December 1, 2011
Dear Doctor__ (a letter faxed to my primary Care Physician),
First, I want to wish you and your family a very happy holiday season. You have been a kind, invested partner in my health journey and I sincerely appreciate you. Next, I want to update you on my ongoing health situation. Since our last meeting I have continued to struggle with daily health issues that inhibit my quality of life. I remain unable to work. I now regularly see you for Primary Care (Q6ms), a Hematologist (Q2wks), a Hepatologist (Q6ms), a Psychiatrist (Qmo), a Therapist (Qwk), an AIP Specialist (PRN) and an Endocrinologist (Q12ms). I also participate in monthly SKYPE meetings as part of my participation in the Mount Sinai NYC long-term AIP clinical study. I follow a gluten free, dairy free diet (reality= 90% of time). I avoid all AIP triggers within my control. Regarding current treatment… I take Gabapentin 300mg TID, Phenergan as needed for nausea and agitation, Estrace QWK, Naproxen PRN for moderate pain, and weekly Dextrose infusions the day after Estrace . The Hematologist is collaborating with Mount Sinai regarding AIP Tx Mgmt… we are considering regular Hematin infusions… but are trying the dextrose first because I seem to have good improvement with dextrose alone (1 to 2 days of lasting benefit vs little to no lasting benefit with Hematin). Prior to Thanksgiving I went to the hospital’s Out-Pt Special Procedures Unit to have an Ultrasound Guided PICC Insertion… they tried 3 times and failed x3. I have been getting peripheral lines each Dextrose infusion at present. I have follow-up visit with the Hematologist tomorrow (12/02/2011), hopefully we will make a new plan.
The daily neuropathy pain in my limbs has significantly decreased with the Gabapentin. My mental health and cognitive ability continue to be a challenge. The Psychiatrist has been following me with monthly visits and I now see a good Therapist weekly.
With a “heavy heart” I went to the Social Security Office 11/23/2011 and officially applied for long-term disability.
I am scheduled to see you again in January 2012, but wanted to connect with you to let you know where I am in my health journey now.
Best Wishes & Blessings~
T. Suzanne Jaynes-Emmert
December 2, 2011
Dear Dr. ___ (a letter read to my hematologist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. We have partnered in my health journey for almost 4 years now. I respect you and trust you to take care of me when I am at my worst. Due to the neuro-corrosive nature of my illness, my intellectual stability has become unreliable. It is becoming increasingly difficult to manage my disease as independently as I use to. I am at a point where I must rely on others to help navigate my path. The problem is that I have a growing lack of confidence due to multiple human errors and a lack of both investment and thorough follow-through. My anxiety and stress level have been negatively impacted by seeking medical help. I feel scared and lack the confidence that I want to have in the medical profession.
Examples:
-Medical Providers that I am entrusting my emotions, my physical body and my very life to, cause me great anxiety due to a significant knowledge deficit related to the Pathophysiology of Acute Intermittent Porphyria… the Porphyria Drug Database is rarely referred to without my prompting and I fear receiving a drug that will cause me further problems… improper porphyrin tests are ordered and incorrectly gathered during acute attacks… I am not sure if staff are aware of the risk of respiratory paralysis when inpt… I don’t feel heard when I say something makes me feel worse after trying a new treatment… I try to provide educational resources (CEUs, brochures, scholarly articles) but I feel my attempts to educate fall on deaf ears.
-Plan of Tx discussed at office visit differs from executed medical follow up
-Ultrasound Guided PICC Placement Failed x3 with significant pain
-Lack of Care Planning Re: PICC teaching/management after 4 nurse:pt discussions
-Direct untruth Re: Home Health Referral to Amedysis… not done
Positive Action Steps I have taken:
-Set up Case Management through my Health Insurance
-Started a medical coordination log
-Engaged a new Therapist with AIP experience (2 patients)
-Monthly Psychiatry Appointments
-Write out organized thoughts for medical appointments prior to visit
Idea for Treatment Plan:
-Discuss potential impact of 1 or 2 dextrose infusions qwk… Diabetes risks… other risks… monitoring protocol… what if Diabetes develops? How to manage both???
-Arrange Port placement in January (consider liver biopsy?)
-Request a 23hour obv to receive Hematin and dextrose after placement… to follow up anxiety and stress of procedure
-Continue weekly dextrose the day after Estrace at infusion center with a peripheral line until port in place
-After port… if advisable 2x/wk dextrose… infusion center or HOME infusions???
-After port… Hematin as advised
-??Wt management thoughts to minimize diabetic risk? Current GF/Dairy-free, ~1800 cal/day, exercise QD as tol, conscious of glycemic index, thyroid goitergens and liver: protein relationship
Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.
Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient
December 2, 2011
Dear Dr. ___ (letter read to Psychiatrist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. I am glad that we have partnered in my health journey and I appreciate your investment in assisting me in the management of a rare medical situation.
The gabapentin continues to help ease my everyday neuro-sensory hypersensitivities and peripheral neuropathies.
I have found the Klonopin is something I cannot take… my Porphyria is too sensitive to small triggers at present and I would feel more comfortable with a PRN antianxiety medication that is safe for AIP people.
I have been using the Phenergan for nausea, agitation and restlessness. How do you feel about a low dose pill form that I could use more regularly for the agitation and restlessness?
Action Steps I have taken:
-Set up Case Management through Health Insurance
-Started a medical coordination log
-Applied for Social Security Disability
-Engaged a new Therapist with AIP experience x2
-Write out organized thoughts for medical appointments prior to visit
Tentative Treatment Plan:
-Change PRN Anxiety Med to AIP Safe
-?Phenergan pills for agitation/restlessness
-Therapist Qwk
Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.
Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient
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