Wednesday, July 03, 2019

IV Time, Zzzz...

So my predictions were correct... My lung function is still down after 4 weeks of oral antibiotics so we’ve decided it’s time for some IVs. So the two week ‘refuel’ begins. I am currently sat in Treatment Room 1 having my IV test doses to check that I don't react to any of the antibiotics and can begin the two week course. I am on Meropenem, Teicoplanin and Tobramycin this time so will be 'hooked up' 5 times a day. This is because Meropenem is 3 times a day, Teicoplanin once a day and Tobramycin once a day. But 6 times tomorrow as the Teicoplanin is twice on the first day. Then when I’m not attached to an antibiotic, I have to do my physiotherapy treatments, which increase to 2-3 times a day when I'm unwell. This involves breathing on a Bipap machine- see CF dictionary page above for what it does.

Wish me luck!

Wednesday, June 19, 2019

A little update and CF Week 2019

Wow it’s been nearly two years since my last post. Life’s been pretty crazy in those two years which is why I guess I haven’t updated the blog in all this time, I’ve even moved out of my Mum and Dad’s house, which I thought I’d never do! However, after reading Five Feet Apart book by Rachael Lippincott and then watching the movie I thought about writing a little diary about my life with CF (but again haven’t yet got around to doing so) and now with it being Cystic Fibrosis Awareness Week I thought what better time to do an update. I clearly had the same idea almost two years ago during Organ Donation Week haha.

A little more about me, just in case you’ve forgotten who I am. I’m 23 years young, have Cystic Fibrosis and now Cystic Fibrosis Related Diabetes too. So, life’s all fun and games whenever you want to eat to remember that first you have to:

  1. Check your blood sugar by pricking your finger
  2. Inject yourself the right amount of insulin based on what your sugar levels are and what meal you’re eating.
  3. Take your Creon throughout your meal (check CF Dictionary above if you’re not sure what these are). If you take all of the required dose before eating and then struggle to eat all of your meal, you’re basically screwed and risk spending a few hours later on the toilet, sorry for the honesty!

I now live with my boyfriend Craig who has been my partner, best friend, nurse, physiotherapist, you name it, over the last year. I knew he was the one when I arrived on our first date with an IV drug hanging from my portacath and he asked if he could flush it off instead of running a mile. I’ve known of Craig for many years as we went to the same school, although he is five years older than me. But we got talking many years later when we bumped into each other in a nightclub, classy eh? Anyway, I’ll leave that there as Craig is probably cringing as he reads this and will moan about it later.

I work in a Primary school that I attended myself as a child. I am also slowly completely a Foundation Degree in Teaching too but have had to defer until next year after a scare to my health that I had in January.

So back to my life and the joys of Cystic Fibrosis.

At my recent annual review, my lung function was down slightly from its best and my sputum has still grown MRSA and Pseudomonas, so I’ve been on oral antibiotics for four weeks now. I did two weeks of Septrin but my lung function stayed exactly the same percentage and just made my chest a lot more productive. So, I then started a two week course of Ciprofloxacin and Linezolid which again I think has only helped to some degree so it could be IVs again when I go back to the CF Unit on 2nd July.  Although I haven’t been in hospital now since January when I picked up a sickness bug and ended up with tonsillitis too. That was a scary time as I couldn’t eat a single thing for a week and ended up coming into hospital via A&E. I would say that has been my worst time ever. My lung function dropped right down to 37%. Being on antibiotics that aren’t my usual tablets has its side effects and when I say side effects, I mean ALL of them. Whenever my pharmacist prescribes me with medication he always gives me the side effects booklet despite if I have taken them before as he knows I literally get all of the listed ones. So, I’m now on a week of more antibiotics to cure the side effects I got.

In the last two weeks I’ve also had other problems occur too. Such as my blood sugars dipping to 3.4 or going high to 17.6! The diabetic team told me there isn’t really an explanation to blood sugars with CF Related Diabetes and it takes a few years for your body to ‘get used’ to it after diagnosis. For example, on Monday I had 1 unit of insulin with breakfast and my Calshake at 8:15am and by 10:30am my levels had dropped to 3.4. So yesterday I had no insulin with breakfast and found myself having sweats to then realise my levels were 17.6. There’s arthritis and joint pain down to the CF too which randomly comes on. This week it’s been coming on each day at around 2pm, so by the time Craig is home from work I’m walking like an old lady if I haven’t taken any pain relief. It usually goes again after a few days though so hopefully by Friday the pain has eased.

Anyway, there’s just a little update of how my week is going! My real reason for writing this blog is because it is CF Week 2019 which is a week dedicated to raising awareness of Cystic Fibrosis by kindly donating and wearing yellow to secure a brighter future for people like me with CF. You can find out more on the Cystic Fibrosis Trust website. However, I am hoping to raise a small amount towards the fantastic Cystic Fibrosis Unit I attend at Frimley Park, who are currently campaigning to expand the CF Unit to a 10 bed in-patient unit with 10 treatment rooms so they can continue to support and care for people like me.  As you may know with Cystic Fibrosis, there is a segregation policy in place where I cannot be around other patients with CF due to risk of infection. Therefore, with your support, myself and other patients can receive the treatments needed and feel less stressed about missing home during two week hospital admissions.

Below is my link..

Many Thanks!

Wednesday, September 06, 2017

Organ Donation Week

But you don't LOOK ill? Why are you parked in a disabled space? How comes you only work part time? How comes you spent a week in Ibiza if you're ill? The questions I get asked on a regular basis by people who are unaware of what CF is and how it affects me. 

Listen to this video and look at this photo of me and then continue to ask yourself these questions

I may look 'well' to you but you couldn't actually be more wrong. Each day my lungs are slowly deteriorating due to a build up of mucus which I cannot clear and it's becoming more of a challenge to keep well. Think of it this way, when you catch a cold/chest infection your body works its hardest to clear that infection and it's gone within about a week. The build-up of mucus in my lungs causes chronic infections as I cannot clear what's stuck down there which leads to a reduced lung function, and I often end up in hospital on iv antibiotics for weeks. To avoid this from happening as regularly I spend hours doing treatments, physiotherapy and nebulisers but they are only to keep my lungs healthier, unfortunately they aren't a cure. 

CF also affects my pancreas as it is blocked with mucus meaning that the enzymes required for digesting food cannot reach my stomach. This also means I cannot absorb fat. Therefore I have to eat lots of fatty foods and take enzymes (tablets) every time I eat and if I don't it will cause more complications. 

So I may not 'look' ill to you but I definitely feel and sound it. 

So, why are you parked in a disabled space you ask? Again, although I look 'well' I can't actually walk more than 20metres before I need to sit down or stop to catch my breath. I often have to remind my family/friends to slow down as I can't keep up! So next time you go to judge someone for being in a disabled space, just remember not all disabilities are visible! 

Why do I only work 20 hours a week? The harsh reality of CF hit me when I started a job, working 40 hours a week around 4 years ago in August. By the December of that year I dropped my working hours to just 16 a week. This was because I physically couldn't do the hours as my body was becoming too tired and I was nearly asleep in the afternoons. I also wasn't finding enough time to fit my treatments in as I was coming home and just sleeping as I was too tired to do anything else. Therefore I work part time now, just mornings I'll add, so I can come home and have an afternoon nap to recharge myself before doing all my afternoon treatments. That way I can try to stay well as I have more time to focus on treatments. 

On to Ibiza now. I spent a week of partying and having fun with my sister where we didn't see a bed until 5am most mornings and didn't wake up until about 4pm. Sounds great right? Not so great when you think you'll be able to keep up with everyone else despite the fact you have CF. Food wasn't really on the top of the list of priorities when in Ibiza so we sort of just ate when we were really hungry and often forgot about it otherwise. This meant probably only eating one meal a day- if you can call a slice of pizza a meal! This is definitely a mistake I won't make again. Remember me saying I don't absorb fat? I came home to find all of my clothes were too big and I'd lost 11lbs in weight in just a week! So I'm back in size 6 clothes and on lots of supplements to try and get my weight back up. Although my lungs felt fine for about a week after getting home, I picked up a cold from somewhere and it's gone straight to my chest. 2017 has been my best year as an adult with CF as I have stayed the most well that I have been in years. However, this week has given me a little reminder of how CF really affects me when my lungs are struggling. Let's just say my lung function has dropped 20% and I am non stop coughing and struggling to clear the mucus even with my physio equipment. I went to the hospital on Friday and was prescribed with some oral antibiotics but they have made me feel groggy and worse! So no doubt it will be a trip to my second home soon (the hospital) for some ivs. 

So why am I writing all of this and why now? It isn't to make anyone feel sorry for me but it is to outline how CF affects people. I am doing this because it is organ donation week and I am urging all of you to sign up to the organ donor register! Luckily, despite all of the above, I am still at a stage where I can live my life with these lungs. However, this may not always be the case and it wasn't for my cousin Sian and many other young people. By signing up to become an organ donor, you could help people with CF get that second chance at life.

Friday, June 03, 2016

Annual Review 2016

Hello!! Look at me.. I've remembered to update my blog! 

I had my annual review yesterday which I think went well. However I don't get the results until the end of July. 

I arrived at 8:30am where Judith took my blood straight away to begin the glucose tolerance test. Gotham then did my obvs and lung function which is still up at 63% so that's good. After this I had to drink the sugary drink for the glucose test. I absolutely hate the drink and it takes me about half an hour to drink it every time! However, they have changed it and it actually has a bit of flavour to it now. I managed to drink the whole glass in less than 4 minutes... Go me! An hour after finishing the drink Judith took my blood and again after two hours and I was then finally allowed to eat! I now let her take my blood without Emla cream which if you know me you'll know how needle phobic I used to be. 

In between the times the blood had to be taken, Judith did the normal annual review talk with me where we talk about having children, transplant, my worries, my future and a few other bits.

Charissa came in with a student dietician and we discussed my weight and how my day usually goes eating wise, such as what I eat and how many enzymes I take a day. My weight has improved since last year and is managing to stay up without any supplements so Charrissa was happy with that. What she wasn't too happy about though was the fact we put my target last year as 'to try a strawberry' and I still haven't done it! I told her I drink strawberry daiquiris but unfortunately she told me that doesn't count haha! So she has told me we are doing a 'strawberry challenge', and at my next appointment she is going to bring strawberries along and make me try one so there is no getting out of it haha! This target was set because I am so fussy and don't eat any fruit. After this, Charissa and the student did a few tests including the grip test, where you have to grip your hand on this handle thing as hard as you can and it gives you a score. Last year my highest score was 18. This year it was 22.4!!  

Once all the bloods had been done and Charissa had finished, Gotham took me to X-ray. Unfortunately, Parkside was closed so I had to go down to the normal X-ray department and ended up waiting over and hour despite the receptionist saying she would 'fast track' me. Once it was finally my turn I had two X-rays; chest and abdominal. 

By the time I got back to the CF unit, I had missed my lunch so had to order something else and it was 1:10pm already. This then made me behind schedule and everything else seemed to be a bit of a rush. 

Lisa, the physiotherapist, came in and saw me and we quickly discussed my lungs and how I have been feeling chest wise over the past year. I am also supposed to do a fitness  test but Lisa had to go somewhere so I didn't get to do it. I missed it last year for some reason too so that's two years with no data! She said hopefully we can do it at my next appointment. 

Alice, the research nurse, then came and saw me. Back in January I saw a new 6 month clinical trial that the CF trust are doing so I asked Dr. Orchard about it who then passed me on to Alice. The trial consists of getting many biometric results daily and uploading them to a smart phone. You have to record your lung function, weight, oxygen levels, steps count, how well you've slept, how well you're feeling, how bad your cough is on a scale of 1-10, and  you also have to do one sputum sample a day. So Alice came to set me up on the trial and gave me all the gadgets and showed me how to use them. The gadgets include; a bluetooth scales, lung function monitor, oxygen levels machine, fitness band (a bit like a Fitbit), a sputum pot for each day which you freeze once doing the sample and then take back to the unit when you can (a bit gross I know) and a smartphone with an app created by the CF trust where you upload all of the data. The trial is for 6 months and you get to keep all of the gadgets at the end. But can drop out whenever you like. I'm looking forward to it as I think it is going to be really interesting to see all of my results. 

Judith and Gotham came and did an ECG test on me which didn't take too long. Then finally I saw the pharmacist and we went through my drug changes over the last year and there has surprisingly been a few more changes than I thought. 

I was then allowed to go home 6 1/2 hours later! 

I didn't go straight home though! For years since before I was 18 I have wanted a 'just breathe' tattoo which is kind of known as the CF tattoo. Miley Cyrus has it because she did a starlight wish for a young girl with CF who sadly passed away not long after. I have also seen a few photos of girls with them and have just really wanted it. The last month I have been really thinking about getting it and contacted the local tattoo studio in Basingstoke and me and Abbi were going to book in to get them done. She wanted 'Jones' and a double infinity. However, last week she text me and told me she had gone elsewhere with a friend as we didn't hear back from the local studio. So yesterday I decided to go and get it done at the 'walk in' studio in Camberley. It took less than 5 minutes and as the man was doing it I thought 'oh it's not actually that bad' but as the needle got closer to my front it started to  really hurt! I love it though and can't wait for it to heal.

Sorry for the really long post, but I guess it makes up for not posting very often! Night night :) 

Sunday, April 24, 2016

Vancomycin Nebuliser Trial


It’s been a very long time since my last update, nearly a year in fact. I seem to never have to time to sit down and blog like I used to! This last year hasn’t been a brilliant one for me CF wise. It has been a real battle to try and keep my lung function above 60%, so I have constantly been on different oral antibiotics, Iv’s and nebulisers. I recently had some Iv’s at the beginning of March which managed to boost my lung function back up to 65%. However, by the beginning of April I was feeling rubbish again so have just finished a two week course of oral Septrin. I had hospital last Tuesday and even with the Septrin my lung function is still only just at 60%. Dr Orchard has been talking to me about a nebulised antibiotic called Vancomycin for quite some time. But he wanted to do some more research and speak to other consultants before trialling me on it. On Tuesday, I finally got round to doing a test dose of it and am now trialling it for one month. So far, it has been going ok, it seems to make me quite breathless and tight chested but I do Bricanyl inhaler just before the nebuliser so that seems to ease the tightness a little bit. Hopefully this will boost my lung function and keep it stable. Fingers crossed! I am also on Chloramphenicol oral antibiotics for two weeks so hopefully they help out to!

Me doing the Vancomycin Nebuliser

Job wise, I now work in a junior school as a teaching assistant and I love it. I had an interview there back in December and found out on the same day as having the interview that I had been successful and got the job! So I have been there since the end of January. It is more hours than I worked at the nursery, but I seem to be managing it so far, so hopefully this continues.

Unfortunately, we lost our dog Maddy back in March as she had a tumour. We all really miss her.

I have to go back to hospital for a follow up of the Vancomycin trial on 13th May so hopefully all goes well! I then have my annual review on 2nd June, so if I remember to get round to blogging... I will do an update!

Sorry it was only a quick update!

Night :)

Wednesday, July 01, 2015

Annual Review Follow Up Appointment 2015

I went back to the hospital yesterday afternoon for my annual review follow up. I went to work in the morning and then left at 3 o'clock for my appointment at 3:30 and mum met me there. When I arrived I did my weight and lung function. Unfortunately, my lung function had dropped down again, but not massively. It was 63%. 

Dr. Orchard came and saw me and we spoke about my annual review results. We said this year hasn't been the best for me with my lung function constantly dipping and us battling to keep it up. But he said he wants to be able to find something that will help to improve my lung function and stop me having so many ivs, as I had two courses very close together back at the beginning of this year. He mentioned a drug which can be nebulised, but I can't remember the name, which they have started to use in America and have seen good results so he was going to look further into it and maybe think about trialling me on that. But in the meantime, until he knew more about it, he suggested trialling me on Bronchitol. Bronchitol is a a dry powder inhaler done before physio and is designed to reduce the amount of mucus build up in the lungs. He thinks my lung function is low because there is mucus stuck right down in the bottom of my lungs which he believes can be brought up with the help of Bronchitol and lots of physio. So I have an appointment with Jo next Friday to show me how to use Bronchitol and to make sure I don't have any immediate reactions. The review results were fine except that so there were no more changes and Dr Orchard said to finish the course of Septrin that Dr.Higton gave me last week and to keep on slowly easing off the steroids right down to 1 a day so I'm still on those for another two weeks. Then I have an appointment to see him again on the 24th July.

It's all fun and games in the life of a CFer!

Sunday, June 28, 2015

Not The Outcome That I Expected.

On Wednesday, Brenda called back about 12pm and said she had spoken to Dr.Higton and she would see me at 3 o'clock. So I got dressed and ready and packed a bag with some overnight things and clothes for a few days as well as my meds and physio machines as I was expecting to be admitted with how rubbish I had been feeling for the past fortnight. Abbi then drove me to the hospital so if I did have to stay she would stay for a few hours so I wasn't bored.

When we got there, I did the usual routine. I got on the scales and my weight showed the most I have ever weighed and my BMI was finally at 20.0. I guess five weeks of pigging out on food because you're on steroids shows on the scales. After doing my weight, Brenda set up the computer ready to test my lung function. I then went ahead and did the first blow and could not believe the results. 2.23 litres. I don't remember the last time it was that high. We were laughing at the fact it was so high when I was feeling so rubbish. I did two more tests and again they showed higher results. I always read the percentage in the end as I never really understand litres but my FEV1 results were 70%. I checked and it hasn't been that high since September last year and before then it was months ago. Typical. I feel really tight chested and breathless and I'm up all night coughing. Yet from my results you would think I was making it all up!

Dr.Higton came and saw me after and laughed with me about the lung function as we were both so shocked. I explained to her what had been happening over the last month as I saw Dr.Orchard at my last visit at the beginning of June. I told her about the reaction to the Symbicort, the tight chest feeling after doing the Aztreonam, the waking up in the night etc. She said she thinks that actually I am allergic to the Aztreonam judging by how I had told her it made me feel but because my body has had such a kick of different antibiotics, steroids, nebulisers and inhalers my lung function has managed to improve. So as an outcome, she told me to completely stop the Aztreonam and go back to my Promixin in the Ineb. She gave me another two week course of Septrin antibiotics as they had made a difference to my lung function and made me feel better prior to my appointment back at the beginning of June. And she said to carry on easing slowly off the steroids that Dr.Orchard had prescribed a few weeks ago.

So off home again I went. Lets just say it wasn't the outcome I expected! Since stopping the Aztreonam, my chest has been really loose and I have been coughing up a lot more sputum so have had to add in extra physio each day. I explained to Dr.Higton at the appointment on Wednesday that my chest was feeling loose and she said it was probably just because I hadn't had a nebuliser that morning and it should feel fine after the Promixin that evening. But it seems to have been loose for a few days now so I will have to bring that up with her. Wednesday and Thursday night I finally had 2 good night sleeps and didn't wake up coughing! So Friday as I was feeling a little better I went down to Devon to Jane's farm where Grandma and Grandad were staying in their caravan, as Dad was participating in the fishing competition along with Uncle Mark. But Friday night, my chest was at it again and I was up most of the night coughing so I don't know what went on. So Saturday, when they were taking part in the competition I had a nap in the caravan and me and Dad ended up coming home last night instead of today.

My chest has been a bit tight again this afternoon so I did some physio and managed to cough up lots so the Septrin must be loosening it all up.

I have hospital on Tuesday as it's my annual review follow up from May so I will get all the results back from that. Dr.Higton is on another ward that day but she said Dr.Orchard will decide what to do with the steroids and when to see me again after the antibiotics providing my lung function is still high. I hope he stops these steroids those as my face is so chubby where I have been eating so much where they make me constantly hungry haha!