Giving back after aplastic anemia

July 24, 2014 at 1:13 pm

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About 4 years ago, Patrick Town’s wife of 18 years, Denice, had been feeling a persistent lack of energy. Her blood counts were low, and her doctors couldn’t figure out why she was so exhausted.

This went on until she noticed excessive bruising for no apparent reason.

She was referred to a hematologist and immediately started receiving blood and platelet transfusions that continued on almost a daily basis for months; her doctor also put her on a powerful steroid and Rituximab, a drug used to treat autoimmune diseases and certain cancers. The transfusions and medications helped make her feel better, but her blood counts kept dropping.

After her third bone marrow biopsy in three months, Denice was finally diagnosed with aplastic anemia, a rare condition that occurs when the body’s bone marrow stops producing enough new blood cells, leaving patients fatigued and with a raised risk of infections and uncontrolled bleeding.

Patrick and Denice looked up the disease online, and first sentence they read said, “blood disorder that’s often fatal.”

We really didn’t know if the sky was gonna fall. Worst time of our lives.

Patrick and Denice contacted Seattle Cancer Care Alliance for a second opinion. Patrick had Denice’s most recent blood report in his pocket at their first appointment with the new physician, who looked at it and said,

Are you trying to scare me?

Denice had virtually no immune system, and her body wasn’t manufacturing any blood components — had she fallen down, she would have bled out internally. The doctor put Denice on “house arrest” until she could perform additional testing.

Denice’s treatment options were limited to ATG therapy or a bone marrow transplant, both risky at her age. Her sister was miraculously a 100% bone marrow match, so doctors scheduled the transplant in less than 60 days.

Denice received massive chemotherapy for four days to destroy whatever of her bone marrow remained, then a bag of her sister’s stem cells.

It was a moving experience to watch life go into her body where it was dead. Everything that could happen from that point forward went the way it was supposed to go.

Patrick describes the actual transplant as anticlimactic, “like getting a unit of blood,” and nothing to be afraid of.

I think it’s the word ‘transplant.’ Really, it’s not that big of a deal! If more people knew how simple it was to be involved in [bone marrow donation], there would be more options for more [patients].

denice-baldDenice lost her hair (“she has a beautiful skull –Sinead O’Connor has nothing on her,” says Patrick), and Patrick had to completely remodel their condo in 2½ weeks to remove irritants in the carpet and paint, but by April or May, they knew she was going to pull through — her doctors called her a “transplant rockstar.”

Patrick made a promise that he would do something for his fellow man in her honor, and The Union Ride & Charity Rally™ was born.

The first ride in 2012 ended at a casino and raised enough money to feed 13,000 hungry children. The second one in 2013 upped the ante with 1500 riders and a custom Seattle Seahawks bike giveaway.

The 3rd annual Union Ride on August 17 is shaping up to be the largest charity motorcycle ride in Washington state and the largest women’s motorcycle ride in history, funneling through downtown Seattle and ending at Key Arena for the Seattle Storm’s final season home game. The City of Seattle is even going to give the ’Ride to the Arena’ a full Police and Firefighters MC escort and close 4th avenue, a historic first.

Non-riders can come out to the event to enjoy a custom bike show; raffles, prizes, awards, vendors and giveaways; discounts to the Storm’s biggest game and Seattle Tattoo Expo; and the chance to win a custom-built Seattle Storm Harley autographed by all Storm players and coaches — all in support of four organizations doing vital work in our community.

Patrick is excited that proceeds from this year’s event will help create jobs and opportunities, feed hungry kids, support youth programs, and literally save lives by funding and encouraging people to join the bone marrow registry through Puget Sound Blood Center’s Bone Marrow Program – Denice was lucky to have her sister as a perfect match, but many patients in need of a bone marrow transplant rely on unrelated donors to save their lives.

My wife is the most gracious, most amazing person I have ever known. It’s important to hear that not every story has a sad ending. We appreciate the gift that we have, and that’s why we both put this thing together.

The Charity Ride entry fee is $25 per rider or $35 per rider with passenger, and the event at Seattle Center is free to public, with suggested donation of whatever you can give. Learn more at unionride.org.

Stem cell recipient meets stem cell donor

July 15, 2014 at 11:05 am
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Alan Schulkin, Carrie Rask from PSBC’s Bone Marrow Program, Annette Promes & her stem cells

Five years ago, Annette Promes saw a poster in her lunchroom at Expedia advertising PSBC’s Swim for Life event. The day I met her, she was saving a complete stranger’s life by donating stem cells.

I feel like much of my life has been random, serendipitous, says Annette. If I hadn’t seen the flyer for Swim for Life, I wouldn’t be in this chair donating now.

When Annette first decided to swim, she didn’t even notice the cause that was being supported (PSBC’s Bone Marrow Program). “I just thought, ‘It’s swimming – I can do swimming!’” She and her sister both swam in high school, and used to swim across the lake near their home in Alaska, so they signed up with Annette’s husband, Jim, as their safety kayaker.

After a couple of years, Annette was inspired to begin fundraising for the Swim, and also to register for the national bone marrow registry as a potential stem cell donor. Her first inspiration drove her to become one of the event’s top fundraisers. Her second one drove her to where I found her the other morning – laying in a (relatively) comfy bed with tubes hooked up to both arms, letting her precious stem cells be collected so that within 24 hours a life-saving transplant could be given to an undisclosed patient, waiting in their hospital bed for the bag of Annette’s stem cells to arrive.

I can imagine that recipient’s feelings. Four years ago I was one of those patients. I had been diagnosed with Acute Myelogenous Leukemia, and my only hope for a cure (or for living another year) was to receive a stem cell transplant. My sister, brother and sons were all tested as potential transplant donors, but none of them were a match. My “guardian angel” was found through the international stem cell registry of which Be The Match™ is a part. Out of 14 million potential donors on the registry, only one matched. He was a 58-year-old Israeli man, although I didn’t learn that for two more years. His stem cells saved my life, and I can continue to be involved with Swim for Life, as I have been since 2005.

Annette hopes someday to learn who received her stem cells, but right now she’s just happy to be helping someone in need. “I’ve spent my entire adult life trying to be the best version of myself — to do it personally and model it to my kids [ages 17 and 19].” Mission accomplished — her 19-year-old will soon be on the registry! And being part Native American, Annette’s stem cells are especially needed. Racial minorities and those of mixed race are underrepresented on the registry, and therefore at much greater risk of not finding a matching donor when they need one.

When asked if she would advise others to register with Be The Match™, Annette answers,

Why wouldn’t you do it? It’s not hard.

Swimming two-and-a-half miles across Lake Washington? That’s hard! Although Annette says, “Swim for Life is my favorite thing because it’s a swim…it’s a fun day…it’s exciting and you’re challenging yourself – although I’m hoping someone will invent swim goggles with a compass!”

Swim for Life: Bach to the Future

June 30, 2014 at 2:14 pm

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Bob Forgrave is on the Swim for Life committee and is the event’s tech guru, helping with everything from website selection and set-up to reporting. He shares a favorite Swim for Life experience.

Some time ago, I lost count of how many times I’ve swum the lake. I just know that each year (with the notable exception of the windstorm year) has felt like the best year EVER as this event continues to get more fun.

This year, I’m definitely up for repeating an experience I had in the early days.

My personal boater (back before we had teams) had offered to bring tunes, and I readily accepted the opportunity to experience someone else’s musical taste during the swim. And those were?

Jimmy Dean and Aida.

Okaaaaaay, I had no experience with either, but decided to roll with it anyway.

Jimmy Dean left no impression on me–we may have even pulled the plug on it early–but the experience of doing a relaxed backstroke to Aida was a rush I’ll never forget. Stretching with each stroke for the sunlit clouds as the Italian tenor hit the high notes of the Celeste Aida aria, it was almost as if I was part of the opera itself… if said opera were performed horizontally in an aquatic environment in a Speedo.

So this year, I’m going for backstroke again, to classical music, as part of the BACHstrokers team. I don’t know what music yet, although Mozart’s 25th Symphony is an amazing tempo tune and Wagner’s Ride of the Valkyries certainly might have potential as beach launch music.

Team speed doesn’t matter that much, as we’ve got our own built-in entertainment across the lake at whatever speed we need to go.

I’ve got three spots left on my team. Are you in?

Swim for Life 2014 is August 20.

Swim for Life: Why I Love the Taste of Lake Water

May 12, 2014 at 12:40 pm

Robin swimming

Robin Dalmas reflects on her first swim across Lake Washington; the 2014 Swim for Life is August 20.

One beautiful August day in 2009, my friends and I swam 2.25 miles across Lake Washington. We started at Medina Park in Kirkland, not far from Bill Gates’ mansion, and ended at Madison Park in Seattle. It took 2 hours and 20 minutes.

This crazy quest had its roots in a gray Seattle October. It was then I decided to join the Pro Sports Club’s 20/20 Lifestyles program. I lost 56 pounds and morphed into what I like to call “new, improved action-figure Robin.”

One day at the Pro Club, I saw a flyer for Swim for Life, a charitable event in which volunteers could swim across Lake Washington to raise money for Puget Sound Blood Center. As a certified water rat, I thought about it for 3 nanoseconds and decided to do it.

I announced my intentions on Facebook. Before long, two former MSNBC co-workers said they would join me. I hadn’t seen them in years. An MSNBC reunion in the lake? Cool. “We’ll call ourselves the Wet Journalists,” I said.

Dave Kaill volunteered as kayak escort. Bobbi Nodell volunteered as swimmer. (Unfortunately, a family emergency called Bobbi away at the last minute, so she didn’t make it.) Donna Reitz, another friend who’s a CPA and avid pool swimmer, said she’d love to join the team.

When I ran into a Microsoft colleague at the Pro Club, she told me that a mutual friend, William Calarese, might be interested in joining the team. William had jogged across the Gobi Desert the previous year in an extreme endurance race called “The Gobi March.” I was thrilled that such a hardcore athlete was going to join our team.

When “Swim for Life” day arrived in August, the weather was perfect. Sunny. The 80s. We could see Mt. Rainier from Medina Beach park.

Donna and I climbed into our wetsuits (which should be an Olympic sport unto itself). William simply wore swim trunks. Dave, intrepid kayak escort, led us out into the lake. He would provide the steady direction toward Madison Park.

Donna, who had never actually swum in open water before, got into a pinch shortly after we left the shore. She pulled her head up from the murky green waters and said, “I’m hyperventilating. It’s dark and scary and I can’t see anything.” Donna was right. Lake Washington is not the Caribbean.

Not wanting to hold the team up, she abandoned the swim and climbed onto a support boat. I was bummed for her. She said she would try again after a swim clinic. (Donna returned in 2010 to not only swim across Lake Washington, but do a triathlon.)

Everyone was faster than me. Fortunately, they were kind enough to wait. As I tread water, Dave the kayaker would shout out “You guys rock!” It became his rallying cry.

In preparation for the swim, I took a triathlete swimming class. Instructor Michael Covey improved my stroke, but I still had a bad habit. I breathe on my right side only. Every time I turned my head over my right shoulder, I looked directly into the sun. Goggles helped cut the glare, but by the end of the swim it looked like I was staring through Vaseline.

Wind speeds started at 2 mph that morning. By 9:21 a.m., they had increased to 3 mph with gusts of 6 mph.

The wind began to push us off course. Wind waves tossed me around and slapped me in the face. To ensure my mouth would contact air – not water – my corkscrew pattern through the water became more exaggerated. Now I know what it’s like to be a Speedo tumbling inside a washing machine.

I swallowed lake water. We stopped at least 10 times for me to catch my breath.

About three-quarters of the way across the lake, my energy began to wane. At this point, it was mind over matter. I started in with the self-talk. It went like this:

You can do it.

One arm in front of the other.

I wonder what they have to eat on the other side. (Oranges, bananas, bread, peanut butter.)

That year, Swim for Life consisted of three waves. Green went first, then yellow, then red. The Wet Journalists were in the red wave. The whole time I was in the water, I thought, “Am I personally going to be last?” (So much for the positive self-talk.)

As we neared Madison Park, tranquility grew into a murmur, then the roar of a crowd. Spectators on the dock were clapping and hollering. I pulled myself up the ladder and suddenly felt the full force of gravity. My arms were shaking from exertion.

My bare feet hit the dock. “Congratulations!” said strangers who had come out to cheer us on. My teammates hugged. As we hobbled toward the grub, I looked behind to see other swimmers hoisting themselves up the ladder.

“We weren’t the last ones out!” I exclaimed. Phew. What relief. After all, how could I possibly explain a last-place finish … when we were on “Team Number 1″?

Want to participate in this year’s Swim for Life on August 20? Learn more!

Give Red this holiday season!

December 2, 2013 at 1:54 pm

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The need for blood doesn’t take a vacation, even during the holidays.

We’re now well into the holiday season, and starting to experience shortages — our inventory is at emergency levels of B negative blood, and low on O positive, O negative, and AB negative as well. December is typically a slow month for blood centers, and we’re counting on you to keep the blood supply stable.

Here are a few examples of people in our community requiring blood in the last month — as you can see, just one procedure can require more than 40 lifesaving donations:

  • A B positive female at Evergreen Hospital used 11 units during labor.
  • An O positive 55-year-old female at Swedish Hospital used blood from 7 donors.
  • A 33-year-old O negative female patient with O negative blood type received 7 units.
  • A 39-year-old male with O positive blood received blood from 15 donors.
  • A 23-year-old female patient in Seattle used blood from 41 donors for an organ transplant.

Patients like Christy require regular transfusions to stay alive, and to others, like Kendra, suffering from sickle cell disease, blood transfusions are their only hope for living a normal life.

Giving blood is an hour of your time, and can be a welcome relief from the stress of shopping and family gatherings. With as many as 1 out of 3 people in the U.S. needing blood at some point in their lives, the life you save may be your own or that of someone you love.

Schedule a donation at your nearest Center or find a mobile drive today!

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