Thursday, 6 November 2014

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I'm getting stronger!

Hi everyone!

During the past couple of weeks or so I have been continuing to make some progress, although the past week has been difficult because I have been struggling because my nausea has got worse again. I have been continuing to work on building some strength and 10 days ago I walked for the first time in months (since before my last stay in intensive care)!! I know that all of the bed exercises and then the seat-to-stand exercises that I’ve been doing have helped me to build up to this, but I also know that my nutrition improving has also played a big part. I can actually see some quadriceps (front of my thighs) muscle building! It felt so amazing to walk after so long! 


Mum and Dad helping me walk!


A few days ago, I started doing a bit more specific upper body exercise, with shoulder raises, gripping exercises and throwing and catching. It was good, and I feel stronger there than I have for a long time, too.

I last weighed myself a week ago, and I’d put more weight on again! Here’s how my weight gain has gone:-

03/10                     32.3kg
13/10                     34.7kg
18/10                     35.3kg
24/10                     35.9kg

30/10                     36.25kg

My albumin level has gradually come up, too, and was 28 earlier this week :-) That’s the highest it’s been for nearly six months!


Some of my blood results...

Two weeks ago they cultured Stenotrophamonas maltaphilia from one of my samples in the lab. This is the only bacterial pathogen that I have grown this year, and it is a bug that is multi-resistant, and they don’t know if it causes significant lung issues. They haven’t been able to test for antibiotic sensitivities, so I am on another two week course of ciprofloxacillin. Apart from the steno, I am still growing Exophiala dermititidis (the fungal pathogen).

10 days ago, we were told that the lab-tested sensitivities showed that the Exophiala is now “not as sensitive to the Itraconazole (anti-fungal drug)" that I have been on for a long time, and that a newer drug, Posaconazole would be more effective. So, I gave the Posaconazole a go for 24 hours, with a double dosing for loading. Unfortunately it made me so nauseous that I basically couldn’t do anything, including eat or do physio. Because of this I switched back to Itraconazole tablets, but I have had to change to IV Itraconazole, because although I was having 800 mg a day, they still were not reaching therapeutic levels in my blood. I've also gone back onto Caspofungin as I have been having temperatures.


I have started getting red patches and itching all over every evening when my daily dose of intravenous Caspofungin is going through. It has been driving me mad. So, I have started having Piriton to try to keep this under control. The lab tests suggest that the Exophiala isn't sensitive to Caspofungen, but I have been on Caspofungen a couple of times during my time in Bristol, and my chest symptoms have improved, so it seems to be an important drug for me. The difficulty is that this seems to be another drug that adds to a degree to feelings of nausea.

I started weaning down on my Vapotherm settings, and I swapped over from the Vapotherm machine to an Optiflow machine. So far, so good, and the Optiflow is generally more comfortable. I want to keep weaning to get off the Optiflow as soon as possible, so that I can start walking further, and start getting out and about again. I haven’t been out of my hospital room for more than a month.

Some nice things have happened over the past few weeks, too. I watched the repeat of the X Factor the week before last (it was dreadful!), had a cheese ploughman’s at 2am (to add to the X Factor cheese), did some Facebooking, and went back to sleep at 4am (3am, because the clocks went back). My bodyclock is something else, these days! The Halloween X Factor was much more entertaining by the way!




Also, I had some really exciting news. My first choice wish with the Rays of Sunshine charity, which I was previously told would not be possible, is now going to be arranged…I’m going to meet One Direction!!!! I'm so excited! I started up a kind of 'campaign' on Facebook, Twitter and Instagram, to try to get to meet them! Lots of people posted a picture I put together for my  #HarrietToMeet1D campaign, and the mum of a girl with CF who was meant to be meeting 1D through Rays of Sunshine, but had decided she didn't want to anymore, contacted me and said it may be worth contacting them to see if I could take her place (as only one person with CF can go to these meet ups due to cross-infection risks), so I got my dad to ring them up straight away and they said they were already going to offer it to me! I was over the moon!!! I can't wait!





I have started using Twitter again a bit more in the last week. I've had a lot of tweets and follows from celebrities! Here is some of the tweets I got...



























I also got this weird tweet from James May...




What's his problem?!

Today we had a meeting with the doctors about transferring me to Manchester. They suggested that I could transfer on Monday, however it would be a transfer to High Dependency, as they are not yet trained on the Optiflow on the Respiratory ward. They can't tell us how long it will be until they are trained to use Optiflow on the ward yet, so I'm not sure whether I want to go until they're trained because I don't want to be stuck in HDU for a long time when I don't really need to be! It is very much a Critical Care environment, similar to Intensive Care, and my parents wouldn't be able to stop at night either! :-( So, I'm going to try weaning off the Optiflow, starting with having 30 minutes off to start with and gradually building it up.




A card from my friend Lily :-)!

Thank you for reading!

Love,
Harriet xox

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