A Quality of Life for Saralee Hume

A Quality of Life for Saralee Hume

Saralee, my daughter, is 31 years old. She lives in WA with her husband and they enjoyed a good life, they both worked hard and had good work ethics. Her husband worked FIFO so, like many Australian couples, they spent a lot of time apart. Like most people they lived to their earnings, saving a little as they go, just for those “rainy days”.

Well in 2017 those rainy days arrived. Like a hurricane force storm.

Near the end of 2016 Sara started to suffer severe bouts of sickness. No reason, she would just throw up – anywhere!! Some embarrassing moments, especially out shopping! She never knew when it was going to happen. She went to doctors and they kept telling her it was gastro and occasionally took blood tests, but never found anything wrong. The sickness attacks were getting more frequent and more violent.
I came to Australia from the UK to spend a year with her and her hubby, if I liked it, I would look at staying.

Its then that I realised how sick she was. I took her to a new doctor, but he said the same and took blood tests. Well the next morning she screamed from her bedroom. She was in excruciating pain in her chest and down her left arm. I immediately suspected a heart attack, I got her to the hospital double quick. They also treated it like a heart attack.
After tests they said it was Pancreatitus. One of the most painful things you will ever suffer. They dosed her up with Fentanyl and every other pain relieving drug, to no avail. They then put Ketamine through the iv. The reaction she had to this was so bad I thought I had lost her. She agrees she saw a white room with a light at the end!!.

This was 9th August 2017 - the beginning of a huge learning curve and roller coaster ride.

By the end of August they told us she had idiopathic CHRONIC PANCREATITUS. Let me tell you what that is – as briefly as possible…….
The Pancreas – controls digestion of food via enzymes and also controls Hormones – most importantly insulin.

A diseased pancreas dies and becomes necrotic and does not function.
There are hundreds of causes – Autoimmune, genetic, Drug or alcohol abuse, or, as in Saralee’s case idiopathic – they have no idea what caused it.

There are many complications associated with CP, any infection could turn to sepsis. 

Saralee has been unable to work since her illness first started in 2016. She is unlikely to ever go back to work and she needs constant care. She has been hospitalised 12 times since August – that’s just 7 months!.

Her husband continues to work – mainly cos he knows I am here to look after her and he knows no other way than to provide for his family. He is a proud man who will not accept help easily.

Because he works and earns a reasonable wage they are not entitled to Centrelink assistance. Also under the immigration laws of my visa I am not allowed to worked in Australia.

So, they are now surviving on one salary when they were used to two – and that’s fine. Slowly their savings have been used up. They just about pay the mortgage, the utilities, food (which is much higher due to her special dietary requirements) they have a car that she has to have on hand 24/7. BUT they also have all the additional expenses:

• Fuel for the extra appointments and hospital visits

• Special foods – high protein/low fat diet

• Supplements and Drugs – Saralee takes 17 different types of drugs to live – some of those are three times a day. They are massively expensive

• Higher utility bills due to her and I being at home all day using air con or heating as required

They are literally just scraping through. Saralee’s situation is worsening. She has lost over 40kgs since august. Her hair is falling out and her teeth are rotting due to malabsorption and malnutrition. The drugs she takes are poison in themselves and have side effects. She sees a team of surgeons every 2 weeks. She sees a pain management specialist because her pain is extreme and constant – he is private and costs. She sees a dietician, a phsychologist and phsychiatrist, (to deal with the PTSD and anxiety attacks through her fear of dying) another GI specialist at Royal Perth and her GP on a weekly basis. Her life has been taken over by this awful cruel and painful disease. She is 31 ! We go nowhere without a stock of sick bags.

So how can you help. ? Yes, we need money. We need to improve the quality of her life and ease any stress as stress causes flares of pain.

The car needs a new gearbox, if we lose the car we are in big trouble – approx. $2,000

The car also needs new brakes, approx. $400

We would like to be able to get her out at least once a week and need to hire a mobility scooter

She needs new clothes – size 10 / 12 now as all her clothes fall off her

I need to extend my visa to stay here and look after her – Immigration will not even let me do a part time job to earn my way, but if I stay it will save thousands on using the health resources she would need, she falls constantly due to low blood pressure, there has to be 24/7 care.

She would benefit from hydrotherapy to keep her muscles working. Muscle wastage is making her very weak.

Her drugs cost a large amount weekly. We only get assistance once we meet the $1,900 safety net.

There are a few outstanding utility bills due to her husband having to take some time off to be with her at her worst.

In reality we need about $10,000.

We would also like for Saralee and her husband to spend some quality time together, to make special memories and they want to renew their vows on their anniversary this year 10/11/18. If she is well enough.
We also want to raise awareness of this terrible disease and to ask the medical profession to look at more and better ways to treat this condition.
So ideally we want a further $8,000

We have tried to draw down some of her superannuation, but without confirmation from doctors that she will die in the next 12 months they will not entertain this. We have also sold as much as we can to raise money, but are running out of ideas. If there was sufficient money donated we would look at using this for lawyers to take on her case for the superannuation.

I watched my sister die of this same awful disease 11 years ago – she had autoimmune pancreatitus.

I do not want to sit back and watch history repeat itself without trying to do something to make her life better.

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Lezlee R Burke 
Aveley WA
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