Tuesday, March 05, 2013

ARGH!!!!

I am so annoyed with my bloody lungs!  Sam, the specialist cf nurse from Papworth rang on Monday to tell me that I've grown a micro-bacterium in one of my last sputum samples....I am furious abut this!  I grew a very pathetic example of one at the end of last September, it was such a tiny sample that lab could not even identify its actual species and it died on the plate before they could! However, I was immediately segregated due to cross infection risks, and had to start sending  about a million more samples off and have a bronchoscopy. All the results came back negative and I was declared bug free.   This was such a relief as having a micro-bacterium is really very serious, they are not easy to treat and get rid of completely and some of them are an automatic disqualifying criteria for transplant.  I've got to the stage where transplant is being talked about more and I even went to see the transplant team in October to talk abut options.  Fortunately the transplant team don't think I am ill enough to be fully assessed and listed for transplant yet, so I do have some time to try and get bug free so when I need a transplant it is still an option - at least that is what I am telling myself to stop outright panic.Its not that I want a transplant now by any means, it is not a cure, but I really do not want to be told I can't have one because of a stupid bacterium.  When the time comes I want to make the decision as to whether I do have a transplant myself.

I didn't deal well with all this stress, not surprising really, it is all rather serious after all. With all the extra stress and annoyance at being segregated and ill, and the fear of not being eligible for a transplant I was rapidly descending into a big depressive spell.  I started seeing the CF Psychologist again (who has been just brilliant) to help me cope with it all, but when I got the all clear it was just such a relief. I could not stop smiling and laughing for several hours after being told and mentally I felt better than I had in months.  It was like a huge weight had been lifted off my head and I could see a future which if needed could include the benefits of a transplant.  Now I've had another positive sample all that weight is back again, and its even worse this time as I really can't pass this second result off as a possible false positive or just a small sample of bug that I breathed in and came out in the sample without it actually colonising my lungs- which was the prevailing view for why it turned up last time and was such a pathetic sample.  One positive result is not considered enough to decide if a patient is colonised with the bacterium, as the treatment is very heavy, arduous and long, so the docs really don't want to put you through it unless they are sure its worth it.  Now I have had two samples come back positive so it looks like I can't avoid the treatment.  I just can't believe I am going through all this rubbish again!  It always knew it was a possibility but I had hoped to have at least a few months off before the next health catastrophe came along...

3 comments:

Ruth Jay said...

So sorry to hear this hun :( must be soul destroying. Hope you get some answers soon about what they plan to do, but I've read about the treatment for myco and its hard going. Hopefully it'll make a difference for you x

Me said...

Aw no, I'm so sorry to read this. I REALLY hope the treatment works for you and I'm glad your psychologist helps you get through this periods of your life. It just never ends does it?! xx

Rosalind Evans said...

Thanks guys! No it does never end- sigh! They are still trying to decide what to do with me treatment wise... If it wasn't such a hardcore regime I would just get it over with but it's such a massive amount they don't want to give me it unless they are certain I will benefit from it.