My PICC Line

My move to the West Coast has meant spending most of my time seeing doctors. A good bone marrow transplant demands preparation. But when there is some down time, it’s spent with my caregiver. She’s the only person I know out here. She’s also my mother. She has a thing for asking me questions about what’s going on. I think she thinks if she gets me talking about things it will help keep the road smooth, or smoother. She’s probably right, mothers usually are. Here’s the one she dropped on me the other day:

Do you think your life is anymore stressful now than it was last year?

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I worked for a pain management doctor before I was told I couldn’t work anymore. We did procedures. Laid the patient face down on the table and poked and prodded, usually, along the spine. Often the needles were large. Over a half of a year, I saw people react very differently to these “procedures.” Some winced. Some screamed. Some cried. Some didn’t. I would be lying if I said the reaction of a patient didn’t lead me to some assumptions of their overall character.

This week I had my own “procedure,” a bone marrow biopsy and aspiration. The biopsy cuts away a piece of  bone, the aspiration sucks up some of the liquid marrow. This is the second time in the past eight months I’ve undergone one of these. The first time was not even 24 hours after my initial emergency room visit. There wasn’t much time to really think about it. I remember it was painful but I couldn’t tell you about the pain. Nor could I recount specific emotions before, after or during. It has blurred into the pile of blurs that come along with any overwhelming experience.

This time I got to prepare for it. My disorder is no longer a surprise and neither are the tests needed. They gave me a packet weeks ago, telling me precisely what had to be done. Monday, March 1st, was to be a bone marrow biopsy and aspiration day. Monday came and I sat  in the waiting area and waited for my name to be called out.

And it happened. “Sheehan,” a woman yelled.

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It’s been awhile since I offered an update of what’s going on with my health. Last time, I told you my bone marrow accomplished something. Turns out it wasn’t anything worth bragging about.

Two days ago I moved cross country. Moved into an apartment complex that’s population is entirely made up of transplant patients and their caregivers. So yes, I’m going for a bone marrow transplant. My suitable donor is someone I don’t know and won’t know until a year post transplant. That’s if she wants to meet me—they did tell me the donor is a female. What do you say to someone who saves your life? Especially if the someone is a someone whom you have never met? I’m taking suggestions.

Anyway the next few weeks will be filled with all sorts of tests and meetings to make sure I’m ready to go. If all goes well I’ll be admitted to the hospital in mid-March and receive the actual transplant a few days later. One quick thing, a bone marrow transplant is nothing like a solid organ transplant. It is NOT surgery. It’s more like a really important blood transfusion. More details to come.

CNN spoke with Seun Adebiyi on the need for people to join the marrow registry. Watch it here.

Love to see main stream media cover this, especially a four plus minute spot in the age of sound bite journalism. Adebiyi does a nice job of explaining the ease of registering to become a marrow donor. We briefly hit on his very compelling story last month.

Jeana Moore is the grandmother of a leukemia survivor. Her granddaughter, Jada, received a bone marrow transplant at only seven months old, the donor was an unrelated one from Germany. After seeing a life saved, Jeana decided to literally take steps towards spreading awareness; she is walking across the continental United States in hope of getting at least 10,000 people to join the national registry.

Jeana Moore’s blog offers an explanation for her trip:

I am walking across the country to raise awareness around the simplicity of joining the National Bone Marrow Registry, the need for donors and to enroll potential donors. I am walking from Seattle, Wa to LA and From LA to NYC.

Wish her the best of luck, this is an impressive feat on a few different levels. Make sure to follow her progress.

Having removed my jacket for the upcoming blood draw, I sat down.  And would do so for the next hour.

Over 60 minutes I observed many things. One, after having trouble inserting IVs into the arms of a few of the older patients the two nurses on duty were running behind schedule. Two, the other patients around me were starting to grumble.

Healthcare facilities are crowded places. Sometimes two patients come in back-to-back and demand more care than any two you have seen  in a month. Those are the breaks.  From the time I spent working in a doctors office I can attest to how annoying it is to kill yourself—working as fast and as competently as possible—only to listen to the next patient complain and complain about how long they just waited. You apologize and promise you will do better, but really you wish they could show some form of human understanding. You want to explain this isn’t a Friendly’s and patients can’t be served up short order.

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Seun Adebiyi is 26 and has an Ivy League education. He has a great job and a a shot at being an Olympian in 2014. Adebiyi has cancer. Lymphoblastic lymphoma and stem-cell leukemia, the cure is a stem cell transplant. For now Adebiyi has not been able to find a bone marrow match and has opted to have a cord blood transplant. Cord blood is a newer intervention and although it could be his cure, there are drawbacks including less stem cells present(than in bone marrow), longer engraftment time or the time it takes for his body to accept the transplant and start producing healthy blood cells, as well as a lack of backup cells if the first engraftment fails. Despite his personal plight Adebiyi has dedicated himself to spreading awareness and recruiting more people of African descent to join the registry.

Follow his story at Seun’s Skeleton Blog. If you’re wondering “why skeleton?” it’s because it is the Olympic event Mr. Adebiyi is attempting to qualify for in 2014.

Visit DKMS or Be The Match to join the registry today.

I’ve mentioned before that I have never swabbed my cheek for another person or even donated blood. Now I rely on people not like me to live. Gulp.

I’ve tried to make up for my apathy by nagging others to join the marrow registry and posting here on the misconceptions associated with marrow donation. This video from Howcast and DKMS does a far better(and more entertaining) job of it. Enjoy and Join.

This letter from the chief executive of the National Marrow Donor Program, Jeffrey W.Chell, and the president of the American Society for Blood and Marrow Transplantation, Claudio Anasetti, appeared in the New York Times last week. They argue that changing current laws that bar bone marrow donors from being compensated is a mistake.

“International standard-setting organizations and experts in the field of transplantation and transfusion therapy, including those at the World Health Organization, agree that offering incentives could have a negative effect on patients and donors.”

The letter appeared in response to Give Theses Donors a Bone, an op-ed that appeared in the Times on Jan.7 , supporting compensation for donors.

Chell and Anasetti close by pointing out there are all ready millions of donors worldwide who have done so without pay, and making  the process about money will deter good will.

“Studies have shown that compensating donors may deter those who are willing to donate for purely altruistic reasons. Eight million members are listed on the Be the Match Registry, part of the National Bone Marrow Donor Program, in addition to nearly five million donors in other registries worldwide. They are proof that people do not need a material incentive to save a life.”

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Shawntell Taylor is a survivor. She was diagnosed with Aplastic Anemia in 2004 has since underwent three unsuccessful interventions, including two rounds of ATG. Taylor explains in the above clip she also had two unrelated donors “cancel on me.”

Like I said, Shawntell Taylor is a survivor.