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A Cystic Fibrosis Patient’s “First Day” in Hospital

People with a terminal illness often need to be admitted to hospital. For me this is normal. Every few months I need IV antibiotics and monitoring by medical professionals. I would like to take you through the first day of a typical 1-2 week stay in hospital for someone with cystic fibrosis.

Also read: Introducing Kelsey Lett, Patient Engagement Advisor

The admission process

Kelsey receiving oxygenA few years ago it was decided that cystic fibrosis (CF) patients must be in isolation for 72 hours because we normally come in with cough and fever. This is for our own safety. So the nurses, doctors and any visitors have to wear a gown, mask and gloves. I am now used to being a germ.

The first of several days at the hospital normally starts with a nurse accessing my port-a-cath – a device located under the skin that’s attached to my jugular vein – so that I can be hooked up to IV fluids while waiting for antibiotics. The nurses will then go through the admission process. They check my weight and vital signs, ask a lot of health and home related questions, and go through my medications list so I can receive them while in hospital. This normally takes about 30 minutes.

By this time the resident physician following my case will come up and ask me the same questions. Keep in mind they are still learning and have to ask a boat load of questions! This can sometimes be annoying but it’s all part of the admission process. The doctor then completes a physical examination of my body: he or she listens to my lungs, feels my abdomen, looks into my nose for sinus infections, and checks my glands and ankles to see if there is swelling. Finally, they write the orders and decide who should see me from the CF team.

The joys of breathing and feeding

After all the orders are put in I can have a little nap before the meds come up and I’m hooked up to my first antibiotic. Depending on what my o2 sat (oxygen level) is, I would normally be put on oxygen just to help me breathe a little easier. I don’t mind. It’s nice to have a little help breathing. Sometimes if I’m sick enough my body aches so I am offered pain meds to help me rest easier. The dosages always depend on where my weight is at.

Kelsey shows her port-a-cath and feeding tubeWhen I’m sick I don’t have that much energy so I sleep a lot. Sometimes I even miss meals so the nurses will hook up the feeding tube located in my stomach. I call it my mickey peg. This tube is literally my best friend on days when I don’t have the energy to eat.

By evening I have to get up to do my nighttime treatments. The respiratory therapist is usually first. They come in and hook up my nebulizer, which is a mask that blows out a medicated mist to help break up the mucus so I can cough out that icky junk. This treatment normally lasts 10-12 minutes. Following this, the nighttime nurses come in and check my vital signs. Depending on the numbers they might give me some oxygen or Tylenol to bring down the fever. With cystic fibrosis, having a fever is normal.

With the right team of caregivers…

By 10 p.m. I am all ready for bed. I am hooked up to my feeding tube, my IV meds are running and I have all my nighttime pills. The nurse will come in to make sure I have everything I need—they always make sure my bell is by the bed in case I need anything during the night.

The nurses are great at helping me stay comfortable and giving me what I need to rest. The nights are difficult with CF. Personally that’s when all my coughing starts. Sometimes it gets so bad that I start to feel nauseous so the nurses will ask the doctor for some Gravol. This helps my stomach especially when I am getting tube feeds.

I have spent so much time in hospital that the nurses are like friends. I know them all by name and I feel comfortable asking for anything and explaining my symptoms even when they are not so glamorous. The doctors and residents are very supportive as well. They make sure that everything I need is ordered in the chart…and because I am there so much they always check if I am comfortable with the orders and choices they’ve made.

Being in hospital is not easy, but with the right team of caregivers I always receive the best care.

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