Week 57 – GVHD returns again

Unfortunately the GVHD (Graft vs Host Disease) of my gut has returned again.  This started a week ago with two or three bouts of diarrhoea.  I had hoped it might resolve itself but after a week of waiting things were not improving so the medical team decided to put me back on Prednisolone (steroids) to fight the GVHD.  The ‘preds’ kill off the T Cells in the blood stream which are attacking the soft lining of my gut, causing irritation and  ‘malfunction’ of the gut system.

They have placed me on a low dose of steroids (25mg daily) and will start the weaning in 10 days.  This is now considered to be chronic GVHD which might last a life time and will probably need to be treated with a low dose of steroids as it flares up each time.

The low dose of steroids which will be weaned relatively quickly should mean that the development of excessive fluid and fat (puffiness of the face and tummy) will be kept to a minimum.  I am happy about this as I had started to get quite concerned about the excessive fat around my face, chest and stomach (now I know what a beer gut feels like and it is not very comfortable!).

The blood tests from today were very encouraging:

Hbs – 89, Wcc – 7.3, Neutrophils – 3.2, Platelets – 166, Creatinine – 86 and Mg & K in the normal range.

Amit is confident that two of the three ‘lineages’ of blood cell generation by the Bone Marrow, are working well now and its just a matter of time until the production of Red Blood Cells  kicks into gear.  He won’t be drawn on how long this might take – perhaps up to another 12 months.

Unfortunately the Steroids have an impact in my ability to control the CMV so I am back on 12 anti-viral tablets a day – just when I was getting down to just a few tablets a day, I am now back on about 20!

This is the game of snakes and ladders that I find myself playing.  Just when you get towards the top of the chart you find yourself slipping down the big long snake to the bottom.  Amit suggests that in fact it is just one of the smaller snakes and things will continue to improve – I hope he is right.

Over the last few days I have been feeling much better and my headaches have now moved on.  The lumbar puncture from last week was all clear with no sign of leukaemia or viruses in my spinal fluid  – another relief.

Jan’s Birthday

We enjoyed a great day last Thursday and much to our surprise (and tears of joy), we were surprised by the early return of Dougall from  his travels in Europe and the return of Lachy from  Bali for a few days.  Claire had organised this behind the scenes and managed to keep it as a complete surprise.  It was great to have the family back together again in Melbourne.  The children had shouted us and Jan’s parents a night at the Ballet where we enjoyed the performance of Mid Summer Night’s Dream.

On the weekend we ventured down to Geelong to see the Archibald Prize paintings as part of their regional tour.  It was certainly worth the drive.  Following that we had a lovely lunch with Jan’s friend and colleague on the GGS Council, Susan Nicholson and husband Stuart.  They have a magical small farm just north of Anakie, near the You Yangs. Stuart currently manages the Aged Care property portfolio for the Folkestone.

On Sunday we drove out to Mount Macedon to see the open Garden at the historic Bolebek, owned by friends of ours, Hugh and Bridget Robertson.  They open up their magnificent gardens yearly to help raise funds for the local garden society.  It certainly was a fabulous day out, followed by a nice family picnic in the Carlton Gardens.

Yesterday we were lucky enough to complete a behind the scenes tour of the Alma Doepel, an old timber square rigged boat that is being restored in Docklands.  The ship was built in the early 1900s and a devoted band of volunteers plus a small group of shipwrights are painstakingly restoring this vessel to preserve some of our maritime history.  The tour was absolutely fascinating and well worth being put on your list of things to do in Melbourne. (I have been asked for key recommendations for Melbourne visits which I will compile for a future blog).

For the time being I am attending Pilates classes twice weekly (using the famous reformer!) and another gym session once weekly plus lots of walking – all in an effort to return a little bit of muscle mass!