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 :)