Jasmine Wells - phaware® interview 553

You Can Grieve and Still Fight: Love, Loss, and Living with PAH

She cried for the life she lost. Then, she fought for the one she has. PAH patient, Jasmine Wells discusses what it really means to grieve the old you while finding purpose in the new. From navigating relationships, infections, and fear of transplant, to leading support groups and fighting misinformation.

My name is Jasmine Wells. I grew up in Jackson, Michigan. I moved to Texas when I was married. Then, I moved back with my ex to Michigan. We were living in Grand Rapids. I was first diagnosed, it was a misdiagnosis of cardiomyopathy. So I went on for a couple years. After we got divorced, I got diagnosed officially in December, 2014 with idiopathic PAH. So now I’m living in Belding, Michigan, just living with PAH on the IV.

I was getting a lot of chest tightness. I got short of breath really easily. I was always fatigued. I thought it was latent to my menstrual cycle. As these symptoms went on, I remember it clearly. I was standing in the shower and the steam just made it so hard to breathe that I had to sit down and just turn off the water and I’m yelling to my ex- husband, “I can’t breathe, I can’t breathe.” He’s said, “All right. I’m taking you to the hospital.” So he took me there. I had to walk around the nurse’s desk in the middle of the room and my oxygen levels just plummeted within like a couple of minutes of walking. Exertion just killed me. After a couple of days, they decided that my diagnosis was cardiomyopathy.

There were a couple medications that I took and it kind of kept it at bay for a while. Then in 2014, it had progressed to the point where I was back to being short of breath, being fatigued, the chest tightness. My now boyfriend took me to the same hospital. When I got there, within about 15 minutes, the doctor who was on call said, “I got to call this other hospital, because we can’t treat you here. They’re going to do it so much better.” So I went by an ambulance to Spectrum Health now Corewell Health, that’s where they have their main pulmonary team along with the transplant department. So I was finally officially diagnosed with idiopathic PAH in December, 2014.

I went through the seven stages of grief and I was completely in denial. They could tell me all day, every day that the arteries and my lungs are not opening correctly and that all this fatigue and shortness of breath and chest tightness if we put you on IV VELETRI. That was my very first therapy with sildenafil and Letairis and then Lasix. I was there in the ER for three weeks. I was in complete denial. I was like, “I’m not going home with this line. I don’t have to mix my own meds.” Then, it just hit me like a ton of bricks that this is going to be my life, the rest of my life. So I had to figure out how to live with a line coming out of my chest.

When we got home, my boyfriend is actually the backup for whenever I have to mix cassettes or change my dressings. He doesn’t do it often. I’m pretty competent to do all of that, but he was assigned as my backup. The home nurse came for about three days and was monitoring, showing me how to do all of this. I had a doctor, my first doctor. His bedside manner wasn’t great. I just couldn’t relate with him, so still I’m in denial with this doctor.

Throughout my time with this doctor on IV, I continued to get staph infections in my bloodstream. It started impeding my heart valve. Because of the level of care that I was getting, I felt like I could get something better. I refused to talk to him when I had to go to the hospital for another infection. But when you have an infection in your central line, what they’re going to do is yank that central line out and they are going to place a PICC

line in your arm and it has two different openings. You have one running your IV VELETRI through it, so nothing else can go in it. And then they have another port where you have to inject antibiotics three times a day. It’s just so overwhelming. You have to go to the hospital, have them change the dressing. It was itchy. It was awful. I hated being on IV.

Then, when I decided that I didn’t want to get care from my first doctor anymore, I refused to talk to anybody in the hospital. Then, his colleague was on rounds because it was a weekend. I remember him coming into my room and saying, “I will take care of you. I will become your new doctor if you will talk to us so that we can help you.” So I got a new doctor and I had him for about three years. The problem is that I was still in denial six years later. I never asked questions. I was very nonchalant about all of this, and he never explained anything, like my lab results. He didn’t get a right heart catheter done on the regular basis. It got to the point he transitioned me to Sub-Q because of the infections.

I was on Sub-Q for about three years. During that timeframe, because I didn’t have this huge bulky pump. My mentality was a lot different. I was working out. I was walking three miles a day. My mental health was really good. Everything was stable. I begged to go to an oral medication. And he prescribed me Orenitram. I was on that for about a year.

Throughout that time, my health just plummeted because Orenitram is so heavy. I have never been to so many specialists, like a gastroenterologist, to the chiropractor, because of all of these issues that I was having with the side effects. They were wicked. Nothing over the counter touches them and even prescribed prescriptions, there’s not a lot that take away the side effects. It was a vicious cycle, because I could only get to a certain milligram and then the side effects would ramp up and then I’d have to decrease the Orenitram, but then I’d be in this vicious cycle where I’m symptomatic all the time because I can’t get to a good dose to alleviate that to feel good again, to breathe better.

I begged my doctor that I wanted to try Uptravi. I told him that if Uptravi fails, then I’ll go back to Sub-Q. He agreed and I went on Uptravi. I did great on that and my mental health was great. My physical health was great. Then, it just stopped working. My pressure skyrocketed and I had to request a right heart catheter, because he didn’t order it, but I knew something was wrong. You really learn to listen to your body with this illness, like it becomes second nature. If there’s something just a minuscule off, I’ll sit there and I will try to figure out what med did it. Is it a combination of meds? Do I really need to call the doctor? Is it really that big of a deal? We had the conversation over a telehealth visit and he told me that my pressures are so high that I have to go back to IV and I didn’t get a choice to go back. It was either that or transplant. And I’m completely against transplant.

So now I’m back on IV. That was January, 2024. I remember laying on the table and they’re putting the tent over me and they’re getting the area cleaned and everything and I got this flurry of activity of people around me and I just cried, because I was so upset

that I couldn’t live my life without having something in my chest. When I got out of the hospital, I requested a new doctor. So this is my third doctor in 10 years and I’m back on IV VELETRI. But to be honest with you, I kind of adopted the mindset that I know what’s already happened with IV VELETRI because that’s what I was first on, so I knew what to expect. That completely changes my perspective of how I go about living with this.

It’s more positive. I feel better mentally. I have gotten things to help me alleviate the burden of the pump, like bags and how I carry it, how to mask it. I get different dressings. I’m on a Facebook support group for Sub-Q, but I’m a moderator there, because I feel like when people have experienced this, they need to share their story because if someone isn’t saying, “I want to hear what you have to say,” they’re thinking it in their mind. If I can help somebody overcome this, because it really takes a lot. It’s a mental toll, because you’re constantly concerned about it. Are you going to get infection? Are you doing everything correctly? Have you mixed the cassette evenly?

I think over time, I’ve just come to this point psychologically that I’m okay with this. I’m doing well. I can’t be mad. This is a part of my journey. Then, I started Winrevair. I did my second shot yesterday. I refuse to be optimistic about Winrevair. Until I see concrete evidence in my labs, in my walk, that’s when I’ll start getting optimistic that it’s working. But until then, I know this is a part of me and I’m okay with that.

I have a friend who was an admin in the Sub-Q support group. He’s always told me that I have a powerful voice and I tell it like it is when I share my experiences on the board. I want others to know that you can grieve. Go ahead and grieve for the life that you had. There are days that it just hits me like a ton of bricks and I just cry because I get upset in my head that, oh, I can’t go swimming. I have to wear a big dressing over my other dressing to make sure it doesn’t get wet in the shower and just little things that’ll crop up that’ll make me really sad. But that’s all part of the process. I think people need to understand that you can grieve for the old life and it’s completely okay to do it.

But I wanted to share my story, because I was on Sub-Q and even though I’m on IV, there are a lot of people in that group that have transitioned to different medications. I just feel like I need to tell my story. Or if someone says, “Hey, how do I take a shower? What do you guys use?” I like to share tips and tricks with the IV. I actually just posted on the group chat that I had my student loan debt erased. The Department of Education has a program for those who have a disability, and they will monitor you for three years. They will decide whether or not you are not able to hold down a job, that the wages aren’t going to be substantial enough to pay off your student loan.

I thought that was really, really important, because we don’t talk about that. I felt it was important to share that part of my journey with people, if they have student loan debt because they’re already burdened by medical debt. If I can alleviate a burden, that’s pretty much how I have to think about that when moderating a group. I also have to moderate and be careful of the way that I portray things on there. I have to make sure that I’m monitoring that there’s not any misinformation going around either. Because when you have a chronic illness, you can really get inside your head and you can spiral

out of control just by sitting there in your head thinking the worst thing possible.

I would love to advocate for legislation for this. I really feel like I need to be an advocate at this juncture, because I’ve gone through four main therapies that have all failed, so I can reach a larger group of people by what medications they’re on too, because I have that experience.

My name is Jasmine Wells and I am aware that I’m rare.

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