The heart of a fighter: Dan’s story

After three heart surgeries, hospice, a stroke and heart transplant, rehab has helped bring Dan back on track to attend college

A long way from being placed in hospice at age 2. Dan, 19, graduates from high school this year.

A long way from being placed in hospice at age 2. Dan, 19, is planning to attend college soon.

The Pediatric NeuroRehabilitation program at Milestones is celebrating 25 years of service. Mary Foy shares how her son Daniel has faced numerous challenges in his life, but thanks to his time at Milestones, he’s preparing to attend college next year.

Many parents talk about the whirlwind of emotion surrounding the day of their first baby’s birth and our story was no exception. Within hours of experiencing the joy and excitement of finally meeting our firstborn, blue-eyed baby boy Dan, I learned he had a serious heart condition that could kill him.

Dan had what’s called hypoplastic left heart syndrome, a rare congenital heart defect that occurs when parts of the left side of the heart don’t completely develop. At four days old, instead of coming home, he was undergoing his first open-heart surgery at University of Michigan’s C.S. Mott Children’s Hospital.

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David’s story: Relearning the alphabet, how to walk and how to play after ischemic stroke at age 6

David Denman’s family was told he may never walk or talk again after a stroke in first grade. His family shares their journey through U-M’s Milestones

BlogDavidDen1This is the first of an eight-part blog series recognizing the 25th anniversary for both the Pediatric NeuroRehabilitation program at Milestones and MedRehab program

Two years ago, our son David was playing soccer, and he came off the field holding his head, saying he had the worst headache of his life. He collapsed, lost control of the right side of his body, experienced palsy and couldn’t answer us. I realized he was having a stroke and immediately called 911. He was six and a half years old at the time.

First responders said it was unlikely that David was having a stroke, but we insisted he be taken to a hospital for a CAT scan. David had had an ischemic stroke due to a blood clot. We think this developed from hitting his head during a neighborhood football game a few weeks before, but we are still not sure what happened.

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Chad Crittenden of Survivor inspires fellow amputees

Crittendon to deliver keynote at area's first limb loss even on June 21

The Limb Loss Event is June 21, 2014.

Click this image to register for the Limb Loss Event.

Chad Crittenden hopes that sharing his story helps people see that overcoming obstacles is a normal part of life.

The first amputee contestants on the TV show Survivor and diagnosed with synovial sarcoma, a rare and deadly form of cancer, Chad’s perseverance has inspired many. On June  21, he will bring his experiences to the area’s first-ever Limb Loss event.

The event, co-hosted by the University of Michigan Health System and St. Joseph Mercy Ann Arbor, features supportive sessions for amputees and their caretakers.

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Life after limb loss: Carla’s story

Carla was just a teenager when her leg was amputated. Today the active skier, bicyclist and outdoor enthusiast leads U-M’s amputee support group

carla3I began to dance at the age of 5, ballet and tap, then eventually jazz. I thought maybe one day I would be a professional dancer.

What was initially dismissed as intense growing pains turned out to be much worse – a cancer in my knee called osteogenicsarcoma that had spread so far that there was only one way to save my life. I still remember the punched-in-the-gut feeling as I slowly processed the word that came out of the doctor’s mouth: amputation. It was devastating.

At age 13, I became an amputee. I thought my life was over.

There were dark days. During what was already an emotional and awkward phase of adolescence I was losing my hair due to cancer treatment and coping with the trauma of losing a limb. There was the self-consciousness of going to school with an artificial leg and fear of being stared at everywhere I went. There was frustration over re-learning daily tasks I’d done so easily before. Most heartbreaking of all, I had to give up what I loved most: dancing.

I was lucky to be surrounded by supportive family and friends but also to gain another incredibly powerful network: other amputees and other kids with cancer and other diseases. Not only was there a much bigger and more diverse community of people with similar experiences than I could have ever imagined but people were living full, active and rich lives. A key part of my healing process was the realization that I was not alone.

I began to accept my artificial leg. I went back to doing things I loved and even tried new things I’d never done. I got back on a bike, went canoeing and kayaking. I even learned to ski. Today, I spend most of my free time outside enjoying many of these activities.

See video of Carla talking about getting back on a bike for the first time after her amputation.

For the last year, I’ve also led the University of Michigan U-Can amputee support group where people who have experienced limb loss in all different phases of life can come together to share their own stories. This is a safe place where there is a genuine understanding, no need to explain and no fear of feeling different. Group members discuss everything from how they lost their limb and how they’ve managed it to issues like insurance coverage for devices. We talk about our challenges and triumphs, hear from experts and of course make new friends.

 

The Limb Loss Event is June 21, 2014.

Click this image to register for the Limb Loss Event.

At our first limb loss event co-sponsored by the U-M Health System and St. Joseph Mercy Ann Arbor on June 21, we hope to bring this community together from near and far.  We will hear from keynote speaker Chad Crittenden, the first amputee to compete on the show Survivor who completed an inspiring list of athletic accomplishments after his own amputation. We will also have the opportunity to hear from top experts on how to improve our health and to learn about all of the resources available to people with limb loss.

Hearing you need an amputation is a terrifying moment. So many fears cross your mind like whether you’ll be able to take care of yourself, what it will feel like, and how your life will change. I still remember waking up after my surgery and mourning the loss of my leg. I recognize the same fear among others I meet who are newly adjusting to limb loss. Finding a supportive network and learning about the rich pool of available resources can help bring people the encouragement they need.

We hope our limb loss event will help people connect with each other, learn how to improve their health and focus on the many things they can do. Circumstances may not be ideal but I no longer look at losing my leg as an end to anything. It was a new beginning.

Take the next step:


Carla VollmerCarla Vollmer is the Limb Loss Support Coordinator of U-CAN at the University of Michigan Community Amputee Network

 

 

 

 

UMHS logoThe U-M Orthotics and Prosthetics Center takes a multidisciplinary approach to care, working with patients to formulate and implement the best treatment plan according to their goals, activity level and lifestyle.

Bottoms up: “My doctor said I need what?!”

Screening for colorectal cancer: It’s time to stop avoiding the colonoscopy

colonscreen.fwWe’re all prone to the uncomfortable feeling that arises when a doctor mentions screening for colon or rectal cancers. Despite the unease surrounding this topic, it’s time to stop avoiding the colonoscopy and get screened! There are often no symptoms with colorectal cancer. You can’t feel a polyp, and very rarely will you see visible blood. For this reason, screening is the most effective way to be protected.

According to the American Society for Gastrointestinal Endoscopy, colorectal cancer is the third-leading cause of U.S. cancer deaths in both men and women. Further, it is currently the third most commonly diagnosed cancer in the United States. That is why doctors recommend screenings, even though they may be embarrassing to discuss.

Colorectal cancer starts in the colon or rectum, most often as a polyp, or a small piece of tissue that protrudes from the inner wall. Screenings help prevent colorectal cancer by finding precancerous polyps so they can be removed before they progress. Everyone needs screening because we are all at risk for colon cancer. If everyone got screened we could prevent up to 90% of colorectal cancers. Continue reading

Sex hurts – could it be vulvodynia?

Signs that painful sex or exercise may be caused by a chronic vulvar condition

For some women, vulvar pain can make activities like biking, tampon use, sex or even sitting beata1.fwunbearable.

It’s not uncommon for these women to believe that the pain “is in their head” or that painful sex is normal and that it feels that way for all women. They might not even know that what they are experiencing has a name: vulvodynia, an unexplainable and often misdiagnosed condition marked by chronic pain at the opening of the vagina.

Research suggests that this vulvar disorder once believed to be rare actually affects between 8 and 10 million American women at any one time. Unfortunately, a lack of awareness among women – and even among many of their doctors – means it often goes undiagnosed and untreated.

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