Category: Patient stories

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Advocacy Patient stories

Profile of a Plasma Donor Hero

Two-and-a-half years ago when she joined a book club through the Wounded Warriors Project (WWP), a nonprofit organization that provides programs and services for wounded veterans, Torey Reese wasn’t thinking about how much she enjoyed reading or needed some motivation to finish a book. She just wanted to find friends.

Like others in this caregiver’s group, Torey had a husband at home who had been injured during active duty as a Marine. She and her family had relocated to San Antonio, Texas a year and a half earlier. Her second child was born shortly after the move with some health problems that required several surgeries. Because of her family’s healthcare needs at the time, she wasn’t working, and she was feeling pretty isolated. The book club was a way for her to get together with others who shared some of the challenges she was dealing with.

“Pretty much immediately I thought I wanted to be friends with Amanda,” Torey says. “We loved similar types of books, and that just kind of sparked the friendship.”

Amanda Martin was there at the book club because she too cares for a former military husband with serious health issues. Since meeting three years ago, the two have found lots of other things they have in common, including children that are around the same age. And except for their current social distancing because of COVID-19, they and their kids have been inseparable.

But Amanda and her 9-year-old daughter Rita live with primary immunodeficiency disorders, which make them vulnerable to recurrent infections. Amanda depends on intravenous immune globulin (IVIG) infusions twice a month to stay healthy. Rita too receives subcutaneous IG weekly.

“Immune globulin helps control our infections,” Amanda says. “Our lives are so much better because of it. It enables my daughter to go to school. It enables me to be out in the community and to advocate for my husband. I wouldn’t be able to function as well as I do without it.”

When Torey found out about Amanda’s and Rita’s disorder and the life-saving therapy they depend on, she had to help. Immune globulin is not a drug that can be mixed up in a laboratory. It is made from donated human plasma, the golden-colored liquid that remains after the red blood cells are removed. It takes 130 plasma donations to treat one immunodeficiency patient for one year. When donations decrease, so do immune globulin supplies. If there is a shortage, as we had last summer, Amanda and Rita risk having to go a longer period of time between their infusions. They may even have to go without.

So once a week or so, Torey goes to one of more than 800 certified plasma donation centers in the country to give a bit of her plasma. She wishes she could donate twice a week, which is the maximum donors are allowed. But in addition to caring for her husband and two boys, Cayden 10 and Caspian 3, Torey now works as an accountant for a small nonprofit organization. Once a week is all she can manage right now. Still, this is a long-term commitment for Torey, who has been donating for nearly a year now.

“It’s something I can directly do to help them stay alive and stay healthy,” says Torey, who has donated plasma in the past. “I never knew anybody before who directly benefited from my donations. So when you have a person you care about, who is a real face and a real name and a real story to you, it’s hard to not want to help them. I mean, it’s a minor inconvenience to me, but it’s a major inconvenience to them.”

“I can’t express my gratitude enough for her doing this,” Amanda says with a catch in her throat. “It’s something my daughter and I talk about when we get our infusions. We’re very, very grateful and just lucky that Torey is healthy and willing to do it. This may not seem like a heroic thing to do, but for the people who benefit from it, it absolutely is.”

The COVID-19 pandemic has caused a significant reduction in plasma donations in recent months. CSI Pharmacy, in partnership with the Immune Globulin National Society (IGNS) and their #ItsMyTurn campaign, urge those who are eligible to commit to donating plasma to help avoid a shortage of immune globulin and other life-saving plasma-derived products in the months to come. Reminder: It is important to seek out a certified plasma donation center to be sure your donation is used for IG products. (Donations made at blood banks and the Red Cross are not used to create IG products.)

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Advocacy Patient stories

Giving Back One Unit at a Time

Marianne Moyer got a standing ovation recently when she announced to a roomful of rare disease patients at a medical conference that her husband donates plasma every two weeks. Her husband, John, started donating blood and plasma more than 20 years ago, even before Marianne started relying on intravenous immune globulin (IVIG) therapy—a plasma-derived product—to treat myositis. Since then he estimates he has given about 18 gallons of blood and 63 gallons of plasma.

For those like Marianne who depend on immune globulin to help control inflammation in autoimmune and immune deficiency diseases, having enough plasma available to companies that make plasma products is a constant concern. Human plasma is not a drug that can be artificially synthesized. It requires people to donate on a regular basis so therapies such as immunoglobulins, coagulation factors, alpha-1 proteinase inhibitor, and albumin can be produced.

This is an important concern right now because fewer people are donating plasma because of coronavirus restrictions. Many citizens are staying home, which means many are not donating. Donation centers are also taking steps to create social distance within the facility, so they are asking donors to schedule appointments rather than drop in, and they are seating donors farther away from each other. Fewer donations now could mean a shortage of plasma-derived therapies in six to nine months.

Most people are aware of how important donating blood can be, especially when disaster strikes. People also assume that when they give their blood, whatever other blood products are needed can be derived from that donation. The truth is a bit more complicated, though.

Plasma is the golden yellow liquid part of human blood in which red blood cells and proteins are carried throughout the body. Donors can offer their whole blood—red cells and all—on a one-time basis or, like John has done, they can donate every 56 days.

Plasma donors, however, can give more often, because those all-important oxygen-carrying red blood cells are returned to their bloodstream during the donation process. And because plasma is manufactured into lifesaving therapies for many diseases, plasma donors are encouraged to give regularly—as often as twice a week, at a certified plasma donation center.

For the Moyers, volunteering in the community is a way of life. They have been running one of the most successful myositis support groups in southwest Florida for 13 years. Marianne has served on the board of the local Red Cross, and John has been treasurer of their homeowners association and property manager at their church. And they both volunteer with programs at the local public schools. For John, donating plasma is just another way to give back.

“September 11 happened shortly after we moved here to Florida,” John says. “I would donate blood when we lived in Washington, D.C. So when they were calling for blood [after the 9/11 attacks], we both rushed down to the hospital to donate.”

Marianne was heartbroken to find out that, because of her myositis, she was ineligible to donate. But John has been giving about every two weeks ever since. When Marianne was prescribed IVIG in 2003, his donations became even more personal.

Marianne has a form of myositis called necrotizing myopathy, an autoimmune disease of the muscles that makes it difficult for her to do things like climb stairs and lift even small objects. Myositis has also brought interstitial lung disease, which causes scarring in the lungs making it difficult for Marianne to breathe at times. Her IVIG infusions—which she receives in the comfort of her home—control these symptoms well, allowing her to live a fairly normal life.

“All the years when we were working, we didn’t have much time to participate in community affairs or charities,” John says. “Life has been good to us, and now that we are retired, I can afford to spend a couple hours at the donor center. It just makes me feel good to know that I’m helping, not just one person, but many people.”

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Patient stories

Stay Home

When Katherine Holt hears about people who are eager to end pandemic precautions she is outraged. Katherine is among those who are at highest risk from COVID-19 infection, not just because of her age: 76. She has chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune disease that makes it hard for her to walk because of damage to the nerves in her legs.

For those like Katherine who live with autoimmune diseases or other chronic illnesses that put them at risk, one of their greatest fears is that people will start to relax coronavirus restrictions like social distancing and gathering in groups. They’re afraid this will increase COVID-19 cases and that vulnerable people like themselves will get sick.

“I just want to jump through the TV when I see people saying we don’t need to stay home,” she says. “It’s not time to lighten up, because it’s just going to make this pandemic longer, and more people will die.”

Katherine knows what she’s talking about. Until she retired, she worked most of her life as a nurse. She also started her career in the US Air Force. Between the two, she still feels a great deal of respect for authority and duty—an authority based on science and a duty to keep people healthy.

So Katherine is sticking to stay-at-home orders. She lives in Jonesboro, Arkansas with her sister Gloria and their four-legged family: four cats and two dogs. Katherine is grateful that her sister is so strict about making sure she is not exposed to coronavirus or other infections.

“In the beginning, my sister and I—she’s 67—looked at each other and we decided between the two of us I was the one at highest risk since I have CIDP,” Katherine says.

Gloria orders ahead and uses drive-through services at the grocery store and pharmacy. Anything that comes into the house sits in the garage for several hours before being brought inside. Then Gloria pulls on gloves and wipes everything down with alcohol or bleach before placing it in the pantry or refrigerator. In a fallback from Katherine’s days as a nurse, they even have a transition area between the outside (dirty) and the inside (clean) where they do the disinfecting.

Katherine had two doctor appointments scheduled during April, one with her PCP, the other with her neurologist. Both were routine checkups, and she was feeling fine, so she canceled them. She will call if she needs medication refills and reschedule when the pandemic precautions are lifted.

One thing she has not canceled is her IVIG therapy. She’s been receiving monthly treatments since 2008 and getting her infusions at home for about four years now. It’s the main thing that keeps her able to walk.

Katherine’s first infusions were done in a hospital. “I had to be there at 7 o’clock in the morning, and I was there all day. I got back home about six or seven at night, because they were giving it to me really slowly and checking all the vital signs and everything very frequently.”

When the hospital canceled her infusions several times in a row, she was getting a little desperate. She happened to have an appointment with her neurologist shortly after a representative from CSI Pharmacy had stopped by, talking about home infusion. The doctor put in the order, and three days later—on a weekend—Katherine was getting her infusion at home. Now with social distancing, home infusion makes even more sense.

“I think home infusion is the way to go,” she says. “It’s everything you could want. They made it all really easy. And I enjoy when they come, because finally I have another nurse to talk to.”

Ever the nurse, however, Katherine wants to educate the public about what it means to people like her for the country to flatten the curve.

“I just wish I could help other people understand how important it is to stay at home,” she says. “I’m praying people will see reason. If they draw on their good conscience, hopefully they’ll be able to say, oh, maybe we shouldn’t go back to business as usual just now.”