Tag Archives: transplantation

5 Major Transplant Headlines You Missed

Here are some of the milestones and newsbreaks that have touched transplant families since this time last year.


5. Scientists 3D Print Human Body Parts


After a decade of research, scientists managed to engineer functional human body parts including bones, muscles and ears.

Lab grown organ

Will lab-grown organs replace donor organs? Photo via source.

Quote: “This technology could potentially be used to print living tissue and organ structures for surgical implantation.”

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4. Total Artificial Heart Could Eliminate Transplants


After a 60-year break, the total artificial heart (TAH) is being revisited as a potential permanent implant that would eliminate the need for heart transplants.

Total Artificial Heart

Diagram of a Total Artificial Heart. Image via UCLA.

Quote: “There are people that are desperate for this technology…I think it has the potential to save a lot of people’s lives”

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3. Ending The Waiting List…In Our Time?


In addition to lab-grown organs, bioprinting and cold storage could dramatically improve circumstances for transplant candidates on the waiting list.

bioprinting

Will bioprinting and cold storage end the waiting list? Image via source.

Quote: “We can expect the first fully engineered bioidentical no-immune-suppression-needed organ transplant in humans within 10 years.”

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2. Have Money, Will Transplant


A study indicates that wealthy people are more likely to secure a transplant and less likely to die while waiting for one.

Money organ transplant

Can money get you on a shorter waiting list? Image via source.

Quote: “It takes money and knowledge…traveling can make a huge difference in how quickly you get an organ.”

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1. Incompatible Donors Can Donate A Kidney


Donors may now be able to give a kidney to an incompatible recipient through a process called desensitization.

incompatible donors

Incompatible kidney donation is now possible. Image via source.

Quote: “Desensitization…can cost about $30,000 [but] dialysis would rack up a higher price tag and a considerably lower quality of life.”

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Did a health headline touch your family this year? Reach out to us on Facebook and share the stories that moved you.

Ask A Professional: How To Prepare For A Kidney Transplant

There are more than 100,000 people waiting for kidney transplants in the United States. Over 3,000 new people are added to the kidney waiting list each month on average. We spoke with Kelli Collins, Senior Director of Patient Services for the National Kidney Foundation, to find out how transplant candidates can get a better understanding of their condition and the costs associated with transplantation.

National Kidney Foundation logo


Can waiting for a transplant take a toll?


Waiting for or receiving a transplant can be difficult emotionally. The transplant evaluation is extensive and requires multiple appointments and follow-ups. Some tests need to be redone each year to keep information up to date. The waiting list can be long: in the U.S., you could wait for a kidney for between three to seven years or longer depending on your age, blood type and other factors. Living donation can also be emotionally charged, especially if people expected to offer their kidney do not, or those who offer turn out not to be a good match.

waiting

Waiting for a transplant can take an emotional toll.


What are some things you can do to prepare for a transplant?


Make sure that you take good care of yourself and follow the care plan you create with your health care practitioner while you wait for a transplant. Following a kidney-friendly diet, maintaining a healthy weight, taking your medications and attending medical appointments as required are vital parts of staying healthy while waiting for a transplant. It’s also important to plan ahead for potential financial burdens post-transplant.

diet

Follow care advice, including maintaining a kidney-friendly diet


What’s the best way to help someone who is listed for a kidney transplant?


Most people are not familiar with the effects of kidney disease and what dialysis or a transplant entails. Talk with your friends or family members about how they are feeling and ask them how you can help support them. Often just having someone acknowledge and listen to their feelings or concerns is helpful.

connect

Acknowledge your loved one’s thoughts and concerns

Kidney failure affects the entire family, so relationships may become strained as everyone tries to cope and support the patient. Talk to each other and seek professional support as needed. If you are facing kidney failure or preparing for a transplant, remember that you are not alone. There are many resources that can support you along the way. Understanding the process and being prepared will make you feel more confident in managing your condition.


What are some of the most common transplant-related questions you receive through the NKF Cares Helpline?


NKF Cares most often receives questions from patients and family members looking for guidance on how to get on the transplant list or for general information about what the transplant evaluation and surgery entails. Additionally, we receive calls from people seeking financial assistance resources either to help with the costs related to transplant surgery or for helping to cover medications after transplant. We also receive calls from people interested in living donation or patients interested in materials on living donation to share with their friends and family.

red phone

The NKF Cares Helpline offers transplant general info, guidance and support


What is the most common transplant misconception you have heard?


The most common myth is that a transplant is a cure for kidney disease. This is not the case; a transplant is a treatment option. It is often viewed as an ideal option because a successful transplant allows patients to return to living close-to-normal lives. But after receiving a transplant, patients need to be vigilant about taking their prescribed medications daily to keep their body from rejecting the transplanted kidney. Patients must follow a healthy diet, exercise regularly and follow up with their care team to monitor kidney function and overall health.

kidney transplant quote HelpHOPELive


What transplant-related expenses do candidates need to prepare for?


The expenses you incur depend on the type of insurance coverage you have. If you have Medicare due to kidney failure, this coverage will end three years after your transplant. Additionally, Medicare only covers 80 percent of the cost of immunosuppressant medications. These medications can be very expensive. Co-pays are usually a set fee for each prescription. Co-insurance is a percentage of the total cost of the medication; for example, you may be responsible for 20 percent ($2) of a $10 medication. But for a medication that costs $10,000 per month, you would be responsible for $2,000.

www.SeniorLiving.Org

Talk to your team about financially preparing for a transplant.

It can be difficult to completely anticipate all costs associated with transplant, so talk with your transplant team about what to expect so you can plan accordingly. We offer resources and tools to help you consider costs, plan for those expenses and learn more about common insurance terminology.


The NKF Cares Helpline offers support for all people affected by kidney disease, organ donation or transplantation. It’s designed especially for patients, family members and care partners. Trained specialists will discuss your concerns and send free information to help you learn more they are available Monday through Friday from 9 a.m. to 5 p.m. EST.

These Families Were Touched By Transplant

April is Donate Life Month, an opportunity to recognize and celebrate how organ donors and transplants have made a difference for families facing a medical crisis. Since April 2015, 167 HelpHOPELive clients have received life-altering transplants. Here are just a few of their stories.

touched by transplant full


A Transplant Can Change Your Life…


Terry, one month post-transplant: “To watch a man, a Marine Corps veteran, who has been robust and active all his life, become tired and sick and age overnight due to failing kidneys was torture for those who know and love him. Now, however, to watch that same man laugh and smile again less than 12 hours after receiving the amazing gift of renewed life through his daughter’s donated kidney is beyond words.”

Terry Cobb HelpHOPELive

Terry with his faithful friend


Deanna, two years post-transplant: “Deanna celebrated two years post liver transplant this past Saturday. Every day I look at her and think, “Wow, little girl, you are a miracle.”

Deanna3

Deanna proudly represents the gift of life


Emily, one month post-transplant: “Multiple family members, church friends and former classmates called to be tested for Emily, but her donor ended up being a near stranger–someone she had only worked with for a month when the donor discovered Emily’s need and said it was always a dream to donate a kidney. The two are no longer strangers!”

Emily Roush HelpHOPELive

Emily with her “reasons to live!”


Rick, seven months post-transplant: “I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. I have realized that I can do this and I see the light at the end of the tunnel…there’s a lot more hope than there used to be.”

Rick1

Rick’s gift of life


Rachelle, 10 months post-transplant: “Today was my last day of chemo! Wednesday I celebrate my new stem cell birthday!!! Thanks for helping us get our life back!


Dudley: “I had a successful kidney transplant on March 3,2016. I could not have done it without your support and generous donations. I hope to…return to life with my new kidney, which has given me a new lease on life.”

Dudley Edmondson HelpHOPELive

Dudley (left) with his donor


Amy, one year post-transplant: “I feel outstanding! No longer need supplemental oxygen or a wheelchair! I am getting my life back!! Thank you all so much from the bottom of my heart!!! Every breath is a gift.

Amy E Burriss HelpHOPELive

Amy received “a perfect new set of lungs!”


…But A Transplant Can Also Be Financially Devastating


A transplant is not a fix-all solution. Life post-transplant may include unexpected out-of-pocket expenses and additional medical and financial concerns:

cost of transplant

Transplants come with a lifetime of expenses

“My employer’s leave of absence gives me…12 weeks [but] I am due to be out for three months. It looks like I will be out for 6 weeks unpaid.

“It’s been over 3 months and she’s just now NOT feeling awful. Now her function and counts are improving so we again have hope she will have some normalcy soon.”

“I am still unable to work and expect to be in financial dire straits for the next year.”

We were not prepared for the post-transplant care expenses. That has taken a financial toll on our family. Some things you have to take into account are lodging, rent or mortgage payments while you relocate, meals, gas, airfare, and lab and biopsy expenses, which are ongoing, frequent and costly.”

“Thirty-six months after my transplant date, Medicare will terminate my coverage and I will be fully responsible for all transplant-related medical expenses for the rest of my life. The expensive anti-rejection medications that I have to take for my lifetime are out-of-pocket expenses that will cost be hundreds or thousands every month.”


Fundraising Can Make A Difference!


touched by transplant fullA transplant is not the end of the journey. After a transplant, families may face a lifelong list of out-of-pocket medical expenses. That’s why HelpHOPElive is here to help transplant recipients and their families fundraise for a lifetime of transplant-related expenses, from immunosuppressant medications to follow-up medical visits and emergency care.

This video highlights how fundraising with HelpHOPELive can impact an individual’s life before, during and after a transplant. Visit helphopelive.org today to start or re-ignite a transplant fundraising campaign.

Touched By Transplant: What It Feels Like To Get A Heart

In August 2015, John “Skeeter” Coleman was diagnosed with end-stage heart failure. In October 2015, Skeeter and his family began fundraising with HelpHOPELive to prepare for a lifesaving heart transplant. This is the story of how Skeeter received his new heart.

touched by transplant full


I was the “best of the worst,” the doctors said when they put me on the heart transplant waiting list. They said I’d have a heart within seven days. Fourteen days later, they told me to “keep up the positive attitude.” They told me my heart was coming.

John Skeeter Coleman HelpHOPELive heart transplant hospital

In the hospital with grandson Maxson

On the 21st day of waiting, a committee got together at the medical center to work out how to get me an LVAD as a bridge to transplant. No sooner had they convened, someone came into their meeting and said, “We just found a heart for Skeeter.” All the doctors I had worked with came running down to my room. I thought, “What is going on? This looks bad.” Then one of them came forward and said, “We found you a heart.” We hugged; it was a joyous moment.


The average wait time for a heart is about four months.


That night, the anesthesiologist came in with two orderlies to wheel me to the operating room. I said, “Let’s go. I’ve been waiting for this.” They took me to the elevator, and wouldn’t you know it, the bed got stuck and they couldn’t get it out! They kept trying and trying until I said, “This is crazy. Y’all just stop right here.” I got up, no shoes, no socks, rear end flapping in the breeze, and I said, “This is my last walk with this old heart. Leave that bed right there. We have a heart to transplant.”

They followed me right to the operating room. The doctors in the operating room were speechless, and then they all burst out laughing. That’s the last thing I remember before the operation.

Skeeter Coleman HelpHOPELive

With niece Tricia

The operation lasted six hours. When they brought me out into the recovery room, the doctor noticed I was passing a lot of blood, more blood than he had anticipated. They took me right back into the operating room, opened me back up, found a leak, repaired it, stitched me up, and I was put on a ventilator in the recovery unit for three days.

When I woke up, I couldn’t really move or see because of the anesthesia. All I saw was white. I thought I was dead. Then I heard a voice and the voice said, “Daddy!” It was my daughter’s voice.

“I can’t see you,” I said.

My daughter said, “It’s okay. You’re doing okay. But the Cowboys lost.”

And I said, “That’s terrible. But I’m alive?

She said, “Yes, you’re alive.”

Skeeter Coleman HelpHOPELive

With daughter Kelly

Five hours later I came out of the anesthesia fully, and I was alive. It was just wonderful. All my doctors came back in and told me I was doing okay. I still had in my breathing tube. The next day, the doctor just reached over and ripped it right out and said, “Take a deep breath.” That was like a miracle. I could breathe again. It was the greatest feeling in the world.

My daughter walked into the room with a stethoscope. I don’t even know where she got that thing from. She said, “How would you like to listen to your new heart?” That was amazing, just sitting there listening to the new heart beat.


62,754 people have received heart transplants since 1988 thanks to organs from deceased donors.


Fundraising For A Heart Transplant

I stayed in the hospital for almost a month as they adjusted my meds and looked for signs of rejection. When I left the hospital, I was still getting blood drawn every week. I started a new medicine after a rejection scare that cost $1,000 out of pocket for one week’s supply–it wasn’t covered by medical insurance. That right there is why you need HelpHOPELive

first time outside after 60 days

Skeeter stayed in the hospital for almost a month post-transplant

Today, I still have to return to the hospital every three weeks for heart biopsies and every two weeks for med adjustments and blood tests. That’s where HelpHOPELive donations have been incredibly helpful, for medications and doctor’s visit co-pays that are out of pocket, plus the cost of transportation. I go to cardiac therapy three days per week and physical therapy three days per week.

You never know from day to day what expenses you will get hit with. In therapy, for instance, they may recommend a special sling that isn’t covered by insurance, so you have to buy it outright. It costs $100. Then they say, well, you’re going to need this other special piece of equipment, too. That’s another out-of-pocket expense. These expenses can add up to the point that they eat you alive.

10th heart biopsy Facebook

Skeeter at the 10th biopsy of his new heart

Doctors may advise you to switch to different medications, or they may even double up on medications. Sometimes medical insurance only pays for a 30-day supply once a month, and they will not increase that to twice a month even if the doctors recommend it. Other times, you’ll get hit with a bill for something unexpected. I got a bill the other day for $38,675 for X-rays. You sit around and wait for answers, and you think, “How can I pay these bills? I can’t do it.” You just never know what’s coming. Insurance can’t pay for everything and neither can supplemental insurance. That’s why HelpHOPELive is important to me.

with old heart

“You just never know what’s coming,” said Skeeter, pictured with his old heart


According to data from 2012, 76.8% of heart recipients are still living five years post-transplant.


“I’m Glad They Kept Me Alive”

My advice to others is to stay positive and get rid of negative people. Concentrate on making other people aware of all of the good things that organ donation can do. I’ve got a positive attitude, and I try to stay busy fundraising, managing my finances and doing my exercises. I’m looking forward to figuring out how I can help people to be more aware of organ donation and what it means to be willing to donate their heart.

I woke up today. I can breathe. I can walk. I’m alive. I’m healthy. I have friends like all of you.

I’m glad they kept me alive. Life is good. Here I am, and I can see the sun shining.

With son Alan Coleman


HelpHOPELive, Donate Life Month, donate life, Touched By Transplant, transplants, kidney transplant, liver transplant, pancreas transplant, transplant costs, transplant medications, meds, paying for transplant

Follow our Blog to learn what happened when Skeeter met the wife and children of his heart donor!

Mending A Broken Heart: Love And Transplantation

Rick Brittell was diagnosed with congestive heart failure in 2011. In April 2014, Rick and his wife, Susie, moved from their home in Boise, Idaho to a trailer in Salt Lake City, Utah for 2 ½ months so that Rick could receive a left ventricular assist device (LVAD) as a bridge to a heart transplant—his only option for a healthy life. Rick and Susie returned home to Boise but left their home once again in April 2015 to move into a Salt Lake City apartment. Rick received his transplant in September 2015. Rick and Susie will finally be able to return home in March 2016 after a full year spent away from home. They have been fundraising with HelpHOPELive since January 2015.

Rick and Susie Brittell HelpHOPELive

Rick and Susie Brittell.


Why did you make the decision to wait before getting Rick listed for a transplant?


Rick: I could have been listed for transplant right after I received the LVAD but I chose to wait until April 2015 when my Medicare took effect. Had I proceeded right away with being listed, the procedure would have been covered but not the post-transplant medications, leaving me to cover $7,000 to $14,000 out-of-pocket each month. Once Medicare took effect, the surgery and the medications were both covered and the post-transplant monthly medication costs dropped to $400 to $600 per month.

Once listed, multiple factors influence how long a candidate waits for a transplant, including the candidate’s health and the number of organs available in a particular region. According to the United Network for Organ Sharing, “you may receive an organ that day, or you may wait many years.”

LVAD heart transplant

Rick lived with an LVAD until his transplant.


How did you feel when you found out you would have to relocate?


Rick: It was a shocker. When we skyped with our 3-year-old grandson, he would ask, ‘Why did you leave me?’ I couldn’t even talk to him because it tore me up. We were suddenly cut off from our family and friends and we had to make a whole new life for ourselves.

Transplant candidates must be able to leave home and come to a specific medical facility as soon as they receive word from their medical team that an organ is available. That’s why some candidates are asked to relocate close to that medical facility while they wait for “the call.”


How has the waiting process affected you emotionally?


Rick: I couldn’t drive for 2 years after I got the LVAD. I became completely dependent on my wife to take me everywhere for everything from a medical appointment to a simple trip to the store. After 40 years of employment, I had to stop working cold turkey. I had to deal with feelings of guilt and worthlessness associated with that. My freedoms were being taken away.

Susie: It was a sobering experience to discover who our true friends were and how our family would support us. We had to learn to do it on our own and figure out how to make it work with little support.

Rick: It’s stressful, but we have chosen not to hold onto animosity. But now when I tell someone, ‘I’ll be there for you,’ I take it very seriously.

The average wait time to receive a heart transplant is six months to one year. A transplant candidate can be removed from the waiting list if his or her health significantly improves or deteriorates.

 

Pie Night HelpHOPELive fundraiser

Support groups helped Rick and Susie find solace and community.


What advice would you give to another family waiting for a transplant?


Rick: Talk to someone who has gone through it. Learn about the procedure, the medications you’ll be taking and the side effects, and prepare for them. Don’t think that life will be perfect after the transplant. My body was torn up for weeks as I adjusted to the medication, and I pushed people away from me and felt mentally foggy. When you get that call, you will go from sky-high feeling lucky to get a heart to rock-bottom feeling guilty, sad or angry that someone had to pass away for you to get the transplant. You will swing back and forth, but you WILL level out again.

Rick Brittell heart transplant

Rick after his lifesaving transplant.

Susie: Do not think that you can shoulder the burden alone. As a caregiver, be patient and know that the person you love might get belligerent, angry or moody, but that is not the same person you love. The person you love will be back after a while. Find someone to unload onto so you don’t take out your frustrations on your loved one.

72 percent of American adults experience financial stress at least some of the time, and 26 percent experience financial stress most or all of the time. Start fundraising for a transplant as soon as possible to reduce the amount of financial stress you’ll have to deal with as you prepare for transplant.


What is life like after transplant?


Susie: I’m just so glad the waiting part is over. We are different people from when we first left for Salt Lake City. It has made us less self-absorbed and has opened our eyes to how narrow-minded you can become.

Rick: Hot dog, I’ve got a new lease on life now. I can look forward to seeing my family and my grandkids again. Before the LVAD, I could walk about 50 feet per day on oxygen before I was exhausted. Now I can walk 2 to 3 miles. I have realized that I can do this, and I see the light at the end of the tunnel. The journey is not over but there’s a lot more hope than there used to be.


Rick and Susie continue to fundraise with HelpHOPELive for post-transplant expenses including relocation, medical appointment co-pays and a lifetime of immunosuppressants.

 

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.

7 Amazing Books About Transplant And Disability

Summer is here! No trip to the beach or backyard barbecue is complete without a story that makes you laugh, cry, gasp, think or dream. Here are 7 amazing books that highlight the daily triumphs and struggles that come along with an injury, chronic illness or transplant.


 

7. Where Is The Mango Princess? by Cathy Crimmins

 

where is the mango princess

Topic: Crimmins’ husband, Alan, sustains a traumatic brain injury in a speedboat accident. As Alan copes with the effects of his brain injury, Cathy must learn to care for a man she doesn’t understand anymore.

Read It If You Liked: The Curious Incident Of The Dog In The Night-Time

Reader Review: “This book can be a difficult book to read because of the deeply emotional subject, but is a touching memoir told with a great deal of humor, and most of all… honesty.”

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“But all of a sudden Al stops talking and turns to me. “I want to call Cathy.”

I laugh lightly. “Al, I’m here. You don’t have to call me. Here I am.”

“No, I want to call Cathy. The Other Cathy. The one at home.””


 

6. Letters To Sam by Dan Gottlieb

 

Letters to Sam Gottlieb NPR

Topic: Gottlieb, paralyzed in a car accident, writes compassionate and insightful letters for his autistic grandson, Sam, afraid he won’t live to see Sam come of age. Gottlieb is the host of NPR’s Voices in the Family broadcast.

Read It If You Liked: Tuesdays With Morrie

Reader Review: “Letters to Sam is a touching, soul-provoking work of art which I could not put down. I read the book in one day and did not want it to end. As Dan Gottlieb [wrote] to his grandson, Sam, I could feel my own heart opening up.”

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I wanted to teach him what I’ve learned about fighting against the kind of adversity that I face almost daily and fear he will face also. And I wanted to tell him how peace often happens when we simply stop fighting.


 

5. Wonder by R.J. Palacio

 

Wonder Palacio book cover

Topic: What’s more intimidating than going to public school for the first time? That’s easy: starting 5th grade with glaring facial deformities. With courage and perspective, Wonder’s young hero, August, takes it all in stride.

Read It If You Liked: The Perks of Being a Wallflower

Reader Review: “Wonder captures the dual nature of childhood, both how cruel and how tender we can be with one another. It’s about the wounds we inflict and the scars we carry, all the things that teach us to do things differently the next time.”

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Everyone deserves a standing ovation because we all overcometh the world. –Auggie


 

4. Gathering Blue by Lois Lowry

 

Gathering Blue Lowry book cover

Topic: Kira, a disabled orphan, is left to fend for herself by a callous, unforgiving dystopia that has labelled her useless.

Read It If You Liked: The Giver

Reader Review: “With characteristic grace, Lowry pulls her reader into this tale of a devastated world in which judgments are harsh and the dead are left to rot in the fields. Here we find Kira, her leg twisted from birth and her heart, impossibly, nourishing hope.”

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Fear was always a part of life for the people. Because of fear, they made shelter and found food and grew things. For the same reason, weapons were stored, waiting. There was fear of cold, of sickness and hunger. There was fear of beasts.


 

3. Change Of Heart by Jodi Picoult

 

Change of Heart book novelc cover Picoult

Topic: Shay is sentenced to death for a double murder. One of his victims has a sister who is now in desperate need of a lifesaving heart transplant. Is it ever too late to seek redemption?

Read It If You Liked: My Sister’s Keeper

Reader Review: “Her writing pulls you in until you cannot let go until the end. This book about life and death cuts so close that it keeps you wanting more.”

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There’s always going to be bad stuff out there. But here’s the amazing thing — light trumps darkness, every time. You stick a candle into the dark, but you can’t stick the dark into the light.


 

2. Pulse by Edna Buchanan

 

Pulse crime suspense book novel Buchanan cover

Topic: Pulitzer Prize winner Buchanan brings us this gripping page-turner about Frank, a businessman who received the transplanted heart of a man who committed suicide. Guilty and conflicted, Frank investigates his donor’s life and stumbles upon a gristly conspiracy.

Read It If You Liked: The Girl With The Dragon Tattoo

Reader Review: “The writer’s imagination is a breath of fresh air, and I found myself involved with the characters – feel sorry for them, hate them, question them, and try to imagine myself in their shoes.”

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Frank Douglas has everything to live for. But someone else had to die first.


 

1. The Diving Bell And The Butterfly by Jean-Dominique Bauby

 

The Diving Bell and The Butterfly cover memoir Bauby Elle

Topic: At 44, French Elle’s editor-in-chief, Bauby, was blindsided by a rare stroke. When he awoke from a 20-day coma, Bauby was “locked in:” his entire body was paralyzed aside from his left eye. By blinking his way through the alphabet, Bauby dictated this vivid and moving memoir one letter at a time.

Read It If You Liked: The Glass Castle

Reader Review: “At times, I had to suck in my breath and set the book down to pause, it was so profoundly heartbreaking. He shares with us his deepest, raw thoughts about his daily life, his former lifestyle, his children, the blessings he misses and the pleasures he now looks forward to, as well as the torment he cannot control.”

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Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.


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