Heya,
So I’m back and with an update from my latest clinic appointment before I start to give my own personal health advice on this blog. This is in order for me to document what I personally experience with this condition so people can have an insight into how CF effects me. Over the past few months I have had a new diagnosis and changes in my treatment and feel these are big moments I would like to document.
After summer I went back to my CF clinic for a big check up. My lung function (LF) was down 20% on what it was at my last appointment. This immediately caused me to panic that I may need to have iv antibiotics and be admitted into hospital and as I’m back at uni I don’t really have time for an admission. Lucky my doctor thought it best to first prescribe me with a two week course of two different oral antibiotics; this helped my LF to increase again after a test at the end of the treatment course. She also thought that my regular decline and fluctuating lung function could be due to the resistance I may have to my inhaled medication Colomycin (Promixin). I have been on this medication since I was 6 years old so it was suggested that I switch to a new one called Tobramycin and alternate monthly between the two. This new drug is typically more effective and expensive.
Initially this change worried me as I’ve been dependant upon Colomycin since I’ve been diagnosed however after some thought I agreed. Then I was booked in for a trail to see how my chest responded to the medication with my LF being taken before and after I had inhailed the Toby. My LF only reduced by 4% meaning it was ok for me to take it.
Although it should help my health in the long term, it tastes disgusting and takes twice as long at Colomycin so may be a pain to take to start with especially while I’m at uni.
The second update is my low bone density. It has been declining for many years now, however it has become a cause of concern as I now have Osteoporosis and suffer a great deal of pain in my knees and ankles when I walk. I have been told that if the state of my bones gets worse I won’t be allowed to have a transplant in the future if I need one, so I need to have treatment immediately. The plan is to give me an injection every 6 months in the hope it will stop the damage getting worse. The drug I’m being given is called Prolia and is typically used in elderly patients. I am scared to start this because I’ve been told of some side effects but I think ultimately it’s probably for the best.
Finally I saw the liver doctor, she confirmed that my Pancreatitis has gone from acute to chronic. I get such bad pain from this quite often and it means I can’t move and eat, so I asked if I could have my Pancreas removed. I was told that it would be complicated and I would have to have many tests to see if I was fit for the operation and on top of that after the surgery I would get diabetes immediately, my other option is that I try and manage to live with the pain until eventually my Pancreas stops working and then I would get diabetes then. Neither option is ideal however I decided to continue to manage the pain as I have been doing that for so long now and it’s easier to deal with while I’m in my final year of uni. The pain can be managed if I take Codine daily however I don’t want this to be a super long term situation but for now I will leave it.

This was a stressful and difficult appointment and wasn’t really how I wanted to start my final year at uni but I guess that’s life and living with a chronic illness.

On a brief and more happy note, I have started to have one-one adult swimming lessons in the hope it will help my lung capacity, it also takes the pressure of my bones unlike most other activities so I’m really hoping to stick at it.

Sorry for how serious and intense this update is and I will try be more uplifting in my next posts, and aim to start writing about my personal experiences of living with CF at uni.

Thanks for reading,
Isabelle x

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