Wednesday, June 30, 2010

Day Two - Wednesday

I wake up to a sea of my family's faces wavering in and out - Mum, sister Sue and sister Jo. Sister Dianne is on her way from Las Vegas (she was on the start of a HOLIDAY!!!) and brother Mike is on his way from Canberra.  Dad will also drive down the next day.

I can't speak yet as I still have the breathing tube in, so I write words in the air with my finger. Later on a board is found and I also write on that.  I'm still off my head from the drugs so I'm already being a bit cheeky and naughty.

Mum says

"She has been on morphine all day because they thought the epidural pain relief was lowering her blood pressure; will reverse again in the morning and take her off the ventilator. There has been too much fluid around the lungs so far, but they are now draining well. Of course there are tubes coming out of very possible location. She flashed her clam-shell scar at us at one stage and it is quite neat! Yesterday as we waited we were devising codes Gen could use and of course fingers in various alignments were suggested.....this morning soon after we went in and she was showing signs of consciousness I remarked there had not been any fingers yet and out from under the sheets appeared her hand.....with suitable gesture...."

My sister Sue says

"Jo, Mum and I went in to see her in the Intensive Care Unit (ICU). I was blown away by how large the unit is and how much equipment is available for each patient. It is an absolutely amazing facility.

Gen looked fantastic (for someone who had just been through such a lengthy operation) and we were really surprised at how responsive she was. She was coming in and out of sleep but knew what was happening around her and was using her head to say "yes" and "no" and also her hands and fingers for other communication, as she couldn’t talk. She tried a bit of air writing and spelt out messages for us. We soon worked out that trying to read them backwards wasn’t going to work. I think Gen was a little frustrated at times as to how dumb we were but we did improve during the day! Her final message to me later in the day when I said, “Goodbye, I love you” was “I love you too”. She confirmed the message with a head nod after Carol (her nurse) asked me if I knew what she had written."

Back to Gen.....

It is extremely uncomfortable in the ICU - it's stuffy, I'm already running hot, and the mask makes it worse - plus I'm having difficulty breathing.

I have a gastric tube feeding me food - my throat is already very sore - like I am getting tonsillitus.  It's a combination of the breathing tube coming out, and this other gastric tube being in. 

I have a canula in my neck - which pumps things in (antibiotics, anti-rejection medication) and blood can also be taken out of it. 

A catheter for all the fluid from the various drugs being pumped through.

And I finally have 4 large drainage tubes coming out of my lungs.  They are about 40 cms long sitting inside.

One of the anti-rejection medications I now take interferes with insulin levels. A lot of post lung transplant people become diabetic.  So I am also on insulin injections, with the hope  that as the body adjusts and the dose of the particular steroid is lowered, that the insulin levels will be normal again. Thankfully the needles in the belly do not hurt! I also have another needle of heparin to keep my blood thin to prevent blood clotting.

Another thing also used to prevent blood clotting and fluid retention is these special socks -  plus these wraps that make little squeezing motions to keep things moving along.  This adds to me feeling hot.

In and out of my daze the doctors say they can see a "shadow" on my X-ray. Because the breathing tube has already been pulled out, they cannot do a bronchoscopy to see straight away what it is. 

After mum and the girls leave, I lie there feeling disappointed and scared about what this might mean.  It's probably just fluid, but also could be infection.  I focus on the fear for a while, then change my thoughts to gratitude and very slowly the fear eases itself away.

I'm so uncomfortable in every way so there is no way that I will fall asleep - there is a clock on the wall so I watch that...the hours go by so so slowly.  The drugs can also create insomnia which adds to the wide eyes!

I'm desaturating during the wee hours of what is now Thursday morning, even with all that lovely oxygen. So I have to be put on a machine called a BiPap Machine.  It's a terribly close fitting mask that breathes for you - its aim is to fully expand the new lungs.  I hate it sooooo much. I have to do an hour of this and it is truly the longest hour of my life (except for the other hours I had to do it!!!).

I believe I was on this horror of horrors machine earlier in the day, but I was too out of it to notice.

Pics of before the LT

Gen with first anti-rejection medication

Gen and Jane, the LT Social Worker

Gen and LT co-ordinator, Nicole. All robed up now

Tuesday, June 29, 2010

Day one of the LT adventure

Many times I went to write something here and just couldn't bring myself to do it.  There were certainly MANY moments of each day that I loved, but so much of it was sucking arse. I didn't want to write that and let that be it!! 

But then came along THE day.

At 3.15am the phone rang last Tuesday morning. I was in a very deep sleep but woke straight away. We’ve had a few deaths and accidents in the family over the years, and the phone calls for these always came around this time. So when the phone rang, I thought either something bad has happened, or it’s lungs.

I didn’t think it was bad so I wasn’t surprised when mum said, “Yes it’s your lungs.”

Dad was deep asleep and mum had to wake him up! He came out disorientated and then I could see he got all excited and gave me a hug after I got off the phone. Mum was still a bit out of it and we all stood there trying to decide what we should do first.

I jumped in the shower while mum and dad packed. I’d had a suitcase packed ready in my car for over a year.

Dad decided to stay home to look after things there and join us a few days later once I was conscious again!

Mum and I left around 4.15am.  My parents live near Echuca (Bamawm) and Nicole the LT coordinator wanted us there about 7.30am.  We were both feeling calm and making jokes. She drove so I was able to text people. Quite a lot of people either are night owls or have their phones on at night – hahaha! And the texts starting firing back….they were wonderful to receive so I kept reading them out as I received them.

In between there were times mum and I were quiet - I looked out at the window and tried to stay present and enjoy the landscape outside as daylight started to wake up the world.

A cruisy trip until we reached the merger onto the Hume Highway just after Wallan. Stand still traffic. After about twenty minutes and listening to the radio trying to work out what was going on and what to do – mum decided to ring triple zero. We established a cow had been on the freeway, then shot (we still don’t know if someone actually hit it?) and the traffic should start moving shortly. Unreal!! Poor cow I say. Mum says, “stuff the cow”!! Hahaha!!

The traffic still wasn’t moving – discussed the option of a policeman trying to squeeze in to get to us to try and get us a path out. But then they rang back again to say traffic is definitely on the move….yippee! By then, sister Jo was already at the Alfred, so I was texting her and the CF coordinator with traffic updates!

We finally get to emergency, and Jo meets us. Have a chest X-ray, then Nicole the LT coordinator who is running on barely any sleep for a long time, takes us up to 5 east (respiratory ward) to wait in the treatment room. As I already have my PICC in (from still doing HITH -Hospital-In-The-Home) I am given antibioticss and my first dose of anti-rejection medication.

There - more waiting! My surgery kept being delayed – it was 11.30am to eventually being about 4.30pm after a few changes. Could have run into a herd of cows and it wouldn’t have been a problem! LOL!!

Sue arrived shortly after we were up at 5 east. She got my laptop out and started reading out all my messages for me. I was still very calm and composed but there were tears coming from other directions.

I loved knowing what those messages were before I went in – they gave me so much strength knowing how much love was behind me.

Finally it was time to be wheeled into theatre and I said goodbye to the girls. I’d also spoken to my sister Di and brother Mike had left a message too – so I’d managed to get a moment with all my siblings…wonderful.

Sad when I left them but Jane the LT social worked bubbled away trying to distract me.

More waiting! It was very busy. I believe the lady who donated my lungs, also donated her heart and was also being received at the Alfred. So at least a few transplants were going on .

A dude comes up and says “what side is your defibrillator” – and I’m like “what”?

Wrong patient Jane says – this is a lung transplant! We start laughing and she says I better stay right here so you get the right organ!!

I’m wheeled into the surgery room at about 4.10pm. It takes a while to put my epidural in but overall it’s a smooth procedure. Jane was holding me the whole time as I had to sit hunched over.

Then it was time to lie down and I knew I would soon be gone and in the surgeons' trusty hands. I said goodbye to my lungs and thanked them again for everything they had done.