Tag Archives: bone marrow donor

April is Donate Life Month, and We Are Touched by Transplant

April is National Donate Life Month, a commemoration that we and our patients love to celebrate. This year, Donate Life America, who launched the awareness month in 2003 with its partners, has chosen a special symbol to mark the month: a pinwheel.

Donate Life Month pinwheel 2017

As the organization explains, the imagery is “symbolic of an instrument that turns obstacles into opportunities. Each Donate Life pinwheel has four sails supported by one stem, symbolizing the power one person has to be an organ, eye, tissue or living donor. This April, we encourage you to stop to feel the breeze, watch the pinwheels and think of the lives of those touched by donation and transplantation.”


Since April 2016, 177 Help Hope Live patients have received life-changing transplants. Let’s hear some of their testimonies.

Touched by Transplant 2017 Help Hope Live


“Alive Again” with a Kidney and Liver


Brent Lauffer has fought congenital hepatic fibrosis (an inherited liver disease) since his teenage years. He received a liver/kidney transplant in January 2016.

“The liver is continuing to work and the new kidney is putting out urine!” he wrote in an update on his Help Hope Live campaign page. “As I now live, having received my liver and kidney transplants, I want to thank YOU for your help. You give me HOPE for a bright tomorrow. God bless you for your prayers and support.”

Brent Lauffer Help Hope Live

“You give me HOPE for a bright tomorrow.”

Brent speaks to some of the everyday blessings that came from the transplant, saying “it is amazing to wake up and NOT feel sick, hungry, and have to pee! I am alive and headed towards a real life again. I am so thankful for my friends and family and those whom I’ve never met who are supporting me.”

“I’m pictured here with George. He received the other kidney (from our deceased donor)!“

Brent Lauffer Help Hope Live

Brent with George, who received a kidney from the same donor

Brent fundraises for the Help Hope Live Mid-Atlantic Liver/Kidney Transplant Fund. Fundraising gives his community a way to tangibly support his transplant recovery journey. As one contributor wrote to Help Hope Live, “You are on the side of the angels with the work that you do.”


A Record-Setting Recovery


Living with end-stage renal disease and in need of a pancreas/kidney transplant, Kathe Wimberly Neely has been fundraising with Help Hope Live since 2011. She witnessed countless patients receive the gift of life as she prepared, year after year, for her own miracle. In February 2017, “the call” finally came.

“Two weeks ago, I received the call,” Kathe posted in March. “One week ago, I was discharged from the hospital–a record recovery, according to my medical team. Another record, according to my pharmacist: the fewest discharge meds she had ever seen. My healing has been amazing. Very few side effects–all very manageable. It’s all temporary and I will get through it with a smile.”

Kathe Neely Help Hope Live

Kathe says she is experiencing “a record recovery”

While the gift of life was long-awaited and personally impactful for Kathe, her post-transplant thoughts were with the donor: “That was probably the day a family was facing the greatest heartache one can even imagine. In my eyes, they were so brave to go through such a time while also making some decisions that would forever change my life and the lives of possibly many others with their gift of organ donation. This family, though I do not know who they are, is in my thoughts and prayers daily. This family is who I think of every single night as I fall asleep. I hope to know them one day when they are ready.”

Kathe’s life post-transplant includes a wealth of community support. “Life is grand,” she reported, as “each and every person I know and love brings sunshine to my life. I have met many new people along my journey, each one adding new rays and brightness to my appreciative and over-flowing heart. Again, words escape me.”

Kathe Neely Help Hope Live

Kathe with her custom Donate Life “Pay It Forward” plate

Sometimes the beauty of new life lies in the smallest details, as Kathe’s frequent updates highlight. “Couldn’t sleep, so I came downstairs to sit on the sofa because I can,” she posted. “I’m not tethered to a 15-foot tube that’s attached to a dialysis machine in my bedroom anymore. This is amazing!”

Kathe fundraises for the Help Hope Live South-Atlantic Kidney/Pancreas Transplant Fund. “Love how much you do for others,” she wrote to us. “Much love and thanks for the amazing work you do. I’m so glad to work with my Help Hope Live fundraising team on my transplant journey.”


New Lungs, New Life


Pat Donovan and his family were plagued by uncertainty when he was diagnosed with idiopathic pulmonary fibrosis (IPF), a chronic lung disease where the cause is generally unknown and the only treatment is a double lung transplant. Pat was fortunate to receive a transplant in July 2016 after only 30 days on the transplant waiting list.

Pat Donovan Help Hope Live

Pat received a double lung transplant to fight IPF

“The miracle of Pat’s transplant continues,” reads a recent update on his Help Hope Live campaign page. “Our gratitude is overflowing! April is Donate Life Month and we celebrate Pat, who is doing extremely well, slowly and steadily regaining strength at this stage of his recovery. Walking without [supplementary] oxygen was made possible by an organ donor! Pre-transplant, even simple activities left him gasping for breath and coughing relentlessly.”

Pat Donovan Help Hope Live

“Made possible by an organ donor!”

Along with an incredible improvement in health comes the unfortunate and ongoing burden of transplant-related costs. “There is a need to continue to raise funds for uninsured transplant expenses,” explained an update. “The cost of radical dietary changes to stave off infection and organ rejection are real. Co-pays and deductibles are a concern for all of us. The daily medications he will need for a lifetime are literally a matter of life and death. Travel, lodging, and food for trips from Pat’s home in central Maine to the Boston transplant clinic are not as frequent, but they do come with a cost.

Pat Donovan Help Hope Live

Post-transplant care and medical needs “come with a cost”

Pat fundraises for the Help Hope Live Northeast Lung Transplant Fund.


Fundraise to Sustain the Gift of Life


Touched by Transplant 2017 Help Hope LiveAs Help Hope Live patients have expressed time and time again, a transplant can be an incredible opportunity for greater health and happiness, but it isn’t the end of the road. Fundraising can help to offset some of the lifelong financial burdens of life pre- and post- transplant, including testing, donor search fees, anti-rejection medications and medical travel for routine follow-up care.

Donate Life Month is a great opportunity to start or re-start a transplant fundraising campaign. Help Hope Live was founded in 1983 by a transplant surgeon and his wife, a nurse, who wanted to help more patients have access to transplant procedures. Since our founding, our community-based fundraising campaigns have provided more than $67 million in financial support to cover patients’ unmet transplant related expenses.

Stay tuned for a whole month of memorable Touched by Transplant stories, and keep your pinwheel spinning.

4 Ways To Engage Your Faith Community For Fundraising

In honor of National Donor Sabbath this week, here are a few ideas for how to engage your faith community in fundraising.


Spread Awareness With National Donor Sabbath

Between November 13 and November 15, faith communities across the country will celebrate National Donor Sabbath, a time to honor individuals who have saved lives through organ donation. It’s an opportunity for discussion and education: as Donate Life California notes, “ALL major religions support organ, eye and tissue donation, and believe it to be a final act of kindness and generosity.”

National Donor Sabbath 2015

Source: donatelife.net

HelpHOPELive will be distributing free organ donor awareness materials to congregants at St. David’s Episcopal Church in our local Wayne, PA community this year. Consider asking your faith community to honor the occasion in 2016. Contact your HelpHOPELive Fundraising Coordinator to request awareness materials to help spread the word.


Showcase Ways To Make A Difference

Your place of worship may be an ideal location to bring people together to sign up to be bone marrow donors, blood donors or registered organ donors. These drives can raise awareness for a cause, inspire attendees to donate to your HelpHOPELive Campaign and create an opportunity to enlist community volunteers who may help you to promote your Campaign or plan future fundraising events.

bone marrow drive swab

Hold a bone marrow drive to raise awareness and support for your Campaign.

In 2010, HelpHOPELive client Vinodkumar Challagundla desperately needed a bone marrow transplant to fight myelofibrosis. His faith community came together to hold bone marrow drives across the country at which potential donors could submit their cheek swabs for compatibility testing. The community found overwhelming support for the initiatives: more than 15,000 people joined the National Marrow Donor Program registry through the drives, including the donor that would save his life.


Hold A Fundraiser

A place of worship can be a great venue for a fundraising event, from a post-service pancake breakfast to a community yard sale. If you are already involved with a faith community, contact your HelpHOPELive Fundraising Coordinator for event ideas that will suit the venue and audience.

pancake breakfast

Your place of worship could be a great location for a fundraising event.

If your faith community has a suitable concert area or holds a regular musical event, consider engaging faith leaders to help you plan a concert to fundraise for your Campaign. A faith-based community concert in honor of HelpHOPELive client Allen West Edgar attracted over 300 attendees and raised significant proceeds towards Allen’s kidney transplant. Allen even performed at the concert, showing attendees how much their support meant to him.


Engage A Volunteer Network

Some faith communities have a social service and outreach component built into their mission or their youth organizations. See if your place of worship would be willing to help you reach out to individuals who want to support your fundraising efforts in the name of their faith. HelpHOPELive client Ethan Kadish’s friends and family members engaged their faith community to support Ethan through two projects, a 5K event and a performance by a local youth band, that tied into service expectations for a coming-of-age religious ceremony.

friends

Find enthusiastic volunteers through your faith community.


Want more fundraising tips and ideas? Reach out to your HelpHOPELive Fundraising Coordinator for support and browse our Blog for additional insights.

Nick’s Fight Against Aplastic Anemia

Nick Karavite was diagnosed with a rare blood disease called aplastic anemia at age 13. His bone marrow stopped producing enough vital blood cell varieties which caused his immune system to attack itself. Nick’s treatment included extended hospital stays and testing, chemotherapy and, finally, a bone marrow transplant from his 6-year-old sister, Mandy, exactly one year ago today. We spoke to Nick and his mother, Pam, about his transplant journey.

Mandy Karavite chemotherapy Nick Karavite aplastic anemia

Nick encourages everyone to sign up as a bone marrow donor.


Walk us through the first few days.


Pam: To be honest, everything happened so fast that none of us had much time to process it. One day Nick was pitching a no-hitter, and the next day he had red spots all over him, a fever and exhaustion. I took him to the pediatrician and they did blood work and immediately sent us to the hospital. We were met by an entourage of doctors and nurses and escorted right to another room – no E.R., no waiting room. By the next morning, a bone marrow biopsy was performed and he was diagnosed with aplastic anemia.

We went from a routine visit to the pediatrician on Monday to hearing that our son could die on Wednesday. There just wasn’t any time to think, just react.


How much did you know about aplastic anemia when you were first diagnosed?


Nick: I didn’t know anything about aplastic anemia, and I had never heard of the disease before. In fact, nobody in my family had any experience with the disease. Even though I knew nothing at the beginning, I could probably tell you everything about the whole process at this point!

HelpHOPELive: Aplastic anemia is a rare disorder that causes an individual’s immune system to attack and destroy the body’s bone marrow. Fewer than 1,000 cases are diagnosed annually in the U.S. It is uncertain what causes aplastic anemia to occur.

hospital Nick Karavite aplastic anemia

Post-diagnosis, Nick spent extensive amounts of time in the hospital.


Was your family worried about you?


Nick: Yes, my family members were very worried. My mom would think about it every single night as she watched me sleep – she wanted to change places with me. But they didn’t let that worry get in the way. The same goes for my friends. Instead of overloading me with questions about it, they just cared for me.

Pam: We had our moments (I call them 80/20 days). Nick’s doctor told us that even with his sister, Mandy, as a bone marrow match, his chance of survival was 80%. I had days where I couldn’t shake the 20%. Once, I was packing a bag in Nick’s closet before heading back to the hospital and I had a vision of packing up his closet for good. I fell apart, began sobbing, sniffing his clothes, falling to my knees and begging God to leave my son here. I started calling them ‘closet moments’ – if I ever needed to cry, I would go find a closet so that Nick never knew.

Make A Wish Pamela Karavite Nick Karavite aplastic anemia

One year ago today, Nick gives his mother a Make A Wish medal.


Were you scared?


Nick: I wasn’t too scared, because I honestly didn’t know what was going to happen. I was learning more about the condition and focusing on what needed to happen next. I guess there is mild, moderate and severe aplastic anemia. I had severe aplastic anemia, but my parents never shared that or my survival odds with me until after I made it through.


What helped your family remain positive?


Pam: We were united in our common love for Nick, but I feel we remained positive because of God’s hand in things. I spent a lot of nights watching Nick sleep, wondering why this was happening. I still am not clear as to the “why,” but I am sure that God had a hand in preparing us for this battle for three reasons.

First, five years ago, God blessed us with the surprise of Mandy, who ended up being Nick’s ideal bone marrow match. Second, I had started work on my Masters in Special Education before Nick’s diagnosis, which equipped me perfectly to home school Nick for three quarters of his 8th grade year while he pursued treatment. Third, we moved our children to a different school district prior to his diagnosis, and the support of this new community became a true lifeline for our family when Nick was diagnosed.

hospital bed Nick Karavite aplastic anemia

The Karavite family sought to stay positive
throughout treatment.

The community really rallied to keep us lifted. Local parents put us in touch with HelpHOPELive, helped us cook meals and clean and held fundraisers in Nick’s honor. His peers at school even donated their allowance to his campaign. Teachers went above and beyond for Nick – his basketball coach gave him an honorary spot on the team even though he wouldn’t be able to play. Based on all we were armed with for this fight, it was hard not to remain positive.


Was fundraising an important part of the journey?


Pam: Fundraising was a HUGE part of our journey. The money raised through HelpHOPELive helped with anything insurance didn’t cover; the greatest help was when it allowed us to relocate for Nick’s hospital stay. One of the smartest things we did was to keep our family together: from the very beginning, I knew we needed to be at Nick’s side at the hospital 24/7. I knew we had Nick, the sick boy; Mandy, the donor; and two other boys that could potentially get lost in the shuffle. We agreed that keeping together was the best way to maintain some kind of ‘normal’.

Because of the help we received via donations from family and friends, one of us was able to be at Nick’s side every step of the way, and the other parent could be with our other children to provide them with ‘normal’ family time. Our psychologist has since told us that this one act, keeping our family together, was instrumental in getting us through this journey with the least amount of upheaval. Fundraising made that possible for us.

wheelchair friends family Nick Karavite aplastic anemia

Family and friends provided support and fundraising help.


What was the treatment like?


Nick: I went through a few treatments and then chemotherapy. I didn’t realize how sick it would make me. I got chemo for four days. Every night, all I could think about was being one day closer to going home again.

The bone marrow transplant only took a couple of hours, but I had to stay in the hospital for a month afterwards. A lot of people brought me games and things to do in the hospital to pass the time. I wasn’t able to eat for the first two weeks! The doctors wanted me to fill up on protein, but until I could get there, I had to get liquid nutrients through an IV for every single meal to stay healthy. I have a few scars from the treatment process.


What three words would you use to describe how it feels to go through diagnosis and treatment?


Nick: Scary. Unknowing. Shocked.

Nick Karavite aplastic anemia chemotherapy bone marrow transplant

Nick endured chemotherapy and a bone marrow transplant.


What advice would you give to another family that is facing a battle with aplastic anemia?


Pam: Well, there is always the obvious: stay off the Internet! I didn’t allow myself to look at how awful this disease can be until after I felt good about where Nick was in his treatment. But my central piece of advice is this: accept help. I can be terrible at doing this myself, but the help we received SAVED us. It is a very humbling experience but a very necessary piece to surviving such a trying ordeal. The emotional scars are certainly here to stay for all of us, but I can honestly say they would be far worse had we not accepted the help everyone so willingly offered.


What do you think everyone out there should know about aplastic anemia or becoming a bone marrow donor?


Nick: They should know that the treatment process is a lot harder than it sounds. Even though it’s not cancer, aplastic anemia can be harder to treat than leukemia.

The chances of living with aplastic anemia without a donor are 50%. It goes up to 80% with a donor. Not only that, but the bone marrow donation process is pretty much painless – all they do is put an IV in you and put you to sleep, then take your bone marrow. The donor’s cells replenish themselves in 4 to 6 weeks.

Mandy Karavite bone marrow donor donationNick Karavite aplastic anemia

Nick received bone marrow from his younger sister, Mandy.

My 6-year-old sister was my donor, and her least favorite part was the over-the-counter medicine she took after the procedure – she didn’t like the taste of it! She was able to keep going with her life right after the procedure. She was out swimming the next day!

Everyone should sign up to be a bone marrow donor. All you have to do is sign up, swab your cheeks and that’s it, and you can save a life.


You just graduated from eighth grade. What are you looking forward to in high school?


Nick: I’m excited about starting a few different classes like biology and math. Science and math are my best subjects. I’ll also have about 15 of my friends starting high school with me.

Pamela Karavite Nick Karavite aplastic anemia recovery graduation eighth grade

Nick graduated from eighth grade with his mom by his side.


What do you want to be when you grow up?


Nick: I love baseball and I would definitely like to play baseball professionally, but I know that might be a long shot. After going through this treatment, one of my career goals is to be an anesthesiologist. Whenever I had a surgery or treatment, I would ask about anesthesia and being an anesthesiologist. It’s a really interesting system. It puts you to sleep very fast! That was a memorable experience.


Baseball is one of your favorite pastimes. What is it that you love about the game?


Nick: I like hitting, pitching, fielding, playing on a team, all of it! I’ve been playing baseball since I was four and started off with tee-ball. My favorite professional teams are the Cubs and Tigers. I’ve been to a Tigers game before. My favorite pitcher is David Price, who pitches for the Tigers. He’s a leftie like me, and he’s a good pitcher.

Nick Karavite baseball bat hospital aplastic anemia

Nick loves to play baseball.


What’s your best pitch?


Nick: Every pitch is my best pitch!


Thank you for the great conversation, Nick and Pam. To learn more about Nick or donate to HelpHOPELive in his honor, visit his Campaign Page.