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.
"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.