The best gift of all


Cam AKA Ms CurlypopsI’d like to introduce you to Cam, AKA Ms Curlypops, who is a long time SORTED! fan and participant in our blog/tweets.  I hadn’t met Cam until very recently, but felt I knew her quite well through our digital chats.

What I had NO IDEA about until right before meeting her was that she is in need of a double lung transplant. As a long time supporter of organ and blood donation*, I wanted to share her story here, and encourage ALL OF YOU to consider the best gift of all this Christmas/holiday season.

It’s seriously the most amazing thing you will ever be able to donate or recycle.

Cam, what’s the condition that dictates your double lung transplant? How long have you been on the waiting list?
In simple transplant terms, I’m classified as suffering from respiratory failure. I’ve been on the waiting list since August 31st 2011 – only around 12 weeks so far.

I was diagnosed with a chronic granulomatous lung disease when I was 15. I then developed hypogammaglobulinemia when I was 26. The hypogammaglobulinemia is treated with an infusion of Intragam (an antibody replacement therapy made from donated blood) every four weeks. I’ve had more than 140 infusions so far so I’m very grateful to thousands of very generous Australian blood donors.  The combination of the two conditions have led to bronchiectasis, which is a permanent abnormal widening of the airways or bronchi.

When I was 27 I was told that my lung disease would eventually require me to need a double lung transplant. I nearly fell off the chair in shock, and then I cried all the way home. That was more than 10 years ago now…. how time flies.

Why do you think donor numbers so low in Australia?
I think donor numbers are so low in Australia purely due to lack of education. The government has spent a lot of money on advertising campaigns and tried to educate via Medicare, but it doesn’t seem to have worked. I’ve been really surprised by conversations that I’ve had with people I’ve met over the last few years. There is still a lack of understanding in the general community about how the waiting list / organ donor system works.

Overall, the biggest obstacle to donor numbers is the fact that families must give consent, usually during a time of tragedy and heartbreak. If a family hasn’t previously discussed organ donation with their loved one, then they must find it really difficult during that time. Even if you are a registered donor on the national database via Medicare, your family still has to give their consent.

Ouch! This was news to me!  This means that my loved ones can reneg on my wishes!  How awful! I definitely had the conversation with them AGAIN after I learned of this flaw in the system.  I resolve to keep having that conversation too.  With such a waiting game and such physical challenges, what sustains you Cam?

There are quite a few things that sustain me – family, friends, oxygen (of course), chocolate, and craft! I figure that no matter what happens, I’m going to make the most of the life that I have. I can’t really see the point of sitting around feeling sorry for myself. I have too many things to do.

Including making your oxygen friend sexier, I see 🙂

Margerita anyone?

What do you donate/recycle?
I try to donate / recycle everything… which can be challenging at times.

Agreed, recycling does take a bit more time and effort.
As far as charitable donations go, I can afford to make small financial donations to my two favourite charities (particularly the Margaret Pratt Foundation), but I also donate my time and skill to assist where I can. The online craft community is fabulous at getting together to support charitable causes and they make it really easy for anyone to join in.

I also tend to excuse my op shopping addiction on the proviso that I’m supporting a charitable cause….

Oh yes, I’ve heard it all now…

…but apart from that:

  • I also use a lot of recycled supplies in my craft – vintage teatowels, tablecloths, doilies etc. Op Shops are fabulous for finding vintage haberdashery like zips, binding, and embroidery thread. I’ve also been fortunate to be gifted lots of donated fabrics from eldery friends and relatives.
  • There’s always a garbage bag hanging around with clothes to donate to the oppy, and my recycling crate in the kitchen is always full.
  • Running an online business, I send and receive lots of mail, so I’m constantly trying to re-use and recycle packaging/postage supplies. Bubble wrap always gets re-used, and most envelopes (especially the Australia Post tough brand) can be re-used. I keep all incoming cardboard boxes to send out packages too.
  • I have a big tub of fabric scraps which I try to use in small projects. When they become too tiny, I donate them to my nephews creche for craft activities.

I draw the line at washing out food tins to put in the recycling. Sorry!

I understand, it’s definitely a mucky job. Speaking of food, what’s your favourite comfort food when you are crook?

Definitely chicken soup, or chicken schnitzel and chips from the local take-away shop, or a packet of Twisties!

Ooh yes!  I made sure the welcome pack I created for my 6 Steps colleagues had Twisties in them.

Also, lemonade and Red Cordial (perferably Golden Circle Apple and Raspberry) to wash it down.

Any excuse to talk food: my comfort food is pan fried toasted cheese sangers, bad white bread, bad Kraft singles, real butter, murray river salt and whiet pepper.  DELICIOUS!

Is it a bird? Is it a plane? No, it's an oxy-witch!

Best gift you could receive (feel free to state the obvious!)
Of course the best gift that I could ever receive would be some new lungs!

Other than that, I like to receive useful gifts, like handmade soap, craft supplies, perfume, or chocolate. I think I’m at the point in my life where I just don’t need any more stuff.  Instead of a gift, I’d much rather that someone came to visit bearing cake and cappucino.

Biggest organisational issue?
My biggest organisational issue is definitely ‘letting go of stuff’. I have waaaaay too much! I tend to keep things just in case I might need them one day. I also tend to keep things that have associated memories.

I visited my old workplace earlier this week and my old boss was surprised that I’d attended an organisation workshop as I was always so efficient and organised at work. I explained that when I was at work, there was always a clear line between what was important and needed to be archived, and what could be discarded. It’s not so easy with personal possessions.

Something you learned at the 6 Steps workshop?
Gosh! I learned soooo many amazing things at 6 Steps Workshop, and I’m slowly putting them into action. These are my current faves:

  1. It’s not about storage – it’s about retrieval. This has made it so much easier for me to find things when I’m working on orders.
  2. Label label label.
  3. Bookcases should have empty space. I cleaned out my bookcases and found missing art prints and a book that I’ve been looking for over the last 3 months.
  4. Evernote – I have terrible problems remembering things (due to lack of oxygen to the brain), so Evernote synced between my iPhone and PC is a godsend.

I have copious notes and much work left to do, but I’m completely inspired to keep it going.

I will also be taking my copy of Sorted along to my next infusion for a re-read!

Any thoughts, philosophies, websites etc you’d like to share?

Make the most of the life that you’ve been given. Spend more time with family and friends. Follow your heart. Do what makes you happy. Be kind and gracious. Make a difference.

(ok, I might tear up about now!)

Please give us a shameless plug for curlypops and a bit ‘o history about how you came to do that.

I’ve always loved making stuff, but I was never into sewing. In 2003, I bought a new house and borrowed my sisters old sewing machine to make curtains. Then I decided to make myself a handbag, and another handbag and another handbag. I didn’t really need any more handbags, so I started making them for friends in my spare time.

In late 2007 I had to give up what I previously deemed my real career in manufacturing because of my health. All of a sudden, I had a lot more spare time on my hands and so I started my CurlyPops blog in January 2008.

As more and more people found my blog, and liked what I made, I decided to turn it into a little home-based business.

I now have a dedicated sewing studio where I work most days, and I have my own online shop, as well as supplying bricks and mortar retail shops.

Blog: http://www.curlypops.com.au
Shop: http://curlypops.bigcartel.com
Stockists: http://curlypops.blogspot.com/p/curlypops-stockists.html

But I would also love for readers to check out about organ donation here www.donatelife.gov.au They have a discussion toolkit which you can use to talk over with your family.

You can join the official Australian Organ Donor Register online via Medicare here: www.medicareaustralia.gov.au

To find out more about blood donation, the Australian Red Cross website is: www.donateblood.com.au

The Margaret Pratt Foundation Heart Lung Transplant Trust – www.mprattfoundation.com.au

Cam, thanks so much for sharing your story – organising, donating and recycling is such an important topic, and I hope we inspire even JUST ONE person to register for organ donation or give blood.  We all wish you the best for your upcoming transplant – whenever that may be!

If you do decide to become a donor after reading Cam’s story, we’d love you to let us know by way of comment below.  You may remain anon if you wish.

*for the record, I am a registered organ donor but can no longer donate blood as I resided in the UK during the mad cow palaver.  I have also made it very clear to my loved ones that I really, really, really, really mean it when I say I’m a donor.  I’ve stressed to them that I don’t want them to deny permission once I’m gone.  It really matters to me.

13 responses to “The best gift of all

  1. Oh Cam I really hope you get your new lungs for Xmas, wouldnt that be a fantastic gift. Have done alittle work with our local Organ co- oridinator up here, Im always telling people to have the chat with their Fam about recycling their bodies, the most generous thing we can do for others…going to check out your blog now xx Jen

  2. Gosh, just another reminder – treasure EVERY day!!!!!!!Good luck to you Cam – hope you get your lungs soon. And yes, I am definitely a donor. I was hit by a drunk driver (don’t drink and drive) with the unfortunate luck of being on the back of a motorcycle when I was just 19 and coulda / shoulda / mighta died. were it not for the generous blood donors, I would not be here. Been a blood and organ donor ever since 🙂

  3. With Christmas holidays fast approaching this is a timely reminder Lissanne & Cam.
    I also am a registered organ donor but can no longer donate blood as I resided in the UK during the mad cow disease palaver. I’ve also talked over with my family my wish to be an organ donor upon my death. I only hope I die in a situation that allows this. My mother wanted to be an organ donor but unfortunately she wasn’t in good enough shape when she died…

  4. Hi Lissanne
    Great blog entry. I fully agree with you – I’m also on the register and I donate blood. Although I didn’t know you needed your family’s consent as well! How ridiculous. I’m pretty certain my family would have the same view (my grandmother donated her body to medical science) but I will double check just to be sure!

    • It’s my absolute pleasure Cam, we all wish you good health and a speedy transplant. I’m sorry I neglect to mention one of your greatest supporters, Mr Limpy Houdini Dog but I’m sure he’ll forgive me.

      With your permission, we’ll keep readers in touch with your story and hopefully they’ll keep us in touch with their donation wishes (hint hint!)

  5. Cam you are amazing. I am so glad I met you – you’re funny, talented and have a great perspective. I love you 🙂
    I hope you get your new lungs soon. I am a donor and I will write it in my will that my lungs are to go to you.

  6. What a great interview! I love her too. And I’m a donor, but also can’t donate blood because of the UK/Mad Cow thing! Oh, and I faint a lot. So that’s unfortunate. But Cam is amazing to read/watch/listen to (I am going to meet her one day!) and I’m praying she’ll get her lungs.

  7. This is a late comment (finally on holiday – working full time sucks when it comes to being ‘sorted’, but I’m grateful for the life I have!) Cam thanks for the reminder – I keep letting my family know about organ donating and how important it is to me. A tip for folks – it is best to let the wider family know too, in case it is all of you who go at once (heavens forbid!) I used to be a ‘vampire’ in the blood donor labs so always have been aware of how fantastic and easy it is to give this token of life. You are a great example of making the best of what God has given us, time included. So is Lisanne! All the best, and I’m sending up a prayer today for healing of the original condition – hypogammaglobulinaemia (NZ spelling!). That plus new lungs = sorted!

  8. I donated Plasma on the 31st Dec 2011. After you donate blood for a while they may ask you to donate plasma. It takes longer. Like all donations make sure you are well hydrated before – even more than usual – just drink lots of water and herbal tea if you want. The more you drink the quicker the blood will flow.

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