Update on a story

While I did expect better news than what I got on Monday, I am still quite satisfied at this point. Dr. DeMeo felt I looked "awesome" and certainly the best he has EVER seen me-and that goes back about 22 years now and maybe longer. He even called in several nurses and other docs to "show me off!" 

While this was encouraging and very rewarding to hear that my efforts to gain weight have paid off, the bad news is that Dr. Sarr (the surgeon at Mayo) will not do surgery until I am between 110-120 pounds.

I am now receiving 4200 calories every day via my tube feeds so am hopful that by next appointment (April 19) I will be at an acceptable weight and the surgery plans can then be confirmed and we can get this "show on the road." 

It has been frustrating, yet understandable, since I am expected to lose close to 20 pounds in the recovery process. The extra pounds could mean the difference between surviving and not surviving the surgical process.

I am still optimistic that I will be well enough to attend Gregg and Liz's wedding in Vegas come August and of course, I look forward to that special dance with my son on his wedding day!

I certainly appreciate everyone's prayers, encouragement and support! I could not have done this (or continue to it) without that. My faith has been tested during this time but it does remain strong. Thanks to everyone and God bless!

Love,
Nancy

Despite disease, Ingleside woman refuses to give up (originally ran Decmber 17, 2009)

INGLESIDE – Nancy Kocher has goals that are not unlike the goals of her friends and neighbors.

Dancing at her son’s wedding and attending culinary school are among the goals the 19-year resident of Ingleside has set for herself.

But considering the obstacles she first must overcome – and the obstacles she already has conquered – reaching these goals would be a true testament to Kocher’s desire to survive and her will to live, her friends and family said.

Kocher, 52, has spent much of her life struggling with the effects of Stickler syndrome. The rare disease has left Kocher unable to swallow, in need of feeding tubes and on home health care for close to 20 years.

Despite these struggles, Kocher said she has no choice but to maintain a positive attitude on her future, however uncertain it may be.

Her goals, she said, are what keep her going when the outlook is bleakest.

“I have to have a goal,” Kocher said. “If you don’t have a goal you may as well give up.”

A life-saving surgery

Stickler syndrome is a rare, genetic disorder that slowly weakens the connective tissue that holds muscles and bones in place. As a result of the disease, Kocher suffers from hearing loss and poor eyesight, in addition to the need for feeding tubes.

Kocher has undergone numerous surgeries, including open heart surgery, to cope with the effects of stickler syndrome.

The surgeries have been enough to keep Kocher going, said her husband, Kevin. But they have not been able to ensure her a normal life without the pains associated with Sticker syndrome, he said.

“It doesn’t just take your health. It takes everything,” Kevin Kocher said of the disease. “It’s almost where I wake up, look over, and if she’s breathing I say, ‘Thank God.’”

Now, a life-saving surgery may be at hand for Kocher.

A couple weeks before Thanksgiving, Kocher and her husband were ready to take a trip to the Mayo Clinic in Rochester, Minn.

It was there that a doctor was prepared for a delicate operation, but one that could save Kocher’s life.

With the operation, Kocher was hopeful she would be able to swallow whole food for the first time in more than 12 years.

The surgery would require the doctor to remove a section of Kocher’s intestine and esophagus, while creating a new digestive track.

The necessity of the surgery is not something Kocher treads lightly around. Without the surgery, she will likely die from the effects of malnutrition.

“I have to have this surgery done one way or the other,” she said. “It’s got to be done or my only option is to go on hospice.”

But only days before the Kochers were set to leave for the Mayo Clinic, Nancy Kocher received a letter from her insurance company saying the surgery had been put on hold. It seemed the Mayo Clinic – the only place with the resources to conduct such a delicate surgery, according to Kocher’s doctors – was out of her network.

“I was devastated,” Kocher said. “I called [my husband] at work, and I was in tears.”

Holding out hope

Despite that initial setback, it now appears Kocher still has a shot at getting her life-saving surgery approved by her insurance.

After Jan. 1, 2010, Kocher is planning to travel to Minnesota with her husband for a series of tests. If the surgeon approves her for the surgery, he will submit a request to her insurance company to cover the costs of the procedure.

Throughout all the trials that have accompanied Kocher’s battle with Stickler syndrome, her family has constantly been at her side with a helping hand, neighbor Nancy Pedley said.

“They have been completely committed to her,” Pedley said. “Whatever she needs, they’ve been there for her.”

Strong prayer from her friends and family, along with Kocher’s strong faith, has allowed her to handle everything the disease has thrown at her, Pedley said.

After Kocher learned her surgery might not be covered by her insurance, an account was set up to give people the ability to provide assistance to Kocher and her family, Pedley said.

The money will be used for any expenses associated with the surgery – be they medical costs or travel expenses for Kocher’s family, which plans to travel to Minnesota for her surgery.

Prior to some of her other surgeries, the odds were against her survival, Kocher said. She has every intention of proving the oddsmakers wrong and surviving this one, too.

Her goals depend on it.

“I have to be positive,” Kocher said. “I don’t have a choice.”