CSRF Members' Letters - In Memory of …

Code: 901, Date: June, 2004
My Mother's Story: At age seventy-seven, my mother, Mary Monderine Tursi passed away on November 28th, 1998 after suffering many years from Cushing's syndrome. First diagnosed at age seventy, the true cause of my mother's disease was never found even with all the tests and scans given. Her Cushing's syndrome was best characterized as episodic marked by varying degrees of the disease's intensity. She was given various medications and even had most of her Pituitary gland removed, but it never arrested the disease.

Up until the day she died, my mother showed the heart of a lion as she suffered through her pain. She would always try to stay optimistic and never let her children know how much she was suffering. She was the kindest most loving person I will ever know. She touched others lives and was loved by so many. I know she has been reunited with her family and friends in Heaven, free of suffering, and shining down on those she loved.

Hopefully someday there will be a cure for Cushing's whereby no one ever has to suffer like my mother did. My love and prayers are with all Cushing's patients and their families. God Bless you all.

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Date: Fall, 2002
My father was diagnosed with Cushing's on July 25th of last year. He was very active with camping, ballroom dancing, and walked 4 miles a day. He was very conscience of his health and ate a healthy diet.

He hadn't been himself since the previous Christmas, and while visiting my sister in Texas, couldn't do the usual morning walk because of fatigue. He had gastric problems in the spring; the colonoscopy came back clear but the endoscopy showed some ulcers. He was also diagnosed with a bacterial infection in his stomach, which was probably caused by eating in Mexican restaurants! He developed thrush, which his doctor was treating with yogurt. His high blood pressure had been controlled for years with medication. His stomach began to get big and he complained of being tired and weak in his legs. He had many, many bruises on his arms, like he had been mugged with a poker!

In July, his feet and legs were swollen from his knees to his toes, like elephantiasis. His face was pudgy and he could hardly get upstairs to his apartment. On July 25th, my sister and I went with him to his appointment. That's when we were told he had Cushing's.

My good friend (a cardiologist at UAB here in Birmingham, Alabama) was instrumental in getting him seen by an endocrinologist. My dad lived with me and then with my sister over the next month. After much testing, a tumor on his pituitary was found. He was getting weaker and having difficulty walking. He was referred for nuclear testing for severe back pain in August. He had crushed two vertebrae. The petrosal sinus sampling was negative for pituitary involvement.
They prescribed ketoconazole that helped to lower his cortisol but could only increase it to 600 mg as it began to affect his liver. They added cytadren and increased it to the point that he was so sleepy, he couldn't eat. They also began some physical therapy. He was admitted to a rehab facility on September 4, but was soon discharged. He could no longer participate in the rehab because of the side effects of cytadren. From there we had to place him in a nursing home. They reduced his cytadren and continued with physical therapy.

He was getting a little stronger. His cortisol was still high. At each visit to the endocrinologist, he would adjust the medication and take a cortisol reading. He developed a rather large lump at his tailbone, the size of a fist. Surgery was discussed for the bilateral adrenalectomy but the surgeon did not want to operate because of the risk of pneumonia. On his November 9th visit to the endocrinologist, my dad was admitted to the hospital because of his breathing. They found a blood clot in his lung and one in his left leg. He was given an IV blood thinner, and his cytadren was increased. My sister and I consulted with the endos and decided to aggressively lower his cortisol with medication. He was released back to the nursing home. He was not given proper care. I truly feel that the only nourishment he received was what we fed him during our visits. He passed away three days later. He was 75.

We think he had Cushing's since the 80's when he developed problems with kidney stones. Then in 1998, he had a CT scan that showed a "mass" on one of his kidneys. It was scanned again three months later, and since it had not changed, it was dismissed.

This disease is so hideous. It took a man who would have easily lived to his 90's and killed him in five months time. The way my father was debilitated and suffered, I have to wonder how anyone survives this disease. I have read on a Cushing's-Support message board that some people live with this for years. I believe my father's age prevented him from ultimately recovering. I pray for all of those suffering with this disease.

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Fall, 2002
Isn't it strange how the human race can become instantly connected when a common "thread" of illness is involved? Isn't it strange that thanks to the Internet and emails, you can actually feel the friendship of someone you've never met before? I'd like to share my very special friend with you. I've never met her, have never seen her, not even a picture. But her very presence is with me even now.

Her name is Billie. I remember reading her three page history of her experience with the different doctors, and yes, those who denied she had Cushing's. But something about her story gave me the feeling that she really needed help from me. I try to help everyone, but you know that feeling you get when you've got to stop what you're doing and help this person.
I called her one night to talk about her difficult journey in getting diagnosed. Her doctor was in denial that Billie had not met ALL the criteria for Cushing's. But knowing my own personal story and hundreds of others, you can have Cushing's without having every symptom listed in the journals! I encouraged her to continue her quest for this diagnosis and gave her information for what to do next.

It seemed she was on the right track, but then developed a blood clot, which delayed her surgery for months. She was able to spend some time in Florida with her son and was happy to be there. Upon her return in February, she was scheduled for more testing for Cushing's and possible surgery. It just seemed that her body wasn't strong enough to go on. She passed away last month.

I want you to know that even in death, we can be thankful for life. Billie will always be a part of me, and her spirit lives on. I am a better person for having known her, for having helped her during her battle, and for sharing in this loss. It's such a privilege to help people who are facing this disease. I'm sharing this with you so you'll understand that sometimes life is a battle, but those of us who have kicked this disease can sit back and thank God for His blessings and those who have touched our lives.

Summer, 1999
My mother, Mary, sadly passed away on November 28, 1998, after suffering many years with Cushing's syndrome. It is important that I let all know of my mother's courageous battle with this disease, which should serve as an inspiration to us all.

My mother was one of eleven children. Growing up on a farm in West Virginia, my mother worked hard helping her parents with the many chores of farm life. This strength my mother gained was evident throughout most of her life.
Up until seventy years old, my mother was relatively healthy. As my mother always said, God gave me seventy years of good health. Her main health concern was arthritis that never really interfered with her life. Three years before my mother was diagnosed with Cushing's, my family suffered a crushing tragedy. My nephew, who was ten years old, died tragically after being struck by a car. This severe grief, I truly believe, is what caused my mother's Cushing's syndrome to eventually become full blown.

My mother's illness became evident after age seventy. After being hospitalized six months earlier for what appeared to be heart problems, my mother developed full-blown Cushing's syndrome in early 1992. Though she had the typical moon face, hirsutism and emotional lability, I did not know what she had until Cushing's was finally diagnosed. During her one month hospital stay in February of 1992, my mother received a battery of blood tests, CAT scans, MRI's and a petrosal sinus catherization. No cause was found. She was started on Nizoral that appeared to control her disease.
During the summer of 1992, she became dizzy and fell. From this point on, my mother's quality of life was never the same. In November she had over 95% of her pituitary gland removed in an attempt to cure her Cushing's disease. No tumor was found and she was not cured. Her Cushing's spiraled out of control and she was hospitalized again in January of 1993. After nearly dying, my mother's Cushing's spontaneously went into remission.

From January of 1993 to the day she died, November 28, 1998, my mother experienced episodal Cushing's. She continued to have numerous blood tests, CAT scans and MRI's in an attempt to find the cause of her disease. No documented cause was ever found. During this period, her quality of life and overall health gradually deteriorated. She suffered from dizziness, severe neuropathy that limited her ability to function normally. When most people would have given up on life, my mother kept fighting and always maintained her trademark smile.

After the affects of developing a staff infection in March of 1997, she was confined to a wheelchair and walker suffering from a collapsed hip and severe arthritis in her shoulder.

Up until the day she died, my mother showed the heart of a lion as she suffered through her pain. She would always try to stay optimistic and never let her children know how much she was suffering. She was the kindest, most loving person I will ever know. As her mother had imparted to her, my mother taught me to always do good for others and forget about it. She touched many lives and was loved by many. I know she has been reunited with her family and friends in Heaven, free of suffering and is shining down on those she loved.

My true wish is that no other Cushing's patient will ever have to suffer again like my mother did. Hopefully someday there will be new treatments and cures for all forms of Cushing's. My love and prayers are with all Cushing's patients and their families. God bless you all.

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Summer, 1999
Let me start at the beginning so that you can see the total picture. On August 16, 1995 my wife pulled a couch away from the wall and injured her back. The following day the pain was so intense she went to a doctor. He gave her a shot and told her it was for pain and to come back in three or four weeks if the pain had not stopped.

On September 17, 1995, my wife and I returned to the doctor's office. She was still in extreme pain. Once again, a shot was given, but this time it was right in the muscles of her back. He said it was for pain. It did not help and on September 25th, we went back. He gave her another series of shots in her back.

We were ready to give up. The pain only became worse and other things started to happen. Prior to the first shot, my wife weighted 140 pounds and she was a former Vice President of a large real estate company.

After four months had passed and the pain had not stopped, we started to investigate the doctor and learned that he was on probation for several things. My wife started to gain weight even though she was on a meal plan. Her blood work started to go nuts and her blood sugar was rising. Her triglycerides skyrocketed out of control along with her cholesterol. By January of 1996, she weighed 195, her blood sugar was over 200, her triglycerides topped out at 1300 and cholesterol was almost 400.

We had been to thirteen doctors but they could not tell us what was wrong. We finally found a doctor that told us about Cushing's syndrome. We obtained my wife's records and learned that the three shots he had give her were:

1. over 800mg of depo medrol
2. 80 mg dexamethasone
3. 240 mg of acthar
4. a shot that he never revealed what was in it

In short, he almost killed my wife and he certainly ruined her life. Now, three years later, my wife
is totally disabled. It has been a rough time. She almost died from adrenal suppression due to the large overdose given by the doctor. We found out that he had 18 judgments against him and he had no malpractice insurance.

My wife has been in the hospital two times and our medical bills have reached over $60,000, which we have had to pay out of our pockets. My wife sufers from diabetes, fibromyalgia, angina, chronic fatigue, short term memory loss, hyperlipidemia, muscle wasting and loss. We just found out that all her teeth need to come out.

Needless to say, we are both very discouraged and we do not see the end of her medical problems. Now the reason I wrote to you is to tell you her story. Before the steroids, my wife was a happy intelligent human being. Now she can't even remember our home phone number much less do anything productive. She was always on the go, now she is bedridden and has to depend on me for everything.

Note: Wanda struggled for several more years with Cushing's symptoms that never resolved and she passed away.

Summer 1996
In 1992, I had surgery to remove my right adrenal gland due to a malignant tumor causing my Cushing's. In November 1995, I was re-diagnosed with Cushing's. Very recently, I had some tumors removed from my lungs that were not malignant. They did find that I have a non-contagious form of TB, and it is questionable whether these tumors were the source of my Cushing's. My emotional state is fragile at best now. I try to be positive and do as much activity as I can physically, especially things that bring me pleasure like painting, gardening, and playing bridge. Note: Helene struggled with Cushing's until the spring of 1999 when she passed away.

Summer 1996
I had transsphenoidal surgery to remove a pituitary tumor in July of 1992, and my recovery is still not complete. I have many major health problems that I can't help but wonder if were caused by having Cushing's for 10 years before being diagnosed. I gained about 150 lbs. in 10 years for no reason, and had every medical test available. In 1991, my doctor wanted to have my jaws wired shut so I wouldn't eat. The depression was so intense that it hurt. No one understood this fat lady. I could not work full time, and could barely do part time. I feared I was going to die and be buried in a grand piano. A wonderful female OB/GYN persuaded my internist to look for Cushing's. To make a long story very short, the day I was diagnosed, was the day of my wonderful father's funeral. He worried so about my weight and felt helpless. He never knew why I was so sick all the time. I will never be able to forget that. I found a wonderful endocrinologist and now every year, I speak to medical students at Dartmouth College. It's better than a psychiatrist. I am a nurse, and many doctors fell very bad that they did not recognize the Cushing's in me. Note: Zebby spent a number of years helping others with Cushing's. She struggled courageously with multiple recurrences of Cushing's and passed away.

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Summer, 1996
I had both of my adrenal glands removed in January of 1996 due to bilateral adrenal hyperplasia. I am recovering well, but would be interested in corresponding with others who are living with no adrenal glands, particularly anyone who is managing diabetes at the same time. I would also be interested in the experience of others in obtaining medical insurance. Has anyone been accepted into a group plan, or have people been turned down? Certainly this would be of concern for all of us who have had Cushing's. Could the CSRF be instrumental in contacting insurance companies? Since I am 60, I would be particularly interested in AARP. I apologize in advance if I don't respond to letters quickly, but I am still recovering and will write as soon as I am feeling better. Note: Lynn, who was so willing to help with the CSRF, never did recover and was never able to help with the CSRF. She passed away very suddenly not long after her surgery.

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Pituitary Tumor
Adrenal Tumor
Bilateral Adrenal Hyperplasia
Ectopic
Under 18 at Diagnosis
Male Members
Steroid Medications and Undiagnosed
Cyclic Cushing's
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