Saturday, July 3, 2010

Day Six - Sunday

Mum was going to come in today, with technology! I felt ready for some computer action!
But mum woke with a sore throat, and wasn't sure if it was an allergy, or a cold from being around Dad, so she decided to stay away to see what happens.

Niece Steph and sister Sue came in the morning -  was great to have a chat with Sue (I'd already seen Stephy) and talk finally about all that has been happening.

While the girls are there, I get the naso-gastric tube taken out and I was delighted to have it out!  It was really yucky getting it out though!!. Straight away it was easier for me to swallow tablets. Eating was much easier all of a sudden as well. Small pleasures, just awesome!! By Sunday evening, my throat no longer hurts anymore.

After that the central line came out and that was great to have that out as well.

At this stage there is still a fair bit of fluid being drained from the lungs but it is starting to feel a bit more comfortable today to lie down.

Sue says

"The ICU head honcho came in to check on her (they visit all patients who were in ICU to make sure they shouldn't be back there) and he said, Well you are looking pretty good this should be short visit and it was! He had seen Gen a few days previously when she was out of bed and thought this one will be okay. So, all good there."

My sister Sue has a lot to juggle, as her son Christopher also has Cystic Fibrosis, and is having a tune up at the same time as me being in here!  So she is visiting one and the other.

Sister Di visits in the afternoon and we have a good old chatter as well. It's so good to feel chirpy and have the energy to talk again.

I have started to sound wheezy in my chest, due to the old flem gathering the middle. It is still extremely hard to move. My cough is starting to get better. Each time they check my drainage tube holders, I have to huff and cough..this gives them some idea on the nature of how things are draining.

I think it was today too, that at some stage I managed to have a shower, ahhh that felt good!

Before the nasal tube is taken out....

and after!

Niece Stephy, Me and Sister Sue. Sue did a wonderful job keeping
all my Facebook friends up to date with my progress

Day Seven - Monday

Di my sister bought in my laptop today - wow it takes me a while to get through all the messages! I don't get through them all actually!! I'm totally gobsmacked at how much love was pouring around me, particularly from people I didn't know. Was and is, just amazing!!

I *think* ( really hard to remember time frames!) that it's today I have a bit of a sing - I can't go too loud so not full voice - but I can already feel the control and difference in my breathing. I can't even remember now what I sang, but I couldn't stop crying for about 10 minutes afterwards!!   My voice has always stayed strong - but I would take breaths in a phrase that would normally take 3, and overall I just didn't have the energy to sustain "bigger" songs.  I'd want to take my normal singer's breath, and couldn't.  Ahhh to feel such a difference already!!!

My mum turns 70 in August and is having a family party - so I'm hoping I'll be able to sing a few tunes in her honour.

Tom Kotsimbos my main CF doctor says gidday to me on the ward round and various other teams come around dutifully to check up on my progress. Drainage tubes not quite ready yet to come out.

Simon Renn (another transplant patient that we know) is in the room next to me and it's great to finally talk to him. Simon nearly died around the time of his transplant - many people have told me I'm inspiring, but this man is 10 floors above me in inspiration!!!  Leading up to his transplant he was incredibly sick, but he hung in there.

Simon was one of the first CFers I ever came to know, when I started my tune-ups at the Alfred. In the days before the CF ward was renovated, it was four people to a room. So we had shared rooms a fair bit too.

Starting to look a bit better! :)


  1. The suspicious throat turned out to be reflux/allergy - it was suggested I put it on to score a day at home and get some attention....

  2. Sadly Simon Renn passed away on Monday morning with his family by his side.
    He was a goid family friend and he will be missed dearly.