One minute things seem incredibly bleak and rubbish, the next things seem to going in the right direction and we're all celebrating but then we're back to things being all a little crap.
After my IV antibiotics and radiation therapy my lung function plummeted. If your on Facebook you'll know that things seemed really worrying my DRs were concerned I was nose diving in a similar pattern to my rejection before and that there weren't really any treatment options for my chronic rejection.
I had yet again another bronch and luckily they found something else slightly more treatable called organised pneumonia. This is a inflamitory response, a immune response to a previous infection or sign of something else going on. I was treated with high dose methyl pred which made me feel pretty awful. I put on 8kg of fluid in 3 days stopped peeing, my CF bowels shut down and I felt pretty rubbish for sometime. After 3 doses of methyl pred I went home on a higher dose of prednisalone in the hope that it would make my breathing easier and ease the inflammation caused my this organised pneumonia.
And it did! Slowly things improved a little and to be honest that was great because I was really struggling. I felt like my lung function was a lot lower than it was. In fact I was starting to get really scared by all the symptoms. I came back up to clinic last week to find out if I would be allowed on holiday on the 10th of September to Florida where we had been planning to go for a year and I had saved up all the money myself for me and Stuart to go from what I would say was a very successful year of business for me and a heck of a lot of hard work. My lung function was up to 60% I felt great and so happy to see the rise in the numbers and also being able to feel the benefits in my cardio at the gym. I had gone from 10minutes of level 1 feeling like I couldn't breathe at all to level 1-7 for 20 minutes. Obviously not my greatest but a huge benifit.
As I returned from clinic I started to really suffer with fatigue, I finished one of my lessons and sat in the car for over 30 minutes unable to move, eventually I drove to my mums where my step dad carried me out of the car, my breathing felt awful and I was purely exhausted. It came from no where. (no I haven't over done it that's not how this works)
There were several more occasions like this through the week and I knew something wasn't right. My lung function dropped on my spiro and I rang Harefield. I was already due to come up for a impedance study (a further test for reflux) they told me to stick to my plan and come to clinic. Wednesday I felt dire, I didn't even put make up on. That's really saying something for me, I love to cover my illness with a good foundation, eyeshadow and mascara but the energy to do that felt to much. To be honest just sitting in clinic felt to much.
I had all my tests done Wednesday including a CT and slept in the hospital accommodation overnight. I slept like a baby and I really needed that rest. Waking up feeling a little better I made my way to clinic.
My DR told me that actually there were a lot of changes on my CT, I'm not very good when it comes to X-rays and CTs I can't usually tell the difference in all honesty. This though was clear, it was like someone had stuck a cloudy day over my lungs. Huge white patches covering large areas.
We talked about every option I had, my holiday only looming this Saturday 2 days away. She asked me to go away and speak to my husband who was at work, my mom was with me. It was clear that if I am to think about surviving long term then I couldn't go. These patches currently seem reversible by what they can tell, if untreated or only partially treated could scar my lungs even more and make my chronic rejection much worse.
I went back in and said ok let's treats this. I'm going down for a bronchocopy tommorrow and having biopsies, this alone rules out flying on Saturday. Then they will decide on treatment from there. They are confident theses cloudy changes are viral and that treating them with more gross methyl pred and immuno globulins should be affective. Although they won't know 100% until they have done the bronch.
I feel gutted to say the least. I worked so hard for this holiday and with the last 6 months it's much needed. However I know now is not the time. I have fully comprehensive insurance but there seems to be some issues with my mom and step dad claiming there money back as they technically can still go and so could Stuart. It looks like we may only get the money back for myself as they have all said they couldn't go without me. That wasn't the idea. I really hope that when they have a bit more time to talk to insurance companies we can sort it all out. To be honest I'm not really in the mood to be messed around so if the insurance companies want to play assholes they picked the wrong girl to mess with.
My impedance test also came back positive so the DRs are going to talk to professor Hannah who did my fundo in 2013 and see if there's something else we can do. It seems there's a lot of confusion over my osophagus and fundoplication and I think that can come from being 2 very separate hospitals. I hope they can finally reach a conclusion that will make sure my lungs are 100% safe from reflux.
A lot of people have said 2016 hasn't been a good year for me, that I can't seem to catch a break. I can see where that's coming from but I also hate to tar a whole year as a bad one. Every year is so precious with out my donors none of them would have Been possible, so although this year has been a little rough Im still determined to think of all the good points along the way and there have been some really good points. Pole theatre, holiday with my husband, passing my aerial silks course, growing my business and really fully enjoying it, starting to teach aerial hoop, feeling successful and proud of myself. Just a few of the things 2016 have bought and the year is not over yet, I still plan to make the positives over ride the negatives and have some amazing pole workshops, privates with amazing pole instructors that Iv booked, a little weekend get away with Stuart's side of the family, beauty unseen, raising lots of money for this amazing hospital and a trip up to Scotland at Christmas to see one of my besties (who came down to see me last week).
So for now this is my update. Fingers crossed that whatever's going on is sorted and my Chronic rejection is stable.
Here's my picture for national transplant week as part of live life give life campaign and NHSBT campaign. My piece of paper says "I'm grateful to my donors for all the amazing moments with my family and all the amazing experiences since #TurnAnEndingIntoABeginning"
