PHighter Friday: Astrid

 Hi everyone!

Hi everyone! My name is Astrid and I am 22 years old. I’m a newly diagnosed IPAH patient. I was diagnosed about 3.5 months ago and I live in The Netherlands.

It all started in 2014. I was passing out while I was doing sports. I did not think about it much until the

beginning of January 2015. I started to get extremely tired and I could not walk for 100 meters without gasping for air or getting dizzy. I also had palpitations. I could not work (I work as a registered nurse at a local hospital) and I was too tired to follow my classes (I was doing a bachelor in anesthetic and ambulance studies). I had no idea what was happening to me. The only thing I knew was that I needed to see the family doctor as soon as possible to get it checked. She thought I had some viral infection and I went home.

My symptoms were worsening and I felt so bad that I went to the ER on April the 17th. After some tests at the ER they were thinking about Pulmonary Hypertension. I knew what it was because of my medical background and I was so shocked! That evening I had an emergency RHC and my mean pressures were in the 120’s. My heart was exhausted and I was in NYHA (WHO) class 4. I went immediately to ICU and started with Veletri. I was there for 8 days. My brother returned immediately from his travels in Venezuela, I knew this was serious.

They were increasing the dosage of Veletri day by day. It was a pain in the butt because of the side effects. However, the nurses and doctors at the ICU were very nice and attentive, which made everything a bit better. While I was laying over there I always stayed positive. When I heard I would be attached to a pump 24/7 for the next years or even my whole life it was hard but I was thinking that if I could live a normal life with this pump I couldn´t care less. They told me they did not know if the medication would work out for me because of my high mean pressure, so there were some serious doubts about my recovery. However, I never lost hope. In the back of my mind, I knew my story was going to be a different one. After 2.5 weeks I was discharged from the hospital and went home to my parents house.

First time riding my bike again since diagnosis!

The first week of being home I was walking the dog again. THANKGOD! I was not out of breath anymore or neither feeling my heart pounding out of my chest. Day by day it got better. The second week after being discharged I was even riding my bike again. I live in The Netherlands so we do everything by bike over here. It was so weird and above all expectations. Every time I was riding my bike again I had tears of joy. I went back to my own apartment and started living on my own again.

In July I started working again at the local hospital. Because of the things I went through I started to realize even more what being a nurse is all about. The negative thing was that I decided to quit my studies because of some serious delays. My life is pretty normal right now besides of having infusion therapy 24/7. A couple of weeks ago I had my first echo since the diagnosis. My pressures downsized enormously and my heart was in pretty good condition again. It does not seem to suffer from the pressure anymore. My pressures are still above the normal range though. I went from class 4 to 1+.  I hope to get more better in time. I also started to eat cleaner and do (basic) work-outs. It is still impossible for me to do running but that is fine with me.

This week I had some great news. My PH specialist wants me to switch from the infusion therapy to oral medication. This process takes a couple of months and I just started. I need to have a lot of patience and faith. I hope it all goes well. I am a little nervous, but even more excited to have a look at my future results.

3 months after diagnosis

What I want to say to all (new) PH patients: have hope and faith! There are better days to come. On some days life is all about dreams, hopes and visions for the future. But there are some days where life is just about putting one foot in front of the other and that is okay. We need to remember that researchers are doing the best they can for us day by day. I have noticed that new medications are being introduced every year. Hopefully these new coming medications will keep us stable.

At last I want to thank my parents, my brother, my boyfriend, my friends, my PH nurse Nicole and my PH specialist Dr. Heijdra. Without them I would not feel as good as I am doing today.