Tag Archives: surgery

Voices Of Hope: I Am Living Proof Of What An Organ Donor Can Do

Lauren Ann Arkens received a lung transplant in December 2015 after years of struggling with the effects of cystic fibrosis. She draws support from a strong community of friends and family members including her husband, Tyler. We asked Lauren and Tyler for their perspectives on fundraising and being there for the people you love.

Lauren Ann Arkens HelpHOPELive

Lauren Ann, Lily and Tyler Arkens


How did the reality of lung transplantation differ from your expectations?


Lauren: I had no expectations going in. I heard about what could happen and what was going to happen but nothing can prepare you for what actually happens. In a way, I am kind of happy I didn’t speak with anyone prior to my transplant because I think I would have been comparing what I am going through to what they are going through. Everyone is different and everyone’s experience is going to be different.

Lauren Ann Arkens HelpHOPELive

“Nothing can prepare you for what actually happens” during a transplant

Tyler: This is a really hard question. Personally, the only expectation I had was that life would be noticeably different, that the pieces would fall into place and I would simply deal with however they landed. I know I told a lot of people, “Everything will work out the way it should. Maybe not the way I want, but the way it should,” and I just left it at that.


What’s the worst part of life after transplant? What’s the best part?


L: The worst parts of life post-transplant are all the follow-up appointments and specialists I have to see. I see more doctors now that I am “healthy” than I did when I was sick and on the waiting list. The best part of life post-transplant is getting three hours back in my day when I used to have to use a vest and nebulizer treatments. Also all the energy I have, being able to move around, exercise, run and be a mom and wife. All of these things people may take for granted, but for me, the little things were the most difficult pre-transplant.

Lauren Ann Arkens HelpHOPELive

Lauren sees more doctors now that she is “healthy”

T: The worst part is by far the uncertainty. We had our fair share of hospitalizations when Lauren was still seeing her pulmonary doctors and we could usually tell when something wasn’t quite right; Lauren knew her body pretty well. Today, we have a new normal that we’re adjusting to. While Lauren might feel fine internally, there could be more going on, so when we visit, the uncertainty of whether or not Lauren is going to be hospitalized can be a little frustrating.

The best part is Lauren’s quality of life. She’s just happier. Things are fun and funny again. You can see her light up with joy when something touches her heart or fills her cup. She has a tremendous amount of energy, part of which is more oxygen in her system, and part of which is realizing that she’s really been provided another chance.

Lauren Ann Arkens HelpHOPELive

“You can see her light up with joy” again, said Tyler


Lauren, is your health journey completely over now that you’ve been transplanted?


L: Absolutely not! Being transplanted just adds another chapter. There is a lot of care that goes into maintaining new lungs. My transplant team has a home monitoring program that I have to do, I have lab work done once a week and I have appointments two to three times per month. It is never-ending but it is all for the better! This was a gift–a huge gift–and I don’t want to fail at it. My work is never going to end.

T: Lauren is a worker. I have described her as tenacious, consistent and determined. She understands what it takes to succeed. The expectations have been laid out and she doesn’t take it lightly. She understands the gift and the work required to keep it.

Lauren Ann Arkens HelpHOPELive

Lauren must work daily to keep her lungs healthy


What’s one thing about transplants you wish everyone knew and understood?


L: People don’t understand the time and money it takes to have a transplant. Medications are expensive, co-pays are high and some medications are not covered by insurance. There are hospital stays that may be unexpected plus regular appointments and procedures. None of this is easy. It can be draining mentally, physically, emotionally and financially.

Lauren Ann Arkens HelpHOPELive

Transplants are mentally, physically, emotionally and financially draining

T: There is so much that people don’t or can’t understand with regard to chronic illnesses and treatments. We’ve learned to give people the simplest answers and to operate from the mindset that every body is different and everyone’s response to treatment is different. It isn’t a simple process in which you check the boxes and reach a goal. This is a lifetime of learning, adjusting and adapting. That’s hard to explain [to others].

Lauren Ann Arkens HelpHOPELive

“Nurse Lily” helps mom with home health care


How did you learn about HelpHOPELive?


L: My transplant social worker told us about HelpHOPELive and said that many of her patients had great success with it. We decided to use HelpHOPELive because it was the best option for us. A family friend set up a campaign for us so we didn’t have to worry about it on top of everything else we were dealing with. One factor was that HelpHOPELive donations would be tax deductible for the person donating and we would not be taxed on the funds we requested for medical and related expenses.

Lauren Ann Arkens HelpHOPELive

Fundraising helps cover out-of-pocket medical needs

T: It was hands down the best program for us to fundraise with. As a nonprofit organization, it allows the patient to benefit the most and it gives people peace of mind when donating that their gift or donation will be used wisely and never for another purpose.


Why is fundraising important to you on this transplant journey?


L: To be honest and blunt, if it wasn’t for fundraising, I do not know how we would have afforded medication, gas for appointments, meals and three months of house and electric bill payments while I was off work. All of that has been HUGE and has made such a difference for us in not having to worry while recovering.

Lauren Ann Arkens HelpHOPELive

“I do not know how we would have afforded medication” without fundraising

T: Fundraising helps us afford the things we need for Lauren to survive. But it also provides us with a network of people who have really shown that they care about Lauren and her journey. It blows me away. Fundraising gives people peace of mind that they are supporting someone who really needs their help. Lauren is a real, live person with whom they can meet and she can give them credit and thanks for what they’ve done to support her journey. Finally, fundraising allows us an opportunity to pay it forward. We’ve been overwhelmed by the support, and that has motivated us to go out and give back on behalf of that community.


What advice would you give to someone who has just been added to the lung transplant waiting list?


L: Fundraise as soon as you get listed or even before. We benefited greatly from fundraising early. It made going into the transplant a little easier knowing we had money to pay for things we needed when we needed them.

T: Don’t think about the enormity of the situation and don’t let the weight of the unknown get to you. If you’re able, continue to live your life. Take care of yourself and handle your business every day. That’s all you can do. Then, when your time comes, just focus on the instructions you’ve been given and execute.


How important are friends and family members during this process?


L: It’s extremely important to have friends and family involved in the process. If it wasn’t for the support we received, whether financial or through prayers, I don’t know where we would be today. It took a lot of pressure off of my husband during my period of recovery so he didn’t have to handle everything. People care and they are often amazed at what a person can go through and how they can recover.

Lauren Ann Arkens HelpHOPELive

Friends and family support Lauren with “Lungs N Roses” shirts

T: We’ve developed a very close, tight-knit group of people we can count on when we need to. Interestingly enough, it’s not the people you see or talk to the most who will step up when you need them the most. It’s the people who, when you see them, you feel like you can pick right back up where you left off.

Support for us has come in a lot of different forms. We had a small team that set up meals, household chores, donations, gift cards, taking our daughter, Lily, to and from school and staying overnight while Lauren was hospitalized and recovering. We’ve benefited greatly by creating different ways for people to help and giving them options.


Tyler, can caregiving during a transplant change a relationship?


T: It creates a different dynamic for each relationship. My relationship with Lauren changed a lot. Lauren was in survival mode and despite not wanting the help (she has a strong will), she needed it. It’s hard to ask for help. From my perspective, all I wanted for Lauren was to feel well. I had to adjust to the new dynamic of our lives. There is always a give and take in every relationship. You really have to open yourself up to give yourself to someone and accept someone.

Lauren Ann Arkens HelpHOPELive

“My relationship with Lauren changed a lot,” said Tyler


Are you an advocate for organ donation?


L: I am living proof of what an organ donor can do. It is a chance at a better life. My life was so restricted pre-transplant, and now, what I can do is endless.

T: Yes; the obvious reason for that is because I’ve seen someone’s life change completely. But even if our result wasn’t as positive as it has been, I would continue to be an advocate. We’re all called to give life. We need to discover that giving life has many different meanings and it looks different for everyone. If we’re all really trying to give life, why not give part of yourself to someone who needs it?

Lauren Ann Arkens HelpHOPELive

Tyler celebrates his wife’s transplant journey


What does the word HOPE mean to you?


T: Hope is knowing that no matter what you’re going through, there is something better on the other side. It is contagious and inspiring and if we’d just let it, it would change our world.

L: Hope means believing that there is something better for you. And whatever Tyler said!

Lauren Ann Arkens HelpHOPELive

“There is something better on the other side.”


Learn more about Lauren and Tyler’s journey at helphopelive.org. Find out how you can support a spouse or loved one with their out-of-pocket transplant expenses by reaching out to HelpHOPELive on Twitter.

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.”

Click for more


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”

Click for more


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.”

Click for more


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.”

Click for more


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.”

Click for more


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

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!

A 77-Year-Old Donates A Kidney To Save His Son

On October 15, 2015, 77-year-old Bill Graham, Sr. became the oldest living kidney donor ever recorded at the University of Maryland Medical Center as he donated a kidney to his son and HelpHOPELive client, Andy. The transplant was a lifesaving gift for Andy, who had been fighting end-stage renal disease since 2013.

Andy is described as a “kind and generous man” by his mother, Mary Lou. He and his family were blindsided two years ago when he was diagnosed with acute renal failure despite exhibiting no symptoms or sign of the diagnosis. The unknown autoimmune disease that deteriorated Andy’s kidneys required him to receive dialysis three days each week.

Andy Graham dialysis HelpHOPELive

Andy received dialysis weekly

Andy became unable to officiate high school football games, a pre-diagnosis passion, and he could no longer maintain his fulltime job as an auto industry manager. Within 2 years, even climbing stairs or walking short distances became a major challenge. Andy needed a miracle –and that’s when his father stepped in.

Andy Graham Bill Graham HelpHOPELive

Andy with his donor Bill and his dog Angel

77-year-old Bill Graham, Sr. offered to donate a kidney to save his son’s life. To become a viable living donor, Bill lost a whopping 53 pounds at the request of Andy’s transplant team. “The doctors were truly amazed at his good health,” said Mary Lou. “He was so happy to be able to give his son the gift of a new life. Surgery was a complete success and the guys are on the road to recovery.”

Andy Bill Graham HelpHOPELive

Bill Sr. and Andy are in good health

In a letter, Mary Lou thanked their generous friends and family members, who helped the transplant take place through their donations. With both donor and recipient now in good health, Andy and his family will still face multiple expenses related to the transplant, including expensive immunosuppressant medications that he will need to take for the rest of his life. Andy and his family continue to fundraise with HelpHOPELive to help offset those uninsured expenses and cover any unanticipated expenses that may arise.

Learn more about Andy and his transplant journey on his HelpHOPELive Campaign Page.

 

How To Save A Life In 30 Seconds

Blood cancers like leukemia kill more children in America than any other disease. As part of the largest network of bone marrow donor centers in the United States, Delete Blood Cancer has registered more than 600,000 donors and provided over 2,000 bone marrow transplants to patients in need. We spoke to Desirée Chavis, the organization’s communications specialist, about making an impact through bone marrow donation.


What is Delete Blood Cancer’s mission?


We seek to register as many eligible and committed bone marrow donors in the U.S. as possible. We are also an international organization with a presence in 5 countries. Part of our mission is also to bust the myths surrounding donation and try to empower others to be advocates for donation themselves. We want people to know that it takes just 30 seconds to swab your cheeks and register as a potential donor. You could change or even save someone’s life!

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What would you say if someone asked, why should I become a bone marrow donor?


  1. It’s an amazing and unique experience.
  2. Your bone marrow will replenish itself.
  3. Receiving bone marrow can be lifesaving for patients. Without a donor, many face extreme medical, financial and emotional hurdles–you are giving them a precious gift.
  4. Minorities and mixed race recipients can have a harder time finding a donor, so your contribution can really make a difference in their lives.
Nick Karavite HelpHOPELive

HelpHOPELive client Nick Karavite received a lifesaving bone marrow transplant.


What are some of the most common misconceptions about becoming a bone marrow donor?


The biggest misconception is around the methods of donation and the pain involved in donating. Whether you donate through the peripheral blood stem cell method (PBSC) or the surgical method, you’re back in action very quickly. They are both same-day outpatient procedures.

PBSC is used for 75% of donations. With this method, you receive a daily injection of filgrastim 4 days pre-donation to increase the number of blood stem cells in your body, so you may feel like you have the flu for a few days. During the several hour donation, a machine takes blood from one arm, removes the blood stem cells and returns the blood to the other arm. You can use your iPad, read magazines or watch TV while you donate.

A Delete Blood Cancer donates via PBSC

A PBSC donation in progress.

Surgical donation is used in the other 25% of cases. In these cases, surgeons go in with a special syringe (to extract bone marrow) while you are under anesthesia. On average, it takes a little over an hour and you don’t feel anything during the procedure. You can still leave on the same day, making sure that you limit strenuous activity. Most donors describe feeling slightly tender or bruised at the injection site.


Has your work allowed you to hear stories from patients whose lives have been changed by donation?


Our main mission is to save lives; we encounter many rewarding moments while working toward that! Something amazing about our work is that a donor in any country we serve can fill the need for a patient outside of those borders. Up to one year (or two in some places) after transplant, a donor and recipient cannot have direct contact, but after that, if the desire is mutual, they can begin direct contact with each other and even plan to meet.

I remember one incredible story about a recipient in Texas, Larry, and his donor in Germany, Johann. A year after Larry’s transplant, Johann came to visit him in Texas! Larry brought up an amazing point: he and Johann now share DNA. They were basically “brothers” because of Johann’s decision to donate. Larry was so excited to meet him, and Johann was welcomed into a new family. He gained that family by saving a life.

wilson donor

Larry and Johann were linked by Johann’s lifesaving donation. Source: Houston Chronicle


Go to deletebloodcancer.org to register to be a donor now. Share your donation or bone marrow transplant stories with us on Facebook and on Twitter