Been in a week today. Feeling better than I did this time last week, which is good. But other than that it's hard to tell, it's been so long since I've felt absolutely wonderful I've forgotten what it feels like!
So after all this time, I THINK we have finally figured out what the problem has been: a fungal infection called Aspergillus. It's quite common in CF patients, I believe. I have been going downhill since Jan/Feb time and haven't been able to pick myself back up in terms of numbers in my lung function. So I re-read blogs, my diary, even went back through Facebook, just to see if I could pin point anything that could have caused my decline. Dr Orchard did the same with going through results of blood tests etc.
The next paragraph of this blog will be numbers and stuff and me trying to explain it, so if that sort of thing bores you, maybe skip this part haha. I know my family will probably appreciate the numbers and it will save me trying to remember it all and repeat it over and over to everyone :)
Sooo.... the blood results: There is one called an IGG, which is the measure for the aspergillus infection in the blood. In "normal" people anything over 40 is a concern; in CF patients, anything over 100 is a concern (although Chris said that he is unsure where the "100" came from and it could have been plucked from thin air!) In Feb, it was 195, then came down a bit in between then and May where it went up again to 192. My last blood results showed it is coming back down and is currently at 126. I am on anti fungal IV meds at the moment. My CRP, which is the infection levels in the blood were 42 when I came in last week, which isn't extortionately high considering back in May they were 121. However, they are now at 24, which is great as the aim is under 10 so I am getting there and Chris said it's the lowest they have been all year. This measurement is more for the pseudomonas and on/off serratia that is in my lungs, I believe. Finally, there is something called ESR, which I think is the inflammation levels in my blood. They are 16, which apparently is low. I don't know much info about this number and what is high/low.
The next steps are to carry on fighting the fungal infection. I am currently on Caspofungin IV and once that course has ended I will be on oral antifungals for a long time. Chris said he doesn't know how much improvement I will make, but we can only hope for the best.
I asked if there is anything I can do in my home to reduce the possibility of it happening again. So far my family have searched the house for any mould, thrown out all my towels, tea towels, bed linen, duvet, pillow, anything that could harbour fungus really. Chris reassured me that, as good as it is to keep those sort of things fresh and clean and to renew every so often, these things are unlikely to have caused the infection. Aspergillus is an airborne fungus that everyone breathes in almost daily. You are likely to find it in hay, compost and flowering trees. It was just unfortunate that I inhaled it one day and it decided to take root in my lungs!
The good news though, is that I should still be able to go on my holiday at the end of the week :D I won't have the definite "OK" until Thursday, but as long as I don't decline I should be alright. They have started a 3 day course of IV steroids, as opposed to the oral steroids I have been on for a few months. Hopefully this intense course will give me that extra boost to fight this infection once and for all. We will repeat bloods and lung function on Thursday too. After the holiday, the plan is for me to come to clinic as an outpatient to see how I'm getting on.
I would love to be able to say a long term plan, but at this stage it's sort of day to day, week to week time frames. I have had to put my lovely dog grooming business on hold, which has been a horrible step. Other than the helpfulness of a bit of an extra income, I miss my clients and their dogs, the independence, even the workout of bathing a dog haha. It's very frustrating and I hate letting people down. I just hope that in a few months time I will have built up the lung function, strength and stamina to reopen.
I have, as ever, been very lucky to have visitors, phone calls and well wishes from friends, family and neighbours. Without the kindness and thoughtfulness of you all I wouldn't be as happy and positive in my mood as I am. You pick me up when I'm down and these past few months have probably been the hardest of my life so far, emotionally and physically. It's easy to get caught up in all things health when you're in hospital for a long time and not seeing much improvement; so it's so, so helpful just to have a chat about something other than hospitals, lung functions, numbers etc and take your mind off it, and remember who you are as a person and what makes you you. Talking about dog grooming or having a girly gossip about something we saw on Facebook or watching old videos of belly dancing... anything that just reminds me that it's not all CF, CF, CF and I do have a life other than this hospital and it's something I want to get back to ASAP! So THANK YOU to you all, you may not even realise you have helped me, but you have <3
Until next time! xo
