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!

Wednesday, June 24, 2015

I've finally posted an update after 4 months!!

It's been months since I updated here. After Grandma recently came over and said the exact date I last did a post I thought maybe I should finally get round to updating! Well my health hasn't been great this year. Since my last update in February, I had IV's again in April and have been put on various different antibiotics and steroids and just missed them about 3 more times where my lung function has managed to creep up a little bit. But now I'm at a low point again and think I will probably be admitted to hospital today. 

Back on Monday 8th June, I went up for a hospital appointment following a recent dose of oral antibiotics (I can't remember the name of them now) I had not had before and steroids. I had just been to Disneyland as well and with the help of lots of walking and different antibiotics, my lung function improved and I was feeling a bit better! At my appointment before this, Dr. Higton suggested to trial me on a new nebuliser when I got back from Disney so Dr. Orchard increased the length of time I would be on the steroids but to slowly drop the dose as the weeks pass rather than just put a stop to them all together incase I didn't get on with the new nebuliser. Then Jo came and saw me and got me started on that. The new nebuliser is called Aztreonam and is done in a whole different new nebuliser called an Eflow. It's pretty simple to use and the drug has to be done 3 times a day. Dr Orchard also started me on a new inhaler called Symbicort. So off I went home feeling a bit better and ready to start my new neb and inhaler. Mum went away to Turkey the following day so it was lucky I was feeling better otherwise I would have had to stay in hospital for two weeks where mum isn't at home to help with the home IV's. 

By the Thursday I wasn't right again. A horrible rash had appeared on my hands and feet, it had made them go very dry and itchy. I knew this was an allergic reaction as I am allergic to another drug and get this same reaction if I take it. So I called the hospital on Friday and spoke to Brenda. She spoke to the doctors and they said to stop the Aztreonam over the weekend and see how the rash is and call them back on Monday. After speaking to Brenda, I realised it could also be the Symbicort causing the reaction so I stopped that too. By Monday the rash had gone so I called the hospital and spoke to Emy. I told her I wasn't sure if I it was the Aztreonam or the Symbicort causing the reaction and from reading the side effects to them both I think it was probably the Symbicort so I was happy to try the Aztreonam again. So she said that was fine and to call again in a few days to give her an update. Well by Wednesday I was now feeling very tight chested, had a constant tickly throat so kept coughing and was having sleepless nights. I went to work on Wednesday feeling very unwell so once again had to call the hospital.  I spoke to Brenda on Friday and asked her if she could speak to the doctors and get them to prescribe me a different inhaler because before I had stopped the Symbicort my chest was feeling fine when using the Aztreonam.  So they prescribed me with Seretide inhaler which Abbi went and collected for me and I called into work sick on Friday as I had been up all of Thursday night coughing. 

By Saturday the Seretide inhaler had given me a sore throat and I was now full of cold with the tickly throat still there. I had another sleepless night on Friday so was not feeling good again. Saturday night and Sunday night were the same so I spent all of Monday in bed to try and make sure I would be well for work yesterday. Monday night was once again the same and I was awake at 3am for about two hours just cough cough cough every two seconds. But I went to work yesterday to see how I'd get on. By my lunch break I felt really breathless and tight chested so went and called the hospital and got sent home from work. Hospital didn't answer so I left a message and then went to sleep in the meantime. I woke up at 5:30pm and tried the hospital again and got through to Judith. I told her what had been happening over the past few weeks and she said to stop the Aztreonam and she would leave a note for Brenda to speak to the doctors today and hopefully get me seen. She asked if I think I needed IV's but I said I wasn't sure because I have never felt this ill for this long but then again I don't know what my lung function is doing as it all could just be in my throat. 

I was up again in the night at 1am for over an hour and then again at 4:30am so I haven't gone into work today and I am just waiting to hear from Brenda so I know when to go to the hospital. Hopefully they finally sort me out and I start to feel better soon!  

Mum and dad are back from Turkey tomorrow so hopefully if I'm admitted to hospital I won't be there for too long as mum can help out with home IVs. 

I'm going to try to go back to sleep now before Brenda rings. 

Saturday, February 21, 2015

February IVs

Back on the 9th February I had a hospital appointment following up from my January appointment. You may remember reading from my previous blog post that I had been up in the night coughing quite a lot so Dr. Higton told me to double up my dose of Omeprazle as it was most likely to be acid reflux. Since doing that, the coughing in the night stopped but my cough in the day has been very productive and I have been coughing lots. So at the hospital I was expecting the lung function to be lower than usual.

I arrived about 11:15am and mum met me there straight from work before her afternoon clinic started. When I arrived Jackie did my obs and I did my lung function. As I was expecting, the lung function had dropped to 50% which is quite low for me. Therefore, I was expecting IVs. Judith came in and saw me and asked how I was feeling and I told her I wasn’t feeling great. She said “Do you think you need IVs?” and I said “yes but I’m not staying in” and she told me they didn’t have any beds free anyway. (Thank god! Haha)

Charissa came and saw me first and wasn’t too concerned about my weight as it was stable to last time. However, I explained to her that I had been having some stomach troubles so she gave me a food diary to complete over the next few days where I include what I’m eating and how many Creon I am taking. She said Dr Orchard may want an X-Ray to see if I’m blocked up.

When Dr Orchard came in, we spoke about my stomach troubles first and he said after reading my notes and speaking to Charissa that the Omeprazle change of dosage would have had something to do with it because it stops the Creon dissolving as fast which would explain my stomach pains. But he would like an X-Ray to see if there is a blockage. Charissa also came back in and told me to change my Creon-fat intake to 9g. So to take 1 Creon capsule per every 9 grams of fat I eat.  Dr Orchard and I then spoke about my lung function and agreed that I would need some IVs for two weeks. He also said he didn’t want me going to work because technically I should be staying in hospital where the lung function is so low but he knows I will do all the treatment. But he wanted to see me one week into the IVs and if my lung function hadn’t improved he would then want me to stay in the hospital. So once all this was discussed, Jackie took me down to the X-Ray department to have my X-Ray. In the meantime mum had to go to work.

Once we were back at the CF Unit, Judith came and accessed my port and started up my test doses. Then she went to contact Calea to get the home IVs delivered. However, they don’t deliver until 48 hours after ordering so she had to call pharmacy to order all of the medication so that mum could draw up the IVs for the first 48 hours until the delivery arrived. The test doses took about 2 hours as Dr Orchard prescribed me with 3 different Ivs; Meropenem, Tobramycin and Teicoplanin. Then I waited for the pharmacy to bring the drugs up to the unit.

Since being at home mum and dad have been really helpful, getting up at 6am and doing all of the morning IVs and I have tried really hard with the physio and done it twice a day to cough up as much as I can. Then I went back to hospital last Monday and was so happy with the result..
My lung function was 70%!!!! It had improved 20% in just a week! IVs and hard work really do pay off!!! Because the result was so good Dr Orchard said he didn’t need to see me. So I just saw Charissa and Jo and then it was home again.

The IVs finally finish tomorrow evening and the one thing I am excited for is a proper bath!! I haven’t been able to have a proper bath as I can’t get the port wet. So I have been having to shower my hair first and then have a shallow bath afterwards.

I am also back to work on Tuesday which I can’t wait for. You’re probably thinking who wants to go back to work, but when you have been at home bored for 2 weeks and you enjoy your job you will want to go back!

I then have hospital again on Thursday at 2pm so I will wait and see what the result is then. Who knows, maybe the lung function is even higher!!