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In Memory: Bettye Jean Douglas, September 28, 2016

September 28, 2017

MaryO In Memory, Korlym, Pituitary, Treatments , , , , , Leave a comment

Born:  March 30, 1938

Passed:  September 28, 2016

Bettye Jean Douglas, age 78 of Smyrna, Tennessee, died Wednesday, September 28, 2016 at her home. She was a native of Hickman County, Tennessee, and was preceded in death by her first husband Carl Jenkins, and parents James McKinley and Susie Louise Lampley Wright, and siblings, Marie Wright, Pat Nichols, Nellie Tidwell, and Jessie Wright. Mrs. Douglas was a member of Rural Hill Church of Christ and had worked at Ingram Books.

She is survived by her husband, of 23 years, Wendell Douglas; children, Christopher Jenkins and wife Gina of Murfreesboro, Charmaine Herron and husband Steve of Mt. Juliet; step-children; Danna Douglas of Whites Creek, Wendy Morales of Whites Creek, and Kellye Douglas of Whites Creek; grandchildren, Isabella, Matt, Ben, Chip, Gino, Kendell, Jonathon, Michael; great- grandchildren, Steven, Bently, Austin, Gavin, Taylor, Gracie; brother, Billy Ray Wright of Kentucky.

Bettye’s funeral service was held at 10:00AM Saturday, October 1st, 2016 at Woodfin Chapel, Smyrna, Tennessee. Brother Gary Hale officiated. A graveside service followed at 2:00PM Saturday at Five Points Church of Christ Cemetery in Bon Aqua, Tennessee.

Born March 30, 1938, Bettye was tall and thin all of her life, and as beautiful on the inside as on the outside.  Bettye was a beautiful Christian woman.  She loved to laugh and loved a good joke.  She was all about her family and loved family gatherings.  She also loved to travel.  Her favorite vacation destination was Hawaii.

Bettye had two best friends, other than her beloved husband. Gina, her daughter-in-law, and Charmaine Herron, her daughter.  Her daughter Charmaine joked that they were a mix between Charlie’s Angels and The Three Stooges.  No matter what they were like, they had a lot of fun together.

More than anything or anyone, Bettye loved her Lord Jesus Christ.  Bettye passed away due to complications of Cushing’s disease.  Once she was finally diagnosed, a decision was made against surgery and Bettye was put on the cortisol-lowering medication Korlym.  Though she had initially gained weight from Cushing’s disease, as many patients do, she rapidly lost weight and was admitted into hospice care soon after.

Most cannot find the words to describe what Bettye went through during her last months on Earth.   To those left behind, the pain is almost unbearable, but those that loved Bettye find comfort in the knowledge that her health nightmare is over and that Jesus has her now and forevermore.

Credit to Woodfin Chapel and Charmaine Herron

Irene, Pituitary Bio

September 28, 2017

MaryO Pituitary, Pituitary Surgery, Treatments , , , , , , , , Leave a comment

FOR Irene Fox, everything seemed to go wrong all at once. It was 1999 and she thought her life was falling apart. She felt her relationships had deteriorated.

Her face and stomach became bloated. Meanwhile, her arms and legs became very thin. Her blood pressure was extremely high. The sunlight irritated her eyes.
One day the mother-of-two from Bray, Co Wicklow, lost the use of her leg. Then she started falling. “I was losing power in my arms and legs,” she recalled.
Irene was 47, so, she reasoned, maybe it was just the menopause. But she went to the doctor and found out that it wasn’t. She was sent to St Columcille’s Hospital in Loughlinstown for a battery of tests which went on for more than two years.
In 2002 Irene was diagnosed with Cushings Syndrome, following an MRI scan. It emerged that a tumour on her pituitary gland was causing an excess production of cortisol, the stress-relieving hormone. She had an operation in Beaumont Hospital in August 2003.
“Before the operation I couldn’t walk for more than a few stops before falling down,” she recalls.
Irene’s condition did not improve following the operation, however. She discovered she was unable to keep any food down. In October she collapsed and was brought back to Loughlinstown where she stayed until January 2004.
“I was in intensive care for two weeks and then in the general hospital for 10 weeks.”
Irene, now aged 59, was told she had to increase the amount of steroids she was on.
“I take hydrocortisone and I wear a hydrocortisone bracelet to inform people that I take it.”
These days the mood swings are gone and her eyesight is better. “I walk with a stick but I don’t fall any more — the symptoms were caused by the tumour on the pituitary gland. I’m told that it affects different people in different ways.”
There should be more public awareness about the pituitary gland and its functions, she says.
“I feel there should be more awareness of the pituitary gland and what can happen if anything goes wrong — it’s one of these things that people just don’t seem to know much about.”

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Faith’s Husband, Pituitary Bio

September 28, 2017

MaryO Male, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , Leave a comment

 

My husband has Cushings, has had 2 pit surgeries, radation, and is still not any better.

We go to MGH Boston, love our endocrinologist, just wish we would see progress.

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Christine G, Pituitary Bio

September 13, 2017

MaryO Fibromyalgia, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , 3 Comments

It took approximately 6 years for me to be diagnosed with Cushing’s Disease. I have had many unrelated illnesses up to that point, Congestive Heart Failure, FMD, Gallbladder Removed, problems with vision, high blood pressure, weight gain, problems with balance and more.

No doctor could figure out why the weight gain only in my belly. All were prescribing different diets.

My husband and I were on vacation for a month in Florida every morning and afternoon I would walk on the beach 3 miles each time and my belly kept getting bigger???? My husband saw an article on excessive cortisol and how it was a stress hormone and that excessive cortisol expanded your belly!

My daughter had a friend who was an endocrinologist, I made an appointment to see him when we got home. At first sight the doctor said I do not believe you have “it” but to appease you I will test you. To this day I do not believe he would have tested me if he was not friends with my daughter. I did not have any of the typical signs. Non of us is textbook, we are all individuals.

To the doctors surprise testing came back positive for Cushing’s Disease the doctor said that he would have to send you to someone more familiar with Cushing’s and he sent me to Mass General. I met with a Dr. Tritos who once again said I did not have the typical signs and I was retested. Yup it was Cushing’s. I met with a nurosurgeon at Mass General, Dr. Sweringen, who had extensive experience in Cushing’s surgeries.

My insurance company denied my out of network coverage. I saw a few doctor’s locally and did not feel comfortable with any local surgeons because of the lack of surgical experience with Cushing’s Disease. I began my battle with the insurance to have the out of network covered. I was first rejected by the insurance company, I then appealed with Maximus (second step in process) and was rejected. During this time my health was deteriorating, I had double vision and could no longer drive, I needed to hold onto someone to walk because I had become so unsteady. My family was worried because they had read that the longer you waited for surgery chances were less likely for a full recovery. My daughter gave me the money for the surgery which I had at Mass General on November 16, 2016 by Dr. Sweringen, who is fantastic! I had successful Pit surgery.

After surgery I continued my pursuit in getting the money back. I went to the next level, the applet judge……This time I won, with the help of my local endocrinologist, Dr. Busch and documented proof of Dr. Sweringens exceptional expertise in Pituitary Surgery.

Now almost 10 months later, I am very surprised that I still have muscle weakness and joint pain. When I mention this to doctors they do not believe it is Cushing’s related, even though when you go to the Cushing’s Facebook support group people mention this. I am wondering how many others have this problem 10 months post op. I still have trouble getting out of a chair.
What is so sad you are not told about the post op obstacles you will face.

I think that all of us facing this disease have to give ourselves credit for the strength we have and have to continue having to battle this disease, and to appreciate our support of family and friends.

 

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In Memory: Cassandra Dills-Dailey ~ August 29, 2017

September 6, 2017

MaryO In Memory, Pituitary, Pituitary Surgery, Treatments , , , , Leave a comment

 

Casey Dailey, age 38, 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.

In the midst of Hurricane Harvey, one family’s cry for help was particularly acute. It was a medical emergency.

Casey Dailey was recovering from surgery at home and needed an ambulance on Aug. 27.

But floodwaters had reached the doorstep of her northeast Harris County home between Greens Bayou and Sheldon Lake.

Her husband, Wayne Dailey, frantically called 911 that afternoon. The line was busy. He dialed more than two dozen times and got through. Help was on the way, he was told, but no one showed up that day or the next.

“That’s when I went to social media,” said Darlene Zavertnik, Wayne’s mother, who lives in Montgomery County. “I went on Facebook and put together a letter.”

Friends and relatives began sharing the post. A cousin called volunteers while Wayne tried 911 one more time and asked for an air rescue. He was told that they were already on the list.

“You don’t understand. She’s dying,” Wayne Dailey recalls saying.

Feeling completely hopeless, he saw some people trolling in a boat just after noon on Aug. 29. Wayne ran out in the water to flag them down. The crew turned out to be the famous civilian volunteers from Louisiana’s Cajun country.

“They came to the house and they got her in that boat,” Zavertnik said.

The Cajun Navy transported Casey Dailey to an airboat. From there, she was loaded onto a dump truck. Confusion about emergency medical sites led to a stop on the side of the road, which is when she stopped breathing, relatives said. An ambulance finally arrived and paramedics worked on her 15 to 20 minutes.

“They got her to the hospital and they just could not …” Zavertnik said, her voice trailing off into sobbing. “We just don’t want anything like this to happen to anybody like her again. There has to be a much better system for this.”

The Harris County Institute of Forensic Sciences recorded 4 p.m. Aug. 29 as the time and date of Cassandra Dills-Dailey’s death at a Humble emergency room. One week later, the cause and manner remains pending. She is not listed among the institute’s storm-related deaths, which all involve drowning or electrocution in floodwaters.

Casey Dailey was 38. The devoted mother had two sons, 14-year-old Luke and Ronnie, 10. She homeschooled the oldest.

She also reached out with kind gestures, such as crocheting baby blankets for strangers who were expecting.

“She was probably one of the sweetest, most loving people you’d know,” Zavertnik said. “She was just always wanting to do what she could to help people, make them happy and make them feel good. She was very special.”

Adapted from http://m.chron.com/about/article/Mother-of-2-dies-in-Harvey-during-medical-12175042.php#photo-14053540

Travelling with Growth Hormone (Flying): MaryO

September 4, 2017

MaryO growth hormone, Growth Hormone Deficiency, MaryO, Other Diagnosis , , , , , , , , 1 Comment

This is from another blog post here.

Just after 3:00 pm Friday August 25, 2017 we took an Uber to Dulles Airport

Going through TSA there was no issue with my refrigerated growth hormone injections.

The Omnitrope was in its own case from the manufacturer.

I put that in that new iCool weekender case I’d bought for this trip.  I chose this one for these reasons:

  • For vials or pens (insulin, growth hormones, L-Thyroxin, polyarthritis medication)
  • Keeps your medication between 36°F – 46°F (2°C – 8°C) for 12 hours (I knew this trip would be about 20 hours, start to finish)
  • The iCool bag uses a new generation of chemical gel pack that generates very little condensation and have a slower thawing period than traditional ice packs. This allows patients with diabetes or those using temperature sensitive medications to transport their medications for a longer cooling period. The iCool Weekender keeps insulin or other temperature sensitive medications cool for up to 12 hours at 36°F – 46°F (2 to 8°C). This bag can carry either pens or vials. There is enough space inside to store needles.

I had the gel pack from the iCool frozen solid and put that in a small Rubbermaid lunch bag with 2 thin ice packs,  1 on top and 1 on the bottom.  If you don’t want to read all the way to the end, this system kept the growth hormone cold for the 20 hours going and returning but the 2 thin blocks had completely thawed.  The inner iCool was mostly frozen and the growth hormone was still cool.

Hooray!

I had the sharps separately in a little square container with just enough for the week.  I used the side pocket of the lunch bag to store my doctor’s note and clipped the whole thing with a carabiner to my backpack.

I also found a smallish sharps disposal container, although this was still kind of big for my needs, it was better than taking the whole huge one that’s in my bathroom.  This worked well and I have enough for 5 more trips 🙂

And that’s about it for medical information, at least until we get to Heathrow 🙂

…

Then, since we were coming from outside the UK we had to leave security area and go through TSA again.

I told the agent I was carrying refrigerated medications and she read the doctor’s letter.  Everything seemed like it was going well until I was flagged for more screening 🙁  I had to take all the stuff out of my carefully packed Growth Hormone bag and everything else was taken out of my backpack to be swabbed down.

…

After 20 hours at 4:15pm  (11:15 am at home) I finally removed the growth hormone from the cases.  The 2 ice packs had melted but the GH in its weekender case was still cool and that gel pack mostly frozen.  A good solution except for issues at Heathrow.

In Memory: Dr. Edward Hudson Oldfield, September 1, 2017

September 1, 2017

MaryO In Memory, MaryO, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , 1 Comment

Dr. Oldfield was MaryO’s surgeon at the NIH November 3, 1987.  This was back in the olden days of transsphenoidal surgery.  I honestly expected to die but this man saved my life.

Dr. Edward Hudson Oldfield quietly passed away at home in Charlottesville, Virginia, surrounded by his family on September 1, 2017.

Born on November 22, 1947, in Mt. Sterling Kentucky, he was the son of Ellis Hudson Oldfield and Amanda Carolyn Oldfield. Ed is survived by his wife of 43 years, Susan Wachs Oldfield; a daughter, Caroline Talbott Oldfield; three siblings, Richard Oldfield of Mt. Sterling, Ky., Brenda Oldfield of Lexington, Ky., and Joseph Oldfield (Brenda) of Morehead, Ky.; nieces, Adrienne Petrocelli (Phil) of Cincinnati, Ohio and Keri Utterback (Brad) and nephew, Gabe Oldfield, both of Mt Sterling. His parents and a sister, Bonnie Lee Cherry, predeceased him.

Dr. Oldfield attended the University of Kentucky and graduated from the UK Medical School. He completed two years of surgical residency at Vanderbilt University and spent a year in Neurology at the National Hospital for Nervous Disease in London, England, before completing his neurosurgical residency at Vanderbilt University. After a year in private practice in Lexington, he completed a two-year fellowship at the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health in Bethesda, Md.

In 1984, he was named Chief of the Clinical Neurosurgery Section at NINDS and from 1986-2007, he was the Chief of the Surgical Neurology Branch at NIH. He joined the Department of Neurosurgery at the University of Virginia in 2007 where he held the Crutchfield Chair in Neurosurgery and was a Professor of Neurosurgery and Internal Medicine.

He led multidisciplinary efforts in the treatment of pituitary tumors and contributed to the research program in Neurosurgery at UVA. He often said it did not feel he was going to work because he so enjoyed every aspect of his career.

Dr. Oldfield was the author of over 500 original scientific and clinical contributions to medical literature and the co-inventor of patents on convection-enhanced drug delivery and genetic therapy. He served on the editorial boards of Neurosurgery and the Journal of Neurosurgery, where he completed a term of eight years as associate editor. Dr. Oldfield served as vice president and president of the Society of Neurological Surgeons (SNS). He received numerous awards including: the Public Health Superior Service Award; the Grass Medal for Meritorious Research in Neurological Science; the Farber Award; the Distinguished Alumnus Award, University of Kentucky Medical Alumni Association; the Harvey Cushing Medal; and the first annual AANS Cushing Award for Technical Excellence and Innovation in Neurosurgery.

In 2015 he received the Charles B. Wilson Award for “career achievement and substantial contributions to understanding and treatment of brain tumors”. A man of many interests and endless curiosity, Ed found joy in exploring the world around him with a great appetite for adventure, as long as it included variety and history. He preferred outdoor activities, and throughout his life enjoyed hiking, bird watching, photography and especially fly fishing, which provided the kind of peace he treasured in his limited free time. Learning was a priority in every activity. Ed was interested in genealogy and maintained a precise record of his family history, spending over a decade accumulating and scanning family photographs. It was important to him to know from where and whom his family originated. Though he loved to watch sports, especially the UK Wildcats, he did not always follow a particular team he cheered for the underdog.

His love of music was vast, from Arthur Alexander, Etta James, John Prine, Luciano Pavarotti, Van Morrison and Iris Dement, to name a few favorites. Friends and colleagues remember his gentle southern voice, particularly in his advice, “All you have to do is the right thing; everything else will take care of itself.” His family will remember him loving Shakespeare productions, a good barbecue sandwich, Ruth Hunt candy bars, a warm fireplace at Christmas and several beloved dogs.

A Memorial service was held on Monday, September 25, 2017, at the University of Virginia Alumni Hall at 4 p.m. In lieu of flowers the family requests donations be made to Edmond J. Safra Family Lodge at National Institutes of Health, Hospice of the Piedmont, or Piedmont Environmental Council.

From http://www.dailyprogress.com/obituaries/oldfield-dr-edward-hudson/article_3bb9df83-d223-5d26-81f4-cfd4565ee0c6.html