She is doing very well. Check out her video and see for yourself.
Friday, November 29, 2013
Lori's Brainiversary
Lori is my good friend who underwent pituitary surgeries 4 and 5 last September 2012.
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?"
BLA stats: good news!
Surgical outcomes of laparoscopic adrenalectomy for patients with Cushing's and subclinical Cushing's syndrome: a single center experience
Sunday, November 24, 2013
Educating Loved Ones about Your Health During the Holidays | Psychology Today
Another wonderful article with actionable advice. Thanks, Toni.
Educating Loved Ones about Your Health During the Holidays
Chronic health problems pose a challenge to relationships any time of year. Most people don't understand the debilitating effects, physical and mental, of unrelenting pain and illness—unless they experience it themselves or are the caregiver for someone who is experiencing it. During the rest of the year, many of us have learned to limit interactions with others in order to manage our symptoms.
But when the holidays arrive, if we're not careful, we can find ourselves suddenly thrust into the middle of a lively and chaotic social scene where we're expected to participate in a range of activities, often for days on end. As a result, this time of year can be a recipe fordouble disaster—the increase in activity exacerbates our physical symptoms, while coping with sadness, frustration, and maybe even guilt about our physical limitations gives rise to emotional pain.
No wonder many of us with health problems dread the holiday season.
We can do a lot to minimize the negative effects of the holidays on our health by being sure that loved ones know about our limitations. If you're one of the many people with chronic health problems who don't look sick, the burden is on you tomake your condition "visible." If you don't take this pre-emptive action, people's expectations of you may be way out of line with what you can handle.
Here are some suggestions for helping loved ones understand what your life is like so that all of you can better enjoy this time of year:
In person, by phone or email, let loved ones know in advance what to expect from you during the holidays.
You might start by telling them that how you feel on any given day is unpredictable. Even if you rest for days in advance, you may feel sick or be in terrible pain on the actual day of a gathering. The unpredictability of chronic pain and illness is the single hardest concept for others to understand—that we can spend weeks in full "rest mode" before a big event, yet still be virtually non-functional when the day arrives.
I also suggest letting them know that, as much as you'd like to participate fully, you may have to skip some events or come late and leave early or excuse yourself at some point and go lie down. In my experience, spelling out my limitations ahead of time is helpful, not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting that I might be doing so.
This happened to me this past Thanksgiving. I had to leave the table mid-meal because I was too sick and in too much pain to continue to sit up. But I felt okay about leaving without explaining myself (so I didn't interrupt the ongoing conversation), because I knew that my husband and my son and my daughter-in-law would know exactly what was going on with me. So, although there were others at the table who probably didn't know why I disappeared, the fact that I knew that these three people did know, gave me the courage to do what I had to do in order to take proper care of myself.
Enlist the help of an ally.
If you find it hard to explain to loved ones in advance about your limitations, think of whether you have a close friend or family member who understands what you're going through and ask that person to help you explain your condition to others. You could ask your ally to talk to loved ones on your behalf or to be present with you when you explain to them what to expect from you during the holidays.
Having a neutral third party involved like this can make a tremendous difference: it can magically turn your loved ones into good and sympathetic listeners.
If your ally is present at a gathering with you, ask him or her to be supportive if you have to leave early or go lie down. You could even ask your ally to let you know if you're wilting (as we call it in my household). It's so helpful for me to be "prompted" by my ally (my husband) because, when I start to overdo things, adrenaline kicks in which fools me into thinking I'm doing fine. But using adrenaline to get by just sets me up for a bad crash later on.
Think long and hard before you decide there's no such person in your life. Your ally may be a close friend or family member who's just waiting for you to enlist his or her help. That said, if you have no ally (I know that's the case for some), I can be your ally via this article: if you think it would be helpful, send the piece to those you wish would understand your circumstances better.
Recognize that some loved ones may never accept your limitations, and resolve not to let that cause you to doubt yourself.
Some family and close friends may never accept that you're disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability to accept how you are is about them, not you. Don't let their doubt make you doubt yourself. Your medical problems may trigger their own fears about illness and mortality, or they may be so caught up in struggles of their own that they're not able to see their way clear to empathize with you.
Just as we can't force people to love us, we can't force people to accept us as we are. I've found that getting angry at others when this happens just exacerbates my symptoms. The Buddha said that when we direct anger at another, it comes right back to us—like fine dust thrown against the wind. That's why it's important to protect ourselves by not letting others' lack of understanding upset us.
The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel misunderstood by family or close friends, here's what I do:
- First, I acknowledge that I feel hurt. Trying to pretend I'm not feeling the way I'm feeling only intensifies the emotional pain.
- Then I reflect on how there are many possible reasons for their behavior and how I need not take it personally.
- Next, I resolve not to let their treatment of me affect how I treat myself: regardless of what they think, I know I'm sick; self-care is my first priority.
- Finally, I work on genuinely wishing them well, despite their lack of understanding. A little bit of well-wishing can go a long way toward relieving my own emotional suffering.
My heartfelt wish is that your loved ones come to understand and accept your limitations, but that if they don't, you'll be able to accept them as they are without bitterness.
You might also like "When Poor Health and the Holidays Collide."
© 2012 Toni Bernhard www.tonibernhard.com
Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.
I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.
When Poor Health and the Holidays Collide | Psychology Today
Thank you to Toni, the author, for expressing what I can't and for offering solutions I hadn't tried.
When Poor Health and the Holidays Collide
As people around the world celebrate the holidays, it's a "happy/sad" time of year for many of us (to use an expression coined by Buddhist teacher Jack Kornfield). I want so badly to spend time with my loved ones, but I also know that I won't be able to participate fully in the festivities and that even my limited participation will result in "pay back" later on.
To make matters more difficult, I find it hard to muster the discipline to limit that participation, even when my body is sending me strong signals that it's time to stop. For example, at our house in November, our son and his family and a couple of close friends come for a Thanksgiving dinner that my husband cooks. When everyone arrives, invariably, I start out with a burst of energetic socializing—a reaction to the fact that I spend so much time alone. I might be able to last longer if I paced myself, but I'm rarely successful at it: I'm just too excited to see everyone.
As I talk about in my book, How to Be Sick, one of the bitterest pills for me to swallow when I became chronically ill was that suddenly the very activities that brought me the greatest joy were also the activities that exacerbated my symptoms. Prolonged socializing is one of those activities.
The most difficult challenge for me has been learning to cope with the isolation I feel when I have to leave a gathering and retire to the bedroom. It's particularly difficult because it always seems to coincide with the time when socializing has become easygoing and mellow. It's not unusual for conversation to be polite and stilted when people first gather. But after a while, everyone relaxes. By the time I've mustered the self-discipline to excuse myself, I retire to the sounds of warm conversation, spiced with peals of laughter. It's the very time I want to be with everyone.
When I get to the bedroom, I always think, "If only the party had started right at this moment, I could there for the best part!" At first, I'm overcome with sadness as I listen to the sounds of socializing coming from the front of the house. But over the years, I've developed some practices to help alleviate the pain of being isolated from others. Here are four of them.
No Blame!
I used to compound the emotional pain of having to leave a gathering by blaming myself for not being able to stay. It's not uncommon for those of us who suffer from chronic pain and illness to think that it's our fault for some reason. People write to me all the time, convinced that some kind of moral failing on their part brought about their health problems. Let me set the record straight right here: it's not our fault that we are sick or in pain. We're in bodies, and bodies get sick and injured. It could happen to anyone.
It took me many years to stop blaming myself for being sick. But when I did, the feeling of relief was tremendous. It was like laying down a heavy burden. And the reward was that it enabled me to begin to treat myself with compassion. Self-blame and self-compassion are incompatible. I hope you'll work on replacing the former with the latter.
Self-Compassion
As I settle onto my bed, I don't try to deny that I'm sad. Pretending that I don't feel sad or frustrated or any other painful emotion just strengthens it. So, the first thing I do is to gently acknowledge how I'm feeling. Then I speak to myself compassionately about those painful emotions.
If you'd like to try this, I suggest you pick phrases that fit your particular circumstance and repeat them silently or softly to yourself: "It's so hard to leave the gathering just when the conversation is getting good"; "I'm sad to be alone in the bedroom." Repeat your phrases, maybe stroking one arm with the hand of the other. Stroking my arm or my cheek with my hand never fails to ease my emotional pain.
If speaking to yourself in this way brings tears to your eyes, that's okay. They're tears of compassion. To quote Lord Byron, "The dew of compassion is a tear."
Feeling Joy for Others
Sometimes I practice what's known in Buddhism as mudita. It means cultivating joy for others who are happy. I think about the good time everyone is having and try to feel joy for them. If I feel envy instead, I don't blame myself. I just acknowledge with compassion that this is what I'm feeling and then I try mudita again. I imagine their smiling faces and the sound of their laughter. After a time, I can't help but feel happy for them, even if I'm still sad. And sometimes, I even start to feel joy myself, as if everyone is having a good time for me.
Tonglen
My most reliable practice for easing emotional pain during the holidays istonglen. Tonglen is a compassion practice from the Tibetan Buddhist tradition. It's counter-intuitive, which is why Buddhist teacher Pema Chödrön says that tonglenreverses ego's logic. Here's why it's counterintuitive. We're usually told to breathe in peaceful and healing thoughts and images, and to breathe out our pain and suffering. In tonglen practice, however, we do just the opposite. On the in-breath, we breathe in the suffering of others. Then, on the out-breath, we breathe out whatever measure of kindness, compassion, and peace of mind we have to offer them, even if it's just a little bit.
Here's how I use tonglen when I'm overcome with the pain of isolation at holiday time. I breathe in the sadness and pain of all those who are unable to be with family and close friends. Then I breathe out whatever kindness, compassion, and peace of mind I have to give them. As I do this, I'm aware that I'm breathing in my own sadness and pain, and that when I breathe out kindness, compassion, and peace of mind for them, I'm also sending those sentiments to myself. I like to calltonglen a two-for-one compassion practice—we're not only cultivating kindness, compassion, and peace for others who are alone, we're cultivating them for ourselves.
When I practice tonglen, I feel less alone because I experience a deep connection to others who, like me, can't fully participate in holiday festivities. Sometimes my eyes fill with tears as I breathe in other people's pain and sadness surrounding the holidays, but I know these tears are "the dew of compassion"—for both them and for me.
If you find it difficult to breathe in other people's suffering, then modify the practice. Rather than taking in their suffering on the in-breath, just breathe normally and call to mind others who share your circumstances. Then, in whatever way feels natural to you, send them thoughts of kindness, compassion, and peace. You need not breathe in others' suffering in order to feel connected to them or in order to enfold both them and yourself in your heartfelt wish to ease the suffering of being isolated during the holidays.
You might also like "Educating Loved Ones about Your Health During the Holidays."
© 2012 Toni Bernhard
In my two books, I write in more detail about the practices in this article. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.
I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.
Sunday, November 17, 2013
Laparoscopic Adrenalectomy for Patients with Cushing's
I find that the information on the Cushing's Research and Support Foundation's website regarding adrenalectomies still relevant, despite being written in the mid 2000s. Laparoscopic adrenalectomy is still the best route given low patient down time and limited complications and preferred surgical access.
http://csrf.net/page/laparoscopic_adrenalectomy_for_patients_with_cushings_syndrome.php
http://csrf.net/page/laparoscopic_adrenalectomy_for_patients_with_cushings_syndrome.php
Stomach acid--the why and the what
Stop The Thyroid Madness™ finally examines why those of us with Cushing's often replace iron and vitamin D, among other nutrients to malabsorption in the stomach.
After all of these years of fighting Cushing's, I still am learning the nuances of my treatment and care.
This affects that and that affects this and so on and so forth.
The more I click, the more I learn.
I hope you are enjoying my medical stream of consciousness.
Character Above All: John F. Kennedy
JFK faced Addison's before synthetic cortisol replacement was widely available!
I can only strive to match the tenacity and philanthropy of JFK once I trade Cushing's for Addison's with the BLA surgery.
http://www.pbs.org/newshour/character/essays/kennedy.html
Saturday, November 16, 2013
Adrenalectomy Improves Quality of Life for Cushing's Patients Although It May Take Years
Robin at http://survivethejourney.blogspot.com/ shares an article about what Cushing's patients can expect after undergoing a bilateral adrenalectomy to cure Cushing's.
Adrenalectomy Improves Quality of Life for Cushing's Patients Although It May Take Years
She writes:
"Overall, [the authors] conclude that adrenalectomies are a safe and effective treatment option, but both physicians and patients must not expect overnight improvements. This is another case of where slow and steady wins the race."
"Overall, [the authors] conclude that adrenalectomies are a safe and effective treatment option, but both physicians and patients must not expect overnight improvements. This is another case of where slow and steady wins the race."
Read the abstract and more at
http://survivethejourney.blogspot.com/2012/04/day-17-of-cushings-awareness-challenge.html?m=1
http://survivethejourney.blogspot.com/2012/04/day-17-of-cushings-awareness-challenge.html?m=1
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