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JoAnn's Story

This is actually my mom's story. My mom has always been healthy with the exception of being overweight since childhood.

In April of 2000, on the way to my wedding reception, we were involved in a horrible car accident and she was nearly killed. After many, many surgeries to "put her back together" she never felt "right". In November 2002, she had back surgery and it has been down hill ever since. She feels horrible, has changed shape, has literally every single symptom of Cushing's including the diagnosis of Diabetes.

In August, she had an MRI for her back and the Radiologist noted a mass on her adrenal gland. I began resarching the possibilities and found Cushing's. I was alarmed at the number of symptoms she had and encouraged her to talk to her doctor. Up until this point she had always been told she needs to lose weight, that is her only problem. Her doctor told her that if she lost 20-30 pounds all symptoms would go away. I never understood what being overweight had to do with her skin being so thin that if her purse fell off of her shoulder her skin would tear and bleed terribly.

She talked to her doctor and she finally agreed to the testing though she was positive that there was nothing wrong, it was all in her head. She did one 24-hour urine collection and it was negative. She again told my mom that she needed to stop eating and gave her anti-depressants. I found this website and emailed MaryO. She suggested that I didn't give up and that I might try Dr. Friedman. He saw my mom on October 20th, diagnosed her and confirmed that her Cushing's is caused by a pituitary tumor. Her surgery is scheduled for January 3rd, 2004. Talk about action!!!

It has been years with no help, no interest and no compassion. I talked to her previous doctor and told her that she was absolutely correct, it was all in my mom's head, just in the form of a pituitary tumor instead of psychologically. In less than two months, she is on the road to recovery.

I can't believe the difference dealing with a doctor who actually cares. We are emailed lab results as soon as he receives/reviews them. The one time I had to page him, Dr, Friedman responded within 15 minutes...absolutely unheard of. We are thrilled and I can't thank Mary enough for the referral and the answer to an email, it saved my mom's life.

My mother is of the generation that listens and trusts her doctors. She doesn't question, she believes. I kept on, to the point of irritation and she finally gave in. She is grateful and so am I. If anyone can comment on the days after surgery, I would appreciate it.

Thanks again, Mary!

Stephanie Jones

Update, December 2007

I first posted my mom's story after finding this site and getting a referral to Dr. F in Los Angeles. He was absolutely wonderful and confirmed my mom's diagnosis with one look at her. Further testing confirmed that she did have a pit tumor, Dr. F referred to Dr. Shahinian for pit surgery in Jan 05. Her tumor had grown into her cavernous sinus so it was tough to get. Dr. S was very agressive and got more than most other surgeons would have attempted.

Mom started showing improvement immediately, which lasted about a month or so. Then it was on to the adrenal surgery. Originally scheduled for April 05 it was postponed because of her edema. Adrenal surgeon wanted to make sure that her heart was ok to proceed with surgery. She went through the entire battery of tests and everything was great. She joked that the rest of her might be going down the tubes but her heart was in great shape!

The adrenal surgery was August of 05. Soon after she ended up in ICU for 3 weeks because of Diabetic Ketoasidosis (sp?) DKA - the surgery just threw her diabetes out of wack. Then it was low cortisol, lethargic, apathetic, no appetite, had to start taking cortisol. From that point on it was up and down and then the Gamma Knife in April 06. Again, improvement, then set-backs, over and over.

During this entire time she was confined to a wheelchair because her poor little legs were so weak. When she was feeling better she would go to physical therapy and it helped. She was walking behind her wheelchair for short distances, really trying to improve. She never missed a beat, never let it keep her down, always got up and started her day with her hair done and make-up on....truly amazing.

We were scheduled to see Dr. F in November 06 to discuss what to do next, probably the other adrenal. That appt never took place.

At the end of September, after a full day Christmas shopping, going to her grandson's first Pop Warner football game, she went to watch her favorite football team, the Bakersfield Renegades, play. She has had season ticket seats for years and she insisted on sitting in her own seats this year, she wasn't going to sit in her wheelchair in the "handicapped" section any more. She made it down the steps to her seat with a little help. Watched the whole game, made fun of the campus security guards becuase of their funny hats, and had a great time.

On the way up the stairs she complained of severe pain, she never told anyone where the pain was. She had complained that her stomach had been acting funny all day but other than that, no complaints, she was fine. They helped her up the stairs and she lost conciousness in her wheelchair when they got to the parking lot. The campus security, the ones with the funny hats, performed CPR until the paramedics arrived. They took her to the nearest hospital and stabalized her. I received the call at about 10:30 and went straight there. No one could tell us what happened, didn't look like a heart attack, but they would do more tests.

Tests ruled out heart attack, stroke, blood clots, etc...just no reason that they could find. Her blood pressure was way up, then way down, after a few days they were trying to convince me to change her to a "no code" because "people die every day and we never know why."

I made myself perfectly clear and insisted that all avenues be explored before I threw in the towel, she would never have given up so soon if our roles were reversed. They finally determined that it was Congestive Heart Failure and confirmed that she had sustained brain damage. I knew then that it was time to let her go. With all of her loved ones by her side, we had the ventilator removed and she let go. Not without a fight though, no, not JoAnn...her heart stopped beating and started beating again five times. If I didn't have so many witnesses people would think I was nuts. I just pictured her in the tunnel making the transition and her looking toward the light saying, "Hold on just a minute, I'll be right back..." Until she was told it was her last chance. She was such a fighter.

My struggle, besides the obvious, is that with all of my research, the fact I diagnosed her, everything I did, with all of the cardiac testing, how could it be her heart that killed her? I just don't get it. If I would have even known that that was a possibility I would have done something. I know that it was probably "just her time" but it makes me nuts.

Her funeral was exactly three months ago today and it seems like seconds ago. I am so happy that she died peacefully and that she was doing what she loved when she went, but the unanswered questions truly haunt me. I miss her so much, I never knew how I could live without her and I still don't. I am very lucky to have a wonderful husband who loved her almost as much as me and friends that are supportive too.

I really appreciate the information that I received from Mary O and the referrals, without that we would have spent the last two years battling with Drs trying to give her anti-depressants and telling her she was eating too much. At least we had her as long as we did, but, it just wasn't long enough for me

It is so strange to me, I know she didn't know she was going to die but I have to wonder if she felt something or thought just maybe...she was finished with her Christmas shopping, she had organized every drawer in her house, every cupboard, every closet, cleaned out the filing cabinet, redecorated, etc. Just like she was nesting. She was such an incredible woman.

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