Showing posts with label death. Show all posts
Showing posts with label death. Show all posts

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

UPDATE (10/17/2018). The New York Times released this story recently about Casey's death after her adrenalectomy on the one year anniversary of Houston getting hit by Hurricane Harvey. It is gut-wrenching. I cried the whole time I read it. Casey should be here with us. Her death was preventable.
As post op Cushies, we have to ask ourselves: Are we prepared for all of life's unexpected emergencies? Do we have plenty of cortisol replacement, hydration drinks, Solu-Cortef vials and syringes?

Right now, we have to BLA sisters Michelle and Kelly are fighting to stay healthy after Hurricane Michael absolutely obliterated their communities near Panama City Beach, FL. They are living without water and electricity, in the Florida heat, as patients who are steroid dependent. They are struggling but they were prepared with extra medicine.

When we tell you that you must be prepared in an emergency, we mean it. We don't want to lose you. Please promise us that you will take care of yourselves.

Originally published on 9/6/2017
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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."


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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 (adrenalectomy) 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.

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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. 





Tuesday, November 27, 2012

Cushies can die after exhausting all treatment options


This makes me incredibly sad.  I have had two unsuccessful pituitary surgeries, and I am currently doing medication therapy (pm ketoconazole with am Cortef) until the tumor culprit comes out of hiding and presents itself on the pituitary MRI for a third pituitary surgery.  No one knows how long that will take.

After my first pituitary surgery, I developed ptosis, or drooping eyelid.

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Cushing’s: the worst case scenario
Viv Thornton-Jones

Churchill Hospital, Oxford, UK.
Endocrine Abstracts (2008) 15 S58


We present the case of a 40-year-old female who was referred to our Department in 1993, for further management following the diagnosis of Cushing’s disease. She proceeded to a transsphenoidal adenenomatectomy (TSA, note: pituitary surgery) which resulted in a biochemical cure.

In 1998 she presented with recurrence of Cushing’s Disease, which was managed by a 2nd TSA (pituitary surgery) followed by external beam irradiation.

Bilateral adrenalectomy followed a year later, due to the inability to control her disease.

In 2001 she presented with Nelson’s Syndrome managed by a 3rd TSA (pituitary surgery) followed this time with Gamma Knife surgery.

In 2004 she presented with manifestations consistent with recurrence of Nelson’s Syndrome and proceeded to a 4th TSA (pituitary surgery). 

Despite the risk of blindness, the patient agreed to a second course of Gamma Knife treatment for the possibility of tumour control.

Over the next 2 years her clinical picture deteriorated, resulting in a right partial ptosis and a sixth nerve palsy.

She was referred to an Oncologist who offered her Chemotherapy, but she refused treatment.

The patient was then in the care of the Palliative Care Team and she died peacefully at home in 2006.


Endocrine Abstracts (2008) 15 S58


Thank you to Ami and MaryO for finding this abstract.

Sunday, April 1, 2012

Day 1: Cushing's on my Mind



There is no real way to explain how devastating Cushing's is to a patient unlucky enough to suffer from high cortisol. In nearly four years of blogging, I find that this word cloud I made does the best job so far. 

Click on the image to enlarge it.

Yes, it is really this bad, and isn't that so sad for me and other Cushies.
  
I can’t believe I have lived in that cloud for over 60 months now. To be a patient suffering with Cushing’s is to feel and experience all that word swirl of emotion and more. That word cloud isn’t just my disease. Cushing's is the monkey on my back that I cannot shake. Hours and days, then months and years pass without feeling better, looking better, or being better.  When the days carrying moments of relief arrive for a short surprise visit, I am pleased. Looking back, I realize the strength I have in just walking through it, never seeing any light at the end of the tunnel.  May I and the many other Cushing’s patients continue to find the strength to keep going.

Cushing's has altered who I have become, but I can't let it change who I can become anymore.

Friday, October 29, 2010

RIP Janet

Rest in peace, dear Janet.

My heart breaks for Jennie, Janet, and their entire family. I am sorry for your loss, and I am sorry that the medical community failed your family.

Thank you Jennie, for sharing this story. In your honor and hers, I will share this story here on my blog, in hopes of saving someone's life.

The Cushing's community *must* continue to generate awareness for this devastating disease, and we must lead the medical community by example.

No life should be lost to this preventable disease. ~mm
Jennie Whitehead Brick wrote:

My sister, Janet Whitehead Mitchell, died Sept. 16, 2010 of Cushing's Disease. The autopsy revealed that she had cancer of the pituitary gland. She is only the 140th person in medical literature to have cancer of the pituitary gland. She was 59 years old. She had many of the symptoms of Cushing's for a few years, but ...was diagnosed just a few days before her death. I will do what I can to spread the word about Cushing's in the hope that someone else will get diagnosed earlier on in their fight with the disease.

Click here and scroll down to see Janet's high school photo and click here to see the photo from her obituary.

Sunday, June 27, 2010

What You Must Know about Adrenal Crisis

I just found this page of VERY IMPORTANT information about adrenal crisis that Cushing's patients often face, either after pituitary surgery or after their adrenal glands are removed in a procedure called bilateral adrenalectomy, or BLA.

I am thankful to MaryO, the founder of Cushing's Help & Support.com and Cushie.com

This adrenal crisis page is a very informative for the patient, the caretakers, and emergency medical folks.  Many Cushies print this information and carry it along with their hydrocortisone and Solu-cortef (actovial) meds. They post the information on their refrigerators.

Be sure to read patient stories such as mom Jackie and daughter Sam's situation that went very, very wrong in Robin's post, Stars Go Blue. It brings tears to my eyes every time I read it.

This graphic from Sue explains it all, in a nutshell:

Tuesday, October 13, 2009

REST IN PEACE: 46 year old Bonnie lost to Cushing's

This blog post is posted from Cushing's & Cancer. Thank you for sharing this with all of us, MaryO.
I did not know Bonnie personally but she was an Australian member of the Cushing's Help message boards who rarely posted. 

She was only 45 at the time of her death October 12, 2009.  I've known far too many Cushies who have died far too young from this disease.


Bonnie's Before and after Cushing's pictures

Bonnie wrote July 1, 2009:
I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumor removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumor... on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don't know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those; from MM--Cushing's causes malabsorption of Vitamin D and calcium which can leads to brittle bones and osteoporosis ), as they made life so difficutlt and painful, but I also really hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, it's pretty hard to take.

As a single parent (divorced), life is very hard with Cushing's as you don't have anyone else to do the things for you that you can't do yourself, or help you with your own personal stuff.


Beth said it best on Facebook:
(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥


This blog post is posted from Cushing's & Cancer at Cushing's & Cancer.

Monday, July 6, 2009

DEATH BY CUSHING'S: Accidental death verdict on 40-year-old mum

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It is with a heavy heart that I share this story today about an unnecessary death, due to Cushing's. I send my most sincere condolences to the Richardson family and all those affected by Marie's passing.

This just shows that often MRIs miss teeny tiny tumors. Doctors were unsure if I had a pituitary tumor, although they agreed there was a suspicious area. During surgery, my neurosurgeon easily spotted the camera-shy tumor, which measured 3 millimeters or 0.12 of an inch. That's really small to wreak such havoc on the body. Dastardly little tumor!

If you think you have to waste, you are wrong.
If you don't fight to get yourself diagnosed and treated, then who will?
If not you, then who? If not now, then when?


~Cushie Melissa
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Accidental death verdict on 40-year-old mum

Published Date: 03 July 2009
By Garth ApThomas

A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.

Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumor.

It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasized: "This is not an indication of responsibility, blame or judgment.
"That is not my jurisdiction.

My very sincere condolences go to the family."

Page 1 of 1

* Last Updated: 03 July 2009 8:35 AM
* Location: Wrexham

Wednesday, July 1, 2009

CARDIAC PADDLE TO THE CHEST: A Letter from the Founder of the Pituitary Network Association

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I have found the Pituitary Network Association to be an incredibly helpful resource. For the undiagnosed, take this letter from its founder as a cardiac paddle to the chest. For the friends and family of the sick, understand the severity of this disease. It matters not whether you have heard about it before or not.


From Our Founder:

Greetings,

If you are just learning about pituitary tumors and the many associated problems and hormonal disorders let us start with a frank discussion of where you are: Pituitary Tumors, though described in some textbooks as "benign" can be very aggressive and can do irreparable harm. Some can even be lethal IF NOT PROPERLY TREATED!

Do not allow your physicians, or yourself or family to treat these tumors lightly or in a start and stop fashion. Get highly qualified professional help. As with cancer or heart disease, you need expert help, only. The last sixty years have been remarkable in pituitary endocrinology. In the 1930's for instance, Cushing's Disease was a death sentence; patients lived an average of 4.7 years after presentation of illness. In the 1950's, the five year survival rate was 50%. The cure rate for microadenomas today is approximately 90% and improving. Experts in Neurosurgery and Pituitary Endocrinology have so improved the cure rate in a mere 60 plus years that the general medical community, and certainly insurance companies and others, tend to think of Pituitary Disease the way they think of Polio. The threat is over and the scourge has left us. Sadly, with Pituitary Tumors this is not the case. Each and every patient has to be evaluated and "fought for" or the battle may be lost.

These tumors act and grow differently in every patient. A correct diagnosis and treatment plan is essential for the survival of many of us. Yes, clearly, in many they are slow growing and may cause little apparent outward damage. Regretably, many with so called "incidental" or "non-secreting" tumors often have symptoms which their physicians simply forget or are untrained to ask about. Sexual function, mental health, overall ability to function and fit in, are all vital aspects of our lives. The tumor may not "take" our life but may in fact change it to the point of lowering the patient and his or her family into a "living hell". Study, learn, seek expert help and join the PNA as we continue to bring you the REAL facts about these insidious diseases and their often fateful consequences.

We do not mean to alarm you, but in the past twelve years we have witnessed enough deaths and suffering to know with certainty that no one has the right to deceive you about the issues you face. We do not yet have ALL the facts, nor are we here to console you. We are here to inform and alert you about Pituitary and Hormonal disorders. If we help save your life and make it better, we have succeeded.

Good luck and God Bless.

Robert Knutzen, founder
Pituitary Network Association


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