Haven’t been in touch for a while now but mercifully still here.
Lungaversary last month which I can only describe as a stormy recovery.
Trichosporon infection In clamshell wound delayed discharge by 4 weeks.
1 month in ICU with terrifying hallucinations which still haunt me today.
Sternum didn’t heal so they had to reconstruct with titanium screws and plates….ouch!
Pneumonia in new right lung last month which was a worry but hopefully sorted.
Latest to report is they have detected Aspergillus on samples taken from clamshell scar and forehead which though only topical the fear is the little bugger gets inside and that’s when the fun starts.
Anyone had any experience of such and if so can I ask what treatment you were undertaking?
Finally, neuropathy in lower limbs making walking impossible without a stick but the good news is i bought this beautiful 1890’s cane from an antique dealer, made from a fruit tree of some sort and I love it.
That’s all for now folks will be back soon.
Xx stay safe.
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Mrbojangles
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Very good to hear from you. I've been wondering how you were doing. Sorry you're having such a rough ride. I hope your team will manage to sort all the little bugs/ buggers out, so you can have the decent quality of life you deserve. I wasn't aware of hallucinations before- hope potential transplantees will register this. Welcome to the screwed up sternum club- I was surprised to get through airport security without setting it off. Do keep in touch. Very best wishes, Chris xxx
Titanium does not set off conventional metal detectors because it does not contain enough ferrous material (such as iron or nickel). However, some other factors can affect whether titanium sets off a metal detector, such as the size of the item and its proximity to other metallic objects. I have 4 markers in my left chest where my breast cancer was, and now 2 titanium ASD (atrial septal devices) so you never know!
Now I know why my daughter and self have not been picked up at airport security. Daughter used to be/ still is to some extent very fond of metal jewellery, belly buttons and so on. I used to wait for her to be hauled off by Security.😄
Gosh Mr BJ, you have certainly been through a war. I'm so pleased to hear the medics are addressing the issues. It sounds like you have a lovely cane but no doubt you would prefer to walk unaided. Wishing you all the best xxx
What a rough road you've been journeying. It sounds as though your medical team has helped you over each hurdle, well done them. But it takes a very strong person to get through what you have. Don is right, you are some kind of superhero!
Congratulations on thus far, I hope the next leg of your journey is smooth as a baby's bottom!!
Hi Mrbojangles (love your name - reminds me of song from the 60's😊)🙋♀️. I haven't got your condition but have Aspergillosis in my lungs as well as Bronchiectasis . My consultant keeps an eye on the Aspergillosis (CT scans) in case it gets bigger. Not saying this will happen in your case because we're all different but that's just my experience. (BTW like the sound of your cane😊). Take care and all best wishes xxx
I wondered where u were! Your having a tough time post transplant.hope u r home now.hVe they tried; something like gabapentin for neuropathy?it's gd for me but only available on prescription.yr cane sound gd .hope u can remain well x
Sounds like you’ve really been through such difficult times. I hope it won’t be too long before you are fully on the road to recovery. All the very best.
Hi I have Aspergillosis and for good info if you haven’t already found it is the website Aspergillosis.org this is a NHS website and managed by the National Aspergillosis Centre at the Manchester University Hospital Wythenshaw. The is another website Aspergillosistrust.org which is patient managed but reviewed by the Royal Brompton Hospital in London. Aspergillus in the respiratory system is very common it’s only if the immune system is a bit down it can develop into aspergillosis. There are two main types of aspergillosis, the allergic version with chronic asthma symptoms and treatment is steroids and anti fungal meds. The other is the infection version which has the symptoms of lung cancer, this can result in a fungal ball or cavities in the lungs and treatment is anti fungal meds. Dr google will tell you about invasive aspergillosis which is a different beast all together all though a lot of doctors will refer to the infection version as semi invasive aspergillosis. I have the infection version with both fungal ball and cavities, it is a slow developing progressive disease with no cure but can be managed. Aspergillus fungi grows primarily in soil, compost rotting vegetation, it’s microscopic so we can’t see it. This means it is detected everywhere but just because it’s detected doesn’t mean it will develop into aspergillosis
Oh Mr B how wonderful to hear from you but sad that you have gone through so much. I hope and pray that you have gone through the worst of things and your body can now heal. Sending love and big gentle hugs x
I have been wondering where you were but so sorry that you have had so much to go through. Sending best wishes and baby steps to the road to recovery. I hope you have a garden to sit out in and enjoy the sunshine (when it's not raining!). Sit and relax and take time to heal. Take care. Linda
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