Tuesday, December 31, 2013
Not many people here!
Very high tech hospital. QR codes on patient wrist band and very cool patient-in-surgery track in system. My husband can look at a large screen in waiting room and know by the color where I am.
I made two word bubbles two years ago. The first one focused on the difficulties of life with Cushing's. This one focuses on new life once Cushing's is gone. Today, just in time for my BLA, I post this. It truly makes me smile knowing that these words mean so much to me as a sick person. With this surgery, I finally get my chance to get it all back and find my new places of joy. I can't wait to get back to traveling, running errands, visiting with my friends, walking around just to see what we could see. ROLLERBLADING! I really miss rollerblading. One day soon, I will be able to stand up on those inline skates and blade. I am grateful for all the opportunities for growth that lie before me.
Sunday, December 29, 2013
There has been a lot of activity in the past two months. In November, I tested again and got the highest and most conclusive tests results confirming Cushing's once again. My Cushing's specialist cleared me for surgery. Surgeon set a surgery date of 12/17/13 and sent me to staff endocrinologists to confirm. First endocrinologist, a diabetes specialist, reviewed my case, said no, and blocked my surgery. After imploring the surgeon to help me, he scheduled an appointment with another endocrinologist. She was fascinated but perplexed by my case. I'm a medical curiosity! She invited another doctor in. I debated two endocrinologists at the same time for two hours. We spread all my photos, charts, lab results, MRI studies, and clinic notes across the table. They were misinformed on many aspects of the medical literature for Cyclical Cushing's but wouldn't listen to me. "Bilateral adrenalectomy is not reversible! You will be on medication the rest of your life! You will be miserable!" They blocked my surgery even though I had a doctor -- a NIH-trained physician who specializes in Cushing's and sees 1000 Cushing's patients in his practice -- who referred me to surgery. My surgery on December 17 was cancelled.
I left the hospital, dejected, uncertain, and suicidal. I know I am dying inside this broken body. My family circled the wagons and protected me. My mom flew in from out of state to help care for me, my husband, and daughter. She spent Christmas away from my father and family for the first time ever just to be with us. I continued to test per the deal I struck with the endocrinologists but I quickly tapped out. Three 24-UFCs with 17-ohcs, five midnight saliva cortisol tests, plus a low dose dexamethasone test really did me in. Test results showed even more high tests that point to hypercortisolemia: two high urine cortisols in 17-ohcs and two high MN cortisol salivas (2x and 3x upper limit of normal). I suppressed on dex test, as many cyclical Cushing'a patients do. My surgeon agreed to do the surgery again.
When I see the photos, I feel both sadness and hope. Sadness because of all the time I have lost to be my best self. Hopeful now that I can say goodbye to her and start a new life. Those two Melissas are gone. I will never be those people again. Hopeful because the new Melissa will be the MELISSA REMIX - the best combination of us all.
Tuesday, December 17, 2013
Society of American Gastrointestinal and Endoscopic Surgeons
Sunday, December 8, 2013
I can truly appreciate this video of a doctor explaining how a patient with hypothyroid symptoms show normal lab results, stump doctors, and get passed around but never treated. This has happened to me! I, too, have inflammation, and everyone including the PCP, chiropractor, acupuncturist, endocrinologist, rheumatologist, and psychiatrist have all taken note of my edema, or swelling. My massage therapist ALWAYS says by body is inflamed.
So, this doctor seems to understand the runaround that patients get, explains why we get the runaround, and offers advice about how to solve the inflammation "problem." He has a series of YouTube videos. I'll make my way through them eventually. - Melissa
Hidden Cause #20 Why You STILL Have Low Thyroid Symptoms - Inflammation Blocks T3 Receptor
Friday, December 6, 2013
Thursday, December 5, 2013
Preoperative Normalization of Cortisol Levels in Cushing's Disease After Medical Treatment: Consequences for Somatostatin and Dopamine Receptor Subtype Expression and In Vitro Response to Somatostatin Analogs and Dopamine Agonists
Print this flyer and give to your EMS team
CARES Foundation is another non-profit organization that is working to educate EMS professionals while getting Solu-Cortef on every ambulance. Their members face congenital adrenal hyperplasia and need the hydrocortisone dose via Solu-Cortef, too. They keep track of legislative status by state and advocates for us to make the change happen in our town and state.
We have a long way to go before these states are all green. So, let's all get started and help our friends. -M
"This presentation is intended for EMTs of all certification levels. We recommend that you review the slides from start to finish, however hyperlinks are provided in the table of contents for fast reference. Certain slides have additional information in the ‘notes’ section. This presentation was created by MA EMS for Children using materials and intellectual content provided by sources and individuals cited in the “Resources” section. "
& Trauma System gets it right.
Wednesday, December 4, 2013
|Sarah Thomas, 30, died six hours after EMS refused|
to take her to the hospital oradminister her the life-saving Solu-Cortef injection.
I send my most sincere condolences to Sarah's friends and family.
I am so rattled. This is unjust. It's so avoidable!
A simple injection of Solu-Cortef could have saved Sarah. It costs less than $10.
Taking Sarah to the hospital could have saved her.
Something must be done to stop the medical profession's ignorance about adrenal insufficiency and cavalier know-it-all attitude.
We must be able to count on someone to help us. How can we rest easy each day, wondering who will listen, who will believe us?
You will save others as you work to save yourself. - Melissa
Incompetent paramedics told dying woman: ' You just have a tummy bug'
Woman would have survived if she was taken to hospital and given a simple injection
I only have two words: NO SHIT (Blogger emphasis).
You know how I feel like that Europe is publishing so much research about Cushing's and adrenal insufficiency. Here's an article posted in September 2013.
Monday, December 2, 2013
Friday, November 29, 2013
- The medical literature indicates that 70% of Cushing's cases are due to a pituitary tumor;
- Nodules rarely appear on the patient's CT scans of the adrenals that would suggest an adrenal source of Cushing's (syndrome);
- These patients can have high ACTH (indicating pituitary source) or normal ACTH, so the likely surgical target is the pituitary;
- We patients seek a cure from this physical, emotional, and mental H- E- double hockey sticks, and we follow our doctors' advice;
- It's all we know about Cushing's at this time in history.
Thursday, November 28, 2013
Disputes between organizations on whether prescriptions, test results or proper forms were transmitted or not. Communication breakdowns. A Kafka-esque nightmare of constantly needing another approval. It can take weeks to be notified of a rejection.
I spend an average of 10 hours a month nudging, charming, name-dropping, fulfilling requirements and at times getting angry to try to persuade a chain of people to let me get the neurochemicals that I need at whatever the price. I usually spend between $100 and $1,000 per month on these chemicals, depending on what health insurance I have had at the time. On occasion it has run $5,000 per month. Sometimes health insurance has covered all the cost except a standard co-pay, sometimes very little.
Patients need more control in this process. Any number of people in the chain can keep us from our drugs — the effect is multiplied for me by the dozen meds that I take. The more expensive ones always seem harder to get and involve more steps. Thus more things that can and do go wrong in the perfect chain of dozens of people who need to move my case along for me to get my meds.