“Some people look for a beautiful place, others make a place beautiful.” Hazrat Inayat Khan

Every person living with Cystic Fibrosis will have a different experience. Hospital stays, however, are a given for almost all. Often referred to as a “tune-up”, hospital stays with IV antibiotics and additional treatments are essential during exacerbations or long battles with particular bugs. The average stay is two weeks, and while a hospital room is not really fun, there are ways to get the most out of them.

We’ve asked Kim Keyzer, an adult living with Cystic Fibrosis, to share her experience and view from a hospital room with us. Kim is no stranger to hospital stays and has been going to Milpark Hospital since December 2010,  when she was 18 years old.

We’ve asked Kim Keyzer, an adult living with Cystic Fibrosis, to share her experience and view from a hospital room with us. Kim is no stranger to hospital stays and has going to Milpark Hospital since December 2010,  when she was 18 years old.

“I remember the first time going to the hospital, going to reception and ‘checking in’ as such. Filling in all the forms and documents with pen and paper was quite the task. Things have changed since my first visit, though, today they have iPads and an App allowing you to do a pre-admission.”

“Next is waiting for them to find a bed… You see, as a Cystic you need to be in a single room (isolation) to avoid cross infection. While it can be lonely, it is definitely also a perk to have your own room…and bathroom. My first stay was in Room 15, Section 7…I remember meeting Dr Williams for the first time, It was during his night-time rounds. He sat down and started asking questions about my diagnosis and events leading up to my admission. I remember all the poking and prodding for different tests: x-rays, lung function, sonar of organs, blood tests and sputum tests. Then there was physiotherapy. I met Aviva, the physiotherapist, who has since seen me basically during every admission. Like so many in my medical team, Aviva has become so much more than just a physio to me. She is a constant, comforting presence when times are uncertain…a friend…my ‘Milpark mom. In the same way, the sisters of Section 7 have become my family away from home. As you walk in, it is like a chorus of ‘hellos’ and ‘how are you’s.” 

“It is strange visiting the same hospital for over 14 years. While some things remain the same, you get to see how things change over time. Almost like a time-lapse, with memories as the before, during and after pictures. I saw the new wing at Netcare go from nothing to a seven floor building. And a parking section with six floors completed.”

“One of my favourite parts of Milkpark is the section behind glass doors. These are the transplant isolation rooms. The three rooms have the best views of the garden. When it is summer, you can take a chair and relax. During winter you can soak up the warmth of the sun. In the garden is a giant ‘Silk Floss’ tree, which blooms pink during April – May.”

The Stuff you Sweat About

While I can recall all the good things of every stay, it does not mean every part or every visit is a positive experience. During one admission I was not even able to take off my clothes or get dressed for bed. When I am really sick, I would keep the light on and just curl into a ball. Everything was just too much – even the set up of the drip was too painful. I would miss home! I would try and escape to my happy place, counting softly to distract myself from the pain as the nurse tries to find a vein.  Sadly, my port-o-cath has not been an option for some time. My veins linked to it are no longer viable.

These are the Tests usually endured during a hospital stay:

  • Lung function
  • Sweat test
  • X-rays
  • Sonar
  • Sputums
  • Bloods – FBC, Liver, 

My schedule usually follows the same patterns:

Monday, Wednesday and Friday activities

  • Biokinetics (biokinesis)
  • Physio 1 
  • Physio 2
  • Dr Baird visit

Alternative Days:

  • Physio 1 
  • Physio 2
  • Dr Baird visit

Making the Hospital Look and Feel Beautiful

While hospital stays are no fun, they are part of life. So we have found ways to turn it into a positive experience. We’ve started calling an admission a tune up or service… In other words we are just going in to change the oil and to replace the filters. It is always tough to explain to to friends, family and acquaintances why I have to be admitted. I didn’t necessarily look sick, and it is not always an emergency admission. But inside, my body was fighting a battle, and it wasn’t winning. 

The stay is usually two weeks’ long. While you are there for a top-up, you aren’t on bed rest. So in many ways, life does not stand still. So how do you make the best of a bad situation?

You start by making the hospital room your ‘home’ for the next two weeks. Things I take with me to do this include my flower blanket – the bright colours just make the room look more inviting and it keeps me warm on cold nights. Obviously I pack my own pillow! It is just so much more homey and comfortable. It is also essential to pack an extension cord, as the plug points in the hospital room are not conveniently placed. During my recent admission, I hung a picture my niece drew for me on the wall. I also take a laptop with during my stay, so that I can carry on with work during my stay. And because I am not on bed-rest, my partner-in-crime (and husband), Matt,  would go on walks around the hospital with me. We enjoy people watching while having coffee at the cafe and playing cards. 

 

I also enjoy putting on my headphones, playing music and dancing around the room. No one is around to watch and I love being able to feel how much my body has improved since my arrival. As soon as I start feeling the energy return to my body I cannot help but celebrate another successful admission…A stark reminder of why I am here…so that I can get on with ‘living’ after being released.  

When you are admitted as frequently as I have been, three to four times a year, you start to see it as normal. There is a general acceptance when you associate feeling better with these stays. You will feel better, will be able to do  more, cough less and most of all…just feel human again.

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