I’m home!

I’M HOME!!!!

Back in Hospital – Day 12

1 more sleep?

I HOPE SO!!!

Back in Hospital – Day 11

Day 11

So I spoke too soon. The oral antibiotics has hit and now I’m sick again with nausea and vomiting. I was almost going to go home today but when the Dr heard I threw up again he decided I stay a few more days.

The plan now is to go home monday. Counting down the days! I’m over it here!

Lesley I miss you! Stupid Dermatology dinner conference thingy whatever you are at!

Back in Hospital – Day 9

Day 9:

Today was a pretty good day. Nothing much new happened except another potassium infusion which stung like hell but I took some pain medication and they ran it very slowly so it wasn’t too bad.

At night my Sister and Cousin came and we watched episode 2 of Top of the Lake. It’s awesome!

Thanks "S" for the awesome bunny balloons!

Back in Hospital – Day 8

Today was a big day.

It was decided that because my normal EB clinic with full skin check was going to be in a few weeks anyway, that we would do it while I was already here. So at 10am Prof Murrell came with the Derm Team and did the full naked skin check including photos etc. That took up most of the morning.

I also started the first dose of oral antibiotics I was telling you about. My hopes were almost crushed because not long after it I felt sick and threw up BUT, then when I had it again at night I didn’t get sick! Yay!

In the afternoon I had to have another cannula put in because they want to make sure I have IV access. That took 3 attempts because I have non existent veins and am hard to cannulate. Boo

Check out the cute card from my little friends Emily (2) and Sally (9months)!

Back in Hospital – Day 7

Today was a good day in that it was the first day in weeks that I wasn’t nauseous and was actually hungry. Yay!

The rest of the day was pretty crap as soooooo much happened and so many Drs came to discuss what’s going on and plans for the x1000000 medications I’m on like which ones treat what and which ones make me sick blah blah…

In order for me to go home I need to be on 2 antibiotics for a few weeks. The problem is that oral antibiotics seem to make me incredibly sick and obviously I can’t go home with an IV. So the current plan is try one of the antibiotics oral that isn’t meant to make you sick, and the other one may be able to be put through my PD catheter when I have dialysis. PLEASE CROSS YOUR FINGERS THE ORAL DOESN’T MAKE ME SICK! I love food too much to be nauseous!

Amongst all that was a potassium infusion that stung like hell and that went for 6 hours. Fun!

Tonight I got a visit from a Twitter friend @paintmehappy! It was lovely to meet you!

Thankyou @paintmehappy

1 Week Later – Back in Hospital part 2

Guess who’s back, back again?
Shady’s back, tell a friend!

Well I made it a week at home and am back here at St George. I wasn’t getting any better at home so we went to emergency and it seems now I have an infection in the blood. I am really scared and hope they can treat it. I feel so sick and am nauseous and have diarrhoea.

Will try to update daily from now on…

Back in Hospital – Part 1

Well so much for staying out of hospital.

I don’t feel up to writing much so this will be mainly a photo post of the events of the last month but here’s a quick run down.

Basically I got pneumonia and a big absyss in my lung. It seem to happen overnight and when we went to the Emergency Department we were only in the waiting room about 10 mins until they rushed me into the Re-Sus room. I then spent about 3 weeks in Intensive Care with a tube down my throat. While I was sedated for most of it, they woke me up too early and had to keep delaying taking the tube out, so I spent about 9 days with a huge tube down my throat AWAKE. The tube also meant that I couldn’t talk or communicate at all, thus I couldn’t yell out when damage was being done to my skin by being lifted.

Tube came out, spent a month in hospital, blah blah blah…

Here’s photos

Unconscious in ICU

Not happy with breathing tube

Tube still in

Tube is out!! Yay!!

No oxygen mask

Damage done to my back

Flowers from EB Mum and Nana Kylie and Mary

Bunny doona from @hay_jude!

Bunny card from my cousin @ainslielenehan

A BIG Thankyou to @ellacoffeebean, @steviemarie89, @hay_jude, @ainslielenehan and @pinknantucket for your gifts!

Wordless Wednesday: Sushi

The Results Are In!

So you know how over the past few months my parents have been having all these tests done to see if they could be possible candidates for donating me a kidney? Well yesterday they told me the results were in……

There is this system called the HLA (Human Leukocyte Antigen) Marker Scale. Since I am so incredibly knowledgable in this topic and not confused at all after reading this very clear and informative article which explains the science,I won’t bother going into details. You can go work it out for yourself!

Well unfortunately it turned out that:

Dad: Only 3 of 6 matching HLA Markers
Mum: A bit better with 4 out of 6 matching but for other health reasons is not a compatible donor.

Bummer

It’s disappointing, but was probably not going to be possible anyway. I mean the logistics of having me in need of care AND my donor out of action, leaving 1 person left to attend to both invalids AND run the normal household chores!
There are still a couple of options which I’m guessing will be discussed next.

In other news, my case has been presented to the NSW Transplant Board by my Renal Professor and I have been accepted as “Transplantable” but “Proceed with Caution”. Next up will be an appointment with the Anaesthetics Team at Prince Of Wales Hospital as that is where all kidney transplants are done.

So the search for a Donor continues!

Also Congratulations to @Colvinius who recieved a brand new kidney last Friday! So happy for you! Here’s hoping you and your new kidney have a nice long life together!

Will update when I know more

xx