Breath of Hope
Amy and her family have been through hell and back in the last 10 years, diagnosis, double lung transplant, cancer in her kidney and liver, her husband beating thyroid cancer, multiple surgeries and intrusive procedures, bowel obstructions, pneumonia and then recently both their family cars were stolen and destroyed and the stress of that triggering a health crisis which sees the need for Amy and her family to relocate to Brisbane for another life saving lung transplant or worse case scenario for her to come home to live out the last of her days with her family.
Please understand that your donations will not affect the decision for Amy to receive another transplant as that decision is sadly out of our hands but with a very talented team of doctors. Your generous donations will help a family through the most difficult time of their life with the little things like meeting bills, buying Amy oxygen & medication, moving costs, groceries etc…this family really needs your help!!
Amy is facing her biggest challenge yet!!!
Close your eyes and try to imagine the decision between life and death handed over to a team of doctors, not knowing what your future may hold, having no control, no choice ….
Without this transplant Amy will never see her children graduate high school, walk down the aisle, hold her grandchildren in her arms or grow old with her high school sweetheart.
It’s tough out there for a lot of families but your generosity will make the world of difference to Amy and her family. I want to be clear in that any fundraising we achieve will be to 100% benefit their family for the little but important things in life. We want to raise funds for day to day expenses to make Amy & her families life a little bit less stressful.
10 years ago, following several episodes of a collapsed lung and general breathlessness, Amy was diagnosed with a very rare genetic disease called Lymphangioleiomyomatosis (LAM). This horrible disease only effects women of childbearing age and is in incurable and degenerative.
This was a devastating diagnosis for our whole family, Amy and Jeremy had 4 children; 2 boys 6 & 5, the youngest being 14 month old identical twin girls. The outlook was grim, we were told that without a double lung transplant she had maybe 5 years at best to live. We were in shock…Yesterday she had just been a breathless busy mother of 4 but today she was dying!!
The following 3 years was a blur of Doctors appointments, trips to Sydney as they were the only specialists in Australia familiar with this horrid disease, it was that rare!!
Amy even volunteered in supporting LAM awareness and helped raised funds to help with research. She was subject to countless invasive procedures including the removal of her ovaries in 2007 and we watched heartbroken as her struggle to breath got worse everyday which ended in Amy needing 24 hour oxygen and had limited movement without exhaustion. She needed round the clock care supplied by her husband, our Mother Kaye and Amy’s Mother in Law Deb who moved in to help the young families day to day needs. As her lung capacity decreased to low numbers the doctors decided that it would be best for the family to relocate from Cairns to Brisbane so Amy would be closer to the hospital for the care she so desperately needed.
In 2008, on May 17th the day before her eldest child Thomas’ birthday we got the call!!
They had a healthy set of lungs for Amy..
We were in such a rush to get to the hospital we realised only after we got there that Amy was still wearing her slippers… it gave us all a much needed giggle in a very scary moment.
To ease the tension, we read her stars aloud and unbelievably it told us that a long awaited call would bring loved ones from near and far in the next few days…we hoped silently at the time it was to celebrate this amazing opportunity for her to be able to see her kids grow up…..
The surgery felt like it took forever, we sat and waited.. hour after hour, minute after minute waiting for any news. We stared at that clock in the clinical surrounding of the waiting room wishing the time to pass quickly and yet at the same time scared that every minute that ticked past the news it may bring not being what we wanted to hear..Amy had been down to critical lung capacity and was facing being removed off the transplant list if her lungs had deteriorated much further.
This was life or death for her.
After what felt like a lifetime, the surgeon still in scrubs dropped down on the lounge and exclaimed exhaustedly “That was the worse set of lungs I've ever seen in my whole career, it was like porridge in her chest”. She had survived the surgery, we were overjoyed but there was still a long road to recovery in front of her. The relief we felt was overwhelming, she had struggled so hard for so long and we were so grateful that she had been given this chance…. after so many years to this day I struggle to find the words to put those emotions into a sentence.
She was discharged after 10 days of painful recuperation but was admitted 7 days later with fungal pneumonia which kept her in there for another 3 long weeks.
As children Amy and I had learnt sign language to communicate with a friend who had joined our very small school, a skill that we utilised a lot through our teenage years but never as important when Amy was stuck in ICU with tubes down her throat, frustrated that the doctors were struggling to understand her emotional strain and wishes..I was able to translate some of the PG rated messages about what she wished to convey to the medical staff, some I chose to beg *lost in translation* …….
The family stayed in Brisbane until Amy could fully regain her strength and then finally was healthy enough to bring their family back to Cairns in December 2008 just in time for a Christmas that we all feared she may not have lived to see.
Amy went from strength to strength, never complaining about her daily medication ritual which was quite overwhelming and complicated sometimes having to take more than 30 tablets a day, but it was keeping her alive to be with her babies and is all that mattered.
She threw herself into volunteering at the children's schools; tuck shop duty, book covering in the library, P & C secretary, fete co-ordinator etc etc she was determined to make up for lost time with her family.
Often we would catch Amy in quiet moments of reflection thinking of the sacrifice one family had to make that gave her the gift of life and to this day she has never forgotten or taken that opportunity for granted.
Our entire family were given the chance to write an anonymous letter to the donor family, a task I found very emotional and difficult to put into words….How do you thank someone in the depths of their own grief? What could we possibly say to convey the gratitude, relief and heartfelt thanks that their generous donation that had given me back my sister, her babies their Mum….there were no words that we could write that will ever capture the true depths of our feelings…but we tried and I hope that that family still reads overs those letters and finds some comfort and solace in their grief knowing that their gift was so incredibly appreciated still to this day.
In July 2013, a devastating double blow struck the family when they discovered cancer in Amy's kidney and Jeremy, her husband, was diagnosed with Thyroid cancer. With Amy in Brisbane receiving surgery and treatment removing her kidney, they were forced to support each other and their family through this next hurdle from a distance, a challenge and heart breaking feat no marriage should ever face but one they did with strength and determination to get through it together, however apart.
Regular clinic visits to Brisbane saw multiple adjustments to medication here and there trying to find the right balance for Amy with minimal side effects which took a while longer than expected. Despite several episodes of minor rejection, In 2014 Amy had her first bout of chronic rejection which unfortunately relapsed 4 times in that 12 months.
In October 2014, Amy was told there was a tumour on her liver, was sent under the knife once again to remove the tumour and the decision was made to remove her aortic lymph nodes at the same time in the attempts to stop the cancer spreading.
Amy spent a lot of her time helping my husband & I set up our new business in which Amy proudly took over as Cafe Manager and she ran a very tight ship in her kitchen. The staff adored her and made friends with a lot of our regulars, not to mention that I was lucky enough to work side by side with my sister everyday and we never failed to make each other laugh everyday.
At the end of 2014, Amy’s health seemed to be getting worse, crippling stomach pains, nausea, vomiting resulting in another surgery to remove an abdominal adhesion; a common complication from her previous surgeries, Unfortunately we were told this could be very complicated for transplant patients. She was forced to leave the job she loved and spend another few weeks in Brisbane away from her anxious family.
On return, She had only been back in Cairns 5 weeks when the hospital rang and requested to see her for a follow up. Amy still not feeling well nor fully recovered was readmitted to hospital with a second abdominal adhesion. She was nil by mouth for 17 days, vomiting every 3 hours, no sleep, chronic pain, Amy lost a lot of strength and muscle tone. They finally decided to perform the surgery to remover her 2nd bowel obstruction but by this stage she was so weak she could barely do anything.
In August 2015 another cruel blow struck their family when their 7 seater family car was stolen by a gang of teenage thugs who broke into their house while they slept and went on a 7 hour joy ride which ended when they crashed Amy & Jeremy’s car into a family home smashing in under a house & fence in a neighbouring suburb, metres from where a family slept. The car was written off and left the family without a car big enough to get their family around. The stress and the personal violation of their family home and vehicle took a very heavy toll on Amy who was still very not strong and triggered a very serious episode of chronic rejection & physical reaction resulting in Amy needing a very new procedure called Plasmapheresis which left her weak and exhausted.
It was then, unbelievable weeks later, their second and only car left was stolen and this time was set fire to behind a local high school leaving the family with no mode of transport. The stress only made Amy’s condition worse, triggering an infection and Pneumonia soon followed and savaged her body doing irreparable damage and she has now lost nearly 75% of her lung capacity resulting in the need for another transplant.
In the last few weeks she has had a battery of tests to establish her eligibility for another transplant which she desperately needs. Watch this space for updates and please donate towards this family and help them get through this next challenge. Please!!
It's a really hard thing to hope for as it feels like you are wishing for someone to die just to save you, why did they have to die, why should I live, what makes these calls in the universe. Why was I chosen for this journey and seriously enough already !!
2 weeks is nothing really, I waited 18 weeks the first time and was told what a miracle that was, I have a rare B+ blood type and a list of antibodies that have to be matched to a donor. Organs can come from all over Australia or New Zealand.
Depends on the Dr's we talk to, some say no worries Amy we'll get you some lungs others have said that can't recall the last B+ transplant they did, right down to the Dr telling us to be prepared that I won't get get one in time. They always shirk the question how much time that might be as it's always after when we are driving home that we realise they didn't answer the question again...
There is a lot of confusion and misinformation out there about organ donation and if anyone has any questions I strongly recommend you check out DonateLife website they have great up to date information http://www.donatelife.gov.au/myths-and-misconceptions
Did you also know that you can now register your wishes online at https://www2.medicareaustralia.gov.au/pext/registerAodr/Pages/DonorRegistration.jsp
Love to all
Amy & the Family
Thanks for all your support. xoxo
Hope Santa found you all and may 2016 bring all that you and your families hope for....