Wheezy penguin does the hokey cokey.
In, out, in, out, you shake it all about...
I managed a grand total of 4 days at home before being admitted. Again. To be fair to the team, they didn't have much of a choice, as my follow up lung function which should have shown a nice healthy jump due to a course of IVs bashing whatever infection was down there over the head, instead showed a further 10% drop. Bummer.
I was brought in for another bronch and further biopsies. I had a busy day planned for Tuesday and did actually try to sweet-talk the doctors into the idea that putting off the bronch till Friday wouldn't do any harm, but funnily enough they weren't particularly receptive to the idea.
I think I knew deep down I wasn't better; I was still wheezing, still needing to neb every couple of hours, still coughing and squeaking and huffing and puffing. I did however have a little sulk and cry on Monday because, let's face it, when the docs think they've treated and solved the problem and it turns out it wasn't what they thought....it's pretty scary.
So the question is...what on earth is going on? I was hoping that bronch and biopsy no. 3 would give us the answer but it turns out we're still none the wiser. On the plus side, this means nothing nasty has shown up; no massive infection, no organising pneumonia, no rejection...but of course we still don't know what we're dealing with.
But we do have a plan of action. I'm being stuck on nice high steroids (bring on the fat face) but the good news being they're in tablet form which means I can go home! Again.
Definitely a victory, definitely a positive, but am going to be a little more cautious about celebrating the idea that the wheezy penguin saga is over this time. Please keep your fingers crossed that as well as giving me a huge round face and causing me to eat A out of house and home, this hefty dose of steroids will sort out whatever it is. Because I'd quite like my lungs to start behaving again now. Please. Am asking very nicely.
Serves me right for blogging so swiftly...doc just came in and the big guy at the top has instructed a slight change of plan. Instead of going straight home on oral steroids I'm going to be given 3 doses of IV methylprednisolone. This is the big nuclear bomb of steroids which aims to crunch any rejection into oblivion. Face will be fatter than I can even comprehend. Hmm.
I will then go home on Friday (yay!) on a scarily high oral steroid dose, but that will reduce on a weekly basis. A slightly more severe path of treatment but do you know what? If this is the safest option and the most likely way of preserving my lovely lungs, then let's do it.
Organ donation week
2 weeks ago