3 replies to this topic

[jules]

Hi Everyone, I thought I would let everyone one know whats been going on with me recently, wasn't really sure where to post this, but I think it is relevant to lots of us. Last year I seemed to struggle constantly with Chest infections and pneumonia never really getting rid of it despite lots of courses of Antibiotics and steroids. I ended up going for a chest x-ray when I got what I thought was pneumonia again, the chest x-ray came out severely abnormal, with the possible diagnoses being secondary tumours, or some atypical infection. It turned out to be the latter.

I have been diagnosed with a fungal infection, which has eaten away at my lungs causing multiple mycetomas (basically a hole of destroyed tissue with a ball of fungus at the base). Added to the actual infection I have also developed an allergy to the fungus itself (bronchopulmonary aspergillosis). The problem I have now is that the treatment for the allergy side is steroids which are likely to make the mycetoma worse, plus anti-fungals to try and kill some of the fungus. It is likely that I won't get rid of the infection ever but we will just have to manage it. The mycetomas also create another problem, the one in my left lung is over 6cm big and is very close to a big blood vessel, and I have been warned that if this ruptures I could bleed to death very quickly.

My treatment options include removal of part of my left lung, but this would leave me seriously down on lung capacity. My Consultant has never seen this happen to anyone so young (I am only 32) but it would appear that my SCI together with having Whooping cough as a kid left me vulnerable.

Sorry to rant on but I am seriously at the end of my tether at the moment, so if anyone has heard of any other SCIs with this problem who have had to have parts of their lungs removed I would love to hear from you or even anyone who has had to have lung surgery post SCI.

Again sorry to whinge on.

Jules
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[nomis]

Hi jules. Real sorry to hear of your lung troubles.
I don't have any info or knowledge to offer you. But I am grateful for you bringing my attention to this insidious problem. It's a reminder to be watchful and keep doing my breathing exercises. Though, as you point out, if there's some history lurking it may not be avoidable.
Got my fingers crossed for you, jules.

[longhaul]

Jules have you looked into herbs or supplements ? It couldn't hurt to talk to an herbalist and see what they have to say. Things like Essential fatty acids and vitamins D have a major role in healthy lungs. Has your doctor had a "vitamin profile" test done on you? Good luck...................

[jules]

Thanks for the replies and support guys, my vitamin levels are all fine, apparently one of the reasons it took so long to get my diagnosis was that people with this disease are normally sat in ITU looking not very well! But because I did so much Cardio fitness work my lung capacity was basically hiding alot of the symptoms.

I am also struggling with the side effects from the long term very high dose steroids - I broke my wrist 3 weeks ago due to increased osteoporosis, so i am also concerned about pressure sores because steroids make your skin thinner too. Thankfully this seems ok so far.

Got my latest scan results on Friday so I'll keep you all updated.

Again thanks for the support

Jules
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