My life with...

When I was born on May 30, 1987, my parents had no idea that her daughter would be sick.
The first few months after my birth proceeded normally. My parents were happy and my big sister pride everywhere presented her little sister.


My parents fell on relatively quickly that me drinking from the bottle very strained. I had beads of sweat on his forehead and after that I was always totally broken, which is thus expressed, that I always fall asleep very quickly after that.

Since the heart at that time was not yet part of routine examination after birth and the subsequent investigations, of course, no one has seen that the ductus had not closed for me.
 

When I was six month old, a heart murmur was detected by chance. However, the doctor at that time could not clearly determine this. He then said: "It is time there and then it is gone again."

To make the heart murmur clarify more precisely, my parents sent me to the University Hospital of Cologne. There began one week Long mystery.

We were ordered from one to another doctor and no one could tell what I was missing really. In addition, the doctors took their information they gave to my parents very, very careful. I must honestly say that it was irresponsible of the time these doctors do not even answer a question specifically. To understand this, one must at once in the situation my parents -or- also parents of other sick children in displaced. This uncertainty is usually worse than the fact that a child is sick ist.m

The only answers that got my parents to their questions were, "We do not know exactly what her daughter is missing, we need to make further inquiries".

These further studies included in exact only a catheter study in which they wanted to measure the values ​​of the heart.

Of course it is not easy to bring for parents his baby in an operating room and to leave it to the actions of the doctors.

By chance, my father was reading a report in the newspaper, which stated that a certain Dr. Redel with a special color Doppler ultrasound device -a could take a look into the heart. Which of course only once was an alternative to the catheter investigation.

After a little research, my parents found out that this professor Dr. Redel worked at the Children's University Hospital in Bonn.
After a few phone calls got a date.

Professor Dr. Redel could call a complete diagnosis after a single examination my parents. Pulmonary hypertension -für also called Peeping high pressure to the laity. Even the cause was clearly visible on ultrasound: A patent ductus arteriosus.

Well, that was before the house number. But Professor Redel could give me a catheter examination not save, because only so the exact pressure could be determined.

My parents felt very well cared for from the moment in Bonn, which of course made ​​the decision to catheter easier.

 

But after this catheter investigation finally stood then the value of the pressure in my lungs fixed but unfortunately this result was devastating.

120mmHg- starting at a pressure of about 50 mmHg, it is the patient rather poor.

The next question that my parents turned out, what I probably had a life expectancy. Well this question nobody could answer them.

The average life expectancy of a PH patients is now at 2 years after diagnosis and with today's medications.

At that time did not exist these drugs and here comes the next question:

"How do we treat it?
Answer: "With heart pills". The only drug that I got was Lanitop -fürs heart. I also had to make regular inspections not exclude further catheter examinations, to the hospital.

With one year then came the first major engagement: A Ductusbändelung.
Does that mean that the open ductus was made ​​smaller.

Then All thing was still open. Of course they tried to close the ductus completely, but due to the high pressure and the then limited resources, this was not possible. Any kind of spiral balloon and what else were so, simply does not hold.

The Ductusbändelung went for it without complications, although the pressure did not change.

I had after all a very normal childhood.

on left.: I, Steffi, Sabrina

When my sister Sabrina was born in November 1988, I was the big, proud sister.

Selina

But with a little sister, it should not be. 1991, in December, just one day after the birthday of my big sister Steffi, our youngest Selina was born.
 


My family was and is still perfect, although it's still become a lot bigger ...

My kindergarden did not differ from that of other children. I was playing, tinkering, gymnastics, climbed, and made all sorts of nonsense just like any other child.

I never read master of my illness.
And it is to this day still is.

I never felt different.
Although I was always a little slower than everyone else, but that limited me in any way.
 

 

I saw Bonn after lung biopsy in 1939 only every six months and for 2-3 hours to check the dates.










Until now everything is in control appointments, since 2009 every two months, checked what is important:

-Sauerstoffsättigung
-EKG
-Blutdruck
-Ultrasound From the heart
-Blutwerte

This is the standard program, which I will go through me to this day.

But hey, that's not really bad.

As Dr. Redel, I think it was around 2000, retired, of course, he introduced us to immediately succeed him: Professor Dr. Breuer. A nice man who could come up immediately with a new drug. Ventavis! The newest of the new, the breakthrough in the research of PH.

A drug that had to be inhaled every two and a half hours and six times a day. There should, however, the lung vessels widen.

Sounded not bad in and of course my parents decided. The only disadvantage would be that the ductus should be closed completely. Should Well, the funds that should do it, had been finally invented and as this during a catheter intervention, yeah right again a catheter, I can not count how many scars I have of it ... done that was not a real problem.

In addition, the drug was tested directly during surgery.
As well, I leapt on it.

I was whole three weeks so hospitalized.
But in November 2001, the ductus was finally closed after 14 years.

However, I can not tell if this is the time been the right decision in retrospect. My life was determined from then on by 6 times daily inhalation.
Well, it took only 5-10minuten so, but still pretty annoying for a 14 year old. Also, I was allowed to go along on any sport.
It had become easy to strenuous.

The next two years until I was 16, were not easy for my parents.

Of course, I hit puberty and robbed in front of all my mother's last nerve.

I had obviously not thought about how inhaling would be in school and even though I tried very cool to deal with it, bothered me the looks that were thrown at me wildly. At the time I was in seventh grade.

This went so far that I in school is almost no longer inhaled. I've thought back then, well, what does not know the mom does not make them hot ... stupid only if the dear mother at some point in the room finds a bag full of ready syringes containing the drug ... I think that would not have come this far if I would have felt without medication differently than with. But since this was not the case was not inhaling of course always on.

However, I thought I was by this huge noise that there was, therefore, then it always to inhale.
 

And so I made over the next three years, with inhaling, my high school certificate in qualifying for the advanced level.

 






From 18 I hit all the decisions in my own life.

So I first went to my doctors times and have asked them to give me a medication that I should already get 16.

However, we then heard again and again of bad side effects that should cause this medicine and therefore my parents decide against it. This drug was Tracleer. Tracleer should lower the pressure in the lungs.

My conclusion, after almost eight years with these tablets that I never had any of the listed side effects. Lowered the pressure has, however, until today either. But he remains stable. What indeed is what ever.

After my 10 degree turned out for me the question, what are you doing now.
So I go with my friends and my sister in the upper or I'll do an apprenticeship?

I knew that I could not do the job with my illness, I wanted an office job and I was really bored.
My dream was always himself to study medicine, so advanced.

Anyone who has ever been in high school, know that it is not easy to catch absenteeism again and I in the fall and winter months had plenty of it, so I repeated the eleventh grade. Of course, I had the same problems in the winter as in the previous year in this grade. The upshot was that I was not moved due to a single note. Of course I complained about it. I asked the former scale, as that's probably if someone writes in the first half of three ones in a tray and fives in the second half three. Of course everyone knows that the notes are all taken together. At the end there is at most a 4 out at. This result I put also the head of the upper school before then, but this is simply answered -the well, although I had most of my teachers behind me, the result remained the same, and those familiar with the advanced level, knows that in the high school may repeat only once. Consequently, my school career was thus ended for me.

I can honestly say that this one certain teacher has brought me to my future as a doctor. Thank you Mr. H ***.

Well another issue. After a year of thousands of applications, as really everything, I was still unemployed. The problem was simply that the various employer as soon as they learned of my illness Hat â € I was still not really restricted, always really sent very nice rejection letter.

Of course no one would admit it.

Finally, I gave my mother the employer an apprenticeship as an office clerk in his operation. Of course I was happy about the training course, even if it was not the job I had wished for.

to be continued in Collapse



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