Day to day life…

It’s dawned on me since starting this blog, that I actually haven’t explained a lot about cystic fibrosis & how it affects me these day’s.

Obviously family and close friends know, and my fellow cystic’s, but what about everyone else? I’m still really new to blogger & haven’t worked out how to put extra pages / tabs to include more information, so thought I would explain and give you the low down of 24 hours in Kimberley’s life!!

Cystic Fibrosis is one of the UK’s most common, life threatening, inherited disease, if two carriers have a child, the baby has a one in four chance of having Cystic Fibrosis. It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.

In ‘clinic styley’ letter form here is some information about my diagnoses & current treatment;
I have Cystic Fibrosis, CF related Diabetes, previous Allergic Broncho-Pulmonary Aspergillosis, Osteopoenia.
Previous Zinc deficiency with subsequent Night Blindness, Supplemental feeding through my Peg (feeding tube in tummy) Arthritis & finally previous Fungal Septicaemia.

Current treatment & medication I am daily on is as follows; (Most of this will be complete gobbledegook to you but it’s just to get across the extent of potions I have to take!!)

Alternate monthly nebulisers of Tobramycin & Meropenem which are taken twice daily.
Oral antibiotics, Septrin & Azithromycin
Risedronate for my bones although it has been discussed recently that I will now be having a yearly infusion.
Lansoprazole, Vitamin E, Vitamin A&D, Forceval, Cacit D3, Vitamin K, Ferrous Sulphate, Magnesium Glycerophosphate.
Prednisolone steroids, Symbicort & Tiotropium inhalers.
Creon 10,000 for every time I eat. Perative feed for over night & supplemental feeding. Senna, Sodium Docustate & Movicol to help my tummy with use of Klean Prep when it gets bad. Piriton, Zopiclone, lots of painkillers & finally Insulatard & Novorapid insulin.

Just one cupboard of some of the medication I am on

I have to have a high calorie diet as my body doesn’t absorb the nutrients from food I eat & usually have a lot of tummy trouble from blocked bowels. I do home iv’s (intravenous antibiotics) regularly via my portacath, usually every few weeks but now its to the point it’s only a few day’s break in-between finishing one course & starting a new one. I prefer to do it at home as I don‘t eat or sleep when I am admitted into hospital & I prefer my home comforts!!

My home IV Fridge

I have an oxygen concentrator which I am using now more than ever these day’s & use a VPAP machine for physiotherapy.

Much to my disappointment, I had to give up work in 2010 & my house was fitted with hand rails, an intercom & two corner stair lifts in June 2009 which are in constant use as now I can‘t walk stairs unless it‘s two or three…
I have a manual wheelchair decorated in playboy stickers & pink ribbon & more recently an electric wheelchair which was provided for me so I was able to get out the house if I wanted to or needed to whilst Stefan wasn’t with me.

I used to have a carer that would come in & do all the things I couldn’t do when I was on my own, but since Stefan has been home during the day’s we have cancelled this so the help can go towards people that need it more.
Looking after myself is a full time job, I always feel sick in the morning’s so it’s impossible to do my med’s first thing.

I used to think I was a very independent & active person a few years ago, I would still love to be working if I could & the fact that at times, more now than ever, I can’t even wash or dress myself make’s me really angry!!

Here’s hoping things will change in the not so distant future…. xxx
　
　

Tired, ill, stressed, scared & grieving…

I finished home iv’s on the Tuesday just gone but knew I had actually become worse.
I have been under a great deal of stress over the last few weeks & Stefan knows I have not been myself.
When I get myself in this state, my appetite disappears & I start feeling sick all the time, this can also be a side affect from my iv’s.
The stress is also another reason why I started my blog, it felt so good to let off steam & the fact I have had such a great response & a lot of support from my first blog made me feel really good inside.

Stef & I went to the RD & E on Wednesday for clinic to see my consultant.
My cf team know all about my past & many problems so it was no surprise to them when they saw me & the state I had got myself into.

My lung function the week before was 25% & I was too ill to do it this time round so hate to think what it had fallen to. I have lost weight, not a surprise to me considering I can’t bring myself to eat these days so my dietician gave me fortisip calorie boosters to shove (sorry flush) down my peg. (feeding tube in my tummy) as well as a good bollocking about keeping up my strength, blah, blah blah!

My consultant explained that obviously I have got to that stage that I just can’t live without the iv treatment anymore, however there is only one or two iv’s that actually do any good. He wanted me to rest my port & body for a few days, so I’m taking oral cipro on top of my other orals & then going back to start more iv's after the weekend.

He didn’t want to give me any type of anti-depressant medication at this time as it could cause a more negative affect, & would rather me & Stefan as a couple ‘talk’ to someone in the team. I felt like crap and just wanted to be out of there & curled up at home so we managed to leave about half four without seeing the ‘nominated person‘!!

I couldn’t eat tea again & Stefan had work so I curled up on the sofa, dosed up on painkillers & tried to move as little as possible. My sister Lauren popped in & we had a good chat & a cry, it was kind of a relief to know she knew how I was feeling, as Stefan is usually the only one who knows what’s going on in my head.

I eventually went up to bed, (I have two stair lifts, have had them for almost three years & cannot live without them) but my sleep was extremely restless, & eventually I put myself on my oxygen, I can be really stubborn but even I know when I can’t cope anymore….

I’ve just got a fortnight to go until we are down at Harefield again, I’m so scared, but at the same time, I just want to be down there & get a decision, I really don‘t want to live like this anymore.

Before I go, I want to mention my wonderful auntie Debbie & cousins Ross & Karly in this blog who at this moment in time are going through hell.
My uncle Kevin, who I loved dearly passed away 9 years ago, & eventually in time, Debbie went & found love again with Steve, a really lovely bloke with a cracking sense of humour. However, a few years ago he became very ill with cancer & he sadly passed away after a very hard battle on Friday evening (21^st)

My auntie is an amazing lady, to have lost my uncle & now Steve, & have a daughter with cystic fibrosis herself (Karly) she must have some incredible inner strength… I can’t wait to give her a massive hug on Wednesday when Stefan & I attend Steve’s funeral.

RIP Steve - you will always be remembered. xxx

 Dearest Steve with my cousin Karly who also has Cystic Fibrosis

　
　

Burying my past & looking towards my future...

Well I’ve finally done it! I’ve started my blog…
I’ve always enjoyed reading my other cf friends blog’s, such as the amazing Kirstie & beautiful Kerry, but everyone is different, so here is my story…

Starting from the very beginning, people who are close to me will know that I haven’t had any easy life & that’s not even bringing my cystic fibrosis into it.
From being badly bullied at school & other family issues; including my father disappearing on me when I was 15, to bad relationships & friendships leading me to hate my life so much I would self harm.
I’m not proud to admit it & long have been the days since I last self harmed, but am still very scared to this day it will bubble up to the surface when things just get too much.

I guess I have never recovered from my father doing a runner.
At the time I was seeing a lot of him when he decided to tell me he was moving abroad but would stay in touch & I could visit when I liked…
I received a postcard a few days after his flight & to this day that was the last I heard of him. I had tried to track him down, contacted police & such like, but it just seemed he didn’t want to be found. I block it out these days, I mean if I meant nothing to him, then why should he exist to me?

Me (yes laugh it out!) with my father & older brother Leigh

My younger brother & sister, Ben & Lauren

Family issues are emotionally draining for me, all my siblings are half, but that has never made a difference to me, they are my blood & I love them all dearly. Even if at times it doesn’t feel like we are that close.

I was badly bullied at school for the colour of my skin & as my cf grew more visible to people, the fact I was a ‘granny’ in a young girls body. This affected me in more ways then one & it was a very difficult time in my life as things weren’t good for a very long time.

I guess I wasn’t really happy up until very recently, December 2009 when I found my soul mate. Someone people never thought would have been a good match. Six years younger than me, & one of my younger brothers friends, Stefan was my knight in shining armour.
We clicked instantly, had so much in common, absent fathers & unlucky pasts - but he saw through my cf. Instead of blaming me for being ill (as other people had done in the past) he understood it, embraced it. He couldn’t care less if I was coughing up blood & green stuff, had to stop when walking to catch my breath, or something I detest, having a mickey (feeding peg in my tummy) sticking out of my body, so unattractive but beneficial to keeping me strong, he just loved me for me.

I had never ever come across someone so understanding, caring & loving - yet so misunderstood by other people. They thought it would never last but I knew we would be together forever.

The happiest day of my life to date was this year, July 2^nd when we were married in front of family & friends. It was everything I had ever wanted, the ceremony itself so emotional because we know that things aren’t easy now & the future is a guessing game, but Stefan has my heart & I want to have a happy and long life with him so intend to do all in my power to try & make that happen.

My hubby & I signing the register...

On our honeymoon, in Tenerife

On September the 2^nd, Stefan & I travelled down to Harefield Hospital for my lung transplant assessment. I had all my tests done in the morning then had my consultation just after half one. I must admit I really liked the hospital, so small compared to others I had stayed in & it was obvious the staff knew what they were doing - they made me feel comfortable & at ease, especially my transplant co-ordinator Brian.
The consultation was a lot more straight forward than what I initially thought it was going to be, my doctor’s opinion was that the time was definitely right for me considering my very poor quality of life, but at the same time explaining that obviously it wasn't a cure or the be all & end all.
We discussed the procedure, success rates & risks, he looked at my x ray & told me difficulties they may endure during surgery.
As far as I was concerned if it got me five more years with my husband its what I wanted to do. At the rate my body is deteriorating I wasn’t sure how long I had left so it was decided there & then I wanted to come back for all the tests to make sure I would be ok for the procedure.

We go back for a three day stay on November 13^th & yes I am absolutely petrified. I will find out within a week after the tests if I’m going on the list.
So many things are racing through my mind every second of the day, but all it comes down to is I just want to live happily with my husband & not struggle anymore.