Wednesday, 23 September 2015

Tinkling bells / rumbling chests

The last 6 weeks have been rather odd.

It started out with a pain under my right shoulder. I tend to sleep rather awkwardly, and my mattress isn't terribly brilliant, but as the pain slowly got worse, I started to think something else was up, rather than awkward back pain.

At clinic an X-ray showed lots of shading under my shoulder blade, and the answer I was hoping for was confirmed - a big blob of mucus, or a mucus plug was stuck in my lungs. The size of a sausage. At least this is fixable, I thought. Lots of physio, strong antibiotics and buckets of water was prescribed, and sure enough this strenuous regime worked, after a week the pain was gone!

But bugger my luck, a few days later I caught a cold and within a few days now only had the pain under my shoulder blade returned, but sharp pains were plaguing my entire lungs, every spot was sore. I would sneeze and my lungs would contract, held there by spasmed muscles and such a pain I couldn't move. The climax of each yawn was like an electric shock. Every part of my chest was littered with pain, and every twist, turn, move or breath would end in me releasing a small yell.

I would sit on the sofa, watching the TV my new housemate Alex dragged from his home in Sussex. People with eyes popping and burning skin on House would distract me from my own inflictions, and together with tea and my guest cat Marcy, who comes tinkling in whenever my back door is open, I wiled away a good week.

My dad would come over almost every day, and do percussion physio. Percussion was a type of physio I stopped when I was 11, but is the most magical form of chest clearance. Tilted down on a homemade wedge of cushions with my PEP acapella device firmly pressed between my lips (dad eventually constructed an epic tilt from a thin mattress in my loft) I would try make everything within my lungs rumble, and in the breaks try not to fall asleep in a daze of nostalgia and comfort. Of course the comfort would vanish as soon as we hit a tender part, and my breath would catch at the sharp pain in the tips of my lungs. 15 minutes of each side of my lungs, mucus galore, and even the addition of sander from dad's shed offering bursts of vibrations (and probably the best massage i've ever ever had), I was slowly but surely clearing the gunk from my lungs.  

Friday came, and once again I woke up and couldn't move. After all the hard work i felt back at that annoying square number one, and started to think maybe something else is at play. Pleurisy, pneumonia, inflammation, fluid in the lungs all went through my mind, so took myself down to A&E.

The doctor listened to my chest ("it's remarkably clear, nothing there"), and told me to go home. I asked for at least some bloods and an X-ray because fuck me if i'm heading all the way there and I don't even receive a bit of radiation for my time. An hour later and results were back.

CRP (Infection markers): 9 -super good
X-Ray: clear.
Kidneys: absolutely fucked.

My lungs were quickly forgotten, and I was admitted for fluids, an ECG (to check if the raised potassium level due to my off kidneys was hurting my heart), and countless more blood tests.

3 bags of fluids and a remarkably quiet and relaxed sleep up in the acute assessment ward later, everything, and I mean everythig, was back to normal. My CRP had dropped by another 3 points and was down to 6, my potassium was normal and my kidneys were totally bog standard normal.

Bit of a bloody mystery mate.

I was let home that afternoon, went back monday morning for some more bloods, hopped down the road to the brompton to check my lung function monday afternoon (mystery deepens: lung function is only 5% down from my best ever...) though have to go back to cheslea and west tomorrow morning as the kidney function is slightly elevated again.

It's all a little bonkers.

I've been taking a very normal dose of paracetamol for the diminishing lung pain, and back on the sofa with tea and a book and Marcy, the stolen cat.

As I was walking from one hospital to the other on monday afternoon, I stopped in Daunt Books on the Fulham road. Daunt books is one of my favourite bookshops, they organise half of their books by country, which endlessly fascinates me.

I picked up 3 books. Seneca, Crash by JG Ballard, and The Guest Cat, by Takashi Hiraide.

I had seen The Guest Cat before, and despite it being about a cat, surprisingly/ shockingly hadn't bought it.
But now I had Marcy, my stolen guest cat.
Even the cat's face on the cover, peeking up fro the bottom, looked like Marcy. So I had to buy the book.
Marcy started coming into my home about a year ago, as a teeny kitten. She would wander round, climbing the kitchen counter, disappearing into cupboards and sleeping on my bed. I like to think of her as almost mine, without the responsibility of clearing up her poop.
(Just a quick note, I found out a few weeks ago Marcy's real name is Kitty. Surely that's a crime against cats?)

"Gentle, thoughtful and subtly profound" said the guardian. Yep.

"Careful, elegant and lovely... unusually intimate, detailed and vivid", said the NY Times. Oooh, intimate. Yep.

"Lyrical and captivating....."..."Takashi Hiraide, the Japanse illumnating and achingly poetic..." The Huff post started to say... Bingo! A lyrical and captivating poet! I'm in.

So I bought it. I'm reading it, and i'd say it really is gentle, thoughtful and subtly profound, careful, elegant and lovely... unusually intimate, detai.... just, all of it. It's beautiful. (blissfully sighed Ludicrous Bunglings)

So far there is a couple, both work in publishing (I did that!), the man gets shingles (I had shingles!), and this kitten starts to come into their house (Marcy did that!). The chapters are 3 pages long (I love that!), and the imagery is stunning, like poetry (I love poetry!). Pretty perfect. I've been lounging on the sofa, wrapped in my blanket, reading the Guest Cat, drinking peppermint tea, classic fm in the background, and convincing myself i'm not old, all the while stroking my own guest cat as she wanders in, tail perked up in the air....

Today I woke up with no pain, downed a pint of water for my kindeys, and for lack of anything to do, started reading my book again. It's not a hard life these days. Just sometimes sore and always a very broke one.

Sunday, 13 September 2015

National Transplant Week 2015

Huge thank you to CF/Aware who asked for my story for this years National Transplant Week. This is my story, remembering that very scary yet mind blowingly amazing episode of my life 2 and a half years ago!

I hope you all have signed up to the Organ Donor register, it's so quick yet can and will make such a huge difference to not only 8 people's lives, but their friends and families too. Fucking do it.

Here is CF/Aware's post, with a link to the page here

(Give them a follow, they do a bloody fantastic job. Facts, articles, stories, everything you need to be cystic fibrosis aware.
Twitter: @cfaware  Facebook page here )

Organ donation week this week has been tremendously successful at highlighting the life changing experiences people have had thanks to organ donors. A lot has been said about people with Cystic Fibrosis needing lung transplants, however CF doesn't just affect the lungs and people may need other organ transplants.
This is Laura's story...
"First some stats for you: CF liver disease can affect up to 40% of children with CF, with that rate dropping as age increases - it's unlikely you develop CF liver disease as an adult. Of the people with liver disease, 8% will get scarring, or cirrhosis. Of this, 3% will need a transplant.
CF liver disease is caused by thick bile (just like thick mucus in the lungs) that eventually block the bile ducts and cause the liver to harden and scar, again just like what happens in the lungs. A scarred liver doesn't work anymore, and when this happens a transplant is the only way to survive. Cystic fibrosis liver disease is the third most frequent cause of death in CF after respiratory and transplantation complications and accounts for 2.3% of all mortality."
“I was the very lucky recipient of a new liver, pancreas and small bowel (called a multivisceral transplant) on the 23rd January 2013, when I was 23. I was put on the waiting list 9 months earlier, after a series of long and extensive testing that revealed what we all dreaded – because of CF liver disease my liver was failing and now end stage. A series of frightening bleeds from my oesophagus a few years earlier first hinted that something was wrong, an indication that the pressure within my portal system was getting increasingly high; blood wasn’t going through my liver because it was becoming so scarred, so instead was being re-directed into my (growing) spleen, and bursting out into my stomach, oesophagus and intestines, which causes life threatening bleeds, the highest cause of death in CF liver disease.
I also had CF related diabetes, and controlling it was impossible because the liver was negatively affecting my pancreas. I frequently would go unconscious because of low blood sugars I couldn’t predict – one time this happened a week before my final exams at uni, also getting serious concussion from the fall. I would frequently be rushed to hospital to try and revive me before my brain shut down.

I was initially seen under Kings College Hospital, but they refused to transplant me as they thought the operation would be too risky; “It’s basically playing Russian Roulette with you” the consultant said, ever so nonchalant. A 1 in 5 chance of dying on the table. A scary statistic, but to me better than a 5 in 5 chance of dying, drowning in my own blood, within 2 years. Thankfully, the doctors at Addenbrookes in Cambridge came to my rescue and ultimately saved my life as they decided the only thing to do was transplant my liver, and my pancreas too as there was no guarantee my pancreas would return to normal with a new liver. To make this operation easier, they decided to replace my entire middle, like a flip book (see picture).

9 months later I was called to Addenbrookes Hospital for my transplant as organs of the right blood type and size had become available, and a family at a time of great sadness had done an incredible thing and let their daughter donate her organs. After 2 operations (the main transplant lasting 12 hours), rejection, dialysis, plasmapheresis, clots, drugs with nightmarish side effects, a lot of tears, pain and trying to recover with lungs that had plummeted down to 15% of their capacity, after 4 months in hospital my body was finally (and slowly) getting used to my amazing new additions.
It was an extremely rough ride, and not being able to breathe properly throughout was terrifying. I was in in and out of hospital for the rest of the year, as my lungs just couldn’t deal with what an onslaught they had been subjected to. From 80% capacity before the transplant they had dropped to 15% - I was on oxygen for 4 months, and didn’t have enough puff to even blow my nose. One lung had collapsed and had hardened to a cement-like consistency, which I am still now in the process of fixing.
Organ donation has not just saved my life, but also vastly improved the quality of my life. I am now able to gain weight to stay healthy, can process medication effectively, am not dead, don’t look like I’m 8 months pregnant, and a massive silver lining is that my lungs are steadily improving too. They are now at 90% capacity, the best they’ve ever been.
The amazing thing is that my donor also saved another 2 lives that day – her heart and lungs were also transplanted, and her kidneys too. To me she’ll always be my hero, as I couldn’t have this amazing and fulfilling life I’m living now if it wasn’t for her and her selfless act of signing up to the organ donor register. It’s crazy how such a small action can save up to eight lives. I definitely think that’s 2 minutes well spent. What’re you waiting for, just bloody google it and do it!”
Huge thanks to Laura for allowing us to share her amazing transplant story for ‪#‎NationalTransplantWeek2015‬, you can find her blog at