They never told me there would be days like these. Well they did actually – but not quite like these. Paul has managed to baffle his medical team.
For those of you who have witnessed Paul’s ‘Mr Angry’ red face well that has nothing on the colour red he wears now. His torso, face and head are absolutely covered in a red lumpy rash and his temperature continues to remain high. If it wasn’t quite so serious I would be laughing my head off at the way he looks.
He has been on intravenous antibiotics since Saturday night without success so they have now changed the type he is having. None of the tests have turned up the source of trouble yet so they continue to investigate. A skin specialist will be coming to see him some time today to take a skin sample to see if that can shed any light on his skin issues.
They are still not ruling out Grant vs Host Disease (GVHD) but if it is it’s not presenting in the typical way. But then again Paul has always like to do it his way. To find out more about GVHD check ‘About Allogenic Transplants’ in the top menu.
Remember – one day at a time.
Well hello to everybody from Middy’s Marriott. These last few days have been tough going, Sandi told me yesterday that it was one of the lowest days I have had, well I’ve had a good night sleep and feeling much better this morning.
Since 10.30pm on Saturday evening I have been linked up to an intravenous drip all the time and I might be for some time to come depending on how my temperature goes. I am being very well looked after by all the staff here and Sandi.
Doctors have just been passed for their visit. Looks like I will be in for the next few days until they sort things out but better now than to go through that emergency department again!
Thanks to you all for your messages and support it really means a lot to us.
We were warned that Paul was about to face a roller coaster of ups and downs. Well he has just gone down into one of those dips. Just a little hiccup though, but it has seen a change of addresses for Paul – he has moved from the Bedford Belaire back to Middy’s Marriott.
He has been feeling a bit more tired over the last few days and most things have been a real struggle. Friday night his temperature was up and it continued to stay high today. Anyway around dinner time it was 38.6 (which for a healthy person may not be that bad) but for Paul it’s is in the range where he needed to notify the keepers of Middy’s Marriott and they have missed him so much they invited him back. We expect that it’s just some little bug he has picked up and he will be vacating the suite after just a couple of days.
Seriously though, this is a Saturday night we will both remember. He had to present at the emergency department at RPH and although they were expecting him he had to go through the normal admittance procedure. Well what an interesting experience that proved to be – boy there were some colourful characters in the ER triage. One has to have a lot of respect for the medical staff.
Took quite some time before he was back on the BMTU with all his old mates as they had to shift someone out so that he could have a bed back in the ward. That being the case, he is now in room ‘C’ with —- guess what — more drugs being pumped into him!!!!
Yesterday Sandi took me down to East Perth for a little walk around one of my favourite spots. Well it was a bit of a shock to find that I just couldn’t go the distance. I was completely knackered – had to get home – felt a two hour nap coming on. Remember it’s baby steps Mr Rattles (used to be Mr Rattled now its Mr Rattles:) )
Couldn’t stay down too long though – not when you have work mates bringing you a trophy as photographed below! Thanks Sharon and Marilyn you really put a smile on my face. Will certainly be a prized possession – great addition to this athletes trophy collection ….. Lol
Paul went for what will become a routine Tuesday doctor and blood test visit. He continues to astound all of us with the way his new soldiers are behaving. Forget the soldiers I think Paul got some pretty mean warriors.
The easiest way to show off his progress is to post a photo of the results. The column on the right in brackets shows the normal range. In the last two weeks he has gone from blood cells too low for zero to, in most instances in the middle of normal range.
This aside, he still gets pretty tired doing very little – might not be the City to Surf this year but he is certainly working on it.
The first 24 hours at home down. Own bed – ahh the serenity, own shower, own space wow what bliss. Home cooking – appetite slowly starting to pick up! Pretty hard though when drug intake equals about 32 tablets a day – this helps fill you up.
Went for a walk around the block today. That was enough to wear Paul out! Baby steps.
Moving forward folks the posts may become a little less. This does not mean that Paul is out of the woods yet. The home coming really just marks one step in a long road and a baby step toward the next phase. Our next significant step is day +100. At this stage Paul will have (unfortunately for him) another bone marrow biopsy. We are hoping this will show that his bone marrow is 100% donor 🙂 If you are a little bit superstitious you might be interested to learn that day +100 for Paul is exactly one year from the date of the original blood tests that started this whole journey. At this point in time hopefully they will wean Paul of the dreaded drug cyclosporine which works to suppress his immune system to allow the donor cells time to take hold.
During this time we are keeping our fingers crossed that his new stem cells don’t wage too much of a war on whatever’s left of his diseased marrow, causing what they call ‘grant versus host disease’. You can read a little about this in the menu item ‘About Allogenic Transplants’.
At this stage though I am happy to report that Paul’s body and his donor cells are Marching on Together.
My term has been served I am at home. Thank goodness it was much shorter than anticipated because the month since I left work seems a life time ago. That just makes me think – I’ve often joked about my previous life – now I have an additional post transplant life haha.
As I sit at home today I must spare a thought for the very generous donor who gave up some of their stem cells and some of their time for some bloke like me across the other side of the world the opportunity of still being here in the future.
Anyone reading this blog – if your young enough I take this opportunity to urge you to register as a donor – there are many people out there like me who who would be forever grateful for a second chance.
Scroll down for today’s photo shoot Sandi just loves the camera!
Photo – leaving hospital – and this is the third trip
Photo – Left is Rachel who showed me around the BMTU prior to transplant and right is young Demi who was witness to the transfused of those vital cells (a first for both of us). Thanks girls!
They gave me a going away present