Note the 'For now' part of the original statement.
I love my little CF family in the hospital. Currently in are: Rhiannah, Jim, Hannah and John. Rhi went to my old high school so I’ve known her for years - we talk boys. Jimbob is the cutest button ever, looks like he belongs in a Disney movie. Hannah I’ve only just started speaking to - strong independent woman type, love it. And John’s in his mid 40s and giving me weight gain advice/general life lessons.
I never used to chat to other CFs other than Holly, my oldest CF friend, mainly because I didn’t know if we’d have anything in common and everyone used to keep themselves to themselves as we’re not allowed physical contact (due to cross infection risks). But now every time I’m in I’m chatting to someone. We sit in each other’s doorways and have a natter about all sorts - CF problems, relationship stuff, work, uni, plans, you name it. They’re like a little family that keep you plodding along and they understand on a whole other level to your friends and family. I love them (and the others - Becki, Siobhan, Beth, etc) a ridiculous amount, even the ones I know less, because I know that we’ll always have a special unspoken bond that you just DO have with people on the same level as you. Same goes for the CF lot on here and twitter actually - they just, get it?
It’s just such a great shame that I can never hug these guys. Not without risks anyway. Because they all need a hug sometimes and they just generally deserve squeezing for being so great.
Ironically Magnetic Man - I Need Air just came on on shuffle.
It’s just a selfie kind of day.
Injecting some drugs man. You know how we do.
Been threatened with a return to hospital already and I just want to run away. Shame that’s the one thing I can’t do, particularly today, as I can’t even walk from the living room to the kitchen without coughing and up or down the stairs without being sick.
Just fuck the fuck off.
I watched a slice of my 16 year old self tonight. I feel all euphoric in the strangest of ways, like some of the weight has been lifted off my shoulders.
Around when I turned 16 I was never formally diagnosed as depressed, and I’ve since found out why - my doctors at the hospital (big scary cf paediatricians) told my mum that most CF patients experience a patch of depression and resentment for their condition. I was though, for all intents and purposes of this post, depressed, at the same sort of stage as Rae. I wasn’t big, I didn’t cut, but I had problems of a nature that I didn’t think I could escape.
This is it, laid bare, if you were ever curious to know:
So after 2 more weeks of IV torture I’m allowed to go home. I should be really excited about this prospect but the more I stay in hospital the more nervous I am about leaving. What if my heart goes again? What if my lungs just fuck up all over again in a matter of days? What if I contract another mystery infection?
All these things could get in the way of trasplant and I’m seemingly constantly worrying about all the potential things that could prevent me from having one. Even though I contracted an infection here in the hospital it still feels like a safer little bubble than outside.
Don’t get me wrong, I can’t wait to have freedom and get stuck back in at uni. But something about it all is making me feel uneasy, and my heart’s pumping away just thinking about it.
While I was having my heart op today, my little sister (Jess - my nearly 7 year old mini me that lives down south with my dad) wrote this prayer for me and read it out in assembly at school.
As you know I’m not religious but this had me crying for a good half hour and it’s even reduced grown men to tears. All I want to do is squeeze her and have a girly sleepover and just do things that sisters do. She’s my little angel, and when the going gets rough she (along with my two brothers) always saves the day.
Love you jaffacake xxxxxx
So today (as I’m sure some of you are probably aware) I went ‘under the knife’, sort of, for a heart ablation operation. The operation was basically to burn off the extra electrical currents in my heart to stop them from confusing my heart and sending it into SVT (a heart rate of 250bpm - triple your average heart rate).
The surgeon made 3 small incisions in my groin and passed catheters through my veins/arteries up to my heart. The catheters were positioned to secure the area of the heart that they were working on, before one of them (a metal rod) was heated up and the electrical transmitter bits that were being naughty got burned, in order to prevent them from working again in future.
Initially the doctors thought this was a 3 hour operation, tackling one dodgy electrical signal area… only to find 2 more during my recovery. They managed to successfully destroy the 2 main problem areas (the ones that are likely to cause my heart palpitations and rhythmic problems) but one of them was too close to my heart’s pacemaker to risk it. Hopefully though, as this area only shows a minor fault, it shouldn’t react in future (fingers crossed).
I was awake for the whole operation. At first they lay me down, gowned and wearing sexy paper knickers/dvt socks and attached me to a cardiac monitor and an electric shock pad that was later used to induce tachycardia. I was then given some mild sedation and local anaesthetic was used to numb the groin. As I was away with the fairies a bit they made 3 small incisions and pushed the 3 catheters up to the heart - the incisions were painless but the catheters became uncomfortable as they reached the heart. Once the catheters were in it was a case of being under a constant xray in order for the surgeons to find the right spots to ablate. Tachycardia was induced with a shock to the chest and my pacemaker was controlled using the shock pad for the duration of the operation, causing hard and fast palpitations for the majority of the operation.
Adenosine, the drug used to stop my previous episodes of tachy was used in great doses - usually you only have about 2mls to restart your heart - it hurts like a bitch and it feels like you’re taking your last breath when you have it (ask anyone that’s had any major heart procedures!). During the operation however I had around 50 mls in total, so it was very painful! That combined with the local and sedation wearing off very quickly resulted in a very uncomfortable 5 and a half hours… HOWEVER, I survived and am in less pain now. I’m having to stay in bed tonight without moving too much, putting pressure on the wounds if I cough or sneeze to prevent opening them up again. I’m also drugged up to the eyeballs and stuffing my face with food.
Thankfully it’s over and I’m doing well. One op down, another major one (hopefully) to go.
This is my ‘I’m a badass, fuck you operation’ face.
And my ‘I’m a little bit scared they’re going to burn a hole in my heart’ face.
(In reverse order)
Rocking this gown like a Dolce and Gabbana. You should see the paper pants, I look like Tommy from the Rugrats in these badboys. I can totally pull them off though, especially with the DVT socks - they’re sex on legs (almost literally).