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Monthly Archives: April 2012
Internal Bleeding (Dieulafoy Lesions) – 29 April 2012
So, this wonderful internal bleeding issue in my GI Tract I just over came is called Dieulafoy’s Lesion (fingers crossed that it is over), is one of those obscure issues (none of the BMT docs had ever heard of it), … Continue reading →
Posted in Healing Process, Possibility of dying, Post-Transplant Issues
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Tagged Acute GVHD, anemia, black stool, bleeding to death, blood transfusion, chronic GVHD, colonoscopy, diabetes, Dieulafoy Lesion, endoscopy, epinephrine, gastrointestinal, GI Tract Angio Scan, GI Tract isues, haemoclipping, immunoglobulin, internal bleeding, intestinal bleeding, mucosal defect, non-ulcerated arterial lesion, NPO, platelet transfusion, possibility of dying, Push Enteroscopy, rare condition, sigmoidscopy, total parental nutrition, TPN
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2 Comments
My Daily Routine – 21 April 2012
Being bed-ridden makes me a sitting duck. I seem to have very little control over how my time is allotted throughout the day. I think people assume I just sit in bed and have nothing to do. Not so much! … Continue reading →
Posted in Acute GVHD, Bad reactions to Meds, Chronic GVHD, Healing Process, Possibility of dying, Post-Transplant Issues, Relapse issues, Side effects of long term steroids
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Tagged Acute GVHD, bad-pans, basic needs, being told you will die, bilirubin, blood work, care-givers, chronic GVHD, cll, dry eyes GVHD, dry mout GVHD, eating, emotional turmoil, energy sucking, fatigue, friends, GI Tract issues, going home, hallucinations, healing, human error, interruptions, leukemia, life threatening, life threatening infections, liver, long-term steroids effects, Lung Infection, lymphoma, Marie-Chantal Marchand, mariechantalmarchand, meals, meds, mobility issues, napping, not a vacation, not lounging around, occupational therapy, on-going Chronic GVHD, physical challenges, physio therapy, pills, relying on nurses, relying on people for basic needs, resting, Richter's Transformation, self-conscious, sleep deprivation, sleepless nights, SLL, specialists, steroids, time, TP53 with 17p Deletion, visiting, visiting friends
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1 Comment
Standing Up High Tech – 18 April 2012
Steroid Myopathy (weakness and loss of body and muscle mass in the hips, thighs, legs, feet, shoulders and upper back, and to a lesser extent the arms as well) had me completely bed-bound since approximately April 7, 2012. Daily, I … Continue reading →
Posted in Healing Process, Post-Transplant Issues, Post-Transplant Updates, Relapse issues, Side effects of long term steroids, Tips & Tricks
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Tagged autonomy, bedpan, build muscles, build strength, don't give p, ego, exercising, find tips and tricks, independence, keep moral up, loss of body mass, loss of movemement, loss of muscle mass, occupational therapy, physiotherapy, shuffle, standing on own two feet, Steroid myopathy, use of arms, use of legs
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5 Comments
Severe Multiple-Organ ACUTE GVHD – Part 6 – LIVER GVHD
ACUTE LIVER GVHD Ok, here is the biggest, most serious, most life threatening issue for me. Now a ‘normal’ liver has a Bilirubin level of approximately 15. My levels have climbed as high as in the 140’s. This is very … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 5 – STEROID MYOPATHY
ACUTE STEROID MYOPATHY Mobility Issues & Fluid Retention In early March I began noticing that I was having difficulty getting out of lower chairs. I was beginning to lose balance and fell a few times going to the washroom, My … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 4 – LUNG INFECTION
LUNG INFECTION In order to be able to deal with all the various ACUTE GVHD issues since early February, many high dosage of steroids and meds were given. Unfortunately, lots of different steroids at high doses also means that I … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 3 – GI TRACT GVHD
Note: Explicit medical photos. I you are squeamish, then you have been warned. ACUTE GI TRACT GVHD Just a few days before I came into the Emergency, I began experiencing severe diarrhea which I concurred was probably due to the … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 2 – MOUTH GVHD
Note: Explicit medical photos. I you are squeamish, then you have been warned. ACUTE MOUTH GVHD The Mouth and Throat issues began gradually around mid-January 2012. The Dry Mouth and Throat Chronic GVHD which I had been able to adapt … Continue reading →
Severe Multiple-Organ ACUTE GVHD – Part 1 – SKIN GVHD
Note: Explicit medical photos. I you are squeamish, then you have been warned. Here is a description of ACUTE GVHD. For detailed information on each type, please see each individual postings. It would have been too long to include them … Continue reading →
Whom am I when that is all there is? – 11 April 2012
When you are bed-bound, nowhere to go, no one else to think about, whom are you really? When your ego is completely stripped away, your dignity is out the door, you need help with everything, what is left? I have … Continue reading →
Posted in Acute GVHD, Chronic GVHD, Healing Process, Possibility of dying, Post-Transplant Issues, Side effects of long term steroids, Tips & Tricks
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Tagged alone, answer phone when convenient for me, appreciative of all they do, be myself, bedpan, bedpan procedure very exhausting and time consuming, being alone, being human, being selfish, bladder infection, blood infection, brain stll works, catheter, Dalai Lama wisdom, Deepak Chopra too many tweets, diapers, doing things for myself, dying, E-Coli, existential questions, family dying, friends passing away, Gut GVHD, healing, infection from within, Infections, IV lines, lack of control, lack of patience right now, laughter, letting go, Liver failure, love my friends, Lung Infection, mucous infection, no dignity, no ego, no mobility, no patience for trivial issues, PICC line, possibly dying, rely on people for everything, someone else do everything for me, someone else move my body in bed, someone else move my limbs, stop being what people need me to be, stop pleasing people, stress free environment, stress free room, treating myself to what i need, treating myself to what i want, type with one hand, washing me, what does life mean for me, whom am i, wiping me
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10 Comments
