Thursday, March 27, 2014

Below 60... eeekkkk

So yesterday's check-up went great in terms of bloods and blood pressure and O2 sats and weight (gained 2kg, yay) etc.... but not so much the lung function. FEV1% is now 58%.... was hoping it wouldn't drop below 60% but it did. So the trend of a 2% drop per month continues... I have 3 sessions of photopheresis left (last one on 24 April)... after which  would have had 24 sessions. For now I won't be continuing with that, as 24 sessions are the standard and doing more than that probably wouldn't be of much benefit. So the plan is to continue testing my lung function every month and basically take it as it comes in terms of other treatment options.

I must say I'm surprisingly OK with it all. Glad to be finishing the photo in terms of my veins and sick leave (or lack thereof!!!) and the logistics of going to Pretoria every 2 weeks. Will miss the staff there though. Also so excited about our holiday coming closer (9 working days left!!!) that nothing can really upset me right now. My action plan is as follows:

  • carry on eating enough and keeping weight on
  • gym as much as possible and staying fit (weight training going well, cardio not so much...)
  • RELAX AND ENJOY our holiday
  • be ready for what the lungs may decide to do next... continue declining slowly or stabilizing properly??? And do what needs to be done.
This weekend I'm going to Cape Town as mentioned in last post and then Monday photophresis. Have a good weekend!

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