Help Maureen get new lungs

You said you'd be dead in 2 months is what my neighbour said to me summer of 2020. Well it was my prognosis to die within a year of a very rare interstitial lung disease called NSIP Nonspecific interstitial pneumonia. I only had 26% lung function at the time. At present I have 23% lung function and I've been hanging onto them for 4 years now, beating all the odds that's been stacked against me.

I've survived death 4 times, still living past prognosis, lost weight against a high 50mg dose of steroids and at target 30 bmi weight for lung transplant referral.

This money is needed for my medical needs privately as time is ticking and having to take things into my own hands.

I require a DEXA scan first to see how my bone density has improved with this new drug Teriparatide, will it be sufficient to allow me to get a lung transplant?

I also require an echocardiogram. The NHS is such a long wait and needs this for the same reasons. Since I posted the gofund me page on Friday night we reached the funds of £2500 and on Monday set about booking and getting GP Referrals for the private scans.

Turns out the prices since 2019 when I paid privately have increased like everything else and I also need to get a cardiologist consultant ontop of the echocardiogram.

And a CT to see where my disease has progressed too.

I've managed to find 2 ILD specialist consultants and it could be another 4 months before I see one of them if all is approved for a lung transplant referral. It would take anything from 1 year plus to go through all the evaluations, never mind the odds of getting one.

I've been the outsider from the start and beaten the odds at every turn. Gosh I should be dead and certainly would be if I wasn't so proactive in my health care and researching everything.

In the meantime I stay at home, have infection control procedures in place to stop me from getting an infection which could easily finish me off, and do everything I can to keep in top top condition. I do pulmonary rehab which helps the mechanics of my lungs to breath better. Being on 24 hour oxygen doesn't mean you can breathe. I get short of breath and I have the highest oxygen prescription in Forth valley area at home so the oxygen company told me. I'm learning all the time about my disease and my husband and I are writing a book about this disease and what we've found to help and live a live of joy and focus on what you can do. I do have a wonderful life and just want to live longer if I can. I'm having too much fun for it to stop all of a sudden.

So here's what led me to put this up first. It is inevitable I will need more funds down the road for medical purposes and travel etc.

I've been let down by my current respiratory consultant and am waiting to see a specialist ILD consultant which I need funds to see privately. My fight is against borrowed time.

The reason that led me to post this is due to an error my DEXA scans were not applied for to see if my bone density has improved. This must be done this month October 2023 as part of my lung transplant referral. I can get this done at a clinic in Edinburgh along with an echocardiogram and CT.

I've used all my own funds up previously on private scans at the beginning of my health deteration for scans and private consultations and if I hadn't I would probably be dead.

Before I was diagnosed I worked in the complementary therapy industry for over 20 years and still do, specialising in therapies adapted for people living with life limiting conditions and cancer. In fact I wrote one of the very first in-depth courses in the UK and traveled the world teaching. On the other side now receiving treatments which have extended my life and quality of life I advocate from a patient's point of view. I thought I was getting unfit and here it turned out to be a very rare lung disease which My health deteriorated within 6 months I was on full time oxygen and in a wheelchair. I lived in my campervan for 3 months until we used all our savings to make the house adaptable. Bathroom, special bed and chair lift and other aids purchased ourselves because the council waiting list was too long even being palliative care doesn't make you top of the list.

I do love making videos so check out my YouTube channel to get the real me.

https://youtube.com/@startwithtouchmaureenbonne4199?si=hqiZ0BHr4o7XXIPO

Any donation would help and my family and I are so grateful by your generosity. I've never been one to ask for anything for nothing and feel I have to give something back so hopefully I can make you smile when you watch my videos.

My business www.startwithtouch.com is where you can purchase courses that will contribute towards my funds too and look out for live zoom specials with Karolyn and me in Octçober and Nov 2023 where we will donate too.

We've readjusted the amount now I have the final figures in to £4500 which will include the scans and seeing other consultants privately. 

You've no idea the peace of mind this brings especially at this time of year when it's so easy to pick up infection. Knowing I'll be getting one to one healthcare in a timely manner.

I've an echocardiogram booked in along with a cardiologist consultation on Thursday 2nd November at The Edinburgh Clinic.

Awaiting the referral from my GP for everything else and as soon as the clinic calls to say they've received this they will offer me appointments.

Also gofundme is processing part of the funds raised over £2000 to enter our bank in the next 2-5 days.

Keep sharing peeps ❤️