Up The Farway Tree

The Sky's the Limit

I had my transplant clinic yesterday and achieved an all time lung function high of 107%! This is just over 3 litres - which can be compared to less than half a litre before my transplant. I never thought in my entire life I would get over 3 litres :-) They were also pleased that my blood pressure was fine (it is common to get high blood pressure due to meds), oxygen levels were 99% and x-ray looked good. An all round good report so I am allowed 4 months reprieve this time.

We discussed the problem with sinus pain and the fact I am looking at some serious pain medication now. The CF team have always wondered if my sinuses and joints have become worse due to stopping Azithromycin - this is an antibiotic but in CF people seems to have some anti inflammatory effect in the lungs and anecdotally the CF consultant has found it helps CF people with sinus problems. However it is also used as a treatment for chronic rejection post transplant so it was stopped so I could have it in reserve. The balance has seriously tipped in favour of restarting this now as my quality of life is suffering significantly, so we have decided to restart at a lower dose for a trial period of a few months - if it doesn't work then I will stop it but I can continue this if it helps. I really hope it has some effect on both my sinuses and joints as I do feel like I am destined for a life of chronic pain at the moment, which is not a pleasant thought. If it doesn't work then I have to keep in mind that I will be getting reviewed at pain clinic again so all is not lost.

I have been looking into things for us to do on our Florida trip in April - not long to go now! I have booked a mini van for dad to drive us all around :-) I have also been looking into pre booking some tickets for Disney World as you can't really go to Orlando and not visit Mickey Mouse - as I keep telling my father in law. He is not convinced but is going along with my plans hehe. I have been to Disney when I was younger - about age 10 I think - I am sure it will have changed a lot in the past 20 years but I am sure it will be great fun even as an adult. We are also looking at the Kennedy space centre and a trip to the Everglades. Ideas for what to do in the Everglades and elsewhere in the Orlando area would be much appreciated (leave message in comments section).

Not too busy a week planned. In fact I might just get time to start using my meditation CD. I am being serious. My next blog might be seriously chilled...