BLOG 63
26 October 2018
Hello to my faithful family & friends
So, I’ve had some mystery swelling going on (in now) both feet | ankles | lower legs, the R foot gets bigger than the L - we think due to my S1 neuropathy, causing drop foot, causing stress fractures.
The overall swelling my new OT believes is a late common issue/side effect after bone marrow transplant of GVHD (Graft Vs. Host Disease). After asking she did confirm that she has seen Odema type swelling post transplant in many other Heam patients.
The vascular system ages faster in a person like me, due to all of my past treatment protocols (instead of a woman with 40 yr old veins), I seem to have swollen like a 70 yr old woman.
My body has probably had enough and steroids don’t help either, however - I have no choice. So, I am now trying on some hospital grade compression stockings to push and constrict that fluid up into my body, where it should stay.
I have knee length ones on currently, which feel comfortable - almost look like burns compression body stockings. And when I am doing more walking and activity - I have full length ‘chap’ type compression stockings, that go right to the waist, under my clothes (of course), lol.
Getting them on is a bit of a challenge, but if they help, they will stay - so my feet and ankles don’t look like an elephant.
Add to this currently, my new osteo surgeon is keeping a close eye on my R hip ball joint for AVN (Avascular Necrosis) disease progression. We are currently doing an MRI once per month to decide on how urgent we should progress with treatment and/or surgery (if needed).
Our current take on the gap of bone death in that joint (due to steroids) is a ‘watch n wait’ approach. If the disease looks like it is fast & progressive - we go to what’s called ‘decompression’ of that hip ball joint.
Under a general (Thank God), a small hole is drilled into that hip ball to allow blood flow into the existing cavity. The extra blood may kick start the regrowth of bone to the ball joint, to avoid a R hip replacement and eventually a total hip replacement.
Most people with AVN of the hip get disease in both hip ball’s and find it in an advanced state, due to pain and difficulties with walking. However, we found mine, quite literally by mistake, via a neurologist convened check-up MRI of the S1 nerve roots. Similar location.
Although, my new surgeon did concur with me, there are no accidents and ‘it was meant to be’ that we found that AVN so early in the piece - when we weren’t expecting to find it. An interesting statement coming from a doctor.
I know that God had a hand in that, as I feel He inspired me to push for an MRI, when my neurologist didn’t see the point. I say, if you have extra nerve pain (which I’ve had @ night), then an MRI is warranted ‘just in case’. It was the right thing to do.
Your probably saying to yourself ‘Oh my G, Jodie - how on earth are you coping with all of this crappy-crap’?
To be honest - it’s all one day @ at time for me. There is no way I can control these issues, I just have to get on with life and live as full as I can. I think with all of this movement - it’s time for a new blog.
Now to have some lunch and onto the NDIS (National Disability Insurance Service) office to submit applications for support for three of us: Julia, Anna and myself. I thank God we live in a place that provides all of these incredible health and disability supports, free of charge.
Regardless of how difficult my circumstances have been over the years I can only be positive and truly thankful for the supports we get - I have chosen to see everything as an opportunity to change lives and inspire people. We all have our own challenges, mine just happen to be slightly more complicated.
You’ll hear very few complaints with my existing care at my hospital. I thank God once again & again & again.
Photo below of box containing my new ‘chap’ style gorgeous full-Leg stockings!! Paris fashion parade, here I come!!
Thank you for reading,
Much Love,
Jodie & The Guerrero Family xx