Wednesday, March 27, 2013

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

Friday, March 22, 2013

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!

Tuesday, March 19, 2013

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.

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!

Monday, March 18, 2013

If you can't sew...

 .... then you just have to find something else to make.

I actually designed and ordered these beautiful Tassie Blackwood hearts before I received the call, and they arrived while I was in hospital.

Serendipitously, they've worked out to be the perfect solution to my medical sewing ban.

Each heart contains one of my original designs, either in wallpaper or fabric. They're the perfect gift for someone you love.

They'll be available at Gleaners Inc tomorrow.

Sunday, March 17, 2013

Sunday Snippets... the Nurseslave edition

One of the rules after my transplant was that someone has to stay with me for the first three months.

My mum has been staying during the week, and I've been so lucky to have a wonderful group of friends who have put their hands up to come and stay on weekends.

This weekend it was B-Fab's turn on the roster (and yes, OCD control freak me has an excel roster going on).

We cut lots and lots of five inch squares from vintage sheets and pillowcases... and took two trips to Spotty for sustenance.

.... and then I watched as Brianna did all of the hard work piecing it together...

... before she cooked me a gourmet dinner.

Michelle coined the brilliant #nurseslave hashtag over on instagram. Trust me - it fitted perfectly!

Please excuse the blurry action shot but the anti-rejection meds make me really shaky!

While the puddings cooked, she cut out all the pieces for her second quilt top of the day.

Before it was time for the piece de resistance...

She had me exhausted just watching!

Hey Sunday Snippets is back over at Tinniegirl today - Yah!

Thursday, March 14, 2013

My Creative Space - FilmLife

A little while back (before the transplant), I was comissioned to design / create some items for the FilmLife Project.

The brief was fantastic - I had free reign to design whatever I liked, as long as it included the official FilmLife Logo.

The printed fabric panels for the iPad sleeves arrived while I was in hospital, and then I found out that I wasn't allowed to sew when I got home..... aaaggghhh!

Luckily Bec stayed over last weekend and came to the rescue but sewing them up for me.

The FilmLife Blogging competition is still open until March 25th. It's simple - just write a blog post that inspires and sparks conversation about organ and tissue donation. You could win $250 just by entering!

Sunday, March 10, 2013

Sunday Snippets

A few snippets from my week...

Things may be a little quiet on the blog front for a while.

I'm back at the hospital three days a week for rehab gym sessions, tests, appointments etc.
But, worst of all, I'm not allowed to use any machinery that vibrates..... including my sewing machine (GASP)!

Bec came over to play nurse this weekend, so I just had to watch as she sewed, and overlocked and made me two lovely new summery nighties.

I also have the shakes from the anti-rejection drugs, which makes it hard to hand sew, write neatly, or take an un-blurry photo.

In the meantime, I'm working on something that doesn't require sewing, and is even slightly immune from the shakes.  Fingers crossed it works!

Friday, March 8, 2013

A Piece Of Cloth

Photo courtesy Gleaners Inc - that's my dress on the left

Tonight was the opening night of A Piece Of Cloth at Gleaners Inc

Unfortunately I couldn't make it to the opening, but thank goodness I was thinking ahead, and had all of my pieces completed before that middle of the night phone call came through.

I didn't get a chance to photograph my dress, so I've borrowed one of Liz's lovely photos (above).

From the very beginning, I wanted to take my piece of cloth, use it as inspiration, design my own fabric, and make a dress for the exhibition.

This was my original mocked up design inspiration for the finished dress.

I couldn't stop at one design.... so I included them all in some cards

To finish it off, I also designed a one-off cushion featuring some of my designs.

I can't wait to actually get over to Brunswick to see it...

Saturday, March 2, 2013


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.