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Teresa's Story THIS PAGE IS NO LONGER BEING USED. Please visit my new webpage at www.caringbridge.org/visit/teresaseely
Journal
Sunday, August 1, 2010 7:15 PM CDT Hi All,
When last I left off, I was bragging about finishing my Half-Marathon. I am still quite proud of that. This time, however it is once again going to be about my health.
My GVHD (graft vs host disease) has gotten worse, much worse.
I am now considered to have chronic GVHD whereas before it was acute GVHD. There is a checklist in my care manual for chronic GVHD symptoms:
SKIN: rash, discoloration, tightness, texture changes
HAIR: thinning
NAILS: texture changes, brittleness, ridges
EYES: dryness, grittiness, irritation, blurring
MOUTH: dryness, pain, sensitivity to foods or toothpaste
VAGINA: dryness, irritation, tightening
DIGESTIVE SYSTEM: nausea, vomiting, diarrhea, loss of appetite, unexplained weight loss
LUNGS: chronic cough, wheezing, shortness of breath
LIVER: jaundice and elevated liver tests
JOINTS: unable to fully extend fingers, wrists, elbows, ankles or knees
ENERGY LEVEL: unusual fatigue
TEMPERATURE: chronic low-grade fever
Of this list I am dealing with skin, hair, eyes, mouth, vagina, digestive system, lungs and energy level issues.
I have an appointment with the folks in Seattle August 23 - 26 and hope to come home with some medicines that can help me get on the road to recovery once again.
The encouraging statement in the book is that although I will have to be back on immunosuppressant medication, GVHD will eventually end as my new immune system becomes better acquainted with its new environment.
The other issue is that my beloved oncologist of 10+ years
has moved to Florida. I am very happy for him but very sad for me. I am seeing a new oncologist that he recommended, but it is hard to say goodbye to a solid working 10 year relationship and begin to build a doctor/patient relationship with someone new.
He is a very nice man, but he seems terribly overwhelmed by my set of circumstances and has fished me out to several specialists who have each put a "band-aid" on their specialty's issue. The band-aids have helped some, but I am looking forward to getting a handle on the whole thing.
So, dear friends and family, please pray above all for my sanity and that the folks in Seattle can get me back on the right track.
Love to you all,
Teresa
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