Organ donation and Facebook’s Life Event
After taking a personal interest in organ donation, Facebook CEO Mark Zuckerberg announced that organ donors can now add their organ donation status as a Facebook Life Event. Did you know that you can easily add your Be The Match Registry commitment on Facebook too? Here’s how:
Save the image below to your computer.
From your personal Facebook timeline page:
- Click Life Event in the status update window at the top of your timeline
- Select Health & Wellness
- Select Other Life Event
- Title the event Joined Be The Match Registry as a potential Marrow Donor
- Upload the Be The Match image from above (right click to save
- Insert the date you joined the registry – if you are unsure, please call us at 1-800-MARROW2
- Add the location and a line or two about your story (optional)
- For donor/patient confidentiality reasons, please don’t post your donation date if you have donated marrow or PBSC.
- Select your audience (next to the Save button) and click Save
Note: As with some personal information on Facebook, this Life Event status can be kept private or shared publicly or only with friends. In order to share this Life Event, you need to upgrade to Facebook timeline. To get started go to the Introducing Timeline page and click Get It Now. Learn more about upgrading.
Working it out: Returning to your job after transplant
Megan’s story “I wanted to be tired from working too hard instead of being tired from treatments.”
The day after I was diagnosed with acute myelogenous leukemia (AML), I talked to my managers and Human Resources department and it was decided I would leave immediately to take time off before the transplant process started. I went on leave in the first week of July and decided to go back as soon as my doctor said it was okay, which was six months post-transplant.
I had the ability to communicate with my company as much or as little as I wanted to throughout the process just to stay connected. When I was ready to return we talked about a starting date that made sense for everyone.
“What will my co-workers think?”
I had concerns about everything from ‘would my memory be the same?’ to ‘would my co-workers recognize me with short hair?’ I worried about being able to work long hours and keep up the same pace as my co-workers. I worried about the time I had missed and how that would affect my career.
I wanted to avoid playing the victim and didn’t want sympathy for what I went through. I was just eager to return but I found that some people were “extra nice” to me. I think the biggest issue for me was internal – getting over my own fears of falling behind and needing to make up for what I had missed.
“Do I have to tell my co-workers about my transplant?”
Any information I shared about my health situation was on my own terms, to whomever I chose to tell. I was able to start at full pace, but everyone was aware of my situation and I knew that if it became too much I would let them know.
“I could have taken things a little slower”
In hindsight, I was overly eager to get back to work because I felt like I was missing out. I realize that I went right back into a fast-paced, high-strung corporate environment and maybe I could have taken things a little slower.
My advice is to take your time. It is an internal battle that you have to keep control of, if you are anything like me! I learned that it is okay to work your way back into it and that you are probably putting more pressure on yourself to get back to normal than your company will expect of you.
Most of all make sure you are ready mentally and physically to endure all that needs to be done in a day’s work. Try to maintain an efficient work/life balance because after what you went through, you deserve to be happy, healthy, and do what you love.
Kathy’s story
“My employer could no longer accommodate my needs”
I retired from my job before I was diagnosed with acute myelogenous leukemia (AML). After my transplant, I started to consider returning to work. I started a new job with a new employer. I completely disclosed my medical history during my interview. I know that is not required, but I did. My new employer understood that I had many doctor appointments and would have to adjust my schedule to meet my needs.
“I can have a flexible schedule”
I was very much aware of my rights, but my new employer was not as aware. They were willing to explore; it was just all new to them. We agreed to a contracted status of working less than a full week. This allowed me to work and have my life outside work.
However, the longer I worked, the more time I needed to take off for transplant complications. Because there were no part-time employees at my company, it was difficult to keep up a part-time schedule, so I chose to leave this job and retire from my career.
“I listened to my body”
Embrace the possibility that post-transplant may be different from pre-transplant in that you become aware of your own body changes. For me, I could feel I was not as “quick.” I could not multi-task at a level I remembered functioning at prior. Even though I could not work as much as before, I knew I was contributing to the team.
“Working is not my whole life”
My experience has shown me that working is a good thing, but depending where you are in your life, it may or may not be a priority for you. In my case, I am 58 years young. Working too much was not good for me. I didn’t want work to be my whole life, so I chose to leave when my body told me it was time. I wanted to start a different life, one that involved helping others and having more meaning for me.
Understand your rights about going back to work and disclosing health information with these resources:
QUIZ: Are you playing it safe?
Play it Safe When You Play Outdoors
“I love to hike in the woods,” says Karen. “I’ll hike five miles or more at a time. However, I’m always careful to use sun block and wear a hat when I’m outside. I also hike later in the day to avoid the full sun.”
Spring gardening can also pose special risk for transplant recipients – not just from the sun, but there is also risk from bacteria and fungi in the soil.
“As an apartment dweller, I keep houseplants instead of a garden,” says Karen, “but I know they could be a risk, too, so my boyfriend Bruce takes care of them for me.”
Restrictions haven’t stopped Karen and Bruce from enjoying life. They just got creative.
”Bruce and I are planning a trip to Europe. Since I have Scottish heritage, visiting someplace that is both beautiful, historical – and famous for being gloomy – is a perfect combination!
“Today, I still have a few lingering issues to deal with, but overall, I feel great. It’s been a tough journey, but today I am able to walk farther and do more than some of my 25-year old neighbors!”
Do you know how to play it safe?
Here comes the sun …
The sun’s ultraviolet rays can increase the risk of graft-versus-host disease (GVHD). Even daylight on a cool, overcast day can be damaging. But you don’t have to hide inside—you just have to play it smart!
- Limit time in the sun, especially between 10 a.m and 4 p.m.
- Wear a hat, long sleeves and long pants.
- Apply sunscreen (SPF 30 or higher) to any exposed skin including face, back of neck, hands and feet.
- Some patients also wear special sun protective clothing.
Keepin’ it clean …
Outdoor activities can pose risk of infection because plants and soil, the food we eat, and the air we breath is full of bacteria, molds and fungi. When your immune system is strong, simple precautions like hand washing are all you need to stay safe. But any time your immune system is weak, you need to take extra precautions to avoid potentially dangerous infections.
In the yard and garden
Many doctors recommend that you avoid outdoor gardening and yard work for the first year post transplant. If you’re an avid gardener, consider teaming up with people who want to learn your skills. (You provide direction and let them handle the dirty work.)
Picnics and camping
Eat well and stay safe by following common sense rules, as well as any specific instructions from your doctor. Be sure foods are safely prepared and stored. Cook all meats thoroughly; juices should run clear, not pink. Properly refrigerate cold foods and don’t let them sit out. Store leftovers safely and eat them within a day (or not at all).
Clean air
Besides risk of infection, tiny particles in the air can irritate lungs and cause respiratory problems. Limit time outdoors when air quality is poor and avoid blowing dust as well as
smoke from grills or campfires.
Clean water
Swimming or wading in lakes or rivers can be an infection risk if you’re immune compromised. It’s also best to avoid public and private swimming pools and hot tubs because it’s hard to tell if they have been properly maintained.
Use masks and gloves when needed
Follow your doctor’s advice about wearing a mask and using protective gloves and disinfecting wipes whenever you’re exposed to increased risk of infection. Wash your hands often.
And just in case …
Check out the early warning signs of GVHD, and infection so you can act quickly if you need treatment.
Support Patients like C.J. at the San Jose Be The One Run
Residing a woody area with plenty of allergens, 11-year-old C.J. of Petaluma, Calif. was used to frequent nosebleeds. But when one nosebleed lasted particularly long, C.J.’s mother Heather decided to bring him to the hospital to find out what was wrong. After testing C.J.’s blood, doctors determined that he had a rare form of leukemia and needed to be admitted to the hospital immediately.
Now, a marrow transplant is C.J.’s best chance for a cure. Doctors tested his older sister and family members, but like 70 percent of patient in need of a match, C. J. does not have a matching donor in his family.
C.J. is currently searching for a matching donor on the Be The Match Registry and friends and family are showing their support by joining the registry, organizing donor registry drives and participating in the San Jose Be The One Run on Saturday, May 12.
Support all patients like C.J. and join Be The Match for the Be The One Run. Register today!
Celebrating life at Be The One Run
Ashley of Glen Allen, Virginia was shocked when, in July 2007, she was diagnosed with chronic myeloid leukemia (CML) after a blood test showed abnormally high white blood cell counts. Ashley had never been sick and, overall, felt healthy. She was able to manage her leukemia with medication for about a year until the leukemia changed to acute lymphoblastic leukemia (ALL) in August 2008. A marrow transplant became her only option for survival, but – like 70 percent of patients in need of a match – no one in Ashley’s family was a donor match.
Ashley’s doctors turned to the Be The Match Registry to find an unrelated donor. After about four months, a donor was found in Michigan. Maurine (Moe) joined the registry only three months prior to being identified as a match for Ashley, and she quickly agreed to donate. In April 2009, Ashley received her transplant.
Today, Ashley is feeling great. She is eating healthier and feels blessed to have a brand new start at life. A year after her transplant, Ashley and her husband Robert were able to meet Moe in person. To Ashley, they already felt like family.
This April marks Ashley’s three-year-anniversary following her transplant. She is celebrating by taking part in the Richmond Be The One Run with Robert, Moe and Moe’s husband Hank by her side.
Please register for Be The One Run and show patients like Ashley that you care.
Have you donated your baby’s cord blood?
Share your story!
7-month-old Zachary, finds a bone marrow match
7-month-old Zachary and his mother Pam have already gone through a lot in his short life. Zachary was diagnosed with a rare autoimmune disease called IPEX when he was just a few months old. Doctors told Pam that he would not live more than a year if he did not receive a transplant.
Zachary’s family, including his 2-year-old sister Nelia, were tested, but like 70 percent of patients in need of a matching donor, Zachary did not have a donor match in his family. His doctors turned to the Be The Match Registry® to find an unrelated donor. A match was found and Zachary will be getting a transplant this spring, offering him a second chance at life.
On April 1, Zachary will have some extra support in the form of Team Zak Attack and Love for Bubbie, two teams formed by family and friends for Be The One Run.
What makes you, you?
Be The Match® has launched My Social StrandSM, a fun, interactive website that uses Facebook to discover and share the things that make people unique. From friends and family to traits and quirks, the result is a shareable, dynamic and highly personalized graphic snapshot that includes personality traits, activities, relationships and more.
Find out if you have more friends than the average Facebook user, who’s your most supportive friend and much more when you create your social strand!
You will also learn more about Be The Match during the process of creating your personal profile. We are all unique, yet we are all connected in some way. The qualities that make you, you are also the ones that could save a life.
You can help spread the word!
- Create your own social strand and share your profile through Facebook, Twitter, Pinterest or email.
- Encourage your networks to check out My Social Strand.
- Blog and/or tweet about My Social Strand and encourage readers to create their own profile, and then share their results with you and their networks.
Have fun learning about your social strand, and help us spread the word!
The science of matching improves
The enhanced algorithm, called HaplogicSM III, will advance our mission to help more patients in need of a transplant. Transplant doctors and their patients are benefiting in very significant ways, including:
- Improved matching predictions using 10 markers: Human leukocyte antigen (HLA) typing is used to match patients and donors for marrow transplants. The enhanced algorithm now predicts a match on 10 HLA markers, compared with six with the previous version.
- Enhanced matching precision with detailed race groups: HLA markers used in matching are inherited from your parents, so some combinations of HLA markers are more common in particular racial and ethnic groups than others. That is why people are more likely to match someone with similar ancestry. Haplogic III now uses greatly expanded data about the frequency of HLA in 18 specific U.S. race and ethnicity groups to predict the best matches.
- More clinically relevant sort order: Potential donors are now sorted by HLA type, with the 10/10 donors at the top of the donor list and all other close matches ranked by the number of HLA markers that match between the patient and the potential donor. This sorting helps transplant doctors to rapidly pinpoint any suitable donors or cord blood units even if they are not a perfect 10/10 match.
Haplogic III was developed by a project team of more than 125 people across the organization.
