Almost Three Months

Well how time flies when you're having fun (ahem)!

The last time that I updated over here was when I hit the 18 month mark on the waiting list. I must admit that I was getting really worried that the call would never come.

Luckily for me, that call came just a few days later.

In the early evening of that night, I decided to have a nice hot shower, and dye my hair (goodbye grey) and shave my legs. I went to bed at about 9.30 and watched telly for a while, which was my normal routine. At about 3AM, I woke up and I was thirsty, so I had a few mouthfuls of cordial and then layed back down in bed. About 1 minute later the phone rang, and I knew straight away who it was.

I had to be at the Alfred by 5AM, so I quickly did my nebs, closed down all of my online shops, emailed my stockists, had a shower in disinfectant, and got changed. By that time, my sister had arrived and it was time to get in the car and go.

Day 0 - X-Ray 4.59AM

We arrived at the Alfred just before 5AM. They were expecting me at Emergency, so I was taken straight in to X-Ray. The X-Ray only took about 5 minutes, and by that time, the Tx Co-ordinator had arrived to take me upstairs to the treatment room.

Day 0 - Bloods 5.35AM

This was the third time that I'd been called in and ended up in the treatnent room. I still wasn't sure if this time was going to be the one, but I really wasn't nervous at all.  They start doing all of the preparations at this stage - lots of filling out of paperwork for admission, bloods, changing into a lovely hospital gown, and then the pre-transplant meds. I kept myself amused in between with lots of text messages flying back and forth with friends and family.

Day 0 - 5.58AM

Day 0 - Theatre Doors 7.50AM

Theatre was booked for 8AM, and we headed downstairs. I had to say goodbye to Rach at the theatre door and was taken into the pre-admission area. The anaesthetist and the surgeon both came and introduced themselves and had a chat about what to expect from the procedure. I still wasn't really nervous at this stage.

I warned the anaesthestist about the problems that I'd had with the epidural first time around, so he went and checked my previous records. He decided that he would only have one attempt this time, and if that didn't work, then I would just have to go with the pain relief drugs instead.

About half an hour later I was wheeled into the operating theatre.  The Social Worker arrived and held my hand as they attempted the epidural. As expected, it didn't work. So, that plan was scrapped, and I layed down as the staff started work on me. Not long after, I was asleep.

Day 0 - 8.10PM Writing Messages

The donor lungs were in excellent condition, but there were a few complications during the surgery. My heart was quite enlarged (from working so hard over all these years), and was taking up too much room where the left lung was supposed to fit, so the left lung had to be cut down (lower lobe taken off and upper lobe only implanted). My original lungs were very hard to remove as they were adhered to the chest wall, and there was a lot of bleeding. I ended up having to go on bypass for three hours, and had massive blood tranfusions. There was also some damage to my left diaphragm. 

Day 1 - 11.50 AM All Hooked Up in ICU

I really don't remember much about Day 1. I woke up with the breathing tube down my throat, so I couldn't talk at all.

 Day 1 - 2.08PM Trying to communicate

I was trying to write messages to my family who were there in ICU. Not sure whether any of it actually made any sense!

There were a lot of drugs, and lots of dozing, sleeping, waking, panicking. It's impossible to tell what time or day it is in ICU.

Thank god for the amazing staff who work there. They were absolutely brilliant.

That's part one of the story. More on the recovery to come.

Waiting

Today is the 18 month mark.

When I was first listed for transplant, I was told that the average wait for lungs was 6-18 months.

So I guess I've now outlasted the average.

It's been on my mind a lot so I haven't had much sleep this week. I also had a power outage early yesterday morning that set off all the oxygen alarms, and forced me to get out of bed to get the portable cylinder out of the car. Not exactly the type of alarm that I needed!

I'm hoping that I can just mark the date tonight and get on with it.... oh, and get some sleep.

On staying busy

I was chatting to Carly today and something she said stuck in my head. How do I manage to give myself enough rest to stay well and keep going? It's a hard question to answer. I thrive on being busy, and when things are tough medically, staying busy is the best medicine.


I must admit that this past week has been one of the strangest ever, so I thought I'd do a little run down of activities...

• Friday - Called into hospital for transplant that didn't go ahead.
• Saturday - the B-Fabulous Wedding/Pop-Up Shop at Olive Grove
• Sunday - day off
• Monday - Visit from Bec, Sewing, Tissue typing bloods, Prescriptions, Post Office
• Tuesday - Sewing, School pick up, Dentist, Post Office
• Wednesday - Intragam infusion, Olive Grove to pack up, Gleaners Inc to drop off stock
• Thursday - Echocardiogram, Open Drawer to drop off stock, Lunch with Cathy, Tx Clinic
• Friday - Fedex pick up, Pulmonary Rehab, lunch with Carly, Post Office.

I've also volunteered to help out with the social media and newsletter for the HLTTV, I have an article due for DiVine, and I've just accepted some contract administration work for next week.

But for now, I have new fabric to play with!

Another day another false alarm

Today started off like any other day.

I had big plans to actually get out of bed on time, head to Pulmonary Rehab and then go and meet Carly for lunch.

The alarm went off at 8AM and I remember hitting snooze at least three times.

At 8.41AM my mobile phone rang, and it was a mobile number calling me. I assumed it was the cabinetmaker as I'm finally getting my disability kitchen mods after two years of waiting.
It was actually one of the Transplant Co-Ordinators.

They had some donor lungs that were a match and they couldn't say whether I would get a transplant today, but it was a possibility and I should prepare and they'd call me back. Luckily I was still asleep and hadn't had breakfast at that stage, although I was allowed to drink half a cup of coffee.

So I went through the drill - nebs, shower, disinfect, clean clothes, and wait for another call.

At 10.08AM they called back and were still unsure whether it would go ahead but needed me to come into hospital just in case.

We went through the first bits of prep / paperwork / bloods etc and were just about to do an ECG, when at about 12.50PM I was told that it wasn't going ahead today.

There was another lady who was also a perfect match for the donor who is in dire need of a transplant right now to save her life. I hope she pulls through, and I hope the third time will be the one for me.

Photo Essay

After trepidation, desperation and complication, finally hope, and home

Read more: http://www.smh.com.au/national/health/after-trepidation-desperation-and-complication-finally-hope-and-home-20121027-28c8u.html#ixzz2BLWwJMH0

I saw and read this article in the newspaper last week, but I've only just taken the time to play the video and watch the photo essay. It's quite amazing.

A Step Back in Time

This photo has nothing to do with anything apart from the fact that this door makes me want to giggle every time I sit in the waiting room.

Anyway.... I went to see my Respiratory Specialist today. We lamented the fact that I still haven't had a phonecall, and pondered the reasons why, and had a chat about the olden days.

In the olden days, he hand wrote all of my notes on foolscap paper, and the receptionist would file them inside a manila folder. These days, everything is on the laptop.

I asked him if he could find the oldest pulmonary function test results that he had on the laptop. I started seeing him in 1990, but the oldest he could find in a hurry were from 1993.

In 1993, I was 18 years old, 169cm tall, and weighed 59 kgs.
In 1993, Melbourne phone numbers were still only 7 digits.
In 1993, I played Basketball and Netball and was in my first year at Uni.
In 1993, I could run up and down flights of stairs at work with no problems.

And this is today.

One Year Ago Today

Just marking time again.

One year today since that 4AM phonecall.

After receiving that call after only seven weeks, I would have never thought that I'd still be waiting one year later.

It's worrying.

I don't know whether there haven't been any matches, or whether there have been matches but someone else on the list is more ill than me and closer to the end without a transplant.

Trying not to think about it.

Had to just get the words out of my head.