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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Sending some smiles!
4 weeks ago