BVMED, the German national medical devices association, has initiated a campaign to raise awareness about medical devices and empowering patients to be body proud, despite having a medical device. We have translated extracts of Peter’s story as part of European MedTech Week. To view all the stories, click here.
Why are you supporting the “Body pride” campaign?
To begin with, I had to think it over thoroughly. I thought: once thousands of people see you on a poster with your backpack, they will become pretty used to it. I also wanted to reassure others; show them that you can live well with such an illness and cope with your everyday life.
What do you suffer from?
Since birth, my intestines haven’t worked as they do in healthy people. They only absorb small quantities of nutrients. This malfunction leads to further extreme complications. I no longer have a large intestine. It was surgically removed when I was barely a year old.
When was your illness diagnosed?
As a baby, my mother was still nursing me and everything was fine. However, things took a turn for the worse once I should have been taking solid food. I would often vomit and had stomach pains. That is why I was often hospitalised. I underwent surgery repeatedly because the doctors could not really establish what was wrong with me. At first, they thought that it was due to an intestinal obstruction, which was not the case.
Since when have you been receiving parenteral nutrition?
For a long time they tried to feed me naturally. However, when I was three years old, only parenteral nutrition could improve my general condition. And it worked: artificial nutrition made me better again. I need this to feed me nutrients and to compensate for my loss of fluids.
How does parenteral nutrition work for you?
I have a port catheter that is implanted under the skin on the right side of my chest. It is a type of chamber that I must puncture through the skin every evening with a special type of needle. A tube leads from this chamber (that is attached to the chest muscles) into my heart’s right atrium. The intravenous drip flows there. I puncture myself every night and the intravenous drip normally runs into my body for twelve hours. I remove the needle in the morning and apply a plaster; the parenteral nutrition is then completed.
Is the needle puncture painful?
It’s not really painful because I only need to puncture the upper dermal layer and the silicone of the port chamber. Since I puncture myself every day there, the dermal tissue above the chamber is no longer so sensitive.
When do you wear the backpack and why do you do so?
There’s a pouch in the backpack containing the nutrient solution. I wear it when I’m receiving an infusion when I’m out and about.
It’s not as you imagine it is – that you have to push a stand around with the pouch attached. The infusion pumps used to be really large, a couple of kilos. I only have a small pump now, only a couple of hundred grammes, that fits nicely into this backpack. I also have a spiral hose that extends and is flexible. In this way, during parenteral nutrition, I can wear the backpack and go everywhere and even put it down and move around a few metres around it. I am far more mobile with the backpack than I was in the initial years of my illness, when such a thing didn’t exist. It makes life very easy.
Where do you get the infusions from?
The infusions are delivered from the manufacturer to the pharmacy, and they bring them to me at home.
What does the parenteral nutrition contain?
The infusion provides me with my energy. It contains everything that I need to live and that a healthy person absorbs from his food: water, electrolytes and minerals such as sodium, calcium, magnesium, but also glucose, amino acids and fat four times a week. In addition, I inject myself and take vitamins when the infusion is connected.
Can you digest solid food?
Yes, I can eat normally but only a limited level of substances reach my metabolism. Generally I can’t eat as much as healthy people because my intestine doesn’t work so quickly.
Many say to me: once you receive an infusion, you’re full. But that has nothing to do with it. When my stomach is empty, I’m as hungry as any other healthy person. I’m fed by parenteral nutrition, which means that the artificial nutrition bypasses my digestive tract and arrives directly into the blood. And food is of course a pleasure and I like to cook. That’s why I’m really glad I can eat properly.
What role does parenteral nutrition play in your day-to-day life?
Every day is normal for me; in the evening I insert the infusion and remove it in the morning. Then I feel like any other healthy person. I go swimming in summer, I hike and cycle. I can partake in sports normally, I just need to watch that I don’t overexert myself. I’m not quite as fit as others, but it doesn’t really affect me. Overall, I would say that my quality-of-life is very good. I’m very happy that I can live as I do.
You finished secondary school with A grades! You’re studying medicine at the moment. Did the choice of your discipline have anything to do with your illness?
Definitely, because of this I’ve always been involved in medical issues and am very interested in the topic
Does parenteral nutrition influence your daily routine?
I’m a normal student, except when there’s a party in the evening. Then I am always in a dilemma. Shall I go there with my infusion, i.e. my backpack? Then everyone will look at me. Or I‘ll go there and not stay long and puncture myself a little later. The daily infusion must last twelve hours, but it doesn’t matter when this takes place. Or I stay at home in the student house and not go to the party.
How mobile are you? Are you able to travel?
If we have fixed accommodation on holiday, parenteral nutrition is no problem. We just need to ensure that the infusion is refrigerated during the travel. We have rechargeable electric cool boxes with good insulation for this. We need a refrigerator when we’re on holiday. It would be hard for me to be on holiday and stay in a different place every day, because the infusion must always be refrigerated. I also need a reasonably convenient place to carry out punctures: table, chair, and sufficient lighting. So I wouldn’t be able to camp, for example.
Do the infusion and backpack feel strange?
I’ve gotten used to it. Of course it would be nicer not to have it, but since this is how it is, I deal with it. I also feel weak without an infusion. If I perform a puncture a little later in the evening, I feel weak and notice that I need the infusion. Once I’m connected up I quickly feel better again.
How do those around you react to your affliction?
I don’t have any infusions during the university day and I look like any other person would. If I make friends with someone, the topic is bound to crop up in the conversation. Then I explain the situation which tends to be exhausting. My friends know about it but not all my acquaintances know. Anyone I’ve spoken to about it seems to be able to handle it, nobody has ever reacted negatively.
How would you finish this sentence: I‘m proud of my body because…?
…despite my illness, I can live my life to the full.