There are times in our lives when we wish we could make a difference, when we wonder what we could possibly do that could be significant and make a lasting impact. We may not have the time, resources or availability to make the fingerprint in this world that we wish we could. Or so we may think. Tuesday, December 18, is the day that all could change.
Sam Bieno of Portage, WI knows personally how we can significantly impact the lives of others with just one selfless deed.
While attending college to become a child psychologist, Sam was diagnosed with Acute Myeloid leukemia (AML). It was the generous act of a complete stranger that ultimately gave her, and her family, the greatest gift of all- hope. After being matched with a donor on the Be The Match national registry, Sam recently received the transplant that may lead to the complete remission of her leukemia.
Each year, thousands of individuals are diagnosed with potentially life-threatening conditions- and many of them children. Like Sam, many are in our community. Leukemia, lymphoma, sickle cell anemia and more are all conditions which may require a bone marrow transplant in order to survive. Like blood donation, a match between the donor and the recipient is required.
Unfortunately, about 70 percent of individuals, including Sam, don’t have a relative who is a match. Those individuals, those children, mothers, fathers, sons and daughters are all in desperate need of a life-saving donation. A donation which could come from you.
The difficulty in finding a match is more complex than one may think. In fact, only 1 out of 540 potential donors ever end up being matched. Sadly, half of those who need the donation never end up receiving it.
Donors are paired to needed recipients by matching human leukocyte antigens (HLA). These protein markers are hereditary and are the reason why 30 percent of those in need find donors within their own family. For the rest, reliance on the goodwill of others is what they must fall back on.
Because matches are often found within the same ethnic group, diversity within donors is essential. Minorities are greatly underrepresented on the donor registry. To complicate matters even further, with the blending of ethnic backgrounds, minorities of mixed ethnicity have the most difficult time being paired with a donor.
Regardless of your ethnicity, your personal HLA markers can only be determined by a specialist. Matches are not always found within the same ethnic group, so no matter your heritage, the need is real and can be lifesaving.
On Tuesday, December 18, 2012, Divine Savior Healthcare is sponsoring a Marrow Donation Registration. From 10 am through 4 pm, a simple swab of your cheek and some good intention could give the gift of life this Christmas.
Not everyone is eligible to register for marrow donation. Certain requirements must be met, which only narrows potential donors even more. We encourage you to determine if you meet eligibility requirements. If you do, we urge you to consider joining the registry. If you are selected for donation, there is no greater gift that you could offer.
Many people hesitate to join because they don’t understand the process or have misconceptions about pain or cost. Marrow donation does not cost you any money, your travel expenses, medical exams and meetings will all be taken care of. Your health insurance does not incur any costs and will not be affected. As for pain, we can’t deny that discomfort can at times be a side effect. Typically, the joy a donor feels over their gift of life far out weights any short term discomfort which may be experienced.
In the event that you are matched in the donation registry, you will first meet with a donation specialist. This individual will talk to you at length about the process and help you make an informed decision about whether or not you will proceed given your situation at the time. If you choose to proceed, further health exams will be used to verify that you truly are the best match for donation.
If it is determined that you are the best possible match, you will be given detailed information about donation and your recovery. Risks and side effects will be weighed along with the donation benefits. Most donors do experience side effects, just to a different degree.
Some of the risks and side effects of donation may include:
- Lower back pain
- Fatigue Stiffness while walking
- Bleeding at the donation site
- Risks associated with general or regional anesthesia typical to any surgery
- Scarring of 1-4 incisions used to access donation site (typically ¼ inch long or smaller)
- 1.34 % of donors experience a “significant” complication. Significant complications are categorized as reactions to surgical anesthesia or damage to bone, nerve or muscle at the donation site.
What is the donation process like?
The process will occur in a hospital setting which supports the National Marrow Donor Program. This hospital may be near your home or you may be asked to travel. If so, travel expenses will be covered.
During donation, you will be put under either general or regional (local) anesthesia. Hospital procedures vary but in general you can expect to be lying on your stomach during the procedure. Incisions will be made on the back of your pelvic bone. These incisions are small, general ¼ of an inch or less, and do not require stitches. A hallow needle and syringe are used to extract the marrow from the inner cavity of your bone.
After you awaken from anesthesia, you will continue to be monitored. Donors are most often released the same day or the following morning. After you return home, you will be contacted regularly to inquire about your recovery and any concerns or complications you may experience.
Will donation weaken my own body system?
No. Since only a fraction of your total marrow, a quart or less, is donated, your body and immune system will not be compromised. Most donors are back in their normal routines within a few days. Your body will regenerate the donated marrow naturally within four to six weeks.
Can I change my mind after I’m on the registry?
Yes, you can. Situations change and so does your health. Just because you may join the registry now does not mean that you may be an appropriate or willing donor at a time when you may be matched. Certain situations such as illness, pregnancy, injury or a change in circumstance may disqualify you from donation or make you withdraw yourself as an option in the future. At no time will you be forced to undergo a marrow donation without your full and complete consent.
What happens if I do have a serious complication?
In the event a donor has a serious complication, medical coverage will be available. The National Marrow Donor Program has contracts with experts and health organizations within the bone marrow field. Every donor is covered by a donor life, disability and medical insurance policy.
Eligibility requirements as specified by the BloodCenter of Wisconsin Marrow Donor Program:
You may be eligible to join the registry if:
- You are between the ages of 18 and 60. Those under 44 are the greatest need.
- You are in good health.
You may NOT be able to join the registry if you have:
- Diabetes with a history of insulin use HIV/AIDS
- Asthma within the last five years which requires the use of medication or an inhaler (If your asthma is exercise-induced, disregard this exclusion.)
- Cancer or a history of cancer. Exceptions include:
- Cured, local skin cancer (basal cell or squamous cell)
- Healed melanoma in situ
- Healed cervical cancer in situ
- Healed breast cancer in situ
- Healed bladder cancer in situ
- Chronic back problems
- Back surgery within the past five years
- Hepatitis types B or C
- Rheumatoid arthritis
- Heart disease or heart problems (determined on an individual basis)
- Serious kidney problems such as polycystic kidney disease or glomerulonephritis
- Serious breathing problems such as emphysema, sleep apnea or cystic fibrosis
- Prior surgery of the brain tissue or significant brain injury
- Serious bleeding problem such as:
- Hemophilia- Factor V Leiden
- A blood clot
- Requirement of anticoagulant medications
- Aplastic anemia
- Von Willebrand disease
If you have questions about donor eligibility or the process of donation, please call the BloodCenter of Wisconsin at 1-866-702-HOPE and ask to speak with a marrow donor specialist.
Questions in regards to Divine Savior Healthcare’s December 18 registration event can be directed to (608) 745-5165.