Doesn't everything seem so much easier when the sun's out and its warm? This temperature, around 12'c-15'c suits me perfectly at the moment, not too hot and not too cold.
My life really is a full time job of planning at the moment. Everywhere we want to go takes a day to plan in advance. I made it out to the Trafford Centre for I think a well earned shopping trip the other day. I have inherited a mobility scooter from my grandad who passed away recently and I have to say it's a gem. I despised them pre transplant and refused to use one, I have no idea why, I just didn't like the stigma attached to them. They seemed to make me feel 'more disabled' yet I was happy to sit in my wheelchair? The mind boggles!
We planned and measured the night before and managed to get a large 2ft oxygen cylinder (weighing 15kg!) sat between my legs and my liquid oxygen cylinders on the arms of the scooter which gave us more than enough time. I had teething trouble with the accelerator getting caught on the cylinder (scary moment) and managed to take out a rack of scarves in Accessorize (embarrassing moment) but had a great day. We also had lunch out, something that a few months ago would have been a challenge for me. I still require highflow oxygen so eating is still a challenge but I've managed to solve this myself by purchasing a Biflow mask. (I must buy more of them now because otherwise I won't be able to eat!) But my nausea since the transplant has been the main problem, I'm PEG tube fed (or at least topped up) because at one point it was so bad I was retching up NG tubes and kept very little diet wise down. Since going on a subcutaneous Nozinan infusion it feels like a switch has been flicked, I feel 'normal' after eating and the thought of going out to eat doesn't scare me. The difference has been amazing and as long as the pump doesn't leak I'm rarely sick now.
I feel so much more positive being at home and although at times it is far from easy, I can say the lungs are damaged and my god there are moments I can tell (by that I mean at times the symptoms are very noticeable!) it's worth the hard work just to be around the people I should be and be in the place I should be in.
I saw the team (or one of the doctors anyway) on the ward on Monday for a review. At the weekend I contacted the ward after 'not feeling right' on Friday night. I couldn't say exactly, just I was panting more and my heartrate was raised. I feared my CRP (marker for infection) had risen again and I wanted bloods doing to be safe. After some persuasion it was agreed I could go to the ward and have bloods done from my port. Come Monday we had the results, of course I was right, my CRP had risen only slightly but enough to warrant an IV change. So now I'm on IV Tazocin and feel better already for the swap.
Sending some smiles!
4 weeks ago