Tuesday, December 31, 2013
Update
2:21 pm pst - surgeon just visited. He and I are ready to go. He will grab a sandwich. I told him "No turkey!" I asked him to give me a local so I could live blog :D
Teaching Moments
Hi Olga!!
BLA on the way
Not many people here!
Very high tech hospital. QR codes on patient wrist band and very cool patient-in-surgery tracking system. My husband can look at a large screen in waiting room and know by the color where I am.
New Best Friend
I know I will make it through with my new best friend / favorite three words for this week:
~ patient-controlled dilaudid ~
~ patient-controlled dilaudid ~
Let's Get This Party Started
My surgery is scheduled for 1:00 pm on 12/31/2013. Call time is 10:30 am. I am the third surgery of the day. I am tired today after all the preparations and my pre-op appointment. I am happy not to be waking up so early but wishing I could go just to get on with this! I spent last night playing with my daughter and marveling in her. I love her, as she says, "infinity infinity one hundred thousand million.'
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.
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.
I want to share one of my favorite songs: Shania's Today is Your Day. I hope you like it as much as I do.
Happy New Year. It's gonna be the best one yet.
Melissa
Sunday, December 29, 2013
Goodbye Cushing's: Finally, I get my BLA
I am finally approved for my BLA in Los Angeles, CA for December 31, 2013. It's our wedding anniversary, so my husband said he would take me out to Beverly Hills for dinner and the place should be cool because we hear celebrities go there.
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.
I wanted to share this with all y'all here. I found blogging to be something that helps me make sense of what is happening to me, a place where I can PUT it and release it as I try to live every hour of my life. I am so pleased to hear that people relate to my experiences and they are rooting for me. I am rooting for you, too.
I just got the final word from the surgeon on Saturday at noon that he will do my BLA on Tuesday.
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.
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.
I am comfortable in my decision and ready to move forward. Today, we will rally and get the house ready for my absence, and I'll started up a "feel good box" of things to keep me occupied during my time in the hospital.
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.
I wanted to share this with all y'all here. I found blogging to be something that helps me make sense of what is happening to me, a place where I can PUT it and release it as I try to live every hour of my life. I am so pleased to hear that people relate to my experiences and they are rooting for me. I am rooting for you, too.
Well, Happy New Years Cushing's family!
May us all blossom in our new healthy state in 2014.
Melissa
Tuesday, December 17, 2013
Patient Information for Laparoscopic Adrenal Gland Removal (Adrenalectomy) from SAGES
I thought this was a good read. It includes things to do pre-op that I haven't seen written down. Most of these, though, don't always discuss the removal of both adrenal glands, which is really a different matter in terms of replacing hormones, recovery time, and after care.
Society of American Gastrointestinal and Endoscopic Surgeons
http://www.sages.org/publications/patient-information/patient-information-for-laparoscopic-adrenal-gland-removal-adrenalectomy-from-sages/
Society of American Gastrointestinal and Endoscopic Surgeons
http://www.sages.org/publications/patient-information/patient-information-for-laparoscopic-adrenal-gland-removal-adrenalectomy-from-sages/
Sunday, December 8, 2013
Inflammation: Why You STILL Have Low Thyroid Symptoms
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
http://youtu.be/ljRWZ9gCxws
Friday, December 6, 2013
Life Lines: My Cushie Friends
In life's game of Who Wants to be a Healthy Patient, my phone-a-friend lifeline will be a Cushie friend over any endocrinologist, any day of the week and twice on Sunday.
Thursday, December 5, 2013
Cushing's, Cortisol and Receptors
More research from the Dutch and Germans. I have no idea what this means! My Cushie brain can not piece together this new information.
I have never heard the term "normocortisolism."
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
http://m.jcem.endojournals.org/content/98/12/E1880.abstract
Support your Loved One with Chronic Pain
Pete Beisner knows a lot about supporting a partner in chronic pain. Here, he shares insights on how to take care of the person you love. He authored this poignant and impressive read, entitled 23 Tips For Men on Supporting a Partner with Chronic Pain.
As a person who suffers from chronic pain, I am happy to know that a way to help has been so clearly defined. Some days, the pain is so bad, I just don't know how I can do it or what I need to make it go away. This list offers a sort of menu of options, things that someone can do without me having to tell them first.
Thank you, Pete and NAIDW for this wonderful article. ~ Melissa
Solu-Cortef on the Ambulances
Print this flyer and give to your EMS team
Non-Green States => Preventable Deaths
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
Hey EMS Professionals: Study Up
Kudos to the Massachusetts Department of Public Health for developing and sharing this presentation.
"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. "
"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. "
Southern Nevada Health District's Office of Emergency Medical Services
& Trauma System gets it right.
& Trauma System gets it right.
Share this with your local EMS team.
Wednesday, December 4, 2013
RIP Sarah: Another Senseless Cushie Death
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| 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?
Please support the group, Adrenal Insufficiency United, whose goals are to educate EMS personnel and ensure that Solu-Cortef is carried on every ambulance in the US. Purchase one of their emergency kits and give a CD to the fire stations in your area.
You will save others as you work to save yourself. - Melissa
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You will save others as you work to save yourself. - Melissa
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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
Two paramedics have been struck off for blundering over the tragic death of a dental nurse after telling her: "You just have a tummy bug."
Sarah Thomas, 30, died at home because her symptoms were not taken seriously by the two "incompetent" ambulancemen who refused to take her to hospital.
Paramedic David Glover told her she just had the stomach bug – even though she was barely conscious and struggling to breathe.
Ms Thomas would have survived if she was taken to hospital and given a simple injection. But she died six hours later.
A disciplinary hearing was told Glover and colleague Michael Davies then tried to cover up their mistake by fabricating her clinical record.
The pair were banned from working as paramedics by a disciplinary panel of the Health and Care Professions Council.
Panel chair Ian Crookall said: "The public would be appalled at the lack of competence.
"The facts of the case would undermine public confidence in the profession in the eyes of any member of the public who was aware of the circumstances.
"When there is a case of proven dishonesty it is necessary to uphold regulatory standards by demonstrating that such behaviour is not acceptable."
Sarah was visited at her home in Port Talbot, South Wales, by the two paramedics following a 999 call.
A Health and Care Professions Council hearing was told how Glover failed check her vital signs including pulse, breathing and blood oxygenation.
Ms Thomas had diabetes and her pituitary gland had been removed after surgery for a brain tumour. (Blogger note: Sarah had Cushing's and secondary adrenal insufficiency after pituitary surgery).
But the hearing in Cardiff was told that Glover failed to ask suitable questions about her medical history.
He told her: "You just have a stomach bug. You are better off here Sarah, this is the best place for you".
But Ms Thomas died just six hours later of adrenal insufficiency – when her body stopped producing the necessary steroid hormones. (Blogger emphasis).
Glover and Davies, who were working for the Welsh Ambulance Service NHS Trust, then "colluded to fabricate a patient record".
The pair added information they got later from another paramedic in an attempt to cover up their failures.
Mr Crookall added: "The panel was of the view that the established failure to conduct a proper assessment.
"The subsequent dishonest fabrication and collusion are very serious, representing a disregard for fundamental and core duties.
"It had the potential of causing very significant degree of harm – including death."
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I only have two words: NO SHIT (Blogger emphasis).
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I only have two words: NO SHIT (Blogger emphasis).
Management of Adrenal Insufficiency
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.
THERAPY OF ENDOCRINE DISEASE: Perspectives on the management of adrenal insufficiency: clinical insights from across Europe
Monday, December 2, 2013
READY FOR BLA: keychain case
My bilateral adrenalectomy is scheduled for Tuesday, December 17th. These pesky adrenals come out in two weeks. I look forward to the day.
I have a list of things to do a mile long that I plan to share with you. I'll feel better going into surgery knowing I have taken care of some details.
Today, I share this nifty keychain with pill container that I found for $1.99. I bought it today, and there is plenty of room to store hydrocortisone. The description says the case can hold six pills, but I found it to hold much more. I easily loaded 15 pills of 20 mg Cortef and 15 pills of 5 mg Cortef in the container. That's nearly 400 mg of hydrocortisone with me at all times to cover me while I'm on the go. It is also BPA free and food grade plastic. I also like that the sliding button, shown in blue, keeps the container closed to prevent accidently opening.
One thing off the list. I'm off to a running start. ~M
Friday, November 29, 2013
cushingsmoxie sent you a video: "CushieSteph Intro"
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cushingsmoxie sent you a video: "Cushing's Disease & Acromegaly (brief story of my journey)"
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cushingsmoxie sent you a video: "Renée - Cushing's After a Failed Surgery"
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cushingsmoxie sent you a video: "Melissa - Cushing's Symptoms & Diagnosis"
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cushingsmoxie sent you a video: "Phillip - Living with Cushing's Syndrome"
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What We Know Just Changed: "Adrenal glands produce ACTH"
NOTE: I wrote this blog entry after taking my sleeping pill for the night. I'll reread this in a few days and catch any errors. Right now, my eyes are blurry and my hands don't want to touch the correct keys. :)
What we know about Cushing's has just changed. I mean, for me, it has changed in a profound way, just in the reading of one press release online tonight.
I have seen many Cushing's patients go through one, two, or more pituitary surgeries once hypercortisolemia is detected. Once doctors sheepishly diagnose patients with Cushing's, they shepherd us into pituitary surgery. WHY?
- 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.
Despite all that, unfortunately, patients are often uncured by pituitary surgeries and choose the last resort treatment of bilateral adrenalectomy (BLA) to stop high cortisol at its source and gamble for an improved quality of life. My minds often drifts back to an informal online survey of Cushing's patients who underwent BLA as treatment indicate that their adrenal glands were "plump" and "dense when removed." Surgeons note this upon removing the adrenal glands and often include this information into the surgical reports, and pathology reports show that Cushie adrenals often weigh much more than the normal four to six grams each with fat dessicated. It is not uncommon for a patient's adrenal glands to weigh 10 and 15 grams each. How? Why? For those I've spoke with online, we don't know the answer. I personally haven't seen anything written about the size of adrenal glands in relation to high cortisol and Cushing's. These dense behemoth little trouble makers trick us, because they don't appear larger on the CT scans. Radiologist love to say "adrenal glands normal in size" or they run them together with no special mention, such as "kidneys, adrenals, liver, and pancreas appear normal in size". The surgeon sees the size of the adrenals first, kinda like finding out the gender and weight of new babies, except our surgeon removes adrenal twins, both weighing more than their mamas and papas could safely carry, so they had to come out. The size of the babies are often a surprise to everyone!
Oh, yeah. Back to the press release that says "Adrenal glands produce ACTH."
Today after our Thanksgiving dinner and celebration, I happily turned to my new iPhone 5s, another thing for which I am extremely grateful (as well as communicating with people from my bed while resting). I stopped in my tracks when I read this press release from the New England Journal of Medicine regarding a genetic link to bilateral adrenal Cushing's. I couldn't believe my eyes.
A test? A genetic link? So this would tell if we patients indeed had Cushing's, which endocrinologists are always insisting we don't really have, and they can screen our family members to get them the care they need more urgently? WOW. This is good.
It was the first time I had ever seen the words "bilateral adrenal Cushing's." I have seen Cushing's disease, typically referring to a pituitary source of high cortisol, and Cushing's syndrome, which refers to an adrenal source. What is this "bilateral adrenal Cushing's", asks the person about to undergo a bilateral adrenalectomy?
WHOA. Does this new article due out on Black Friday 2013 really say what I think it says in the press release?
"The adrenal glands from the same type of patients with two large adrenal glands can produce ACTH, which is normally produced by the pituitary gland." [blogger emphasis]
Without reading the whole article, this sure sounds to me like these researchers in France might have determined that the adrenal glands produce ACTH, not just cortisol. I wonder if the production mechanism is similar to an ectopic location such as the lungs or ovary? I can't tell what it means from the press release, which I have pasted below. We may have to wait until Friday, after Thanksgiving, to see if the NEJM folks are really working or shopping.
POST THAT ARTICLE! This way more important than any deal on a waffle iron, a Monsters University DVD, or boots with fuzzy crap on the outside.
We, the Cushing's community, are waiting for the full article!!
*** PRESS RELEASE BELOW ***
Are you carrying adrenal Cushing's syndrome without knowing it?
Genetic research that will be published tomorrow in the New England Journal of Medicine suggests to
Dr. André Lacroix, professor at the University of Montreal, that clinicians' understanding and treatment of a form of Cushing's syndrome affecting both adrenal glands will be fundamentally changed, and that moreover, it might be appropriate to begin screening for the genetic mutations that cause this form of the disease.
"Screening family members of bilateral adrenal Cushing's syndrome patients with genetic mutations may identify affected silent carriers," Lacroix said in an editorial in the Journal. "The development of drugs that interrupt the defective genetic chemical link that causes the syndrome could, if confirmed to be effective in people, provide individualized specific therapies for hypercortisolism, eliminate the current practice of removing both adrenal glands, and possibly prevent disease progression in genetically affected family members."
Adrenal glands sit above the kidneys are mainly responsible for releasing cortisol, a stress hormone. Hypercortiolism means a high level of the adrenal hormone cortisol, which causes many symptoms including weight gain, high blood pressure, diabetes, osteoporosis, concentration deficit and increased cardiovascular deaths.
Cushing's syndrome can be caused by corticosteroid use (such as for asthma or arthritis), a tumor on the adrenal glands, or a pituitary gland that releases too much ACTH. The pituitary gland sits under the brain and releases various hormones that regulate our bodies' mechanisms.
Jérôme Bertherat is a researcher at Cochin Hospital in Paris. In the study he published today, he showed that 55% of Cushing's Syndrome patients with bilaterally very enlarged adrenal glands have mutations in a gene that predisposes to the development of adrenal tumours. This means that bilateral adrenal Cushing's is much more hereditary than previously thought. The new knowledge will also enable clinicians to undertake genetic screening. Hervé Lefebvre is a researcher at the University Hospital in Rouen, France. His research shows that the adrenal glands from the same type of patients with two large adrenal glands can produce ACTH, which is normally produced by the pituitary gland. Hormone receptors are the chemical link that cause a cell to behave differently when a hormone is present. Several misplaced hormone receptors cause the ACTH to be produced in the enlarged benign adrenal tissue. Knowing this means that researchers might be able to develop drugs that interrupt the receptors for these hormones and possibly even prevent the benign tissue from developing in the first place.
More information:
André Lacroix, M.D., Heredity and Cortisol Regulation in Bilateral Macronodular Adrenal Hyperplasia, New England Journal of Medicine 369;22, November 28, 2013
Estelle Louiset, Ph.D., Céline Duparc, Ph.D., Jacques Young, M.D., Ph.D., Sylvie Renouf, Ph.D., Milène Tetsi Nomigni, M.Sc., Isabelle Boutelet, Ph.D., Rossella Libé, M.D., Zakariae Bram, M.Sc., Lionel Groussin, M.D., Ph.D., Philippe Caron, M.D., Antoine Tabarin, M.D., Ph.D., Fabienne Grunenberger, M.D., SophieChristin-Maitre, M.D., Ph.D., Xavier Bertagna, M.D., Ph.D., Jean-Marc Kuhn, M.D., Youssef Anouar, Ph.D., Jérôme Bertherat, M.D., Ph.D., and Hervé Lefebvre, M.D., Ph.D., Intraadrenal Corticotropin in Bilateral Macronodular Adrenal Hyperplasia, New England Journal of Medicine 369;22, November 28, 2013.
Guillaume Assié, M.D., Ph.D., Rossella Libé, M.D., Stéphanie Espiard, M.D., Marthe Rizk-Rabin, Ph.D., Anne Guimier, M.D., Windy Luscap, M.Sc., Olivia Barreau, M.D., Lucile Lefèvre, M.Sc., Mathilde Sibony, M.D., Laurence Guignat, M.D., Stéphanie Rodriguez, M.Sc., Karine. "Are you carrying adrenal Cushing's syndrome without knowing it?." PHYSorg.com. 27 Nov 2013.
Perlemoine, B.S., Fernande René-Corail, B.S., Franck Letourneur, Ph.D., Bilal Trabulsi, M.D., Alix Poussier, M.D., Nathalie Chabbert-Buffet, M.D., Ph.D., Françoise Borson-Chazot, M.D., Ph.D., Lionel Groussin, M.D., Ph.D., Xavier Bertagna, M.D., Constantine A. Stratakis, M.D., Ph.D., Bruno Ragazzon Ph.D., and Jérôme Bertherat, M.D., Ph.D., ARMC5 Mutations in Macronodular Adrenal Hyperplasia with Cushing's Syndrome, New England Journal of Medicine 369;22, November 28, 2013
Provided by University of Montreal
This document is subject to copyright. Apart from any fair dealing for the purpose of private study, research, no part may be reproduced without the written permission. The content is provided for information purposes only. [The blogger provides this information for information purpose only. The blogger generates no advertising income, and all articles are presented to educate the patient, family member, or friend who may be facing Cushing's.]
Thursday, November 28, 2013
Bringing Back My Real Self With Hormones
This person's experience rebuilding her life after pituitary disease is very familiar. It shouldn't be this difficult, should it?!
"And access to these medications should not be hindered. As it stands today, some of the hormones I need daily to stay alive and to thrive can be, and frequently have been, blocked at the whim or neglect of a doctor's office, insurance company or pharmacy. And still, 18 years after my surgery and despite great advances in endocrinal science, I need to fight to get them.
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.
A common response is utter disbelief. Most people go the pharmacy and get their prescriptions filled, and the worst indignity is a long line. Their personality won't go wild. A part of my body has been removed, it will never come back, and I need to take a dozen meds every day or I could get sick or die. Among the drugs I need to take are human growth hormone, hydrocortisone and thyroid hormones. How can we resolve these challenges?"