My life with pulmonary arterial hypertension and rheumatism, a patient story

I’m B J-N , 42 years old living with my significant other. We don’t have any children.

In my childhood and youth I was always very sporty and active. I’m into athletics, children’s gymnastics and finally even competitive gymnastics. I started horseback riding when I was 13. But even then I was always more susceptible to illnesses than, for example, my older sister or classmates.

With the start of training at 16 as an industrial mechanic, that changed for reasons of time and interests. At that time I was active in the youth fire brigade. At the age of 19, I had the final exam of my training, which lasted 2 days, 2×7 hours. The 1st day was okay, but I can already feel it. The second day was very exhausting and after the lunch break I just gritted my teeth and hoped that it would soon be over and I could go home to my bed, everything hurt.

This is where my medical history begins.

In the meantime I switched from the youth fire brigade to the active fire brigade and would have had practice that evening, but since I could no longer walk it was cancelled. The next morning I wasn’t feeling much better, so I went to the family doctor. In the blood count, the rheumatism markers were much too high, so anti-rheumatic. It was a constant up and down for about 2.5 years. When I was feeling bad, the anti-rheumatic drug was dosed higher, then lower again, or with a different composition. During that time I did a lot and tried a lot. Homeopathy, physiotherapy, physiotherapy and then I got referred to a rheumatologist, but nothing really helped. The rheumatologist only said it was rheumatism, but couldn’t say anything more precise. He then just prescribed me cortisone, but I felt better with it. My specialist in physical medicine/orthopaedics suggested that I go to rehab when I was 21. After the first rejection because of not enough downtime, she wrote me off permanently until the rehab was approved.

In rehab, the doctor who looked after me finally got behind it and made sure that I was given a precise diagnosis. My rheumatologist had written the suspicion of SLE in the diagnosis section from the 3rd doctor’s report, but he never told me and didn’t have it clarified in more detail. That happened after my rehab. The diagnosis was confirmed and I could finally be put on medication. Diagnosis at that time SLE with lung and kidney involvement. I continued to receive cortisone but also an immunosuppressant.

Of course it was a shock at first to be chronically ill, but I was finally able to learn to deal with it and was no longer torn between hope and fear. I got along with it quite well. My medication was changed a little every now and then, but otherwise I was doing quite well. In terms of work, however, it was an up and down. I had a lot of changes, was unemployed and even slipped into Hartz 4.

In 2009 I had acute liver failure due to antibiotics and SLE was never ruled out.

In 2012 I came to the Böllinger Group via a personnel company and came to HPP there. It turns out quickly for me, this is the jackpot. I was doing very well, I was hardly ever sick, I enjoyed my work and my colleagues were just great.

At the beginning of 2013 I met my current partner again (we were in training together). I was taken over by HPP in mid-2013.

6 weeks later at a check-up appointment with the cardiologist then the shock, suspected diagnosis of pulmonary hypertension. The ground has been pulled out from under my feet, at least that’s how it felt. Another 6 weeks later on September 16th, 2013 I had my first appointment in Löwenstein with Dr. Steel. Unfortunately, he could already see it in the echo and confirmed the diagnosis to me. On September 19th, 2013 I had an appointment with the RHK.

My readings back then: SPAP 115 mmHg, the right ventricle was twice the size of the left.

Further progress according to the doctor: unable to work until further notice, application for rehabilitation if the values have improved, application for the severely disabled ID card, after receipt of this application for the disability pension.

I was also told not to get pregnant during therapy because it would result in an abortion. Furthermore, I should rather do without my own children anyway, because I would be playing with my life. It was all like a slap in the face to me. I had finally arrived where I wanted to be, a secure job and a partner with whom I can very well imagine having children.

It all fell down like a house of cards for me.

But Dr. Stähler also recommended that I join the PHe.V., because there I have the opportunity to ask questions, to exchange ideas with other affected people and thus possibly come to terms better with the diagnosis. I did this and quickly realized that it really does me good to go to patient meetings.

Since the beginning of 2018, I have been involved as much as I can with Caro and Antje in the association for young patients.

In December 2013 at my control appointment, my values were already significantly better. SPAP 53 mmHg, my right ventricle shows that it is getting smaller. After another conversation with Dr. Stähler, because of a pregnancy and my own children, I decided to have myself sterilized.

Unfortunately, the company gave me notice at the end of December 2013, but with the addition that if I am able to work again, then they will hire me again.

In March 2014 I had myself sterilized. In April/May 2014 I went to Heidelberg for rehab. At the beginning of June 2014, I started working at HPP again with the reintegration.

My life today:

I am doing well. My medication is well adjusted and my values are stable.

I work full time in a 2-shift system at HPP as a CNC machine operator.

In my free time I go horseback riding 2x a week.

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