Hancock man advocates for national bone marrow and stem cell registry that saved his life – Monadnock Ledger Transcript

By daniellenierenberg

John Davy of Hancock marks two birthdays. The first isNov. 16, the day he was born in 1941. The second is Jan. 6,the day in 2014 when he received a lifesaving stem-cell transplantthanks to a complete stranger.

Now, John and his wife Sandhy Kale have become advocates for Be the Match, the national stem cell registry that found John his rare genetic match.

How often in the world do you get to save someones life? Davy asked. You fantasize about it sometimes. Heres an opportunity for anyone between 18 and 44 to do just that.

Davy said he began feeling abnormally tired sometime in 2013. One day, he walked to the mailbox, only a few hundred feet away from his front door, and had to stop several times on his way back to his house.

I said, Thats not me. Theres something off here, Davy said.

Davy went in to the hospital for some testing, and after a few false starts looking at his heart and running stress tests, doctors performed a Complete Blood Count, or CBC.

My blood count was so low, it wouldnt support life, he said.

Thats when Davy received his diagnosis. Myelodysplastic syndrome, or MDS, a form of blood cancer.

My first thought was, OK, what are we going to do about this? Davy said. Thats when the doctor told me there was no cure.

MDS cannot be cured through usual chemotherapy or radiation treatments. However, it can be treated with bone marrow or, as with Davy, the transplant of stem cells.

After receiving a second opinion, and speaking with a doctor experienced with stem cell transplants, Davy went on the national stem cell registry, known as Be the Match.

He was told he might have to wait upwards of a year before finding his match. But Davy got lucky in only three months, a viable donor joined the registry.

Davy knows little about the man who saved his life. He was 30 years old at the time, and a member of the United States military. Be the Match allows donors and patients to connect, if both sides are interested, but while John said he would love to shake the mans hand, his donor has wished to remain anonymous.

If I could speak to him, I would thank him profusely. For someone to be that generous, to donate to someone that hes never met, is astounding, Davy said.

Joining the Be the Match registry is as simple as swabbing a cheek.

Your genetic profile goes into the system, and, if donors are found to be a match to any patients waiting for transplants, only then are they called to go through the donation process.

There are two ways to donate stem cells. In either case, the donor will first undergo two injections to increase the production of their stem cells. In the first type of donation procedure, liquid bone marrow is extracted using a needle while the donor is under anesthesia. But the much more common way to donate used about 80 percent of the time is through a blood donation.

Similar to the process for donating plasma, the donor has blood drawn, it is cycled by a machine to remove only the stem cells, and the remaining blood is returned to the donor.

The recipient of the stem cells has to undergo a process to suppress their immune system, and the donated stem cells are given to the patient.

Because the immune system has to be repressed to accept the new cells, there is danger in the procedure, and even those who successfully accept the new stem cells can experience side effects of graft-verses-host reactions.

There is no guarantee, Kale said. This is a chance. You can take it if you want. Even if it buys you four or five years, you might get to see your kids graduating, your grandkids grow up. It was worth it to us.

And for Davy, they said, there was no other option. He accepted the risk, and said hes one of the lucky ones he had one minor reaction resulting in a rash across his chest, but overall, since his transplant, he has been able to resume a normal life. Today, seven years later, he is on no medications, and has no restrictions for how he can live his life.

It is that new lease on life that Davy said convinced himself and Sandhy that they had to become involved with Be the Match on a level besides being a recipient of their services. The two are now advocates for the system, traveling to drives to tell their story, and Davy acts as a support person for patients who may be recipients of transplants, telling them about what to expect in the process.

Its crucial, Davy said, to get as many people on the registry as possible. Because matches work on how genetically compatible two people are, people of similar ethnic backgrounds are more likely to match, and your ethnicity greatly impacts the likelihood of finding a good match.

White patients are the most likely to find a match within the system, at a rate of 79 percent. Native Americans have a 60 percent chance, Hispanic people a 48 percent, Asian 47 percent, and Black people only 29 percent.

Thats why Sandhy and I try to get as many people involved as we can, Davy said. The more people in the registry, the better chance you have.

Be the Match currently has a donor drive scheduled for Aug. 14 from 10 a.m. to 2 p.m. at E. Paul Community Center at 61 South Street in Troy. To join the registry you must be between the ages of 18 and 44 and be in good general health, and committed to donating to anyone in need. If you cannot attend the physical drive, a free cheek swab kit will be mailed to you. If you are interested in a kit, text TroyFD to 61474.

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Hancock man advocates for national bone marrow and stem cell registry that saved his life - Monadnock Ledger Transcript

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