#2395 Saturday 28th June

During the night.... What a madhouse!  The nurses YELL at the other patient in the room..... It seemed to go on for hours.  Doors slamming..... Call bells constantly beeping.  It seemed to go on for hours before quiet descended.

Now it's 6am and the yelling is slowly subsiding..

12.30pm.  I've been able a arrange to rent/buy a cpap machine..... Pick up this afternoon.  So I can go home this afternoon.  I may have to sneak out..... their politics may not mesh with transport arrangements.

Lessons learned. 

1 go private.  The public system SUCKS.

2 be very assertive.  When I really badly needed attention, I had to ask 5 times..... Ended up standing in the corridor and yelling. 

I took this sign off the wall and pointed out that they say they will listen.... but they don't listen at all

I will probably end up self discharging.

2.45pm. .I've been able to arrange for purchase of a new cpap.  I'm determined to be departing from hospital at a time to fit Kaylia's needs. I don't accept other requirements. 

They use little tricks to get power...  the final one is not allowing me to have my medications.  If necessary I will walk out without them cos I know the pharmacy will give me a replacement set. 

#2394 Friday 27th June

I slept well last night.... apart from the usual being woken up for readings. I can drift back to sleep fairly quickly.  I've just had the doctor's rounds.... the tubes are getting less. I'll probably be going to the ward today.

10am...... There're getting ready to move me out of the ICU and up to the ward.  I'm told that I have sit..... stay out of bed. 

This whole rigmarole tells me that I will be well advised to do a serous exercise program.  I'll use the benefits available from our health fund.  There's a gym not far along Guilford Rd.... it should be convenient.

10.15 am..... Sure as eggs if I get involved in something, they will give the order to move.

1pm .....  The transfer is a right shemozzle!  We got the ICU transfer all done correctly..... but the receiving ward is in a bit of a mess.  So I'm sitting in the ICU room..... just parked there till the ward is ready.

2pm..... I have been successfully transplanted from ICU to a normal ward. .... and boy have I been spoiled in ICU!  ICU is like a 5 star hotel..... personal attention 24/7.  Now I have a nice room, shared.... stale biscuits..... Phew!

The biggest issue at present is that the doctors say that after the acute pulmonary odema, they insist on me using a CPAP machine at home..... and the machine that I have is old and dirty! The nurses spent hours trying to resurrect my CPAP but they can't get the mould out. They say that I have to buy a new CPAP..... and I have no $$.  HBF can pay for one but I have to buy it first.....  then claim a refund.

The doctor's say that I can't go home till I have a CPAP.....  and I want to go home. 

I might explain to HBF and see if there is another way..... Except that I can't find any way to send a message to hbf!  Amazing.

4pm.... Showers and toilets are communal.  I kid you not!  The bathroom is 1950s style.  Only 2 showers and 2 toilets for the whole ward.

This time of sickness was easy to manage in ICU.... but this is pretty amazingly bad.  I feel sorry for the staff in these working conditions.

5pm......i had a urinary catheter during the surgery. It went bad last night and I asked for it to be removed.... Things got very bad and I was very upset. I had to ask 5 times before a doctor authorized the catheter removal. Its out now and I've been able to calm down

6.30pm..... After tea I went down to the cafeteria.... some yummy food. 

After return to base a physio came inspect my CPAP.... he made no comments...... so I guess that I'll set up my own machine for tonight. My logic is that it has been in a very sad state for many years and it hasn't killed me. Now that it's been thoroughly cleaned,  it will MUCH better. 

#2393 Thursday 26th June

Wow! What a saga!  The main operation went fairly quickly..... probably about half an hour or so...... then I had a "acute pulmonary odema"..... APO..... which is when blood is sucked into the lungs. This took a long time to fix it..... about 5 hours in the theater! So I was then a further 24 hours in the  postoperative ward........  then I was moved to the intensive care unit.  It's now 1.30pm and it looks as though I'll be moved to a ward soon.  The whole affairs has been beautifully managed.  Top marks to RPH.  The pain levels have been much lower than I expected....

I now have just one kidney and the remaining kidney is functioning perfectly.

5pm...... Still in ICU 

Pain 1-2.    Sleepy

9pm....... Still ln ICU 

The nurse on duty tonight brought me another meal.... and I made the mistake of eating it.  I'm too full now.  I've been dosed with Movicol twice so my full tummy will self correct in due course. My nurse is from India and her English is so so...... she understands the language but not the colloquialism...... the meal was a mistake on context.  (.... bit of a worry in the medical system.)  For example the Aussie nurse next door had her coffee mug in her hand..... so I said "weak, white and one. Miss Oz understood perfectly.....  but my nurse was very puzzled and I had to give her a long explanation of the saying. 

#2392 Tuesday 24th June

My bag is packed ready to go.... 

#2391 Sunday 22nd June

The days are getting longer.....

Yesterday was the day for kaylia to visit Dr Neel and have her flu needle. All week she was in high anticipation! Dr Neel was very patient with her and waited till Kaylia indicated that she was ready.....  then it was over. She is very proud of herself.... "brave girl".

My turn next.  On Wednesday I have be at RPH at 6.30am so I'll have to get a taxi in.  The operation will be over by midday..... and then I must get up on my feet ASAP. 

#2390 Friday 20th June

No date for the operation yet.

I've just been past the Bunnings backdoor (on the way to collect Kaylia).... and once again scored some very good pieces of timber that will be very useful in future!   When I find these bargains I usually don't have anything in mind.... but having the stock of raw material feeds the inventiveness! 

Later:  the supervisor reported that Kaylia worked well today. She was at Salvos op shop in Morley and worked 3 hours continuously doing sorting of clothes on the racks. 

OPERATION NEXT WEDNESDAY 25th

#2389 Wednesday 18th June

This morning I thought that I'd donate blood..... only to find that I've reached a "life milestone" and I can no longer donate.... I'm too close to surgery for donation now and after surgery, I'm prohibited for 5 years.... which then puts me outside the age limits! 

When Kaylia was heading off for a day with Jenny yesterday I was struck by how cheerful she was..... and it occurred to me that she is nearly always very cheerful.  We are so fortunate to have her in our life.

I miss having my shed!  I see lots of simple things that I could make.... in my old shed it would be easy.... but now it's almost impossible to make them.... and if I did make it, there's nowhere to store it and no way to use it. Sheesh.