Wednesday, November 24, 2010

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'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.

Friday, November 19, 2010

Wheezy Penguin saga: the sequel.

I was a tad premature at celebrating my release from hospital, as that weekend, due to raised temps, a drop in lung function and a lot of chest pain, I was re-admitted for IVs to treat a suspected chest infection. The infection was probably all related to the closed airway business, but it was important to get on top of it asap so it didn't cause any trouble.

Clearly my body felt like I wasn't getting enough attention as it proceded to be the week of completely random and unnecessarily silly blood results. First my kidney function danced about in a naughty manner, but quickly returned to my usual "misbehaving but only enough to be kept on the naughty step" level. Then my potasium result came back sky high, causing everyone to move quite quickly to get me attached to a heart monitor (my mother did suggest that this may have been nothing to do with potassium, but simply to confine me to my room and stop me from causing trouble - how rude). They began to return to normal, I was de-wired, and then my ciclosporin level (immunos) jumped up so high I wasn't allowed to take any for 24 hours. That was hugely unsettling as you have it drummed into you as a transplant patient that you must never ever miss a dose. It's settled a bit now, but I'm on a much lower dose than I was on when I went in, still not sure why.

I had my 2nd bronch on Tuesday where they did the dialitation thing (look at me using a real medical word) which sadly I believe was done using a balloon for the stretchification - no pixies involved. They also froze (?) the airway to stop it re-closing. Dr C says I will need another bronch next month and may need the procedure repeated. I felt fine when waking up, other than the fact they'd hit my tonsils and they were now so grossly enlarged that they looked like comedy ACME tonsils. Had a bit of trouble talking and swallowing for a few days but they're going down now.

I was discharged on Wednesday (woohoo!) and IVs are due to come to an end on Monday, when I'll go back to clinic to hopefully hear that my lung function is back up and all shiny and nice again. Fingers crossed that that's the end of the Wheezy Penguin dramas so I can get back into the swing of normal life! I'll be referred for the fundoplication operation asap and by the sounds of things that will take place in January.

On a completely different note, our new LLTGL T-shirts are here! Please head over to our website and consider buying and wearing one; help us spread the word about Organ Donation and save more lives. Thank you!

Thursday, November 04, 2010

Chapter 748: The story of a wheezy penguin.

Well firstly, I had a lovely half term. A and I took the opportunity to get away and went to Derbyshire where we also visited my wonderful Grandad.

I had been coughing a bit more all week but feeling fine, but suddenly over the weekend just gone I began feeling very wheezy and a bit breathless. By Sunday I was convinced something wasn't quite right and so rang the on-call doctor at Harefield to ask to come to clinic on the Monday. I thought I might be being too cautious but better safe than sorry.

So on Monday I headed up to clinic to get checked out. My FEV1* had dropped significantly (although randomly my FVC** was actually slightly better than last time...) and as the day went on I was feeling more and more breathless and sounded like I was playing a tin whistle very badly. Therefore I wasn't really surprised when I was told I'd be admitted that afternoon for a bronchoscopy and biopsy the following morning to check for rejection and to see if they could discover what was going on.

Most importantly, the bronch revealed no rejection (WOOHOO) but showed a lot of inflammation and narrowing, particularly on the right side. Dr C explained the reason I'm probably feeling so crappy is because the right lower lobe is very affected and that accounts for a very large portion of lung. I'm using nebs again to help ease the wheeze (ha, that rhymes) which just eases the symptoms, but we do have a gameplan.

There is research to show that reflux can affect lung function and can cause a number of problems. A study done earlier this year showed that I do have bad reflux and I was warned I'd need a procedure called fundoplication at some point in the future. Dr C suspects that the cause of this pulmonary hissy fit is indeed the reflux, which probably means I'll need this op sooner rather than later. In the meantime, I'm going to go back in in the next week or so to have another bronch and to have my airways widened (no idea how they do this, have a lovely image of pixies running in and errecting scafolding but sadly I suspect the true method is nowhere near as charming) which will hopefully make me less squeaky.

I have learnt from this admission that I have indeed turned into a complete and utter wuss. I didn't find out the results of the bronch for a little while and I really began to panic about how I was feeling and what it could mean. I think I need to man up a little again....I'm obviously out of practice being lucky enough to stay so well. Am going to try not to push myself too much whilst I'm still a wheezy penguin, and will update my blog once I know whether it will indeed be pixies performing my airwaystretchyopenyproceedure.

*How fast you can blow the air out
**Amount of air you can blow out of your lungs all together.