Ashley Schroeder’s PH Story

March 06,2017

My name is Ashley Schroeder and I am 33 years old.

I never considered myself an emotionally strong person. You looked at me wrong and I would cry. I’d get angry and cry. Little did I know that soon I would learn just how strong I was.

In 2010 I was pregnant with my second daughter. That summer and fall I went out and push-mowed the lawn like every other summer. I had my baby in October and life was great. Fast forward to Spring 2011 and I fired up the lawn mower and went to town.

Except now “town” was two laps around the yard before I had to stop and sit down. I was short of breath and dizzy. I was also overweight and out of shape. I went in the house and told my husband with embarrassment that he would have to finish mowing. I tried mowing one other time that summer and again it didn’t work out. It officially became my husband’s chore.

Unless a cure is found, I will die from PH – or at the bare minimum, need a lung transplant

I should have gone to the doctor but because of me being overweight, I didn’t think it was too serious. In my mind, I needed to diet and eventually my breathing would get better when I was healthier.

My employer started a weight loss challenge that summer. I began to eat right and was successful at losing 17 lbs.

I figured my breathing should be getting better anytime now but that fall/winter, things got worse. I would come walking in from the cold and have to run up a flight of stairs to the time clock. I lost track of all the times I was close to passing out.

Then one cold March day it finally happened, my body couldn’t take it anymore.

I was checking inventory levels outside and while walking back to the building I could feel myself getting dizzy. I should’ve stopped but I was so cold. I just wanted to get back in the warmth. I opened the door in time to collapse into the building, passing out and hitting my head on a hand truck. It wasn’t the best of Monday mornings.

I went to my doctor the next day and explained my symptoms. Afterward he asked if anyone in my family had a history of pulmonary hypertension. I said no. I had never even heard of PH. He told me not to research it online and sent me away for blood work, chest x-ray, echocardiogram, EKG and holter monitor test. I got all of that completed and promptly went home to research PH.

Unless you go to a PH website or a prestigious clinic’s website, nothing good can ever come from researching PH on the internet.

The information is completely outdated. There I was at home hysterically crying because I had just read that I was going to die in 5 years. Some information was true like that PH affects the heart. Unfortunately, that discovery lead to another discovery.

As a child, I was told that my father had a heart condition and that it was hereditary. This couldn’t be the same disease though. My symptoms were much more pulmonary related. I called my aunt to be sure and that’s when I discovered the impossible. PH is what my father passed away from in 1994. It’s what my uncle currently had along with multiple people in my extended family that I had never met. One was on IV medication and another had a lung transplant. That settled it. I had primary PH and I began getting used to my new life without a definite diagnosis.

The diagnosis came the following week. My pressure on my echo was high. They estimated that I had moderate to severe PH. My doctor told me one of the best PH clinics in the country is the Mayo Clinic in Rochester, Minnesota. I packed my bags.

My own body was turning against me and I would be a slave to an IV pump.

I had a slew of tests at Mayo but the most important one was the heart cath.

My pulmonary systolic pressure was 90 which is very high. My heart was enlarged, I had severe right ventricular dysfunction and it was determined I wouldn’t benefit from calcium channel blockers. I also had a 6-minute walk test of 463 meters which is actually not bad.

Because of my test results, the following game plan was made: I started Sildenafil immediately, I would come back to Mayo in 2 weeks for a Hickman line placement to begin IV Veletri and then in August I would be back again to start Letairis and start talking about lung transplants. It was official. My own body was turning against me and I would be a slave to an IV pump.

The rest of the spring/summer of 2012 was spent getting used to my new Hickman line and its care, remembering to take my medications on time and mixing my IV medication. I was starting to feel better and even tried the elliptical after a while and it went surprisingly well.

I felt pretty confident when I went back to Mayo in August that my tests would come back positive. At some point in this trip I spoke to a doctor about a lung transplant. He looked at my test results from my last trip to Mayo since he didn’t have the current ones from that day. He told me he didn’t think I would make it 5 years without a transplant.

As you can imagine, that news didn’t go over well.

I was not supposed to improve as much as I did

I was feeling better and even used the elliptical some. How could I possibly need a lung transplant in less than 5 years?

I had 2 hours until I would meet with my cardiologist and discuss my test results from that day. It was the longest 2 hours of my life. When I met with him, the first the thing he said was that he was sorry to have made me see the transplant specialist before looking at my current test results. I was not supposed to improve as much as I did.

My 6-minute walk test increased to 614 meters, my heart had reduced in size, my pressure decreased to 43, my right ventricular function improved and there was no longer a need to discuss lung transplants at the moment.

We still added Letairis to be on the safe side, however, I had improved so much that my doctor said we could try weaning me off the IV Veletri and onto inhaled Tyvaso. That process began in February 2013 and by March I was completely off the IV. I went back to Mayo in May where it was determined that I was still doing great on Tyvaso so he removed the Hickman line. I was no longer tethered to a life line.

In the years since, I have continued to do well. My exercise tolerance continued to increase. I can work out on the elliptical, take spin class and managed to lose an additional 23 lbs. However, stairs and inclines remain my kryptonite.

At my last appointment, all of my test results still looked amazing and my 6-minute walk test even increased again to 823 meters.

This August will be 5 years since I was told I wouldn’t make it 5 years without a lung transplant. I have fought this disease every step of the way and I’m bound and determined to make it another 5 years. I no longer feel like I have one foot in the grave.

I also know this is a false sense of security. Unless a cure is found, I will die from PH or at the bare minimum need a lung transplant. Eventually, my disease will progress, my medications will stop working and I will need to make decisions that no 33 year-old individual should need to make.

This is why research is so important.

This is why we tell our stories.

We hope that we can help just one person cope. We hope that if the right people hear our stories, maybe more dollars will be poured into research. We hope that maybe one day there won’t be a need for research.

Nothing good can ever come from researching PH on the internet

One thought on “Ashley Schroeder’s PH Story

  1. Would love to make a contribution to the PHA Association. Unfortunately, I need to pay for medication. I was diagnosed with PH in 2001. I probably had it for a few years before diagnosis but my pulmonologist told me it was my asthma. Anyway saw a cardiologist who told me that I’d be dead within 3-5 years. Went to the University of Colo. Heart/Lung Center. The PH specialists were awesome and here I am 16 years later blessed with 6 more grandchildren and 6 great-grands. I’ve lived to see great progress in the treatment of PH. I’ve also said goodbye to many courageous people who have taught me and supported me on my journey. One of my special friends…just started his medical practice after being diagnosed with IPHA in his late teens. He was diagnosed 15 years ago!!!! So there is light at the end of the tunnel. God Bless these young women and all my fellow warriors.

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