One Year On...

One year ago today, a very brave and generous grieving family made the decision to donate their loved ones organs.

That decision saved my life.

There are no words to explain the gratitude that I have for being given a second chance at life. This year has been one like no other that I've ever lived through.

Physically and mentally getting through a transplant is really difficult and very emotional. I could never have made it through without the support of my family and friends. I can't even imagine not being around to see my nephews grow up!

I was able to celebrate another birthday, and help with another successful Hottie Challenge.

Amazingly, I've now been back at work at my day job full time since October. I been to Sydney twice for work.and I've been to Brissy and had a stall at Finders Keepers.

I took part in the Melbourne Marathon and the Great Strides Walk.

 But the best thing is that I can now get out and just ENJOY living!

None of this would ever have been possible without my beautiful shiny new lungs and that amazingly selfless gift...

I think about my donor every day. While I'm able to celebrate today with my family and friends, my donor family will be marking a different anniversary. I hope that they can find comfort in knowing how truly grateful I am.

Last year, I was still in hospital recovering during DonateLife Week. This year, I'll be taking part in the FilmLife Film Workshop Weekend, and also promoting organ donation via the Tour de Transplant and Tour de Chat.

I have a very good friend who is still waiting for a heart. I truly hope and wish and pray that his call comes soon... and please, whenever you can, make sure you have the chat with your family and friends.

Ford Choose Your Own Adventure Challenge - Melbourne Marathon - Run 4 Refugees

A little over a week ago, something very special was delivered to my doorstep... a brand spanking new luxury Ford Territory Titanium (it's seriously NEW - I think there were around 56kms on the clock)

I've had such an amazingly lucky year, and getting to drive around in a top of the range Territory for six weeks courtesy of Ford and Kidspot as part of Voices of 2013, is just icing on the metaphorical cake.

Not long after my double lung transplant earlier this year, I wanted to take on a challenge and so I decided to sign up for the Run 4 Refugees as part of the Melbourne Marathon.

Today was the first day that I'd had a chance to share the Territory with my friends as passengers. We decided that it would be much easier to travel into the city together, rather than trying to meet up amongst the more than 30,000 competitors.

We travelled into the city in comfort and style (love those leather seats), listening to classic 80's music (showing our age). We parked the Territory, and then wandered down to our starting point on Batman Ave alongside Rod Laver Arena.

 By the time we'd walked down there, the weather had most definitely changed for the worse....

Thank goodness for our very stylish plastic ponchos!

Due to the rain and a bit of flooding near the Swan St Bridge, our course was modified from 5.7km back to 3km. We had to wait in the rain for a while why they modified the barriers.

At this stage, surrounded by the throng of people at the start line, I started to get a bit teary. Luckily there was so much rain that no-one noticed. I still couldn't believe that I was actually there... waiting to start. A dream come true, and something to tick off the bucket list. Totally surreal.

Even though I can't actually run yet as my lung capacity still isn't high enough, I managed a slow jog over the start line.... and the race had begun!

There was quite a large hill right at the beginning, hence most of the pack is already waaaaay ahead of me at this stage.

It was so lovely to be able to walk around the parks and gardens in the city. They were all places that I'd never actually seen before, because I just couldn't walk before. The views while we walked were amazing, even though it was a bit wet and dreary.

This was the super exciting part - heading towards the MCG, knowing that I'd nearly made it, and that I was going to walk on that hallowed turf very soon. There were people on the sidelines actually clapping and cheering us along - so cool!

After entering the MCG, we walked a lap around to the finish line (where I couldn't help myself - I had to strike a pose)!

I felt like an athlete - completely victorious.... even though I was nearly last in my category - number 3422 from 3434 finishers.

Through the power of Social Media, Caroline and Rachel travelled all the way from Sydney to run the 10km race. They've only been training for 8 weeks - such an amazing effort.

So glad I'm not the only one who likes to strike a pose Caroline!

And here I am with my friends, my team, my passengers, who came along for this crazy ride today. I couldn't be happier or more thankful.

Thankyou Cathy, Tash, and Andrea for an awesome experience today. It's something that I'll never forget.

And as I drove home in the Territory, I may have had a little cry. Tears of happiness for another achievement that would never have been possible without an amazingly generous organ donor and their family who gave me this second chance at life.

Taking A Break

All I can say right now is Phew!

The last seven weeks have been a rollercoaster of ups and downs, and a lot of hard work, but it's another good news day today.

• The results from my bronchoscopy came back and there are NO signs of rejection.
• All of my surgical wounds have healed on the outside so NO more dressing changes.
• Tonight is the first night that I get to stay home alone without any Nurseslaves.
• I was finally able to put the laces back in my volleys (it's the little things).
• I have six WHOLE days off before any more hospital visits

If you're looking for me, this is where you'll find me...

Happy Easter

What a Week

Waiting.... with cankles

Gosh it's been a crazy week. There has been a total of zero craft happening which is unheard of around these parts!

Thankyou for all the lovely comments on my last post. I usually reply personally, but I just totally ran out of time.

I was at the hospital four out of five days this week.

On Wednesday my first appointment was at 8.30AM and the last one at 4.15PM. Then I needed to be back at 8.15 Thursday morning for a bronchoscopy (they do these routinely to check the lungs for rejection/infection etc).

So instead of driving home, my sister and I booked a nice hotel near the Alfred and treated ourselves to a night out.

I felt like something asian-ey or noodle-y so we headed into the city. It's still so surreal to me that I can just decide to do something on a whim!

We headed to Flinders Lane with the intention of heading to Chin Chin, but the line was out the door so we kept walking (uphill - what a novelty) and found wagamama.

The food was delicious! I treated it a little bit like the last supper as I had to fast before Thursday morning.

The Atrium at the Park View

On Thursday morning I headed back to the hospital, and the lovely admin lady started to process my booking in paperwork. Then she asks me for my occupation. I was stumped. Is Professional Hospital Patient an occupation? She settled on unemployed. I hate that word.

Anyway, the bronch went well. I still have a bit of an anaesthetic hangover today, but I managed to make it through my entire gym workout, so that was great.

I don't really like the music that they play in the hospital gym, so I headed to the shops afterwards to reward myself with a new toy.

Now I'm off to load it up with my music!

A little bit about the transplant

Gorgeous gift from Janine at Middlemost

I don't want to bore crafty peeps with lots of medical info, but I've been asked lots of questions about the transplant, so I thought I'd answer them here for anyone who may be curious.

Photo courtesy

I have what's known as a clamshell incision. It's a cut from side to side under the breasts. There's also a cut through my sternum, which has been wired closed with a box like structure, and four smaller incisions where the drainage tubes were placed. Everything is healing up nicely.

The first three months is dedicated to recovery and rehabilitation. I have to attend the hospital every Monday, Wednesday and Friday. I have gym three days a week, plus dressing changes, blood tests, education sessions and clinic on those days. Extra tests are booked around this, so this week it's lung function tests, BIPAP clinic, a chest ultrasound, and just to top it off - a bronchoscopy.

I have some damage to my diaphragm which means that I can't yet get air into the bottom of my lungs. It also means that I can't lie down without using a BIPAP machine. This may take a year to resolve itself, so I'll need to use BIPAP at night until then.

The transplant has given me what's known as 'steroid induced' diabetes.

There are a LOT of meds to take.... morning and night. I also have to check my weight, temperature, and peak flow daily.

All of this is hard work (I need an excel spreadsheet to keep track of everything), but I wouldn't change it for the world.

Check out the cankles!

 

I'm seriously amazed that I'm able to do normal everyday things. I can't even explain the elation I felt at being able to walk up a small hill for the first time!

I still do strange things like looking around for my oxygen tubing so I don't get tangled up.... and then I realise that there is NO oxygen tubing.

I feel so free without it. I can get out of the car and walk straight into the shops without having to lug about an oxygen trolley. I don't have to worry about how much oxygen I've used towards my monthly quota. People are not staring at me anymore, or tripping over my trolley, or asking me akward questions at the supermarket checkout. I'm still not used to it.

I've rediscovered singing. Before the transplant, I couldn't sing along to the radio or iPod as I didn't have enough breath. Now I can sing along (even if I'm tone deaf). I apologise to anyone within earshot when an INXS song comes on the radio.

I've been told by nearly everyone I've spoken to so far that they didn't realise that I talked so much. Apparently now you can't shut me up! It was just that beforehand, I didn't have enough energy or oxygen to breathe and talk at the same time.

My phyisotherapist tells me it takes six weeks to break a habit - in her case, she's trying to teach me to breathe normally (rather than the shoulders forward puffing type of breathing that I'm used to), so that's my challenge for the moment.

I'm looking forward to getting fitter and fitter and eventually buying myself a new bike. Michelle, Angie and Brianna have made sure that my new bike will be totally pimped up (yes check out the spokie dokies) and ready to roll. That's going to be my reward once all of the rehab is finished.

That's all I can think of for now. If you have any questions, ask away!

Thankyou

There is only one special word that I can use to sum up the past few weeks, and that is THANKYOU.

I came home from hospital Thursday night, and it seemed to be all the more special as I was returning home with my shiny new lungs during DonateLife Week.

I waited for 18 months and 6 days. Once I'd hit that magic 18 month mark, I started to worry that the phonecall would never come.

I still have a long road of recovery ahead, with three months of intensive rehabilitation where I have to attend the Alfred three days a week. I also have some problems with my diaphragm so I need to use a BIPAP machine at night for a few months. I'm very wobbly from all the meds so you might see me getting around with a Nonna Walker for a little while!

I couldn't have made it through this entire experience without my amazing family. They saw me at my absolute worst, on the days when it was so just so tough to keep fighting on. They stuck by me day by day, and wouldn't leave my bedside until they knew it was safe to do so. Their support got me through.

I also really have to thank everyone for all of the blog / instagram / facebook / twitter comments. In the first few days, my sister would read them all out to me while I was in ICU, until I was able to start reading them myself. All those positive comments also made a huge difference in keeping my spirits up when times were really tough.

The staff at the Alfred also get a huge thumbs up! If you ever have the misfortune of ending up in ICU, the staff there are amazing, along with all of the staff on the respiratory ward.

I have to also thank my beautiful friend Cathy who is spending the weekend at my place looking after me, cooking me gourmet meals, making me do my breathing exercises, and waking me up at the right times to take my meds.

I've saved the final thankyou for my donor. I now have a chance at living a normal life. Thankyou is not enough, but I just haven't quite worked out the right words yet. 

Goodbye 2011.... I'm not sad to see you go.

1. Bunting 4, 2. flying ducks wip, 3. Biancas handbag 1, 4. Edna 1, 5. Dress1 2, 6. Go Granny Cotton - 3, 7. Becs Cushion 1, 8. Go granny blue, 9. Treasure bags, 10. Dress 1, 11. Granny shade - evening, 12. Couch, 13. iphone pouches, 14. WA Bag 2, 15. chooky cushion 3, 16. Beads 1, 17. Red Brooch 1, 18. Cloth doll - dress, 19. Teatowel bag , 20. Brooches, 21. Flowerpress tea towel bag 1, 22. Dolly apron dress front, 23. Doiley skirt 2, 24. Desert Island - blue and yellow, 25. CurlyPops 5, 26. Pocket mirrors 2, 27. humphrey 3, 28. Texta Roll - owl - close up, 29. Kitchenaid Cover 1, 30. T-shirt quilt finished 1, 31. Shell close up, 32. Apron 1, 33. Connors pencilcase close up, 34. CurlyPops 1, 35. In Full Bloom 4, 36. Ruffle Skirt 2

Thank goodness 2011 is over. It really has been my annus horribilus. I don't like to whinge and whine in this space, but seriously, this year had quite a few sucky bits!

A New Years Day ambulance trip and a week in hospital,  another few days in hospital having lots of horrible tests,  and eventually being listed for transplant....

There were various battles over medical funding with both federal and state beauracracy.......... and then there was that false alarm....

Just for my own amusement, I'm going back to the list that I made at the start of the year to see what I managed to tick off.

• Stay out of hospital (that one actually is my number one priority)! (half tick)
• Have more fun (half tick)
• Work on more illustrations (half tick)
• Work on more textile art pieces (half tick)
• Apply to take part in a group exhibition (gold star - I took part in 2 this year)
• Indulge more in my love of eating lunch at nice cafes (gold star)
• Remember that exercise is a necessary evil (half tick - I haven't missed many PR sessions)
• Spend more time properly planning meals and cooking for myself (fail - no interest in cooking)
• Experiment with more coffee blends and make a shortlist of my favourites (half tick)
• Procrastinate less (have decided that procrastination is actually part of my creative process)
• Remember that me time on the couch watching trashy tv is good for my soul (half tick)
• Improve my writing skills (fail)
• De-clutter more of my life (gold star)

Overall, I'm pretty happy with that list of things.

There's no list for this year - living in limbo, and waiting for a phone call that will change your life forever sort of negates the need for any forward planning. I'm not going to indulge/frustrate my inner control freak by making plans that I know I can't keep.

Instead, here's a teeny tiny little look back at some really amazing stuff that happened in 2011.

• The Hottie Challenge
• Cosmo Magazine Fun Fearless Female Nomination in the blogging category
• The release of my Go Granny fabric printed right here in Melbourne (and it was the inaugural Frankie & Swiss order).

Looking back through my flickr stream, I can see that even with the sucky bits, I really managed to achieve a lot.

So, it's hooray to a brand new fresh year. Hopefully a year that will bring me some new lungs..... and a brand new lease on life!

Why I love the Crafty Interwebz.... edited

I need to say an extra huge super-duper thankyou to everyone who joined in with my Call For Help and helped to Spread the Word all over the social media world!

If you emailed your letters of objection, then you've probably received a group email from the Chief Executive of the Alfred Hospital thisafternoon.

'Following an exceptional increase in clinical workload in the adult lung transplant program, and the need to temporarily reduce activity, staff have advised that the workload has eased sufficiently to incrementally resume normal operation.'

People Power Rocks! 

Edited: Todays report in The Age

Spreading The Word

Vic has been hard at work and has created a little bloggy button for me, so if you would like to have your say and send an email or a letter to voice your concern over the current delays with lung transplants, then please feel free to add the button to your blog, so everyone can easily find this post.

You can download these standard letters and send them as they are, change them, or create your own.

Premier - Ted Baillieu
Health Minister - David Davis
CE Alfred - Andrew Way

Another alternate letter

The button can be downloaded from Flickr here or here

or you can pick up the code -

<a href="http://curlypops.blogspot.com/2011/09/spreading-word.html"><img alt="help400" height="246" src="http://farm7.static.flickr.com/6151/6179987820_9e68a25da1.jpg">

<a href="http://curlypops.blogspot.com/2011/09/spreading-word.html"><img src="http://farm7.static.flickr.com/6157/6179987814_af01ea76e7_o.jpg">

Thankyou!

Today News

I promise I'll be back to crafty programming soon, but I just wanted to share today's newspaper stories.

The good news is that it made the front page of todays Age Newspaper in Melbourne.

It's also in todays Herald Sun.

Thankyou for all the messages of support yesterday, and an even huger thankyou to everyone who took the time to email / write a protest letter and send it off to The Premier, Health Minister, and the Chief Executive at the Alfred.

When you get to the point that you need a lung tranplant, there are NO other options. Listing only occurs when you get to the point that you will probably die within the next two years, without a transplant.

I'm just so frustrated that I now also have to fight for funding.

A Call for Help - EDITED

Sorry for the unscheduled break in Crafty transmissions, but I just arrived home from the Hello Etsy event that was on tonight to find the following email in my inbox from the Heart and Lung Transplant Trust (Victoria) Inc

Page Link

The Age newspaper reported on 17 September that The Alfred is considering restricting the number of lung transplants it performs due to budgetary constraints. 

Read the full article on the Age website here and a further article dated September 22nd here. 

If there is one issue our Trust should take a stand on it is this one.

As we all know, transplant is lifesaving surgery and the suggested reduction in the lung transplant program will mean likely premature death for some of those on the waiting list.  In addition, it will also have an adverse impact on donor rates which defeats the purpose of recent government expenditure and advertising that has gone into this great initiative.

The Trust is deeply disturbed by this report and is considering how best to address the issue with The Alfred and various government stakeholders. 

The Committee urges all members to take up this fight with their State government representative. 

We would also encourage letters be sent to the following recipients:

Minister for Health
The Hon. David Davis, MLC
GPO Box 4057
Melbourne
Victoria 3001
david.davis@parliament.vic.gov.au

 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Premier of Victoria
The Hon. Ted Baillieu, MP
Office of the Premier
1 Treasury Place
GPO Box 4912V V
Melbourne
Victoria 3002
ted.baillieu@parliament.vic.gov.au

 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Andrew Way - Chief Executive
The Alfred
P.O Box 315
Prahran
Victoria 3181
Andrew.Way@alfred.org.au

 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Members may wish to use the following wording to help their drafting.

• Example government letter here
• Example Alfred letter here

Can you spare 15 minutes for me.... please? My life depends on it. 

EDITED: - I've created my own versions of the protest letters to make them much easier to copy and paste

Premier

Health Minister

Alfred (feel free to delete the HLTTV member details first)

The Transplant Waiting List

So today is the official day.

31st August 2011 - the day that I join the active waiting list for a double lung transplant.

I was diagnosed with my lung disease nearly 22 years ago now, and around 10 years ago I was told that I would eventually need a lung transplant.

I guess that now is my eventually.

If you've never discussed organ donation with your family, then I hope that this post just might be a catalyst to sit down with your loved ones and have that discussion, and then join the official organ donor register via Medicare.


From the Donate Life website:

Organ & tissue donation facts

• One organ and tissue donor can save the lives of up to ten people and significantly improve the lives of dozens more.

• Australia has a world class reputation for successful transplant outcomes.

•  Australia also has one of the lowest donation rates in the developed world. 

• 98% of Australians agree that organ and tissue donation has the potential to save and improve lives.

•  40% of Australians do not know the donation wishes of their loved ones. 

• Less than 1 in 5 Australians (only 17%) have had a memorable discussion with their loved ones about their donation wishes.

•  The most important thing that helps a family's decision is their knowing the wishes of their loved one. 

• Australia's family consent rate is low with less than 60% of families giving consent for organ and tissue donation to proceed.

•  Around 1700 people are on Australian organ transplant waiting lists at any one time. 

• On average, people on the transplant list must wait between 6 months and 4 years.

•  In 2010, 309 organ donors gave 931 Australians a new chance in life. 

• The number of organ donations in 2010 was the highest in any year in the past decade.

•  Australia's improvement in the first full year of reforms (increased by 2.5 donors per million people) compares favourably with that achieved following other countries' reforms. UK achieved an increase of 1.5 dpmp in its first full year of reforms; and Spain, descirbed as the world leader in this sector, also achieved an increase of 2.5 dpmp. 

• In 2010, the Australian population had 13.8 donors per million people. This exceeds the 2008 (12.2 dpmp), 2009 (11.3 dpmp) and the 9 year baseline average (10.2 dpmp).

•  Australia's rate of cornea donation puts it in the top five countries for corneal donation rates. 

• In 2008, 1096 people donated their corneas. As a result, 1696 people had their sight restored.

If you would like to learn more, please visit the Donate Life website.... and keep your fingers crossed for me!

Imogen's Story

Not long after I first blogged about the Hottie Challenge, I received a heartwarming email from Jacqui telling me a little bit about why her family had decided to join in and help to raise funds for the Margaret Pratt Foundation.

I couldn't resist asking whether she would be interested in writing a guest blog post.

So thankyou Jacqui for allowing me to share your story....

I am fairly new to the world of craft blogs – I love reading them and getting amazing ideas for my favourite hobbies of sewing/ knitting/ crochet, but have only just started experimenting with blogging myself. 

I’d really love to be part of this fantastic community, but getting started is a steep learning curve – nevertheless, I’m having a play over at Lost in The Moment. 

My 11 and 13 year old daughters are currently working on their Hottie Challenge designs and when I told Cam how relevant this fundraiser was to us, she asked if I’d be able to write a bit about our experience.

So, deep breaths, here goes … 

In 2007, our then 8 year old daughter Imogen (an incredibly vibrant, healthy little girl) was sent home from school in Brisbane with a headache. Over the next couple of weeks she got sicker and sicker until she was eventually diagnosed with mycoplasma pneumonia. 

Imogen was ventilated in intensive care for 2 1/2 weeks, during which time we were called into the ‘little (bad news) room’ many times to be told that the pneumonia had spread throughout her entire lungs and that things were looking very grim.

We thought we were then so incredibly lucky when Imogen was able to be taken off the ventilator and was moved back to the wards.

Fast forward 3 very scary, heartbreaking months however, and she was still in hospital and requiring constant oxygen and a wheelchair. 

At this stage she was diagnosed with end-stage respiratory failure and bronchiolitis obliterans (due damage from both the horrific form of pneumonia she’d had and also the pressures that had been required by the ventilator to keep her alive). 

We were told that she wouldn’t be able to leave hospital and that they didn’t expect to be able to keep her alive for more than another couple of months. The rollercoaster that had been our emotions over that 4 months can’t really be described, basically we just tried to hold onto our sanity 1 day at a time. We also had 2 and 6 year old children, so ‘exhaustion’ didn’t quite describe it.

This is when the wonderful team from The Alfred hospital in Melbourne came in to our lives. A doctor and nurse flew up to see Imogen and over the next couple of weeks she was accepted onto the transplant list. 

She was then flown (on the Queensland premier’s little plane as she’ll proudly tell you) down to Melbourne and stayed at the Children’s Hospital for 3 months while we waited for a donor. By this stage Imogen was spending 18 hours a day on an assisted ventilator machine. 

During this time Margaret Pratt (who started the Foundation that The Hottie Challenge is raising funds for) came over to the hospital to support us and answer any questions we had about transplants – she was an amazingly generous and brave lady.

The doctors had originally planned on a heart/lung or double lung transplant from a child, but when no suitable organs were offered and Imogen’s test results were continuing to worsen, they decided to use adult cut-down lungs with her. Thank goodness for the kindest family in the world, we finally got the call one morning that it was her turn.

After 6 months living in hospital and using a wheelchair, Imogen walked out of The Alfred hospital only ten days after receiving her transplant. The first couple of days post-transplant were very long and hard, but once she got past these, her recovery was a breeze. 

We stayed in Melbourne for a further 3 months for rehab, and then we returned to Brisbane just in time for Christmas. Imogen was then able to return to full-time school, and apart from an occasional short stay in hospital for minor infections she has been extremely well ever since. We now live on the Central Coast in NSW.

 

In August 2009 Imogen competed in the World Transplant Games on the Gold Coast – she won four gold medals in swimming and a bronze medal in running. It was a fantastic experience for her. She’s now just started high school and loves playing netball. 

I’d always been a strong supporter of organ donation, but of course would have never dreamt that it would one day save my own little girl. Trust me, we were as normal a family as any family gets, so I feel so strongly that all families need to have THAT conversation and get their feelings out in the open. Now’s the time to do it, you just never know how important that decision might be in your life.