My life has rushed past and it's been like a roller coaster. I'm updating over the last few months since my last journal on Rat Race (May) + Brentwood half marathon (March). To which I wrote a combined and lengthy blog. I always have the intention to do short journals - but somehow the words keep flowing and this one is probably worthy of a cuppa and a few dunking biscuits or a glass of something nice ;)
My life has been consumed with working, voluntary work, radio slots on BBC Essex as a newspaper reviewer, training, hospital visits and much more. A change in medications since two infections were found in the bronchioles of my airways requiring me to take nebulisers twice a day permanently.
It's bizarre as I was feeling more breathless since before the Brentwood half marathon in March and even from the year prior. Not to be grim...but I was bringing up black stuff from my lungs and blowing out the same also from my nose. I did query this last year but as no changes in my lung function or changes from x -rays/tests at hospitals...nothing was done. I guess, it's get to the point when we say we know our own bodies, and I KNEW this was wrong! But, nothing was still found or the fact I was unable to give a sputum sample on demand. I did keep pushing at hospital and had a scan of my sinuses and lungs and yet nothing was found. So, technically on paper I was deemed fit and well. Yet, I knew otherwise. Finally, I managed to get a sample to my hospital and to cut a long story short was informed that I actually had two infections:- pseudomonas and candida.
I remember I was told a long time ago if I ever had pseudomonas that I would need nebs indefinitely. I guess now 8 years post transplant (July 9th this year), that I have been lucky even with my blips on/off. I was hoping it would be a short term thing - but when I was informed, it was not so. Ok, so be it was my initial reaction - not a lot I can do about it. I did start on antibiotics straight away for about 2 weeks before I started the nebulisers. It was not a smooth journey and it did cause me a lot of stress getting the right machine/drugs to go with it. And getting this agreed via my GP/Hospital a bit of a battle who was going to supply me the medications. Blah Blah........ after bursting into tears at hospital as I was showed what to do and realising wearing a mask reminding the days I needed a mask for oxygen. It initially was very overwhelming. However, I know how I roll - fall down, then bounce back up!
And I did! After getting a portable nebuliser machine and the medications and bits needed to make one of the drugs (needle/syringes) the only way was UP. It's like brushing my teeth - just an additional routine to my life now with the other aspects I need to do. Moving forward some weeks now - it's all good. It is a nuisance sometimes to do, but, if it keeps me alive longer and helps my lungs, then YES I am going to do this!!
So putting the aside my blip and now the ongoing nebs - time to relay some amazing news. My journey is always filled of gratitude daily and July this year I celebrated 8 years post my transplant! I still feel like every day is a blessing and I wish I was able to thank the man who agreed to organ donation and gave me life after his.
It was really nice to have some friends and my family at a local restaurant for good food and fun. I had arranged party bags for all the guests and a very special cake was made too. It was a shape as double lungs!
|Let the fun begin....|
|The cake is all mine :)|
|and who is behind the masks ;)|
|working it ;)|
|Upside number - Oh dear read below.....|
Here I am with some other booties:- Rhian, Mandy, Hayley, and Carly. All clean happy and smiley.