To Do List (in my lifetime)

I hate the thought of a bucket list!

I just don't see why the thought of your death should give you the motivation to do something with your life. This is your life, you're alive so if you can.. go do it! You shouldn't have to be kicking a bucket before you decide to forget all inhibitions and go wild. Life the life you love!!! Just go for it!

To Do List:-

• Get a job

• Move out

• Go to Iceland & See Northern Lights

• Visit Galway (Ireland)

• Sight-See in Rome

• Get my own book published

• Write weekly blogs

• Scrapbook every year

• Do London Marathon

• Do Manchester 10K for pearce ward

• Take more pictures

• Keep an annual planner

• Try yoga

• Have godson & godmum sleepovers

• Plan wedding

• Get married

• Go on more walks

• Stay organised

• Broaden my food horizons and try more things!

• Keep bingo up

• Learn to ride a bike

• Always have nice nails

• Own nice bathroom

• Watch a gorgeous sunset 

• Go to a pub quiz & WIN

• Try every TGI cocktails except milkshake ones or minty ones!

• Learn sign language fluently

• Always buy Alfie & Freddie books

• Continue to see all future X-Men movies at the cinema

• Finish writing out nans diaries

Have you ever wrote your lifetime to do list out? 

I rather enjoy reading people's little bucket lists. It's interesting what people want to do or achieve in their life. 

View Post

Bumpy Ride

You are told over and over again before transplant and after transplant that this isn't a cure. Ultimately, you're swapping one set of problems for another.
That's not to play down what an incredible, selfless and life changing/saving miracle that transplant is. I'm just saying, it's not the easy way out. It's hard, harder than you can imagine it will be. Once i found my voice after having the ventilator out post transplant, i remember saying,
"if things go wrong from here, that first breath i took on my own as soon as they pulled the tube out of my throat makes everything worth it."
Nearly 9 months on, sat here on my 3rd week of Intravenous Antibiotics out of a scheduled 6-7 weeks.. i stand by what i said.

Once I had got myself off transplant ICU and onto the normal transplant ward, i had everything running very smoothly. I was determined to get myself out of there and back home. Maybe it was because just 3 weeks prior to that day, I wasn't sure if I was ever going to be getting back home or maybe it was because it had been 3 months since I was last there. Either way, I was pushing myself with physio, I had revised my new treatment and medicines regime so I knew it almost off by heart and I was working on my erratic mood swings. Trying to wake up with a positive outlook for the day. 
One week on the transplant ward and our family was hit with tragic news, my beautiful, witty and strong willed nana had passed away. She was 82 with a wicked sense of humour and the biggest heart to love the biggest family she had brought into this world. It hit every single member hard, as you can imagine it would. She was the queen of our family!
Personally, I hadn't seen her since October 2014 due to being in hospital, I spoke to her on the phone through the hospital admission and due to recovering from transplant and still having chest drains in at the time, when she was taken ill in hospital and the family were told she wouldn't be coming home.. I wasn't allowed to see her, kiss her or give her my final goodbye before she left us.That was very hard for me to handle.More than her actually passing was.This made my mood spiral down and my anxiety creep up to an all time high.. my mood and anxiety were already out of sync due to the shock of going from near death, to full of life and all the crazy meds I was now on post transplant.It was a lot for my body to deal with but even more so for my head to.So first on this up and down rollercoaster post transplant blog is anxiety and mood.
I felt like nobody warns you about the effects it has on your mood and as I have mentioned on previous blogs. I found that extremely difficult to deal with.

A few days later, I had my first biopsy and was told that I had A2 rejection, something that is incredibly common in the first year of transplant. Your body is adjusting to having what is essentially a foreign body inside you. It's alien and not part of you so therefore, your body wants to investigate and attack, that's why you're on the anti-rejection tablets but of course that's all trial and error to get your levels balanced in your blood.
Next on this bumpy road blog, rejection.They're going into this blind for the first few months and so your first biopsy post transplant usually comes back with some form of rejection.

This is scored by the following:-
A0 = no rejection
A1 = minimal rejection
A2 = mild rejection
A3 = moderate rejection
A4 = severe rejection

So I had mild rejection and with this being a whole new world to me. I panicked. Regardless of everyone telling me not to as mild rejection is treatable.. I still cried about it!! haha.I think the word REJECTION is such an awful way to put it. It sounds, cold and final.The next day I was placed on a three day course of high dose intravenous steroids.The steroids gave me a boost in my mood, energy and appetite! Once the three days were up, I went home and when they repeated my biopsy a few week later.. It came back as A0! No rejection!!I've had a fair few bronchoscopies and lung biopsies since and all of them had come back as A0; until the one I had on Tuesday (29th September) it came back as A1, just minimal rejection.Due to it being A1, they aren't treating me with the IV steroids and instead, they've just increased my anti rejection medication for now. They seem confident this will clear it up and I will be having a repeat biopsy in a few week to find out.

What's next on this recovery rollercoaster? Tacrolimus Levels - poor absorption and side affects. I touched briefly on the last section that they struggle to get the balance right with your anti rejection medication at first.This usually settles after a few months or so and you get yourself a baseline.However, the consultants have found that people with Cystic Fibrosis struggle to absorb the meds and this can make it highly difficult to find that balance.My consultants have told me that I am one of three patients out of the 1000's they've ever treated that struggle severely with absorption. So much so, that I am the only patient in the Wythenshawe Transplant Unit that has their anti-rejection drug, tacrolimus three times a day and still have a baseline level between 4-6. The ideal is between 8-12 so I am on the lower side constantly.Last week I was on 2.0mg three times a day and my levels were 4.3!With my biopsy coming back as A1 they've increased my dose ever so slightly to 2.5mg three times a day. I am to have a repeat blood test next week to find out if my levels have gone up or not. Hopefully they will have.

Following on from my erratic tacrolimus levels, I am very sensitive to it. Which is very odd with me not absorbing it very well, but that's the way it is. So one I had left the hospital after my transplant, I was brought back in just two weeks after with being violently sick, bringing meds back up, unable to keep food or fluids down and dry heaving when there was nothing left to bring up. When I was on the ward, we found out why. My levels were high at 22 and this can be toxic which was causing a burning sensation in my hands and feet and also the cause of my sickness and vomiting.A week spent in hospital and we got the balance right again.There have been two more of these sickness and burning sensation episode since. With my levels sometimes being in the 'ideal' range of 8-12 but still causing the side effects to be too much. The doctors think my body is very sensitive to Tacrolimus and this isn't too rare.

Finally and the most lasting bump in the road was in May. Just 4 months after my transplant, I caught pneumonia and I deteriorated rapidly. Landing myself back in ICU on a C-Pap ventilator to help keep my airways open. My oxygen saturations dropped to 60-70 without oxygen and breathing was beyond difficult. It was an awful shock. I'd gone from experiencing life with the ability to breathe so easily to gasping and unable to get myself to the bathroom without feeling faint and unable to get my breath within a couple of days. It scared me, absolutely petrified me. The decline was faster than I would ever have anticipated and all I kept asking everyone was can this get better or have I ruined my chance by catching penumonia.Thankfully and luckily for me.. It did get better and after a week on ICU, I was back on the Transplabt ward for a week and then sent home on IV's. Unfortunately, that pneumonia didn't clear up as smoothly as we would have liked and my bottom left lobe is still consumed with thick sputum 5 months on. I have needed home IV's and bronchoscopies and Physio sessions at the hospital regularly since May. In fact, I have been on IV's more than I have been off them since catching pneumonia and I have weekly to two weekly clinic appointments so they can keep a closer eye on my progress. Progress which is very slow and very small but progress all the same!!



I haven't had the smoothest ride since transplant but nobody expects to! It's been a very bumpy road but one I am very lucky to get to travel on. I wanted to write this blog just to jot down some things that can occur after transplant. They are so small when you compare them to how i was before but it's not all plain sailing once you've had your transplant. 
There are still some hiccups, big and small! 
It can be scary too, you know you're on borrowed time but it's worth every second to have this new lease of life. 
I have spent more time than i thought i would in hospital post transplant but certainly on better terms! 
I am very, very lucky to be here writing this.. it could have gone a completely different way in the earlier days and even if it did.. 

"if things go wrong from here, that first breath i took on my own as soon as they pulled the tube out of my throat makes everything worth it."

View Post