to get lungs and a heart.” It didn’t really hit me yet.

When I was first diagnosed with PH, I was really alone. I didn’t know that there was these groups online. Every time I went to a support group, they were all older than me. Everybody was older. I just didn’t feel connected to anybody, so I felt like very alone. My mom, we were fighting a lot, because she would tell me things that I shouldn’t be doing. I was telling her, I’m a grown woman, I know what’s right for me. I know when to take a break. It was just really hard at first and towards the end, that’s when I finally felt support from my friends, family. Then, I started becoming closer to people on Facebook. Then I started reaching out to people on Instagram. Then, I backed away for a little bit because I was starting to face the realities. I was going through so many things. I thought I was having a heart attack at times when it was just anxiety.

I had a lot of support, especially from family. I had family and friends were more supportive than I’ve ever thought. I had so many cheerleaders of people who I had been friends with for years on Facebook and Instagram. They were just cheering me on every day. That’s when I started showing my stages of this is me today, this is how I feel.

One weekend, I was with my family, it was my best friend who is my cousin, it was her baby shower. That following Monday I got a call saying, “Brittany, we noticed some of your symptoms and some of your testing, we would like you to come into the hospital. We just want to check you out.” I said, “Okay.” I went in. They did more testing. They let me go home. I got a call on a Wednesday and they said, “Hey, I want you to enjoy your weekend with your family, but on Monday, I think it’s time to put you on ECMO if we don’t get a call before then.”

That following Friday morning, I got woken up by my boyfriend and he’s telling me, “Brittany, they’re calling you. They’re calling you.” I said, “Why are you lying to me? Why are you lying to me? Why would you even say something like that?” He said, “No, I’m serious.” Because for some reason I turned my ringer off. My mom came running in my room and she’s like, “No, Brittany, you need to call them back.” I called them back and then that was the reality of me getting a heart and lung transplant. This was at five o’clock in the morning is when I called them back. They told me that I needed to be at the hospital by eight o’clock.

Well, when I got the call, I sat there in awe for a second, because my son was still sleeping, and that was the hardest thing for me to do was leave my son. I wanted to wake him up. Well, I tried to, I don’t know if anybody’s ever tried to wake up a 13-year-old. They refuse to wake up. I tried and he was just kind of like, “Okay, okay, bye.” Of course, being a mom and my son is my rock, that was really hard. I decided I wanted to take a shower, because I wanted to be clean. That’s when we started packing my bags. But my mom said if there is anything else I needed that she would definitely pack a bag for me.

To get to the hospital, it was about 40 minutes. Since it was during COVID, only one person can take me up to the room. My mom chose my boyfriend to do that. I was sad about that, but I was really happy, because me and my mom were very close and I know she was stressing out. So if we had been together, I feel like I would’ve gone into the OR with all of this anxiety, because I knew that my mom was hurting. I wasn’t even thinking of me. I was just thinking about how sad my mom, but happy she was and so scared was. I couldn’t even think about how scared I was.

When they were ready for me, they allowed my boyfriend to wheel me down in a wheelchair to the OR. I remember talking to all the nurses. My stomach was just in my throat. They were asking me what type of music I wanted. I told them I don’t even care what kind of music there was. I remember joking with the nurse, sitting on the table staring at this white ceiling with the big hood light. I remember telling her, “Has anybody ever told you no, nevermind. I need to go.” She was like, “No, nobody has.” I said, “Well, I might just be your first one to want to leave the OR.” We kind of laughed about it and she gave me encouraging words. As soon as that phone rang, I heard one of the nurses in the OR say, “Okay, it’s time to go.” They told me to count backwards, and I don’t even think I remember counting.

It was a 12 hour surgery. I got out. I think it was three hours out of the surgery I started bleeding into my lungs and they had to take me back to the OR. They told my mom that it is pretty common for that to happen. After that, everything was pretty well except for waking up and realizing you cannot see. That was the hard part. I had TED’s disease, so I woke up with very, very blurred vision. I couldn’t see who my nurses were. I couldn’t see who my doctors were. I couldn’t see where my mom was. I couldn’t see anything. My eyes were just so blurry I could not see. In the end, we think that it happened to be with so much trauma on your body that it caused me to have retinal detachment in both eyes.

Within these three years, because my transplant was in 2020. My right eye is pretty good. I still can’t see very well through my left eye. I think that’s just damaged for good. My life has been forever changed. I did have a bump in the road, of course, diabetes. Diabetes comes with the territory of transplant, but mine has stayed with me. I got put in the hospital, I believe it was six months after transplant. I was just not feeling good. I was throwing up and I finally called my team because my mom, of course, made me, and my boyfriend was like, “Yeah, you do need to call the doctors.” I did. I went into the ER and my blood sugar was at 650, my glucose.

After that, I started realizing, okay, I definitely need to eat a lot better, which I was pretty much doing anyways because you’re on so many restrictions out of transplant. You have slow emptying of your stomach. You have all of this stuff, so you can’t eat fiber. Your potassium might be too high. So you’re trying to figure all this out. I remember being on a high dose of steroids. I actually yelled at my mom, in one of the grocery stores, because I didn’t know what to eat anymore. I just told her I wanted a starve and not eat anymore. But diabetes was my only bump in the road.

I consider myself very lucky. I am the mom that I’ve wanted to be. I wish I can go back and be this mom back then with PH, but it was obviously hard. I am going to school now. I am a full-time nanny and I take ballet. I’ve been a dancer for a very long time. I did it in high school. I just always loved to dance, and I finally took myself to the JC here, and I decided to do ballet for fun.

If I could give advice to someone in their twenties or just anybody in general or to my 21-year-old self, I would say ask for help. Find other people who are like you, or people going through the same thing as you, because they really do know what you’re going through, emotionally, physically, they do. I know everybody’s tolerance level for pain and emotions are always different, but you need someone to talk to. It’s really hard to do this alone. I tried it and it wasn’t the greatest.

With a PH diagnosis, I didn’t really live day-to-day. I didn’t think of myself as passing away. I never thought about that, because I don’t know if it has to do with me being a mom or not, but I just could not fathom not being here. I would fight to stay here just for my son. After having the diagnosis, I still have a great outlook on life. I ride the wave, definitely ride the wave.

I now go to school and I’m going to school to be a nurse, and while I’m waiting for the nursing program, I would love to get into med school. I plan to be an endocrinologist. I’ve never been able to think about school, it was always, “Am I going to have enough money? How am I going to work? Can I work? Am I too sick to work?” Now I don’t have that anymore. I don’t have that, am I too sick? I don’t feel sick anymore.

My nurses, I have to thank. There’s one in particular, and if she listens to this, she knows who she is. She was not just a nurse, but she did above and beyond. I’m sure there’s nurses that are great out there, but she still my cheerleader today.

My name is Brittany Scarlet Valim, and I am aware that I am rare.

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