Friday, April 20, 2018

Adrenal Crisis: What to Do

APRIL IS CUSHING's AWARENESS MONTH


Adrenal crisis is a reality for most Cushing's patients post op pituitary surgery and post op single adrenalectomy (unilateral adrenalectomy ULA) or double adrenalectomy (bilateral adrenalectomy or BLA). In fact, this article published in ——- in the journal ——- (insert link) says that even educated patients go into adrenal crisis. "Insert quote from article"


 listing the top three reasons for adrenal crisis:


(Insert red graphic)


adrenal crisis is a stop sign. Take steps before to ensure you stop in time.

(Explain more)


WHAT DO I DO WHEN I FEEL SIGNS OF ADRENAL INSUFFICIENCY?


(Insert AIU graphic)


How many symptoms of adrenal insufficiency do you have? Start stress dosing when you have 2-4.


Add part about looking at activities for the day, staying ahead of cortisols hole. 


For me, it starts with stomach pain. I feel like something just stabbed me, and I put my hand on my abdomen to check if someone hasn't stabbed me when I wasn't looking. Then comes the lower back pain. I have degenerated disks from L3-5 and S-1, so I'm not sure if it is really adrenal insufficiency. When the diarrhea hits, I know there is trouble. It's never the soft serve stool kind. It's the explosive fish flakes almost water kind. Once I get three symptoms, I take 20 mg hydrocortisone under my tongue, which tastes horrible, and set the timer for 45 minutes. It I don't feel remarkably better (like a wilted flower that perks up with water), then I take another 20 mg. If I have diarrhea again, I take another 40 mg HC under the tongue and set timer again. I'll try to get gatorade/ electrolyte drink and add pink Himalaya sea salt to the lid and dump it in. Plus I lick my arm. If I'm salty, I know I'm losing salt and then sodium becomes too concentrated in my blood, which causes potassium goes too low. So then I start drinking the pickle juice. Yum so tasty. If I have diarrhea more than three times, I inject myself with the solu cortef injection, placing a 3" needle into my thigh. My husband or I drive to the ER because now I'm dehydrated, which concentrates and increases the sodium, which lowers potassium, which is so dangerous.


I have to convince the intake nurse that we ought not be triaged because this is life-threatening just like a type 1 diabetic with low blood sugar!! I have to show them an emergency letter from my doctor (not at that hopsital), the National Adrenal Disease Foundation letter, and Adrenal Insufficiency United infographics stating we should skip triage. The nurse tells me to sit down, and I refuse. I say I will stand at the desk and wait.  I ask him or her to take that letter to her manager. This tactic usually works. I am the next to go back to get vitals checked. Then I get a room!


Once I get back to the room, the struggle continues. Sometimes I get a doctor who understands what I'm asking for: IV fluids and IV Hydrocortisone 100 mg. Other docs tell me that I can't be in adrenal crisis because my blood pressure is high. I explain that I took extra steroids (____ mg HC) at home because we are taught to self-treat cortisol lows like a type one diabetic is taught to self-treat blood sugar lows. After multiple dehydrating events like diarrhea and vomiting, I must come to the ER for IV fluids. Labs run at the ER should not determine my need for IV hydrocortisone and IV fluids. I am taught to go to the ER in adrenal insufficiency as a way to prevent adrenal crisis. 


It should simply be as easy as saying, "I'm facing adrenal insufficiency and need IV fluids and IV hydrocortisone." However, it seems it is always a battle to get those. Having those letters on file so ER staff knows your medical condition is helpful but still doesn't always work. Many are tempted to treat at home and avoid the ER based on past experiences at the ER when they didn't get the help they deserved and needed. This is a dangerous situation for us patients, because when we need IV fluids and IV hydrocortisone, we need it. Although adrenal insufficiency is considered rare, just as Cushing's is, we must educated those around us to ensure we get the care we need. Don't give up on this. These efforts can and will save your life. 


TEACH LOVED ONES TO BE YOUR ADVOCATE


save infographics on your phone in adrenal

Crisis folder


Hold a meeting to discuss your condition with friends and family. They must know how to help you. While you may want to avoid this, let me state here that people would rather know how to help you—no one wants you to die on their watch. The guilt and sadness of not knowing what to do to save you is too heavy a burden for our loved ones to carry. Make it fun. Make up pretend scenarios,  ask them questions and have them find the answers in the folders (below). Just as fire drills help us know what to do in the event of a fire, adrenal crisis drills help in the same way.


Create paper copies in folders with this info to keep in the cars of anyone you would ride with or who would visit you in the ER and hospital. Information is easier to see when printed out on larger paper, although phones have worked too.


Send same images to friends and family, anyone who you spend time with 







Wednesday, April 18, 2018

PRO TIPS: Testing cortisol saliva at midnight + marathon testing

APRIL IS CUSHING'S AWARENESS MONTH TODAY'S POST DISCUSSES THE NUANCES OF TESTING AND CATCHING HIGHS.
Endocrinologists order several tests to see if your body's cortisol production is abnormal. These tests include:

  1. 8 am cortisol serum/ blood and ACTH plasma/ blood
  2. 24-hour urinary free cortisol (UFC)
  3. dexamethasone suppression test
  4. midnight cortisol serum/ blood
  5. midnight cortisol saliva
I'll be talking about midnight cortisol saliva and 24-hour UFC today.
MIDNIGHT CORTISOL SALIVA TESTING

Doctors instruct patients to take cortisol saliva tests at 11 pm. Some patients get high results at this time, while others don't. For the patients getting normal results, this is confusing and devastating. As a result, doctors often tell the patients that they do not have Cushing's. Patients feel tears well up in their eyes, leave doctor's office, and burst into tears, thinking they will never find out what is killing them slowly every day.
Pro tip #1: Do the saliva cortisol tests between 12:10 and 12:15 am several nights in a row. In the fall of 2017, several patients were frustrated that their midnight saliva cortisol testing came back normal repeatedly. Their doctors told them to test at 11 pm. However, I suggested that patients test between 12:10 and 12:15 am because cortisol spikes in Cushing's patients at midnight when cortisol is zero in normal people allowing them to go to sleep. This is how I did my tests when I was testing for Cushing's (fyi--I was diagnosed with Cushing's four times in six years). When these patients followed my pro tip, they happily reported back that they finally go high cortisol saliva results. They have since gone on to have surgery for Cushing's.

Be sure to follow the instructions and abstain from drinking anything or brushing your teeth 30 minutes prior to the test. Quest Diagnostics' instructions are pretty standard, so be sure to review them prior to completing these tests. ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@ ~~@

Pro tip #2: Test urine and saliva on the same days, several days in a row.

Doctors don't tell us this. They say, just test when you can. I don't recommend this. The burden of proof is on the patient to produce abnormal test results. Any normal results lead a doctor to rule out Cushing's and stop all testing of cortisol. This is a HUGE obstacle that many Cushies who have cyclical/ intermittent/ episodic cortisol production. Doctors learned in medical schools that:
  1. Cushing's is so rare, and they will never see a case of Cushing's in their entire career;
  2. all patients with Cushing's are florid, meaning tests conducted at any time will always show high cortisol levels in saliva, blood, and urine.
Testing urinary free cortisol (UFC) and saliva cortisol on the same days on consecutive days is essential for patients, as it shows doctors that:
  • midnight saliva cortisol can be high even when 24 hr UFCs are normal, or
  • midnight saliva cortisol are normal even when 24-hour UFCs can be high
  • your body's cortisol production varies widely in the same week.
    This is absolutely critical for the Cushies with cyclical/ intermittent/ periodic/ non-florid cortisol production. 
24-HOUR URINARY FREE CORTISOL TESTING

1) Bring your doctor's lab requisition/ orders to local lab.
2) Lab tech will review lab orders and give you the number of orange jugs you need.
3) Ask for a "urine hat." This allows us to urinate comfortably into a receptor, then pour the collected urine into the orange jug.

So, how does this work?
  1. Create large notes and tape them to the toilet seat cover in all of your bathrooms. This will ensure you don't forget that you are testing.
  2. Choose one toilet to be your testing spot.
  3. Place the "urine hat" from the lab in that toilet under the seat.
  4. Use a black marker to label all of your UFC jugs with your name, date of birth, and date of test, and test number. (#1-5 if you are doing 5 days of testing)
  5. Void/ urinate in the toilet at 8 am* to start the 24-hour UFC test.
    (You do not want that urine, as it was produced by the body in the hours before your test is starting.)
  6. Catch all urine in your urine hat. Immediately pour this urine into the orange container every time you urinate for the next 23 hours and 59 minutes.
  7. Keep your urine container cold. Refrigeration is best.
    (Keep your urine jug in a plastic or paper bag. You can place down a cloth towel or paper towels on the shelf in the refrigerator. Urine collections that are not kept cold will grow bacteria, and the lab will throw out your test.)
  8. At 8 am,* urinate into the orange container once last time to catch all the urine your body produce in that 24 hour period.
  9. You just completed your first 24-hour UFC. YAY!
  10. Start another 24-hour UFC.
    Don't worry about voiding before the test. You did that already. It's in the previous urine collection jug.
  11. Go back to step 6 if you are doing multiple tests.
    (Essentially, don't let another drop of urine hit the toilet for five days or however many days you are testing. I've completed consecutive 9 UFCs in the past.)
* You do not have to start your urine test at 8 am. You can start at 9 am, 10:23 am, whenever. Just make sure that you end the test and urinate in the jug one last time at the same time the next day. This will ensure you captured urine for 24 hours.

* Take your completed UFC test to the lab daily. Labs are notorious for mishandling or losing multiple tests when submitted at the same time. Don't ask me why. Just know that they will lose those tests--all your hard work for days. Save yourself the horror: make a trip to the lab and give them one test at a time. Yes, this is time consuming, and yes, the lab should do better. However, if they lose your UFC test, you will be the only one crying. Plus, you will have to repeat the test.

I hope all of your results are high, and you get to diagnosis quickly!

MOXIE MELISSA P. S. Need more moxie in your day? Go find me on Facebook by clicking Fight Cushing's with Moxie.

Wednesday, January 10, 2018

Service Dog Alerts

Hey Cushies. I haven't shared much about my training with Tux, my service dog. I hope to do more in 2018.

I had to stop to tell you about what happened today.

I woke at 8 am but stayed in bed until 9:15. After I took Tux out to potty, he never left me alone. He wasn't just by my side. He was constantly trying to get my attention.

Smelling my breath.
Whining.
Barking.
Licking my face.
Sitting and staring.
Pawing me.
Climbing in my lap.
Biting my forearm.
Nibbling my chin.
Walking all over my lap.

Tux was getting my attention. What was he trying to tell me? I don't know.

I thanked him. Praised and petted him. I told him he is such a smart doggie and one day soon I'll learn what he is telling me. He'd be content with the loving for al of two minutes, then he would start it all up again.

Smelling my breath.
Whining.
Barking.
Licking my face.
Sitting and staring.
Pawing me.
Climbing in my lap.
Biting my forearm.
Nibbling my chin.
Walking all over the bruises from the past times. It hurts and sometimes I get mad. I'm trying to be more understanding, knowing he is telling me something. He is extremely well behaved as we have worked on his public access training over the past nine months.

Over and over, Tux was telling me something but I didn't know what.

Gratitude. Praise. Pet. Repeat.

Tux's aggressive alerts lasted from 10:50 am to 2:50 pm. I didn't feel that well. Back was hurting. A little nauseous and headache was ramping up.

I went to lie down for a few minutes at 2:50 pm. Out of the corner of my eye, I saw my orange medicine container on my side table.

The morning slot was full.
I forgot to take my morning meds.

😳🀭😱

Among my daily pain and psych meds, I also missed my fludrocortisone dose. Fludrocortisone replaces the adrenal hormone aldosterone.

Does it really matter, taking this medication just 10 hours late? Well, yeah!

Without adrenal glands, I don't make cortisol or aldosterone. This life-sustaining hormone helps regulate sodium and potassium levels in the body. It helps control blood pressure and the balance of fluids and electrolytes in the blood.

When Tux was alerting me, my blood pressure was low but pulse was high.

I'm so amazed by my dog. Thank goodness for Tux.
He takes care of me.

Be well, fellow Cushies.

PS My trainer Angela at Service Dogs Express told me Sunday that Tux is actually taking DNA samples when he nibbles on my chin. The term for that action is called "scraping." WOW, right?!

Monday, January 8, 2018

NADF’s Emergency Protocols

A big thanks to my friend Karen, founder of the EPIC Foundation for for sharing the National Adrenal Support Foundation. This resource has many links to documents to use in various medical settings, especially emergency protocols:   


http://www.nadf.us/tools-for-life/#emergency

Thursday, November 9, 2017

Finally!! Salivary cortisol meter on smart phone!!



Finally, the dream has come true. Testing your salivary cortisol can now be done on your iPhone with Point of Care (POC) technology. Join Dr. Friedman for a webinar informing the Cushing's and Addison's community on the newly available Peak Biometric Research Stress Management System that offers a quick, private, and non-invasive way to measure cortisol levels —without the hassle and expense of sending samples to a lab. Dr. Friedman will go over how to order and use the POC salivary cortisol monitor. He will explain that the product is not FDA-approved for diagnostic purposes and how to use it with commercial salivary testing. There will be plenty of time for questions and discussion.
salivary cortisol webinar
Sunday, November 19, 2017
6:00 pm  |  Pacific Standard Time (San Francisco, GMT-08:00)  |  1 hr
 
Meeting password: cushings
join  the meeting at https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m7e4e4417ad6e72eb69aaffb547d5bbd9
 
Join by phone
+1-855-797-9485 US Toll free
You  can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by "chat" and the videoconference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.
 

Tuesday, November 7, 2017

Join me! Be an Advocacy Troll



Fed up with endocrine info, I've been posting on the Facebook pages of EndocrineWeb and the American Association for Clinical Endocrinology posts where they could have easily included info about high cortisol and Cushing's. I'd like to think of it as "advocacy trolling." 😎 I encourage ALL Cushies to help me with this mission. Check twitter and get them there, too (one day I'll tweet but don't now!). Please like those two FB pages so you won't miss my comments and I'll see yours! Add other endocrine sites below so we swarm them with our advocacy trolling. 

We must have more contact with the endocrinologist community. There is safety in numbers. Endos dismiss us and ridicule us one on one behind closed doors, but together, we can show them how many of us there really are!

It's about time there was support for Cushing's!

I encourage you to create an account and read, Read, READ on Cushings-help.com.
It's free!
As you may have heard me say before, I learned so much of my Cushing's knowledge from the Cushing's Help website, founded by MaryO. I found the following blurb and I was just astonished at how much information is contained on one site.

The Cushing's Help message boards were founded on September 30, 2000. There are over 383,000 posts and 72,576 members as well as a chat room, photo gallery and much more. Over the years, we've surely covered your issues!

While many post on Facebook now, there is so much merit to posts organized by topics AND reading information about the person posting based on information they provide in their signature. For me, I was always watching the Cushies way deeper into their journey than me, and I ultimately would place more weight on those responses while still taking all comments under consideration. With facebook, there is no way to know what each person commenting has gone through (undiagnosed or three surgeries including a BLA). That makes it harder and more confusing to me. I encourage you to create a username and password and start reading! Learn something on your own. Read about others' stories... you will be quite amazed to see how relevant it is to you... even without posting a new topic about yourself. As much as we Cushies struggle uniquely with the symptoms as they present and how they affected our lives and relationships, you will learn that much of our experience also overlaps. Focus on that parts that are the same, and you will find yourself filled with more knowledge than you had before you started.

So get going.  And be sure to thank MaryO when you see her. She has maintained Cushing's Help single-handedly for over 17 years. Bravo MaryO and thanks to all those who posted about their lives on that site... YEARS before we even had Facebook!!

To join Cushings-help.org, click here.

Wednesday, October 25, 2017

Adrenal Crisis & BLA

Take a listen to JenS as she describes her Cushing's journey and adrenal crisis.

*Thank you to MaryO, founder of www.cushings-help.org, for creating this series of podcasts.

Saturday, October 21, 2017

Addison’s Mum, 44, died after antibiotics don’t control UTI

Sarah Ann Parr, 44, wife and mum of two felt faint and dizzy after a family walk. She had taken antibiotics for a urinary tract infection (UTI), yet the medication failed to treat the infection.

For all you BLAers and post op Cushies, WATCH OUT for any infection that can whittle down the cortisol you take daily. The body uses cortisol to fight infections, so it will use up the medication you take orally, leaving you without enough to sustain vital bodily functions like maintaining blood pressure and metabolism. 

Rest In Peace, Sarah. 
You are gone but will not be forgotten. ❤️ 


Sarah and her family also went on a walk up Moel Famau in Wales, United Kingdom. 

     Distance: 5.9 Kms/ 3.67 miles

     Ascent: 298 metres

     Time: 2 hours

     Start and Finish: Moel Famau Car Park

A hike or any such physical activity would also require a patient with adrenal insufficiency to take more cortisol to cover the "work" the body must do to climb up the hills. This physical exertion plus fighting a UTI and E. coli was just too much for Sarah's body to handle. 





The Matchstick Theory

Like many Cushies and folks who struggle with chronic disease daily, I've heard of the spoon theory. Some people love it and go ga ga for it.

Me:  Meh. 🀷🏽‍♀️ 

I mean I get it. 
I agree with it. 
It just doesn't describe how my days usually go and the multitude of nuanced choices I must make each day.


Tonight, I found my new substitute spoon theory!  I proudly bring you the Matchstick Theory


Friday, October 13, 2017

Saturday, September 30, 2017

Google Cushing’s Moxie

I have written over 350 posts about Cushing's in the past nine years. Even I have forgotten all I had to say about Cushing's—high cortisol, low cortisol—over the years. As I help others figure out their symptoms, I google myself. Well, I google Cushing's Moxie to find out what articles I've gathered or thoughts I expressed on the matter.

You can do the same!

If you care to know what I wrote about a particular topic, you can do google keyword searches like:

• Cushing's moxie buffalo hump
• Cushing's moxie cognitive
• Cushing's movie depression
• Cushing's moxie cyclical
• Cushing's moxie tips
• Cushing's moxie pituitary surgery
• Cushing's moxie adrenal crisis
• Cushing's moxie testing


Dear Google will bring you whatever is tucked away in this little blog of mine.

I'm in the process of reorganizing the blog into a functioning website to ensure all topics are easily accessible by topic, not just chronologically according to my life and the way I experienced it. Until that project is complete, try this way. It works for me!

Tuesday, September 26, 2017

Cushing's - Forget You!




In talking with other Cushies this week, it seems like so many of us are feeling down.

I started humming this song that my friend Cushie Steph wrote and recorded over five years ago. I knew it was just the thing for a quick "pick us up."

Enjoy!

Click to the youtube video below.


Sunday, September 17, 2017

Cortisol Replacement after Surgery

I read lots of stories online about patients preparing for surgery and surviving post op. We hear that weaning off cortisol post op after having such high doses of cortisol damaging our bodies is akin to a person stopping heroin cold turkey. Really?! That sounds horrific and awful. Yet, we are all left wondering what is that mean in terms of symptoms. Everyone wants to get a sense for what is normal if the suffering they are feeling post op is normal. AND... wondering if and how they can get through it. 

When I read these posts, this is my reply. I wanted to share it here in hopes it helps folks who frequent this blog. 

What cortisol dose did you start after surgery? What cortisol dose are you taking now? We Cushies often need more cortisol than our docs give us post op. Many times, endos give patients 20/10 mg hc because they have all decided this is the proper replacement dose or physiological dose. Some patients follow their advice, suffer, but endure. As a 10 year veteran, what we have learned from each other in these groups is this: the cortisol surging through our bodies pre op / with cushing's was in NO WAY at physiological dose... not at normal dose. We all know we had excess cortisol. So why do they give us 20/10? This huge drop causes patients to live in a dangerous state of adrenal insufficiency. I know that many patients come online seeking help and relief, and the advice we tell them is the same--
Too much cortisol post op won't hurt you more than Cushing's already did (remember all that waiting?!), but too little post op can kill you. So how are endos so confident what is too little? They need to listen to us and see how we react, and if it is extremely difficult, we need to take more. 30/10 instead of 20/10. When my doc sent me home on 20/10, it took me going up to 40/20 mg hc a day to stabilize. Then I would wean by 5 mg a week then 2.5 mg when I got below 35 mg. Yes this makes recovery much longer, but it also means you survive. That's the goal, right? To survive this ordeal? So everyone, please be careful. You know your own bodies and when it comes to recovery from this dreadful disease, there is no one dose fits all solution. Be gentle with yourself, and if you face symptoms of adrenal insufficiency, please do not hesitate to take more. 5 mg hc under your tongue will make the meds enter your bloodstream faster. If you don't feel any lift or relief in 60 minutes, take another 5 mg. If you have more than three symptoms of AI, start with 20 mg and get fixed up faster. You are in control, and you will learn what you need. Yes it takes a long time to recover from the damage of this disease, but you can make sure you have enough to lessen the suffering. There is no tough it out, mind over matter to getting off steroids. You cannot will your adrenals and pituitary to wake up after surgery. They will do it when they are good and ready.  Please don't force yourself and end up dead. I say this because we have seen it happen. Don't let that be you. Please. All of us want to cross the line and win our race. It's just that our bodies have set the distance, and we have to keep going until the end without ever knowing when the race will end--quite cruel and certainly exhausting, but the goal is to be alive at the end. We Cushies will be cheering you along the entire way.

Wednesday, September 13, 2017

Saturday, September 9, 2017

Friday, September 8, 2017

My Plea to Cushies

My Plea to Cushies & Those Who Love them

Please research patient advocacy. Please learn what it means to stand up for yourself or loved one. Please read up on how to be assertive, even with doctors, surgeons, everyone.

Some moderators and I are on high alert trying to convince people in adrenal crisis to get he care they need. They just can't or won't advocate for themselves. This is what I think of that, folks. It's serious. It's life-threatening. Let's learn something from all the Cushing's deaths surrounding us. Please. Those who care about you want the best for you, but we can't be there to do it for you. You worry us. Don't make us have to stress dose over you. Save yourself.

Wednesday, September 6, 2017

Houston woman, post op Cushie dies during Hurricane Harvey

Wife, Mother of 2, post op Cushing's patient dies without medical care during Hurricane Harvey's flooding


Photos featured in Houston Chronicle article, 9/5/2017

I'll spare you waiting for the end of the article where it is mentioned and tell you now.

"Casey Dailey also was fighting Cushing's disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn't stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive."

Read Casey's heartbreaking story about adrenal crisis and Hurricane Harvey. 


********

I have deep regrets that I never had a chance to know Casey and help her, a fellow Houstonian.  My heart just breaks because she never got the chance to get well and to be herself again. Every Cushie dreams of that.

We Cushies send our most heartfelt prayers to everyone who knew and loved Casey. 

I direct this to all the Cushies who may read this page. The gofundme page mentions Casey died from a post surgery infection. While this seems unrelated to Cushing's, it most certainly is. Infections absolutely and unequivocally lower cortisol. In fact, the body uses cortisol to fight infections. Left without antibiotics and more cortisol, any post op Cushies could die from adrenal crisis. Hurricane Harvey and flooding kept our poor Casey from getting the help she needed. I am calling it adrenal crisis. I am confident that many other seasoned Cushies will see Casey's situation and symptoms and conclude the same. What will prevent you from getting the emergency injection you need? A stubborn endocrinologist who refuses to give you one because you will also be close to the hospital? We've heard many say that.  Will it be a traffic jam, being alone when crisis symptoms prevent you from calling for help? We Cushies just never know.

I want to encourage all Cushies to contribute to the fund set up for Casey's family. Every dollar counts. Please mark yourself as a Cushie when you donate. I want the family to see how the Cushing's community steps forward and helps another Cushie's family. I know I am like every Cushie when I say this. I fear every day that this will happen to me. If you share that fear, please contribute even $5, and share this page. Tell others who love you that this could have been you. Ask them to donate, too. Please.

https://www.gofundme.com/dillsdaileyfund


Here is Casey's mother-in-law initial entry on the gofundme page:

My name is Darlene and I am writing this on behalf of my son Wayne Dailey. On August 29, 2017 Wayne tragically lost his wife Casey as a result of the devastating flooding in Houston, TX caused by Hurricane Harvey - shattering their and our lives forever.


Casey was home recovering from major surgery just before the storm and ensuing flooding occurred when she became very ill due to post surgery infection and needed immediate medical attention.  We worked fervidly to contact all the emergency rescue organizations to try to get Casey evacuated to emergency medical services. After trying somewhere between 24-48 hours to get rescuers to the family we went to social media pleading for help. We were finally able to get volunteers to try and reach them. 

Wayne carried their two young sons, Luke and Ronnie, across the street in chest high water to Casey’s parent's home to leave the boys with them in order to get Casey to emergency medical services as quickly as possible. In the process of the evacuation, Casey stopped breathing and in spite of exhaustive attempts by the volunteers and paramedics to revive her - Casey could not be brought back to life. Wayne was separated from his family by flood waters and could not return to them until the next day. There is so much more to this story and many of the details of the struggle to get the emergency services Casey so desperately needed have been left out.

 I cannot even begin to think of all the ways this will impact my son Wayne and two grandsons. Casey was a kind and loving person, a caring mother and wonderful friend to many. She was always willing to help others and reaching out to those she never met. Casey was the glue that kept family and friends together.

  Due to the economic conditions and Casey's illness they were already facing financial struggles and did not have life insurance. We are asking for any help you are able give towards immediate and future needs for the family’s many medical and funeral expenses. 

 We are setting up a fund and bank account where the donations will be deposited and specifically used by Wayne to pay for Casey’s funeral, medical expenses, immediate bills they may have and any unexpected expenses for Luke and Ronnie while Wayne tries to regroup and build a new life for him and his sons.

 Our hearts are filled with gratitude for everyone who worked so fervently to get help to Wayne and Casey and for the volunteers who risked their lives to rescue them-there are no words.  Any help will go a long way.  We extend our heartfelt thanks to all those who can help in this tragic moment that has left us stunned and overwhelmed.


*-*-*-*-*-*-*-
*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-


I have reached out to Casey's family. I will let you know if and when I hear back.

*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-

To my fellow Cushies. I write this especially to you. I am sure that all Cushies grieve with me today and forever in the loss of Casey and so many others. We will add Casey to the list of all those we fight for every day.

Although we see far too many deaths,
the Cushing's community will take our shock about every soul lost to this horrific and debilitating disease and fight for more Cushing's awareness for everyone involved in a Cushie's care: patients, patient's families, doctors, endocrinologists, ER physicians, nurses, emergency medical techs, firefighter emergency teams, and any medical professional who can save a Cushie's life from not enough cortisol -- an adrenal crisis -- with a simple $7 injection.

I am adding more documents on adrenal crisis below. Please save these to your smart phone, then send them to anyone who spends time with you to save on *their* phone. It can save your life. Please do this. 





Thursday, August 17, 2017

Detailed SOLU-CORTEF actovial instructions with Photos

Detailed SOLU-CORTEF actovial instructions with Photos. These are the best and most thorough that I've ever seen. 

Add this to your emergency kit. Place it on your refrigerator. Add to service dog vest.

Train loved ones to save you! I mean, if they like is, they want to keep us around, right?! πŸ’™πŸ’›πŸ’™

Tuesday, August 15, 2017

Choosing a BLA surgeon

(Updated April 7, 2018) How do you choose a BLA surgeon? What do you need them to say that will prove to you that will get every last one of those adrenal cells out of your body when they do your BLA? I share the questions I asked my BLA surgeon three years ago.

The internet is loaded with articles about how to choose a surgeon. 

Consumer Reports gives its suggestions. 

So does Forbes.

Even Medscape posted a study in early 2017 about How do patients choose surgeons (51% based on who accepts the insurance!). Perhaps we need to be considering other things, more medically-specific issues...

When the time comes for bilateral adrenalectomy or BLA, a Cushie has to choose the right surgeon. A google search didn't turn up much other than basic information from medical universities about Cushing's and BLA as a treatment. I did find this 2016 article Adrenalectomy for Cushing’s syndrome: do’s and don’ts, but doesn't help us when interviewing a BLA surgeon. The article tells us more when BLA is the best treatment, which is not what we are seeking.

I share so much information here in my little corner of the internet because the patient experience after BLA is nearly non-existent online. When Cushies search for information, I want them to find it. So I just post the list myself. My friends in the BLA group always help me learn more about this disease, so some of the knowledge I share here is as a result of learning from them.
I asked my BLA surgeon these questions in 2013. Yes, I asked all of these! Information is my right as a patient, and no surgeon is cutting into me without a thorough, but friendly interrogation.

-- How do you reach the adrenal glands? Which operative method do you use to perform BLAs: posterior retroperitonial laparoscopic approach or anterior laparoscopic approach? What are the benefits and risks of each method?


Many doctors have been trained one way, and they like to do it that way. Let them. You don't want them practicing on you. If you prefer one method, then find a surgeon that specializes in that method.*
I had my BLA done via retroperitoneal approach. I didn't suffer from much pain post op. I could move around easily because my body didn't bend and affect those surgical incisions. I know many people who have had their adrenal glands removed from the front or side. They experience a reasonable amount of pain and discomfort, but they are ok. They survive. 
Here is one 2012 article I found about retroperitoneal BLAs}

-- How often and under what circumstances have you converted from a laparoscopic approach to an open BLA? 


-- How many BLA procedures do you perform each year?
A Cushie friend P asked me who performs adrenalectomies. Answer: general surgeons or bariatric surgeons. This 2009 article entitled Which matters more: volume or specialty? reviews the outcomes of over 3,000 surgeries performed by nephrologists and general surgeons throughout the United States It is recommended to go with the surgeon that does a high volume of these surgeries for a better outcome.

-- Will you perform the surgery or do you have anyone else assist you? 
I prefer you to do it. I do not give consent for a resident or fellow to participate in my surgery.

-- Will a robot assist in my surgery?

This is a real thing. You better ask. Then click here to see how many adrenalectomies are listed under the 'robot' column.

-- Will my weight cause any surgical concern?

-- How much exploration will you do to search for ectopic adrenal tissue?
Give permission and encourage surgeon to really explore the area. Causes for persistence or recurrence of endogenous cortisol production were incomplete removal of the adrenal glands and ectopic adrenal tissue, which could be identified in locations like the retroperitoneal fat, the gonads, or the mediastinum.

-- How do you handle the adrenal gland once detached? Do you bag the adrenal? 
My surgeon said he doesn't cut into the adrenals. He cuts them away from the blood vessels, bags it, removes it, and sends it to pathology. This keeps him from leaving any adrenal cells behind.

-- How do you ensure that you remove even microscopic adrenal cells? Do you scrape the adrenal beds?
I drilled my surgeons about rest tissue and making sure they got the fat surrounding the adrenals. How does he/she make sure all adrenal tissue is gone, out of hiding. You want them to remove all the surrounding fat. My left adrenal slid south below the kidney!! My surgeon said it was a "normal" congenital defect"--that's an oxymoron!  Your surgeon needs to explore and track it down.

-- The adrenal glands are fed by many vessels and nerves. How do you navigate around these to avoid damage to the kidneys and other structures?
The arteries supplying the suprarenal glands are numerous and of comparatively large size; they are derived from the aorta, the inferior phrenic, and the renal. They subdivide into minute branches previous to entering the cortical part of the gland, where they break up into capillaries which end in the venous plexus of the medullary portion.

-- How often do you see patients after BLA for rest tissue after BLA?

-- Incidence of Nelson's of patients (med lit says 20%)


-- Have you had any of your patients get sepsis? die 30 days after BLA?

-- Under what circumstances should I seek emergency help after I leave the hospital?
The surgeon may say things like fever over 102 degrees, oozing wounds, extreme pain or redness at the incision sites, etc. Doctor should give you a number for how to reach him in an emergency.

-- How much hydrocortisone is administered peri-operatively?
100 mg Solu Cortef via IV push. You want all of that all at once, not drip drip drip via IV over a few hours

-- How long do patients stay in the hospital?

-- Do the nurses that care for me post-op have special training on adrenal insufficiency?

-- How often will you come visit me in the hospital? Daily?
I want to see you every day!

-- When are cortisol levels checked post op in hospital?


-- How will we assess the success of the surgery with lab work? 
DHEA-S is a good measure to check since this is made in the adrenals only. After both adrenal glands are removed, the blood cortisol level can be measured to see if the operation was successful if the patient is not taking hydrocortisone. In this circumstance, the patient should be given dexamethasone for several days before blood work since hydrocortisone is measured in the blood test as cortisol and dexamethasone isn't. Most adrenal surgeons don't even worry about dropping cortisol and instead send the patient for post op labs for DHEA, basic metabolic panel (BMP), and complete blood count (CBC) between days 5 and 10. That DHEA-S level should be very low. Mine was < 0.1. My endocrinologist Dr. Friendman said that was a ZERO. 

-- Who will write the orders for my hydrocortisone while I am in the hospital? 


-- How do I contact you if I am having trouble post op?

The doctor may say just tell the nurse, and the nurse will contact his/her office. That's all good except that most nurses are very hesitant to bother a doctor with all of the patient's questions. In our case, we need direct access to the surgeon and endocrinologist.  I have called the surgeon on my cell phone when the nurse wouldn't call after repeated requests. I have called the surgeon when the doc's fellows pay a visit and try to do something other than what the surgeon and I worked out at my pre-op appt. Don't be afraid to raise a stink and get the information you need. The folks there won't like it, but what can they do? Spit in your IV? No... you will be out of there soon, so be sure you get what you went there for.

-- When will my pathology report be back?


-- How often will I see you for post op appointments?


-- Would you be so kind to take a photo with me?
Since you are going to send this Cushing's in remission, I want to have a nice souvenir to remember us