Up The Farway Tree

Day 19 - Tuesday

Today has been quite busy and tiring, but in a good way. This morning I was up early and determined to get to the gym on time today, which I did manage. It was the same routine as before - bike, treadmill, leg and arm weights. I found it really hard going today, but Andrew did point out that I am now walking over to the gym, instead of using the wheelchair, so I have in fact progressed further than I think. It's just my usual impatience showing through - wanting to be fit as a fiddle after only a few gym sessions. If only life was really that simple. The physiotherapist was really pleased with my progress and will be arranging to do a 6 minute walk test before I go home. This same test forms part of the transplant assessment, so it will be interesting to see how much I manage now compared to the test I did two years ago.

This afternoon I was taking part in a study at another hospital. The study is looking at an association between acid reflux (common after lung transplant for various reasons) and how this might contribute to the development of chronic rejection. Although the study is quite involved I felt it was important to take part, especially since chronic rejection remains a process that is poorly understood. The study involved a fairly large tube being put down my nose into my stomach. I then had to lie flat on my back while they asked me to take sips of water (very hard to do lying down!) and measured pressures in the oesophagus. After that they put a smaller tube down, which I keep in for 24 hours. This measures ph (acidity) and tells them whether I am suffering from acid reflux. They can use this data in conjunction with biopsy results to see if there is an association. I will have to have it repeated at 3 and 6 months, but hopefully that will be tied up with my bronchoscopy appointments so shouldn't be too much hassle. It's not too comfy having this tube in, but then I did NG feed overnight for years before I had my peg and it's very similar to that, so I'm sure I can cope until tomorrow.

I was then moved over to the hospital flats later this afternoon. Not sure what to say about them....basic is probably the best word. The living room has 2 hospital chairs and a TV that doesn't work, although to be honest I haven't watched TV in all the time I have been here, and I haven't really missed it. Even though its not the most salubrious of surroundings it is nice to be away from the hospital environment and enjoying a little more privacy. This evening we have come over to Pat's (mums friend) for our dinner, which is where I am at the moment. We had the most delicious steak, which after a few weeks of hospital food was a huge treat. It's strange to think that I should now have no difficulty putting on weight and will have to think about eating healthily and not the usual CF high fat diet. In fact the anti rejection medications are known to increased both cholesterol and blood pressure so I will have to be more careful with my diet in future. I think truffles will still be allowed though...

I still don't have a date for home, but I have an appointment at the transplant outpatient clinic tomorrow, so they might be able to tell me more then. I feel ready to go home whenever I am allowed. I know there is still a long way to go in the recovery process and I am likely to have ups and downs over the coming months, but much better to be back home sooner than later. I will try and go with the flow though, and at least I know that during the day I can pop over to Pat's, which makes a huge difference. I also still have to attend the gym in the mornings, so that will be ongoing until I get home. I will then have to devise a plan for myself to keep up the good work I have started. I am so motivated to do this though, having been unable to do so for such a long time. You have no idea how wonderful it is just to be able to walk the length of a corridor without getting out of breath. Even the simple things like brushing my teeth or getting washed (I used to sit down to do these things) are so much easier. Goodness knows what I will be getting up to once I actually regain some fitness and stamina....