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.

Phighter Friday: Michelle R

Before I got PH I had a very active lifestyle, running, sailing, caving, climbing, hiking up mountains, and my passion, horse-riding. All my life I owned, rode or worked with horses. I would think nothing of biking 8 miles to work (running a Riding For the Disabled Yard) and back, and then going for a 5 mile run in the evenings. I guess i was a bit of an adrenaline junkie, competing cross country and show-jumping with the horses…..and often going to theme parks to ride all the scary roller coasters.

During the winter of 2009 we had a lot of snow, and one evening my car got snowed in at the stables.  I ran the four miles home in the snow, getting pretty cold and wet. A few days later I got pleurisy. I never really recovered from that. When all the snow had cleared I tried biking to work again and found it incredibly hard. I tried to go out for a run, but found I was out of breath after a few metres. I knew something was very wrong, but the doctor assured me it was down to the pleurisy and I had to get fit slowly again.

I spent the whole of 2010 trying to do just that. I walked everywhere, but still couldn’t run. Going up hills I used to run up I had to stop to catch my breath. I found working the horses really hard work, and I kept getting a  weird tingling feeling down my arms and into my wrists. My hands and feet were numb even in the summer!

Early in 2011 I seemed to be getting worse and I went back to the doctor, who thought I might have asthma and gave me an inhaler.  I pushed myself so hard to get fit I don’t know how I didn't kill myself instead. A few months into 2011 I was at the doctors for a general check up and she asked how my breathing was. As it was no better she sent me for a x-ray.

A few days later I had a phone call from an alarmed doctor, who told me I had an enlarged heart on the right hand side. I was told to be very careful and was referred to hospital. After a series of tests one thing after another was ruled out until finally 2 days before my 45th birthday the consultant said he thought I had PH and was referring me to a specialist hospital, the famous Papworth. In the mean time I googled PH as we all do and was thrown into a panic after reading I only had two years left to live!

I lost my job as I was deemed too unfit, and I put my own pony out on loan. At that point I couldn't even climb the stairs without stopping.  Papworth initially classified me as a WHO class 2/3 and started me on Sildenafil and Warfarin.  They helped a bit but I sunk into depression.

Without the horses I felt like my right arm had been cut off. I found it hard work just walking the dog round to the shop, a mere 1/4 mile away. I was even jealous of runners. I mourned the loss of my lifestyle. I applied for several jobs without success, and was in a really black place.

Finally in April 2012 I got a job at Tesco on the checkouts.  Papworth also started me on Bosentan , and those two things were the beginning of the turnaround. Slowly I started to find I could do more, walk further and felt stronger. I discovered the Facebook PH group and was amazed to find people that have lived with PH for 20 years. I began to feel ‘normal.’ again.

In April 2013 I got a job in my home town in the ice cream shop, which is physically harder than Tesco, but again the more i did the better I felt. I also got a second job in the evenings, waitressing in a bar, and walked everywhere. In my 6 minute walk tests I could do nearly 600m. I almost forgot I had anything wrong.

This year I have had a couple of set backs as I was diagnosed with Breast Cancer and the local hospital refused to operate due to the risks of the anesthetic. Lucky for me really as I was referred to the brilliant training hospital Addenbrookes only 10 miles from Papworth . I spent a couple of days at Papworth having all the tests again, and was delighted to discover the pressures in my lungs have lowered and I am now a Who class 1. I sailed through local anaesthetic lumpectomy and removal of 3 lymph nodes, making history into the bargain, and the following 6 weeks of radiotherapy. Unfortunately that caused pneumonia in October and I ended up in intensive care, which has reminded me, that I do actually have a lung condition and to slow down a little bit!!

Back in the summer I met someone local who keeps horses and started helping her out. To my delight I found myself back in the saddle, and not out of breath! I am also trying to start a dog walking business,  although I only have one customer at the moment, I find it no problem striding around the countryside, doing 3 miles or so. I firmly believe the exercise helps the condition. So although at the beginning it felt as though PH had stolen my life,  little by little I have stolen it back again!