‘Living with PH has made me a better person. I take time to appreciate all the little things in life, and I don’t take things for granted.’

Stay-at-home mom Jessica Calkins, 37, awaits a double lung and heart transplant for her pulmonary arterial hypertension (PAH). She lives in Yakima, Washington with her boyfriend Francisco, their blended family of eight children and a dog named Cleveland. In her free time, Jessica enjoys taking her Volkswagen bug to shows, watching Francisco race cars, camping, and making memories with family.

By Jessica Calkins

PAH has changed my life. It has taken so much from me as an independent woman and a mother. I went from being hard-working and independent to disabled and living with challenging limitations.

I have difficulties doing everyday tasks such as cleaning and running errands. My small children want me run and play with them, but I suffer with major fatigue, dizziness and shortness of breath. I have trouble walking up inclines and stairs and bending.

My oxygen levels are always changing, so I have to be hooked up to a tank. My IV medication is administered 24/7 through a port in my chest. The port prevents me from doing some things I enjoy with my kids, such as swimming. Every day is a struggle mentally, physically and emotionally. Having an invisible disability makes it difficult for others to know how much I truly struggle and push myself to things.

Pinpointing the problem
An echocardiogram and right heart catheterization showed by heart was massively enlarged in 2018 and I was diagnosed with PAH and right heart failure. I was terrified. I had a hard time even talking about it. My biggest fear was not being there for my children to grow up.

My doctors assumed my PAH was related to my former methamphetamine use. I had been clean and sober for almost five months before my diagnosis, and I haven’t used meth since then.

Moving forward
I decided to be listed for double lung and heart transplants, and I’m doing whatever it takes to get listed so I can have a second chance at life. Every day I wake up and can keep fighting is a blessing. I won’t let PAH get the best of me, and I’ll continue to live life to the fullest.

The transplant process is difficult and at times seems almost impossible. I was told my body mass index (BMI) had to be at 30 for the transplant team to consider me. That meant I had to lose more than 60 pounds. My first thought was, “I can’t even breathe. How do they expect me to exercise and lose weight?”

I changed my lifestyle and eating habits. I measure my portions, count calories and munch on healthful snacks. Those changes have helped me drop 63 pounds.

With hard work and dedication, you can accomplish goals you put your mind to. Now, I’m going to get listed, and it means the world to me to have a second chance when the time comes. It won’t be easy, but any time I get to spend with my loved ones is worth it.

Finding support
I’m an active member of several PH support groups. It helps so much having other people to share experiences with. The Pulmonary Hypertension Association [link to support group page] is a great place to start. I no longer feel alone and my support group friends help me get through tough times, stay positive and have hope.

Although I struggle, I will never give up. I try to maintain a positive outlook on things. Living with PH has made me a better person. I take time to appreciate all the little things in life, and I don’t take things for granted.

I have found the love of my life, share six kids with him and have two of my own. We have fun together, and I have a loving, supportive family and lifelong friends.

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Jessica Calkins