Category Archives: Patients

The Wait: Life on the transplant list

As of last week, there were over 93,000 Americans awaiting kidney transplants. Richard Nixon, an accountant with a famous name and a faint Jamaican accent, is one of them. People with serious renal disease can live for years on dialysis, but as Nixon’s story illustrates, it’s an unpleasant and exhausting process.

Like many people on the waiting list, Nixon is hoping to find a living donor. He hasn’t found a match among his family or friends, so he’s using social media to recruit strangers willing to help. While he waits, Nixon is raising awareness of kidney disease and keeping himself healthy.

Here’s his story:

Update (6/6/2013): Nixon is continuing his online search for a suitable donor. He posted his story on Reddit earlier this month. You can see it here.

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An ‘overnight mission of death and life’

It’s not uncommon for transplant recipients to go public, and the families of donors often honor their loved ones by telling their stories. What’s rare are narratives about the space between, tales of the people who pluck hearts, lungs, livers and kidneys from brain-dead bodies and bring those organs to surgeons who will them to extend other patients’ lives.

That’s why this story from the Ottawa Citizen is so amazing. It follows a team of doctors on an overnight flight to retrieve a heart from a patient at one hospital and bring to a transplant center. One of the doctors quoted in the story, Andrew Pipe, compares the process to delivering a baby:

Retrieving a donor heart, Pipe says, is always an emotional assignment. Donors typically die a tragic, frequently accidental death. Often, they are young. (One of Pipe’s first retrievals was the heart of a 13-year-old boy who collapsed playing hockey.)

“At one end of the flight there is great sadness and great tragedy,” Pipe says. “At the other end of the flight, there is generally a cause for celebration and a recognition of the unbelievable generosity of the donor and their families.”

Although the story takes place in Canada, the process for organ retrieval is similar in the United States. You can learn more about it here.

Hundreds willing to help NH cop with kidney disease

Tilton, NH police Cpl. Nate Morrison needs a kidney transplant. His colleagues have launched a website to help him find one. Courtesy photo.

Cpl. Nate Morrison. Courtesy photo.

A New Hampshire police officer in search of a kidney donor made news all over New England last week, including this story in the Concord Monitor.

Cpl. Nate Morrison found out last summer that a chronic illness is destroying his kidneys and a transplant is the only way to avoid dialysis. Morrison’s brother in law is a potential match, but his coworkers at the police department want him to have lots of other options. Earlier this month, they launched a website  to recruit potential donors and raise money to pay for expenses related to the disease.

The Monitor reports that 300 people used the site to sign up as donors in a single week. At least two of those potential donors are Tilton police officers, according to WCVB.com.

“We’re going to do everything we can to find a donor for him,” Tilton Police Chief Robert Cormier told WCVB. “He’s a member of the department, a member of our family.”

It’s not uncommon for patients with kidney disease to recruit donors this way. The first kidney transplant involving a living donors — versus an organ from a dead body — took place in Boston in 1954. Since then, more than 50,000 people have given one of their kidneys to friends, relatives and strangers, according to the National Kidney Registry. There’s even a Facebook group devoted to helping find a suitable match for patients — like this man from North Reading, MA who found a donor 10 minutes after posting his story.

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A kidney with its own Twitter account

Australian radio journalist Mark Colvin is a master at Twitter, so it was no surprise when he used a tweet to announce Friday that he was about to undergo a kidney transplant. Within hours, “kidney” was a trending topic in Australia. Then things got really interesting when Colvin’s new organ launched an account of its own:

Colvin, who tweets as @Colvinius, is recovering from what his doctors have deemed a successful transplant. He has no idea who’s behind @ColvinsKidney, but thinks the account is a good way to raise awareness about organ donation.

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Blogging a transplant

Stem cells, ready for transplant. Photo/ Amy Augustine Grappone

Stem cells, ready for transplant. Photo/ Amy Augustine Grappone

The bag in this photo is full of stem cells that, until a couple of weeks ago,were inside my friend Amanda’s body. That was before she donated them to her brother, Greg, who needed a bone marrow transplant to fight a tricky form of lymphoma.

I could tell you their story: How this isn’t Greg’s first experience with cancer, how he found out he’d need the transplant the day after his daughter was born, how his family is supporting cancer research and encouraging people to join the bone marrow registry. But really, it’s best if you just visit their blog, Counting up from Zero, because it’s impossible for me to describe all this better than they already are.

Greg’s wife, Amy, is a really fantastic woman, a journalist I worked with for many years at the Concord Monitor. (Friend’s brother married to former coworker? Yes, New Hampshire really is that small.) During Greg’s illness, she’s used Facebook, Instagram and now this blog to document their experiences in words and pictures, including the photo accompanying this post. The result is honest, unwavering and packed with the kind of information other transplant recipients will find useful.

Their blog has received thousands of hits since its launch earlier this month, and that’s no surprise. About 15,000 bone marrow and cord blood transfusions are performed in the U.S. each year. After the transplant, patients like Greg spend many months in near isolation while the donated cells rebuild the recipient’s immune system. It’s a mentally and physically tough time, and this blog will undoubtedly become a source of camaraderie for anyone in a similar situation.

Even those without a connection to Greg, Amy or anyone affected by this kind of transplant will find the blog a worthwhile read. It’s a testament to the power of family, community and science.

(Although Greg’s new cells came from his sister, many potential recipients don’t have family members who are able to donate compatible cells. In such cases, doctors try to find a match on a national registry of willing donors. Here’s Amanda’s description of what it was like to be a donor. And here’s some information to read if you’re considering joining the registry.)

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