A slightly different style of blog post for you today. At a stretch you could call it ‘investigative journalism’, although some might think ‘paranoid rant’ is more accurate. Either way this issue was an annoying problem for me for a while so it seemed appropriate to write about it. Intrigued? Here’s my rant…
Unfortunately I am unable to eat normal food, have I mentioned that before? 😀 Instead I get most of my calories through a Parenteral Nutrition (PN) drip. The bag of PN fluid is connected to my body by an administration set, which is a piece of clear tubing. It has a spike on one end for piercing the bag of fluid and a screw connector at the other end to connect to a catheter which enters my body.
When you set up any type of intravenous drip there is a real danger of contracting sepsis, which is an infection in your bloodstream. It can be fatal, and even when treated can leave lasting organ damage. So it’s vital the administration set used is sterile and it is connected to the bag of fluid and the patient’s body using a sterile technique. As Parenteral Nutrition (PN) is a high calorie fluid it’s worth an extra degree of caution as any bacteria that got into the system would multiply very quickly.
For about 3 years I’ve been using the ‘Ambix activ’ brand of administration sets. About a year ago I started occasionally noticing small pieces of something on the ends of the admin set. Sometimes they were in a location on the admin set where they could be cleaned off easily, so presented minimal risk. But on other occasions the pieces of white something were in a crucial place on the admin set so it would have to be thrown away. If the admin set had already been connected to the PN bag then that would have to be thrown away too. This was wasteful of the expensive supplies I receive, and also a big waste of my time. Getting 75% through the slow process of setting up PN, but then having to start again was very irritating.
I wondered if I was being paranoid and if the pieces of something could be harmless. I started taking photos of the substance when I found it and I showed one of the photos to a nutrition nurse. I asked if she would use an admin set with this unidentified substance on. She replied ‘Definitely not!’ I tried getting advice from various sources but no one knew what it was, I just kept being told to be cautious.
I started finding the substance more often, sometimes a few times a week. On one occasion I found a human hair on the admin set. I took photos and kept samples to be sent to the manufacturer. The company that supplies me with medical equipment was very helpful. They lodged a complaint with the manufacturer, sent them a sample and switched me to another brand of admin sets. I haven’t had the same problem with the new brand of admin sets, but I’m still curious what the substance was on Ambix sets as it wasted so much of my time.
In fairness to the manufacturer, I used Ambix admin sets for three years without getting sepsis. So the 1000 or so admin sets I did use proved to be sterile, but there was more than a few I was unwilling to use, and it’s those that I’m concerned about. I’m yet to receive a response from the complaint that was raised with them.
Below are a few of the photos I took that show the problem pretty well. If anyone knows what the substance is, or has experienced the same problem with Ambix or another brand of admin sets, I’d be interested to hear from you.