Living on Parenteral Nutrition #2

Would you like to give us some background on your living condition and/or your medical history? 

My name is Henning, I am 61 years old and live with my wife  Anne-Grethe in Horsens. We have three grown children and so far, two grandchildren.

I was hit by a blood clot in my small intestine on August 31, 2015. It came like lightning from a clear sky. The doctors could not find out which disease I had. The process was extremely critical, and I hovered between life and death. I was in a coma for 4 days in the intensive care unit at Rigshospitalet, waking up with an ostomy and only 50 cm of small intestine left. The ostomy was put back after 6 months, I had to live with parenteral nutrition for the rest of my life. I had never been sick and had no idea what it meant. All in all, the first 14 days were a shock face where I had to adjust to a new life.

When I became ill, I had a director job in the retail industry, where I was part of the company’s group management, and was responsible for more than 130 administrative employees. In fact, it took half a year before I seriously realized that my life would never be the way it was before I got sick.

My ability to work is less than 1/3, so for the first 5 years I continued at another level in the company. I was on reduced time (12 hours per week), working on projects, and had no staff responsibilities. Barely a year ago, I retired, and today I only engage in volunteer work.

My health is relatively stable, but I need to pay attention to taking care of myself. I need to avoid pressure and need to be careful about my nutritional routines. It has twice been necessary to have stents inserted because again there were major challenges with the blood supply to the intestines. I am regularly checked at Rigshospitalet.

Can you tell us a bit more about your parenteral nutrition therapy, when do you infuse (every day of the week, always at night?) how many hours, what volume etc.? 

I get parenteral nutrition every day of the year. I get 2 liters of nutrition every day (no fluids) which runs in the night over 10 hours.

When did you get to know about Micrel Pumps?

I was introduced to the Micrel pump before I was discharged from Rigshospitalet after I became ill. The pump was part of the training when I had to learn how to handle the parenteral at home.

What was your first thought when you heard you will get an infusion pump for your therapy?

I have never been presented with other options than the pump, but of course I tried to get nutrition with a pole at the hospital by gravity. I had a very hard time living with the insecurity associated with a pole by gravity. Then it runs too fast, then it runs too slow, and it is completely impossible to predict when everything has run in. The pump is accurate and reliable, and it is a clear prerequisite for getting the best quality in everyday life.

The pump provides free movement. If you come with a pole, you signal that “here comes a sick person”.

What does quality of life mean to you? Is being active and able to travel important to you?

For me, the disease provides some limitations that I must live with. Fatigue, poor night sleep, chronic diarrhea, constant respect for the management of the disease in relation to nutrition and risk of infections.

That said, you can easily have a good quality of life, but the scale is probably different than before I got sick. For me, quality of life is about the freedom to do what I want without being dependent on the help of others. It’s about my family and my social relationships, and what I can spend time on, including being challenged and the opportunity to make a difference and help others.

There is no place where I cannot bring and prepare my parenteral nutrition, and here the Micrel pump plays a crucial role.

Which places have you visited during the last 7 years?

I had actually, given up traveling abroad, but my doctor encouraged me to travel in the spring to get some sun and build up the depot of vitamin D. We with parenteral nutrition may well have problems with Vitamin D. It takes a lot of planning to travel with parenteral nutrition, and I thought that if I had to plan for myself, I might as well ask others with the same challenge if they would join the journey. So far, we have traveled three times. Twice we have traveled to Tenerife and once to Athens. In Athens we also visited Micrel. Had it not been for corona, we would also have been in Spain, it has instead been 2 trips in Denmark. We have been from 10 – 16 participants, of which approx. half have been users of parenteral nutrition. I arrange all the practicalities and nutrition that is not refrigerated has arrived when the travel team arrives at the location.

How did Micrel’s ambulatory infusion pump and accessories assist you in travelling?

Micrel has been helpful with advice, and we have had a spare pump with us on the trip. Fortunately, we have been spared accidents.

What about/when dealing with infusion therapy has been particularly challenging for you or have you encountered problems?

I perceive parenteral nutrition as a friend, and a prerequisite for me to be able to live the life I want. I’m not really experiencing any issues. Rigshospitalet, as well as Hospital Pharmacy and the Distributor of nutrition and accessories, are extremely listening and service minded. When a need arises, everyone is willing to help and find solutions.

How could you, as a patient, be better supported by the industry, doctors, nursing, or the health care system in general?

I always make myself available if I can help. I hope that knowledge and research can result in us who must live with parenteral nutrition constantly getting better conditions to live a good life with parenteral nutrition, and I am very confident.