So the good news is… no growth from bronchoscopy. Relieved. However, due to her cough persisting despite domestos antibiotics we are in for another 7 days.

So this had me thinking. As a doctor I often look at the patient’s bedspace. It tells you a lot about them and who their friends and family are. It’s your ‘home’ when you are in hospital. Fruit and chocolates may remain uneaten. Cards and photos displayed. Sputum bottles, urine bottles and who knows what else. I took a picture of Minty’s hospital table today. Cards, medicines, high calorie food, toys, drinks and much more.

I’d love to see other photos and put them up for others to see on this blog. If you are a patient, take a pic of your bed table (with appropriate permissions) and send it to me. Tweet it to @morefluids. Let me know your age and a bit about you. Thanks for sharing!


Play & Exercise as Physiotherapy for Kids with Cystic Fibrosis

Jumping for Joy & Health

Jumping for Joy & Health

As a mum of a baby with cystic fibrosis, toys and fun play can form an important part of daily physiotherapy.  Exercise is also integral to encouraging healthy lung function and enjoying life. Blowing and bouncing, what’s not to love?

Our CF nurse suggested starting a collection of blowing toys, which surprisingly aren’t as commonly available as I initially thought. So I’ve started a board on Pinterest with such toys after finding that searching for blowing toys often brings up results including toys of a sexual nature! You will not find such toys on this board.

Other Useful Links

Here is another excellent link on breathing games for children with Cystic Fibrosis and another on trampoline jumping. Physical activity is encourage and many people with CF live extremely active lives, running marathons, playing professional sport and climbing mountains. Some true inspirations. This link shows people in the public eye diagnosed with cystic fibrosis.

Here is a wonderful blog, Run Sick Boy Run,  that states ‘Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life.’

Please feel free to add comments and suggest links that you think may also be useful. This is a work in progress.

Journey into Medicine – Tubes

As I walked into the patient’s room I became overwhelmed with the number of tubes, pumps and equipment attached to and coming from his body. I wasn’t sure whether to cry or faint. How on earth did science invent this all? How can we understand the body so well to make this all work? I wondered how many nurses, doctors, hours and minutes it took to attach them all. Every orifice was used, skin pulled and punctured and new holes were made. There were sounds and smells. A sucking noise, a pumping sound, and a loud bubbling as fluid drained from his chest into two huge vessels. There was little space in the room to move, each tube was attached to some complex piece of machinery laid on the floor or on carts, every available space in the room.

In intensive care his body was no longer working for him, he was simply one step in this complex tangle of machinery and equipment. My husband and I used to wonder why there was an ad saying “plastics make it possible”, now I understood, these tubes were keeping him alive. As we moved his heavy body, he was completely unaware of us being there. Where was his mind when his body was so obviously taken over? He was only 48 years old. As I turned to leave I was shocked by an equally moving site, dozens of colourful pictures, cards and letters from family members and work friends. “Get well soon”, “You can do it” they all said. There were pictures of him on trips with friends, at work, hugging and kissing, laughing, water-skiing and smiling. The image of his life as it should be was deeply upsetting to me and the nurse in the room. I wanted to cry again. I was glad to leave the room.

As I walked past the waiting room, it was filled with about 8 of his family members. They had been there all day; they’d made the room theirs with knitting, snacks and magazines all over. I wanted to know what operation he had, I found out from the nurse that he has just gotten sick, with what I don’t know. This again made it harder to handle, how could you get so sick to need all that equipment, surgery would have been a nice explanation for the severity of his situation. Still, he was apparently expected to make a full recovery, which seemed like a miracle.

** These are based on events, but genders, details and so on have been changed to protect identities. When appropriate, consent was obtained.

Journey into Medicine – Snapshots

Polo-shirt, pants, white tennis shoes, hair tied back and off I go. I haven’t been in a ‘uniform’ in 12 years, last time was working at a supermarket stacking freezers. Feels strange. I kiss my kids and husband goodbye and leave the house ready for the next phase in my life. Scared. Excited. Standing on the edge of something I do not know.

In the four years since I decided to become a doctor (I know why not sooner) this is the first time I have entered a clinical setting as a ‘professional’ and not a patient. It is absolutely essential to experience this for me to finalize my decision. I am embarking on a one year (or more) journey into medicine, volunteering at a local teaching hospital.

Tonight I am to spend much of my time in the emergency room developing x rays. (This is 2002 and we are still developing films.)

I arrive one minute late at 7.01pm, no sign-in sheets available, I know we absolutely have to sign in, what should I do? I’m off to a bad start! I introduce myself to the techs, I feel like I’m 14 years old.

One guy races through the procedures, showing me the ropes.

“Put the x-ray here, make sure the bell rings, don’t open the door, replace film in the cassette, 11 by 14, 11 by 12, 8 ½ by 10, extremities here, here is duplicating film, this goes here. This is the flasher, put the sticker in here, check it”. And it goes on.

I listen intently. I am truly in a new world. It’s so second nature to him, yet alien to me. Barely one hour ago I was picking up rice off the floor, putting toys away and negotiating dinner with my three and one year olds.

No time to think we’re off to our first patient. A repeat chest X-ray on an elderly lady in ER. I wonder who she is, why is she alone? Is this how we will all end up? Alone in a hospital, weak and in pain. I truly appreciate the responsibility of our tasks as ‘caregivers’ in this woman’s life.

Then it’s on to the next patient, the next and the next. Two young adult men with constipation, another young male with a nail gun injury. Then a lull. Then off we go again, two more women in their 80s or 90s both with fractured hips. A young 11 year old boy with his mom, scared, sick and confused. I see the look in the mom’s face, “what’s wrong with him, how long till we know?” she asks

It is only then I am surprised by how little I know of each patient I have just spent brief moments in time with. Seeing her reminded me of who I am and why I decided to go into medicine. Only then I realized how motherhood affected my ability to communicate with this woman. Up until that point I was so busy, helping and learning that I had forgotten I too was a mom. I could tell what she was thinking by the worry in her face. I could tell how her son felt during the x-ray as mom waited outside. I wanted her to know that I was a mom and could understand what she was going through. I didn’t tell her.

We went upstairs to another floor. Another x-ray. We woke a woman with our bright lights and big machinery. This is where she may spend the last days of her life, being poked and moved, loud TV sitcoms blaring and hospital food. I remembered when I was in hospital having my girls, being woken up at all hours, blood pressure, this, that and the other.

I was surprised how many came into the ER alone. A 90 year old woman brought in by paramedics, her clothes stained with faeces, urine, a mint green dressing gown, tattered brown shoes, thin and all alone with no one to care for her. “My leg hurts, oh my leg hurts. What’s wrong? I’m cold.”

I can understand what they are feeling as patients. Barely 10 days earlier I had a chest x-ray, my underwear exposed by the open gown, not sure how to stand, am I straight enough, should I breathe now. Am I doing this right?

Now I am told that this empathy for patients can be erased from your psyche as you progress through training. In fact I was surprised how I quickly saw the patient as an acute abdominal x-ray series or whatever the term for their x-ray was. I saw these people for around 10 minutes or so. As the x-ray blinked taking a snapshot of their injury, I too was seeing only snapshots of their lives. Yet, there I was seeing right through their hearts and bodies and trying to understand their minds.

And so it began. By the end of the evening I’d developed several x-ray films, changed sheets, undressed a patient, talked with patients and families, made them feel at ease, seen bloods, guts and not that much gore. My shift over I left and the CD came on in my car…

“From the day we arrive on this planet
And blinking, step into the sun
There is more to see than can ever be seen
More to do than can ever be done”

** These are based on events, but genders, details and so on have been changed to protect identities. When appropriate, consent was obtained.