If there's one thing I value in people it's honesty, I started my blog so I could write about how I'm honestly feeling. I've had some stick recently over admitting how I'm feeling but you know what? That isn't going to stop me. I'm by no means complaining, I couldn't be more grateful I got my second chance and I don't regret going through with transplant at all because I know how much better off I am now. I appreciate so much the well wishes and the "it gets better!" comments, I just wish I could skip forward to that part.
I never expected transplant to be a walk in the park but the complications I've been having recently have brought me crashing down with a bang. It's hard at the moment, I want it so much to go right, I feel like I've paid my price with 8yrs of lung disease, to many near death experiences to count, my battle to get on the list and then stay alive long enough to get lungs and finally living through a double lung transplant. I feel like I've more than kept my end of the bargain.
I had clinic today and had mixed news I had a CT scan last week, there have been a few areas of concern in my right lung, recent CT showed those have decreased in size (well they have but another has been picked up and got bigger) with the recent 2wks of IV antibiotics I've had, this means they're infection. This would be good news but my last bronchoscopy showed I have 'floppy airways' in my right lung, basically when I cough to bring up the mucus they flop shut trapping it and there lies the problem. It's basically sitting there a breeding ground for infection, my cough is already not very good at clearing my right lung anyway due to my paralysed right diaphgram. I'm also having trouble with my white blood cells, on leaving on Friday my myfortic (MMF or cellcept one of my main anti rejection drugs) was stopped due to low white cell count. From what I understand not everyone is on MMF due to this but I'd rather be on it if I can be to put my mind at ease more than anything. The thought of rejection scares the hell out of me. The plan at the moment is to wait and see what happens, the team have as usual been fantastic and are planning regular CT scans and bronchoscopies. I may need some help from an airway stent to fix the issues in this right lung but I'm hoping to avoid that if possible. For now we watch, wait and hope!


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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.