Where do I begin?
It seems as if I’ve been riding on a roller coaster of emotions and physical torment over the past few weeks since Christmas 2016.
I guess the best way for me to explain it all would begin with:
“Once upon a time, there was a skin rash..”
Skin : Graft-versus-host-disease (GVHD)
So the suspicious rashes on my body aggravated over the festive season. The rashes were angry red, extremely itchy and caused massive swelling all over my upper and lower limbs. It was impossible to get any sleep at night and I found myself feeling physically drained during the day.
On top of that, my latest visit to the doctor’s revealed that the cytomegalovirus (CMV) in my blood had returned despite the treatment (Megalotect) I was receiving three times a week. Hence, we decided that there was no other option but to be admitted to hospital (again) for stronger CMV treatment and to determine the cause of the skin rash.
A skin biopsy was conducted and confirmed the presence of GVHD in the skin. In other words, my dad’s immune cells (from the transplant) is struggling to make friends with my cells and has launched an attack on my body via the skin. While it is a common side effect seen post-allogenic stem cell transplant, we suspect it may have been the novel treatment (briefly mentioned in my last post), namely the CD45RA technology trialled to combat my ever-returning CMV. As you can expect, we will not be revisiting that option in the near future.
Eye : CMV retinitis
Moving on to the issue of my left eye, a sample was finally taken to ascertain the cause of the black spot in my eye. As it turns out (after a month of uncertainty and fear of having my eye bleed out), it is indeed CMV retinitis. Simply put, my very clingy viral friend has spread from my blood right into my left eye.
My Look Of The Day
As I write this, I am struggling between reality and positivity. The positive me says: Nothing is impossible with God. Miracles do happen. It will happen to you. You will wake up with clear vision again on one very fine day. But the current reality (according to the eye specialist) presents me with the cold, hard truth: There is permanent damage and scarring as the virus has spread extensively into my eye. There will always be a dark spot in my left eye and it is irreversible. I don’t think I’ve cried this loud at an eye clinic before. Actually, I don’t think I’ve cried this loudly in public ever.
Gut : Graft-versus-host-disease
A few days into my battle with GVHD of the skin, I started to develop abdominal discomfort and frequent, uncontrollable diarrhoea. The GVHD has spread to my gastrointestinal system, and I am now a frequent flyer to the Whiz Palace (bathroom) and cannot keep any food down. If anyone is looking for me, you can find me at Gate Flushing-All-The-Time at 1am, 1.15am, 1.30am, 2am, 2.30am…
Treatment
The doctors have me on a concoction of drugs: steroids, immunosuppressants, antihisitamines, antivirals, antibiotics, electrolytes, antidiarrhoeals, antiemetics and a specialised drug (ruxolitinib) to target the CMV and the GVHD of the skin and gut. To make up for the nutrition and calories lost through the diarrhoea, I am also hooked to Total Parenteral Nutrition (TPN) for 20 hours a day. Yes, I have come to a point where I have to have food forced into my bloodstream!
TPN: My breakfast, lunch and dinner
My eye is being injected with an antiviral, ganciclovir twice weekly on top of the systemic antiviral I receive twice a day. However, based on my body’s (lack of) response to the steroids for the GVHD, we’ve had to explore the option of adding a more intensive therapy to my regimen. That being extracorporeal photopheresis (ECP), which involves the collection of my blood through a very fancy (and expensive) machine and exposing it to ultraviolet (UV) irradiation in attempt to quiet down the GVHD. It will take at least a few weeks or months to see positive results from this therapy but we are hopeful that this will keep the GVHD at bay.
Sitting through my first dose of ECP
For the pure purpose of this therapy, I have a new central line inserted in my neck.
My new pals: Bob and Francine
…
Am I allowed to ask questions? Because I have countless at the moment.
Am I allowed to be afraid? I fear there will be no end to the suffering and complications of this disease.
Am I allowed to complain? Because I worry that my constant cries of pain to Darren and my mother will chase them further away from me.
…
Dear God, please help (pretty please). In Jesus’ Name.
If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/
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