I’m back again after so long, just finished my exams and finally on summer so I can get back into posting regularly.
This year has been quite intense regarding my own health with new diagnosis’, different medications and changes to my routine. I don’t often discuss my personal treatments but I have decided that today I’m going to share my heath updates with you.
The first diagnosis I received was that my pancreatitis has gone from acute to chronic. The pain I experience from pancreatitis has become more regular and sever meaning I have to take regular pain medications, avoid certain foods and avoid regular alcohol consumption. There isn’t much the hospital can do for my pain except wait for my pancreas to stop working, in which case I will get diabetes but the pain will stop. The only alternative to this is that I have my pancreas removed but I’m unsure on whether I want to have such a big surgery while I am used to managing the pain anyway and I would then get diabetes as-well.
I had a DEXA scan to look at my bone density and I have been diagnosed with osteoporosis, this causes my bones (especially in my spine and knees) to be weak and painful. I have been put on an injection called Denosumab, to be taken every six months in order to try and keep my bones at the state they are in. There is a chance that the injection could improve them but I have only had one injection so far so my progress is unknown.
My chest and lung function have been problematic the last few months. I had an admission as a growth showed up on the right side of my chest, and sputum samples came back positive for Mycobacterium avium and Pseudomonas. I had a two week course of iv antibiotics in hospital being treated for Pseudomonas first. My chest pain continued after this admission and a later MRI scan on my chest showed that there were still areas of consolidation. My doctors decided that it would be best to now treat the Mycobacterium infection with NTM treatments. This involves three new antibiotic tablets (15 extra pills a day) for two years. This bug is long and slow growing which is why treatment needs to be taken for such a long period. Unfortunalty they also give horrid side effects so I’m having to adjust to extra sickness and fatigue.
Finally, I have got iron deficiency so have been put on iron tablets, however this has happened to my quite frequently in the past so its not something I’m bothered by.
These changes have all come pretty much at once so its been tough adjusting and realising that my body isn’t as strong as it used to be, but I’m trying my best to follow my treatment regime and hope the new meds will help me feel strong again.
Sorry for such a self focused post today, I just think its important for people to see how varied CF is as an illness for each individual and also how the illness can change depending on the bugs picked up and the treatments available.
On another and more positive note…my boyfriend, his amazing family and friends are doing a 40 mile walk in the Yorkshire Dales to raise money for CF, please donate anything you can in the link below, it would mean the world to us!!
Thanks for reading,