Tuesday, 8 April 2014

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Exercise Bike

So, it's been another busy week! I had a physio from hospital come out to visit me at home for the the first time, and did some rehab physio on 3/4 of a litre of oxygen, which is half of the normal flow that I have been exercising on for a while. I have been on 3/4 at rest for the past two weeks, so I was very tired after exercising, and was quite exhausted the next day, so I had to sleep a lot. 

The Community Children's Nurse came out to visit us twice, too. She seems really caring, and very efficient. We think that she might be a big help to us, and it will be really good to have someone like that in contact regularly...she is going to visit us every week. 

I got a new piece of physio equipment to help with my rehab work, it is a recumbent bike. I used a recumbent bike when I was still in hospital in Bristol, and it really helped me, so I am hoping that I can get back into progressing with my cardio fitness, by using this. These things are always much bigger than they look when you order them from the internet, though...it is a bit of a beast!

We are still waiting to get an appointment at Great Ormond Street Hospital. Mom and Dad had an appointment arranged for today, just for them to go to speak to a consultant about transplant assessment, but it would have meant us all travelling to London, because they have to do all of my treatments, and it was decided that it probably wasn't worth the risks of disrupting our routine, and tiring me out. So, Mom and Dad spoke to the consultant on the phone, a bit like a conference call sort of thing! Initially, the consultant had been speaking to a lot of other transplant doctors around the country to ask them their opinions about the viability of transplant for me, in light of the bug that I seem to have colonising my lungs, which is called Exophiala dermititidis. The general consensus seems to be that while this bug is still there, transplant wouldn't be an option. So, we need to just keep working on eradicating it, whilst keeping our other major goals of my rehab at the forefront. Mom has been researching a lot (as usual) and looking into all of the transplant issues.
The consultant said to expect a letter soon, inviting us to go there for CF assessment as opposed to transplant-focussed assessment, which is what we initially asked for.

Another thing that we are still working hard on trying to improve is my weight. I have put on a tiny amount of weight on, but I still feel very full a lot of the time, and if I try to push past this, I get very nauseous. Coughing often makes me feel sick too. We are still trying to shuffle things around and try new things to help me get more calories on board. Dad has got me having more coconut oil, which has all kinds of health benefits, including antimicrobial properties. We've also been trying to get some prebiotics and probiotics in my diet. 

Thanks for reading, and please keep following and sharing.


  1. love reading your blog keep your chin up lovely xxx

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  3. Thanks for sharing the story. Its inspiring enough. And recumbent exercise bike workouts are really effective.

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