Please help me maintain my ‘normal’ as I navigate through my next chapter.
Manawatu / Whanganui
10 years ago at the age of 31 I was diagnosed with a rare genetic lung condition called Alpha1 Antitrypsin deficiency which had resulted in early onset emphysema and severe COPD. I’ve managed it pretty well over those years but now it has progressed to the stage that my lung function is 17% of what it should be and the struggle for me is very real, its also starting to damage my other organs, moderate pulmonary hypertension means it’s affecting my heart.
As a result of this progression I am now needing supplementary oxygen on mobilisation (which seems like it’s going to be most of the time) and am also being referred to the Transplant team to assess if I am a candidate for a double lung transplant. I need to rebuild my strength to do this.
I want to continue my life normally as much as I can. I want to keep working, gardening and enjoying my friends and family. The only funded options are large o2 cylinders on a trolley which is cumbersome and awkward for me. To make this easier I need a portable o2 concentrator which is not funded. Around $6800. Any other funds raise would help with anything else I’ll need in the future.
Below is a link to information about my lung condition if you’re interested and if you haven’t thought about it I urge you to consider organ donation as it can save many lives.
Portable o2 concentrator so I can continue to work and live life.
Thank you 2 February 2025
I can’t thank everyone for their support of the last couple of weeks. It’s been a difficult transition to our new normal and the emotions around the possibility of a transplant are very complex. Your love and support not only means I can upgrade Frank the Tank to Connie the concentrator but it’s given us a heap of strength when needed. Any extra funds will be used for servicing and filters etc. as well as putting funds aside for our likely trip to the transplant assessment unit in Auckland. A huge huge thank you to you all.
Thank you ❤️
So kind, thank you
Thank you so much
Thanks Sus ❤️
Thank you ❤️
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