I think this photo above pretty much sums up how I’m feeling at the moment ! I am very glad to be home, and spend what seems an inordinate amount of time sleeping or just resting with a book or a cat. I feel good, just very tired and I run out of energy very rapidly.
It is definitely spring here in Fremantle, a couple of photographs below to show the colours and brightness today, it’s due to climb to 28C on Wednesday then the weather changes again to rain and clouds. The garden is rather chaotic, when I have the energy I’ll be out weeding for short periods of time, that’s allowed as long as I wear gloves to prevent any injuries, bare feet definitely not allowed either particularly outside.
I am now in the care of my Australian medical team, my GP and my heamatologist. Later on, I will see my neurologist and definitely get an MRI, but at this point for recovery the first two are the most important people. While neither doctor would endorse the procedure, which ethically they are unable to do as AHSCT is still undergoing trials in Australia, they are happy to look after me. What is required at the moment is monitoring of my blood chemistry, and observations around fever and body temperature, to ensure any infections are caught quickly.
Dr Federenko, my Russian specialist, is very happy to communicate with either myself or with my medical team here, and has provided a fully detailed report of exactly what I have been subjected to in Russia. So while there isn’t traditional continuity of care, they communication paths are very clear and open between Perth and Moscow.
Now that I’m home, I am very aware that the journey still has a long way to go, I really now have to descend the mountain of AHSCT. The meme above captures possible side effects, and I am definitely suffering from the loss of hair ! Otherwise, sweating and weakness are definitely present, with some sleeplessness although I’m not sure how much that has to do with my mid day sleeps. I am not really suffering from any of the other side effects, but am very aware of the possibilities.
One important point, and emphasises the regular blood checks, is that I can dip into and out of neutropenia ( suppressed immune system) for the next 6-12 months, so the regular blood checks are definitely required.
There is a very good diagram of the HSCT recovery rollercoaster, as the designer has asked people not to use it in their blogs I haven’t added it here but if anyone is interested, do a google search on “HSCT recovery rollercoaster’ and it comes up very quickly.
I am now embarking, or will do in the next days, on rehab. As I was relatively lightly impacted by MS prior to AHSCT, do not have wasted atrophied muscles and the impact is mainly right side weakness, foot drop and swinging hip when hot or tired, my rehab will consist of
- not getting too tired
- walking, small walks which will gradually increase in duration
- using the elliptical trainer we’ve rented for 6 months
- the MSGym, an online gym which has a range of programs targeting strength, balance and flexibility
- meeting my personal trainer once a week at home
- I can’t swim for three months, but will start after Christmas. However, I will be down at the beach very soon and wading in the ocean
Dr Federenko was very clear that small amounts of exercise, frequently, are more valuable than overdoing the exercise, and that the exercise must be something that you enjoy doing. I like his philosophy.