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

I'm chatting with my nurse, Olga from Moscow. She is very interested in all I was telling her about Cushing's. She's gonna check out my blog soon.

Hi Olga!!

Update

Surgery won't be for a while. 2nd patient just went back. They let me come back to the pre-op room to lie down and get comfortable. It's 1:00 pm but I don't have an IV yet. She is here! 1:15 pm and now I'll get one.

Not many people here!

Very high tech hospital. QR codes on patient wrist band and very cool patient-in-surgery track in system. My husband can look at a large screen in waiting room and know by the color where I am.

New Best Friend

I know I will make it through with my new best friend / favorite three words for this week:

~ patient-controlled dilaudid ~

Surgery Selfie

Waiting Room with a View

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 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.  

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.

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/

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.

We *are* so brave

From our friends over at www.Butyoudontlooksick.com.

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


http://www.caresfoundation.org/productcart/pc/EMS/Flyer.pdf

Non-Green States => Preventable Deaths



Solu-Cortef Emergency Medical Response

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. 

Take action! CARES Foundation tells us how.

We have a long way to go before these states are all green. So, let's all get started and help our friends. -M





Wednesday, December 4, 2013

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. "

Southern Nevada Health District's Office of Emergency Medical Services 
& Trauma System gets it right.

Share this with your local EMS team.

RIP Sarah: Another Senseless Cushie Death




Sarah Thomas, 30, died six hours after EMS refused
to take her to the hospital oradminister her the life-saving Solu-Cortef injection.



Incompetent paramedics told dying woman:' You just have a tummy bug'


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



*****************



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."

**************

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