Month: March 2018

Today’s visit to Peter McCallum hospital was for the usual blood tests – wait two hours and then see Ming – the Clinical nurse for an update.  This is my usual routine when I go into hospital.

We chose to walk up today which was a typical blustery coldish Melbourne morning.  It takes about 45 minutes to walk up to the hospital but I figure it is good exercise and it gets me out of the apartment!

Ming had good and challenging news today.    The high doses of steroids I am on (to manage the Graft versus Host disease) is damping down my immune system which is reducing my ability to control the cytomegalovirus in my blood. So I have had to swap the milder prophylactic dose of antiviral for a treatment dose of a more aggressive antiviral drug  which has the unwanted side effect of slowing down the production of blood cells in my new bone marrow. All major blood tests were OK although my Haemoglobin and Platelets have dropped as a side effect of  the Valganciclovir (the antiviral drug I am now on) and can only be fixed by transfusions. So I’ll be hooked up for some transfusions on Thursday which will take 5-6 hours at hospital.

The blood results today are:

Haemoglobin – 82

WCC – 4.7

Neutrophils  – 4.2

Platelets – 27

Biliruben – 14

Ming said things are still tracking well overall and he is happy with the major results but the team will have to keep a close eye on the results this week as the GVH may show up again in my liver.  It is a very steady balancing act between all the different drugs that I am taking and the corresponding reactions.

On Friday night we ventured out to the Convention Centre to hear Tim Winton talk about his new book – The Shepherd’s Hut.  Tim spoke to an audience of around 1000 people – primarily about boys and how we’ve got lots of issues to deal with.

Over the week we were lucky enough to catch up with a few more people including Claire’s good friends Sophie and Charlotte Sutherland.

Wendy Cook and Helen Measday from Wagga called in for a cup of tea on Saturday.  It was good to get their news and an update on Wagga happenings.

We managed to catch up with Jan’s brother Andrew, Heather and their three lovely children, Ned, Maggie and Jack for a pizza in the local park – they were on their way home from Cape Otway after a camping weekend with the home schooling fraternity.

And on Sunday we enjoyed a great visit from our business partner in the Kimberley Michael McConachy who was enroute to Brisbane for work.  Michael called in with lots of documents to sign but also to update us on the most recent happenings in our business.  It was a great catch up.

 

This week my Cousin from America, Scott and fiance Katie are in Australia and we plan a good catch up on Tuesday with a family dinner Tuesday night (an early celebration for Claire’s birthday as well).

 

The news of course is I am still alive!  It has been been 10 days since my last blog which was week 26 – Imagine missing a week without a blog!   I even had friends on the phone calling up to make sure things were OK- thanks for your concern.

From now on I’ll probably keep to a Monday blog after the usual visit to the Doctor or if special news comes to hand I will of course put this out!

The visits to the doctor are now twice a week and for the last couple of visits there has not been a requirement for any extra IV fluids which has made the visits so much shorter.

I am still on steroids to help with the GVH but this is being cut back slowly together with a reduction in some of the other drugs.  My liver function is holding up very well as is my kidney function.

Some of the key blood results are below:

Haemoglobin  – 97 (down from a recent 117)

Wcc = 12.9

Platelets – 53 (down from 84)

Neutrophils  12.2

Bilirubin – 11 (which is in the normal range – indicator of liver health)

Overall my doctor is very happy with these key blood results and together with some other important numbers she says “I am doing very well”

I am still struggling eating normal meals, I am eating more in the morning  but seem to run out of puff by lunch time and sleep is still a challenge.

On the social scene

We have had many visitors over the last 10 days including my parents who headed off to Darwin for a train trip south on the Ghan. We also had a visit from Oscar Sheridan (nephew) and Jan’s parents Helen and Allen en route to yet another wool sale.  And Darren and Kath Wallace from Wagga en route to the Great Ocean Road for a week.

Oh yes and a special dinner with Kate and Stewart Sutherland in Hardware Lane just to catch up on the Tassie/Tooma news, (sorry for the first pass – it has been busy!)

Richard Reid dropped into the hospital for a good catch up (sadly Rich has just lost his Dad to cancer) and Peter Zacharia.

And last weekend Dougall’s mates from Wagga Oliver and Alister Butt (and Ollies’ girlfriend Jeannie made an Epic trip to Melb for a good catch up.  It was good to hear their stories (together with a load of fresh vegies and eggs from Jenni Butt – thankyou!)

 

 

 

The big news from this week’s visit is the fact that I have confirmed Graft vs Host disease of my liver.   Whilst this is not ideal the medical team are happy in a way to see this as it confirms that my brother’s immune system is strong and having a ‘go’.

Today was a usual visit to hospital with the normal blood collection in the morning and then a 1.5 hr wait while the blood samples are processed so the doctors can analyse the data and make an informed decision on where to from here.

In my case I needed a litre of IV fluid with magnesium just as a top up.  All my other blood results were good although the WCC and Neutrophils were a little higher than normal due to the large amounts of steroids I am on for GVH.

The steroids have a secondary impact on sleep making it difficult to get much without taking extra sleeping tablets.

Whilst at hospital good friend Matt Kibble dropped in for a quick chat – it was good to catch up on his news.

And finally I snapped a shot of Jan at Docklands with her beautiful new scarf that Claire found at a market on the Mornington Peninsula last weekend.

Oh yes Michael and my sister Fiona have just had some time in Kenya and took some awesome wildlife shots.

I was discharged from Hospital again last Friday afternoon with no night temps and things seemed to be going ok.  My abdominal pain had subsided and most of the diarrhoea had moved on which was very welcome news.

We spent the weekend reading papers and catching up on a few phone calls to family etc. Claire made another trip east to catch up with us.

We headed to Lygon Street after a quick trip in to 7B to have my PICC dressing replaced on Saturday afternoon. I needed some new trousers as I’m down to 75kg and having trouble keeping my pants up! We also caught a movie Sweet Country – which ended up being quite  bleak , the walk back from Lygon Street was about 14,000 steps so a good bit of exercise.

On Sunday we cycled over to the punt under the Westgate Bridge and back home via Yarraville  – about 15 kms round trip.

On Monday walked up to Peter Mac for an out patients visit with some unexpected consequences.

After seeing the medical team they thought everything was going OK but upon a further review of my blood test results decided my liver had “gone off” and was showing signs of some Graft Vs Host disease (GVH).  Treatment involves higher daily doses of steroids (150mg per day now) and and additional liver treatment. Graft vs Host is something they want to see at low levels.

So I spent the afternoon in hospital getting a top of two bags of potassium plus a litre of saline to help bring my creatinine level down again – it seems to bounce up and down like a yo yo.

For the time being I’m out of hospital, no temps and feeling quite good with the exception of the steroids which cause severe lack of sleep and don’t make you feel so good.  But if it helps control the GVH then I’m up for it.

Lachy popped in the dinner on Monday night before Claire headed back to Perth.

It is funny how the world works.  I had 4 days in hospital over the weekend and by Monday 26th (which happened to be my birthday) I still hadn’t raised a temperature and things seemed to be going reasonably well so the doctors decided to let me go home.  They were having trouble finding the source of my high temperatures which is normally an infection of something they can treat with anti-biotics.  But in this case it appeared that I was not carrying an infection.

So home I went on Monday afternoon in time for a lovely birthday celebration with Jan and Lachy.  A few presents were shared and we enjoyed a nice meal – although for me I’m still on the cut down version without any appetite!

On Tuesday I experienced an unusual amount of abdominal pain which persisted most of the day. By lunchtime I was not feeling so well so took a nap after lunch and rested for most of the afternoon only to get up and find my temperature was climbing quickly.

We watched it for about an hour but to no avail – it was well over 38 at 38.7 so unfortunately there was no way out but back into hospital.  We rang Ward 7B and they confirmed they should have a spare bed for the night but we still needed to go through emergency.

After being admitted (1.5hrs) and seeing a doctor (1 hr) I got the usual blood tests (septic workup for high temps) I rested for a bit before being transferred to room 22 in Ward 7B by about 11.00pm.

The Doctors are still miffed by my condition as they still cannot find an obvious source of the high temperatures.  They organised a CT Scan of my lungs to re-check the old infection – and found that was all clear – a big relief!

On the Wednesday I also received a top up of potassium, magnesium and 2 units of blood as my haemoglobin level had dropped again.

The next thing for Thursday was an endoscopy to check on my bowel.  They are looking for obvious stress on the bowel and the possibility of Graft vs Host disease which affects the gut and bowel first.

The results showed GVH may be a possibility but this can only be confirmed from the biopsies they took which will take 4-5 days to analyse – more waiting.  In the meantime the doctors have changed my medication slightly adding Steriods for the possibility of GVH.

So at this stage it looks like I will have a reasonable stint in hospital waiting for confirmation on GVH and if this is the case it may well be another 2 weeks in hospital while this settles down.  I feel reasonably well and have not had any abdominal pain at all today which makes me wonder what really is going on.

My lovely parents gave me a Spirograph kit for my birthday – something to keep my busy for quite some time.  We all remember this as kids!

I will keep you posted!