Pros and Cons of Ports for Cystic Fibrosis Antibiotic Treatment

USA Today Health indicates, "Cystic fibrosis (CF) is a chronic, progressive and genetic (inherited) disease of the body's exocrine (mucus producing) glands which affects approximately 30,000 children and adults in the United States."

Cystic fibrosis is life threatening

Currently, the average lifespan for someone who has cystic fibrosis is between 28 and 30 years. Respiratory infections are the most frequent cause of death, although digestive issues and heart enlargement can also cause fatalities.

My friend and my experiences with her having CF

In middle school, I had a friend who had been diagnosed with Cystic fibrosis. She has allowed me to tell her story, but wants to remain anonymous, so I have introduced her to the public as Eleanor (in honor of Eleanor Roosevelt, another pioneer with a spirit).

My friend 'Eleanor' is now 45-years-old. When I visited her as a kid and stayed overnight, I would sit in the living room while her father gave her breathing treatments which included using a breathing apparatus like a nebulizer for about 10 minutes. Then she would lie on her stomach on a treatment table that was set up in the dining room while her father banged her back. That helped her cough up phlegm that was sticking to her lungs.

I am pretty sure she had to go through the treatments at least twice a day and she carried an inhaler everywhere she went. She didn't have to take gym, but she liked it, so she did the things she could do that required limited physical activity.

Sometimes she coughed hard, and I remember seeing her turning a bit blue on occasion. I had no idea the extent of her disease back then, but I admired her fight and inquisitiveness. I don't remember how I found out, but I did know Cystic Fibrosis was fatal. She had been given the diagnosis that she would be lucky if she made it to age 18.

Getting adequate medical care is extremely important

Since college my friend has gotten excellent medical care, partly because of research done at the University of Michigan and partly because she is diligent about doing what she needs to do including making sure her health professionals wash their hands.

The college has made progress with CF, and as evidenced by her active lifestyle, regular treatments, careful living and respecting her physical limitations, she has been able to do more than ever was thought possible when she was diagnosed in middle-school.

What is a port?

A port is a plastic piece of medical equipment that stays permanently in a vein under the skin to allow an IV, antibiotic medications and blood drawn through a catheter. Lung infections are a major problem for CF patients and the ability for antibiotic medicine to be given quickly can mean the difference between life and death.

The benefits of ports are that they allow patients to not have to be stuck with IV needles on a daily basis. The downside is that they come with complications, including infection and displacement, and scarring that make them dangerous in certain situations.

My friend can no longer use a port because it is too dangerous. She has a narrowed SVC and if it got clogged again, it would be hard to fix. The ports have shown themselves to be high risk. She says, "Right now, I need to save my veins unless things get worse."

What other options can there be?

They replaced her port with a stent but her baseline health isn't as good as it used to be. She gets periodic roto-router treatments to flush out the stent, but a lot of activity gives her headaches and swelling.

Medical advancements and health care costs

I wish I had an answer to her problems, but I know that today, more than ever, science and medical technology are advancing by leaps and bounds. One way science makes advances are by using volunteers with new medicines and procedures.

See here for how to find a medical study that is looking for volunteers?

http://www.umengage.org/Volunteers/How_to_find_a_study.html.

I hope as the US moves into a transformation of the health care system, that we learn to apply our knowledge wisely, rapidly and for better health care at cheaper costs.

If you want to hear her story, see the Series on Cystic Fibrosis: A Personal Experience. The first part of our interview dealt with how my friend was diagnosed with CF. This second part provides an insight into Eleanor's experiences with Ports. In the upcoming third of this series on 'Eleanor's' experiences living with Cystic Fibrosis, we will discuss health care costs related to CF.

Sources:
http://www.healthscout.com/ency/68/222/main.html
http://www.med.umich.edu/mott/cysticfibrosiscenter/