Filed under Lungs

Survival Mode

Survival Mode

It’s been two years since we last caught up with Heidi and Andy. A lot has happened. Monty happened. They are now a content family of three with their longed-for fur child. A human child did not happen. “We found out that our second cycle of IVF failed on the same day we were told … Continue reading

Physio differences

Physio differences

One positive of Dave’s most recent admission was that he was treated by the senior physio. Words cannot convey the value that she has for me, for us, and I daresay, every adult with CF at RPA. Dave and I are very valuable to her too. Since we are married and have accepted a certain … Continue reading

There is no “I” in team

There is no “I” in team

In August of last year Dave and I took a trip to Rydal. In the middle of winter, with snow falling, we needed the wood fire. Dave just so happens to be an expert at setting fires. He has mad skills. He has a sixth sense about where to find the perfect amount and substance … Continue reading

Feeling…. meh

The last month was kind of rough for us. Dave was feeling distinctly…. meh. By which I mean, he was debilitated. Like someone crash tackled him out of life and firmly benched him. He was sick of being sick. He needed IV’s like a fish needs water. He’s had a week and a half of … Continue reading

Team K+

Team K+

I always wear a CF themed cap for my runs. I’ve just swapped over to a beauty from the Rock CF Foundation. Running in this cap is oh so important to me because it keeps me realistic. When I’m feeling like there’s not enough air in my lungs, that this hill is too steep, or … Continue reading

Operation Use Them or Lose Them

Operation Use Them or Lose Them

For two clinic visits in a row my lung function has been hovering at my personal best (of recent times). Is it the Orkambi effect? Is it the placebo effect? Is it coincidence? Whatever the reason, I feel supremely satisfied that the hard work I’m putting in everyday to stay alive and well is delivering pleasing … Continue reading

Black Knights

Our lung function inevitably declines despite our absolute best efforts. Honestly? Sometimes this can be pretty hard to deal with. Every clinic visit we do lung function tests (LFT’s) to map where things are up to. LFT’s are an objective measure that the doctors use to get a handle on our health. For the uninitiated: … Continue reading

Rolling the dice

Rolling the dice

CF is un-bloody-predictable. Daily life is a role of the dice. For a control freak like me it can be very unsettling. The Thursday before last I was feeling absolutely awesome. Exercise was a breeze. During our evening stroll I didn’t need to ask Dave to slow down once. I could talk AND walk – even … Continue reading

CF affects a lot

Hands up who thinks CF affects only the lungs? Who thinks it only affects the lungs and digestive system? Who has no idea? CF affects a lot! When I’m describing what CF is with my patients at work I usually only mention the effects in the lungs and digestive system. These are the two most … Continue reading

New balloons

This week one of my friends received the most magical gift – a shiny new pair of lungs, new balloons! Her journey to transplant has been rocky and her grit and determination is inspirational. I wish I could showcase her story for you all to marvel at. However, it is not my story to share. … Continue reading