As the title says, I spend my life waiting. Right now I'm waiting for the results of the assessment to come through which ended now well over 10 days ago. The story of my life! Then I'll have to wait to see the team in clinic for a discussion of the results and hopefully an answer.
I have a few things going on at the moment and I'm overly, stupidly tired. I haven't been able to keep up with physio not because I'm too out of breath just because I haven't got the energy. I have never felt fatigue like it but I think its just of those things that comes in the package. I am waiting (yes also) for a referral to the regional non-invasive ventilator (NIV) team to go through because the NIV I use is over 15yrs old, sounds like a helicopter and just isn't upto scratch anymore, its so old that nobody knows what to do with it or how the settings work. I have been getting the distinct morning headaches and nothing compares, I think overall my symptoms would decrease a great deal if I was getting a good nights sleep on an NIV that was doing its job affectively but I'm not... This could also be the cause of how stupidly tired I've been of late.
I've also had a case of sinusitis (we think) that's lasted weeks. It was so bad at one point I was hitting my head against the wall and clenching my teeth. I've been popping Sudafed like smarties. When I went into hospital the transplant team put me on strong antibiotics for MRSA. Rifampicin and Trimethoprim, I'd been taking Ciprofloxacin at home for a few days but it hadn't really had any affect and if it's MRSA it wouldn't have, I guess I was hoping it would be a simple infection. I've had MRSA for many years now and never been clear of it since I caught it, the sinusitis is still there a little but is alot better so I'm starting to wonder now if I have it in my sinuses. It's in my nose, throat and has been grown in my lungs before so it wouldn't be surprising if it was. I may talk to the transplant team about staying on the antibiotics a bit longer because they have definetely helped. I also have some crap going on with a previously MRSA infected finger right now as well but thats another story. So that's my life right now, in terms of how long I'm going to be waiting for the transplant assessment results I really don't know, the blood results should be back this week then I have to wait to see the team so we can have a chat and decide...
Sending some smiles!
4 weeks ago