Thursday, 17 June 2010

Sorry for lack of blogs but as usual I have excuses! I was re-admitted to the transplant unit last week in quite a bad way. I went to clinic last week, now I'm still learning about my new lungs I don't yet know what is normal and what isn't and I guess I just thought how I was was how it was supposed to be and it was normal. I'd received reassurance that it was ok and things would get better and with that I didn't make a fuss about how things were, half kidding myself in a way and pretending I was ok. It became clear at clinic it wasn't normal, the team were quite alarmed and I wheezed my way upto the ward.
The next morning I went for a CT scan and later an urgent bronchoscopy and that showed exactly what was wrong. The team struggled to get a 2mm scope into my right lung. Myself and the donor were not 100% the same size, that of course is not always possible, to find two complete strangers that are exactly the same size. And so where the donor lung is attatched to my airway there was a size mismatch and to repair this my body healed aggressively with scarred tissue and this lead to a very narrow airway, infact about the size of a pin hole when its supposed to be around 4cm. This meant there was alot of trapped mucus in the base of my lung and that was the cause of the grumbly, wheezy noises I'd been making with very little effort and the hacking night time cough. Thankfully I didn't remember anything about the bronchoscopy as apparently it was quite nasty and one of the surgeons was pulled away from theatre to look at the tiny airway they saw on screen. It was decided instantly it couldn't be left and the next day the same surgeon was called in (it was weekend) and handed me a consent form. I was nervous but knew something had to be done my breathing wasn't great at all, I was on oxygen, cpap and alot of IVs. In theatre I was put under GA and the narrowing was mannually widened and the trapped mucus was cleared. It all went straight forward and I was back to the ward within an hour. The wheezing had stopped and I could breathe a bit easier apart from a bit of bleeding. The day after I was seen by the on call consultant and another bronchoscopy was planned for the next day, he was concerned there was still alot of mucus in the lung that was to thick for me to clear. So I went for another bronchoscopy which I was told looked alot better partly because the camera did actually get into the lung this time but there was still alot of mucus. The operation will have to be repeated at some point and probably again in the future. Since then I've been recovering on alot of IVs and with lots of help from the physios and of course the transplant team. This blip has shaken my confidence, not in the transplant team, I can't fault any of them and can honestly say I've never trusted a whole team of people before but I trust them but it's taken me back a little to 'these lungs were not mine, they've come from someone else, they haven't always been there like my old one's were'. I'm taking it as just a reminder and plan to take things a bit easier when I next get home and not try and cram everything in like I did. The team still have a few things to straighten out and it looks like I'll be until about the end of next week but I'll keep you posted.

8 comments:

Rachel said...

So sorry you had to go through this - but thanks for the update - been worrying about you! Is this the same lung that wasn't inflating quite right? At least they know what the problem is now :) Will be praying that those lungs heal up nicely and they get things sorted out.

Molly said...

Thanks for the update Rachy. Sorry to hear that you've had a tough time this week but I'm glad to hear that you're on the mend. I hope that you soon get home and things go smoothly from then so you can stay out of hosp.

Hugs,
Moll x x

loulou said...

Tou just keep fighting on hun...believe you me...learning about your new lungs is an ongoing process...I'm still discovering patterns and things all the time. Deffo much rest when your home and forget about correspondence and media for a while. You've given a lot, now its time for you. It is a long road to recovery and theres no manual. Docs can advise but everyone is individual. Op must have been scary...I remember feeling alarmed by the repetitive ops soon after transplant...it does make you think gosh will this ever work but believe me, you will get there and you will enjoy your new gift to the fullest very soon xxxxx

Lynne said...

We have been worrying about you so good to hear news but really sorry you have been having such a rough time. I guess its never a smooth road. Rest and take things slowly and you'll be on your way home again soon and starting your whole new life .
Hugs, Lynne and Kiri x x

Rick said...

Blimey, what a lot to go through. I'm sure there will be lots of teething problems but eventually your lungs will settle down and your body will get use to them, you just have to get to that stage where everything is stable. You must be very brave.

bradharris said...

Oh Rachy, you never get the simple version of anything do you sweetie?! Constantly thinking of you and I know you can get through all these early complications because you are AWESOME!!!! xxxxxxxxxxxxx

bradharris said...

Sorry signed in wrongly! The above message (and this one) are from me, Emmie! Love ya loads xxxx

**Ricki** said...

DO NOT BLAME YOURSELF!!! and don't let that confidence sway... God would not have brought you this far already... that is what I chant to myself whenever I feel the fear now!

 
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