"Dr. Jonas, did you see this note yet?" I look. Someone died. A patient of mine. For 15 years. Gone. Complex disease. Complex life. Complex grief.
Next patient. Sinus pressure, sore throat, ear pain.
I read the death note again. Sad. I see his face. Reflect on our last encounter.
He was thankful. He was prepared.
Next patient. Hospital follow-up. Review meds. Change one dose. Review the hospital labs. Note the intentions of the surgeon. Clarify preparations for the surgery and timing of follow-up.
Phone call with widow. I listen to the story. I respond to her feelings. We agree a few times.
I hang up. A wave of sadness comes over me. A tear starts. I stand to go to the next exam room. A staff member asks me a question. I have to clear my throat to answer. One tear. One choke. One wave. Until the next patient.
Look at his name. Ask another staff if they saw that he died. Reflect again. Part of doctoring. Intermittent grief. Loss. The human condition. Ends for one. Starts for another.
Next patient. Can't get enough breath. Medication, Ohio, COPD all fight the lungs. Stop one drug. Start another.
Home.
Now I can cry with them. For them.
Pray for them. And me.
The blog. Not the next patient.
Peace.
Tuesday, March 31, 2015
Sunday, March 15, 2015
Family Medicine: Following Patients with Ehlers Danlos Syndrome by K.M. Babbitt, MSIII and A.P Jonas, MD
Family Physicians follow a lot of patients with rare and unusual chronic disease states. Wright State University Boonshoft School of Medicine third year student Katherine (Casey) Marian Babbitt has worked with Dr. Jonas on a quality improvement project about one rare and challenging disease. This month we're looking closer at Ehlers Danlos Syndrome to develop a checklist for patient signs and symptoms that helps both patients and physicians. This will enable Family Physicians to better identify what problem areas and concerns each patient with EDS may have at each chronic disease management visit. It also reminds patients and physicians to remember multiple aspects of the EDS when managing acute problems.
We'll publish the fifth draft of the checklist to invite comments from patients and physicians to help us fine-tune the document before finalizing it and publishing it online.
What do you think of the current content? (not the format since the Word document didn't load perfectly) Please make comments, especially hypermobile persons and their families and family physicians. This is a complex disease and we are complex people, so we start with a complex form.
The patient would have one of these on their cell phone or computer or hard copy and note what symptoms and signs are "leading the way" in a negative sense. The physician would follow the form inputs from the patient via the patient portal of their EMR or hard copy and add/ subtract/prioritize care based on what seems to be happening. Etc.
We'll publish the fifth draft of the checklist to invite comments from patients and physicians to help us fine-tune the document before finalizing it and publishing it online.
What do you think of the current content? (not the format since the Word document didn't load perfectly) Please make comments, especially hypermobile persons and their families and family physicians. This is a complex disease and we are complex people, so we start with a complex form.
The patient would have one of these on their cell phone or computer or hard copy and note what symptoms and signs are "leading the way" in a negative sense. The physician would follow the form inputs from the patient via the patient portal of their EMR or hard copy and add/ subtract/prioritize care based on what seems to be happening. Etc.
Ehlers-Danlos
Signs and Symptom Checklist
Date ________________
Name
_____________________________________________
Neurological
system
New Old Stable Doctor Use
o o Y
N Obsessive
Compulsive Disorder o
o o Y
N Major
Depressive Disorder o
o o Y
N Social
Anxiety Disorder o
o o Y
N Body
Dysmorphic Disorder o
o o Y
N Chiari
I Malformation o
o o Y
N Syringomyelia o
o o Y
N Tethered
Cord Syndrome o
o o Y
N Migraines o
o o Y
N Syncope
Dizziness o
o o Y
N Paresthesia o
o o Y
N Dysautonomia o
o o Y
N Decreased
Vibrational sensation o
o o Y
N Other________________________ o
Musculoskeletal
System
New Old Stable Doctor Use
o o Y
N Joint
Instability o
o o Y
N Chronic
Muscle Pain o
o o Y
N Chronic
Muscle Fatigue o
o o Y
N Chronic
Muscle Weakness o
o o Y
N Dystonia o
o o Y
N Osteopenia/Osteoporosis o
o o Y
N Osteoarthritis o
o o Y
N Bunions o
o o Y
N Flat
Feet o
o o Y
N Scoliosis o
o o Y
N Kyphosis o
o o Y
N Early
Degenerative Disk Disease o
o o Y
N Herniated
Disks o
o o Y
N Other________________________ o
Cardiac
System
New Old Stable Doctor Use
o o Y
N Mitral
Valve Prolapse o
o o Y
N Tricuspid
Valve Prolapse o
o o Y
N Aortic
Root Dilation o
o o Y
N POTS
o o Y
N Other________________________ o
Optical
System
New Old Stable Doctor Use
o o Y
N Scleral
fragility o
o o Y
N Corneal
deformation o
o o Y
N Other________________________ o
Vascular
System
New Old Stable Doctor Use
o o Y
N Arteriole
rupture o
o o Y
N Abdominal
Aortic Aneurism o
o o Y
N Neurally
Mediated Hypotension o
o o Y
N Varicose
Veins o
o o Y
N Other________________________ o
Metabolic
System
New Old Stable Doctor Use
o o Y
N Early
Lipid Abnormalities o
o o Y
N Vitamin
C Deficiency? o
o o Y
N MTHFR? o
o o Y
N Drug
Sensitivity o
o o Y
N Other________________________ o
Gastrointestinal
System
New Old Stable Doctor Use
o o Y
N Irritable
Bowel Syndrome o
o o Y
N Constipation o
o o Y
N Gastritis o
o o Y
N Gastroesophageal
Reflux Disorder o
o o Y
N Delayed
Gastric Emptying o
o o Y
N Other________________________ o
Gynecological
System
New Old Stable Doctor Use
o o Y
N Premature
Rupture of Membranes o
o o Y
N Rapid
Labor and Delivery o
o o Y
N Uterine
Rupture o
o o Y
N Other________________________ o
Dermatological
System
New Old Stable Doctor Use
o o Y
N Hyperextensible
Skin o
o o Y
N Translucent
Skin o
o o Y
N Fragile
Skin o
o o Y
N Soft/Velvety
feel of skin o
o o Y
N Hemosiderin
Staining o
o o Y
N Stretch
Marks o
o o Y
N Atrophic
scarring o
o o Y
N Wound
dehiscence o
o o Y
N Prolonged
bleeding o
o o Y
N Easy
Bruising o
o o Y
N Other________________________ o
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