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Thursday, March 17, 2011

Troubles with neuropathy and steroids

Susan’s had a hard time the past several weeks. Her lower legs and feet are still swollen, red, and painful. It’s been hard for her to walk. She tires easily and is prone to more confusion. Rest helps, but the leg pain is always there. All this has been dogging her since January, though now we now know more about it. Her leg and foot pain have been diagnosed as peripheral neuropathy, which is kind of a catch-all name for damage to the peripheral nervous system. Neuropathy can take various forms, affecting a single nerve, a group of nerves, or the entire autonomic nerve system. Among other things, it can be caused by nerve trauma, infection, diabetes, and liver disease – Susan's had all of these at some level since her brain tumor was discovered. Unfortunately, with such a grab bag of causes, treatment is difficult and usually is symptom-based with pain management.
 
Since Susan's biometric body scans done by our chiropractor Dr Jim Augustine show a distressed liver, we’re trying several remedies to improve liver health. We prefer this approach since pain meds don’t fix the cause and will only add more toxins to her liver. To further relieve that burden, we’ve also consulted with her infectious disease MD and discontinued her long-term maintenance dose of anti-fungal Fluconazole. There’s risk that meningitis may return, so we’ll watch for it. We’re making further meds adjustments with Dr Jim to replace Prevacid with natural supplements for digestive support and hope her steroids won’t notice since there’s also risk of ulcers.
 
Speaking of steroids, we doubled Susan's dose of Prednisone last week after a spell of nausea, vomiting and weakness. This assumes 2.5mg daily was too low for her system and was causing the nausea. To remove any guess work, her neuro-oncologist Dr Nghiemphu recommended she see an endocrinologist to confirm she’s actually steroid dependent and find out how much the right dose is for her. We were eager to have a new specialist since it’s been a while since we met one. We’ll see Dr Choi next month or sooner if there’s an opening.
 
Susan getting IV fluids in Long Beach.
Meanwhile, Susan had a new set of labs done last Friday to follow up on her steroid-induced diabetes. We determined she’d gotten dehydrated, so she received almost two liters of IV fluids that perked her up by the weekend. Unfortunately, her lab tests show higher triglycerides, so we’ll need to be stricter on the low-carb diet. Friday’s labs also showed lower red blood count and hemoglobin, known as anemia. Her primary care doctor prescribed OTC iron supplements and suggested she may have a source of bleeding somewhere like an ulcer – but if her dysfunctional liver is causing the anemia, the chiropractor’s remedy will help. Maybe we’ll put the MD and chiropractor in a room together and let them sort it out. I’m thinking Nerf guns.
 
The good thing about the phase we’re in is that Susan's tumor has been stable. The hard thing is dealing with persistent symptoms that have been dragging her down with no clear-cut causes or treatments. It’s not that something worse would be preferable, but as traumatic as they’ve been, at least her past ER visits brought us more quickly to identify an issue and treat it. So right now we’re stepping through a tangle of chronic disease – and Susan can’t walk very well.
 
Even so, we’re constantly affirmed of God’s love and presence, and are always encouraged by his promises like “I will never leave you or forsake you” (Joshua 1:5) and “I am the Lord, who heals you” (Exodus 15:26). We know God’s nature. He is loving, good, powerful, and purposeful. David says of God in Psalm 145:13 “Your kingdom is an everlasting kingdom, and your dominion endures through all generations. The Lord is faithful to all his promises and loving toward all he has made.” Our lives are attended by this mystery – circumstances we neither want nor can be rid of, along with the presence of a loving God who wraps us in his care and assures us of his good plans. We’re always thankful to him. 

2 comments:

Anonymous said...

Mike,
It is so special to read your blogs. Thank you for keeping us posted on Susan and for allowing us to see just a glimpse of your amazing faith. May God continue to bless you and your family. I am praying for you all.
Love always,
Sunni

Anonymous said...

What a story of courage and faith.