Tag Archives: kidneys

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.

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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.

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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.

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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.

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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.

I Gave My Kidney To Someone I’d Never Met

In 2014, Debra Brock was facing chronic renal failure after a 30-year battle with insulin-dependent diabetes. A mother of three, grandmother of six and great-grandmother of five, Debra knew she wouldn’t be able to continue supporting her family without a kidney transplant. That’s when family friend Amy Krontz made an incredible decision: she started the process of becoming a living donor for Debra, a woman she had never met.

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How are you and Debra connected?


Amy: Debra’s sister and I had worked in some volunteer groups together, which is how I found out that she needed a donor. We did not meet until I received final approval to be her living kidney donor.

Amy and Deb Brock HelpHOPELive

Living donor Amy with Deb Brock


What made you decide to donate to someone you didn’t know?


Amy: Debra’s sister posted on Facebook about their family’s need to find a kidney donor and that they were fundraising with HelpHOPELive. I recalled the pictures and posts that expressed Debra’s importance as the primary matriarch in a very close and involved family. I was particularly moved by her role in her grandchildren’s lives. I realized that such a positive, loving influence would be a tragic loss. Once I found out that Debra had gone through dramatic weight loss and had taken measures to control her diabetes but that her kidney damage was still too severe to reverse, I wanted to try to help.

Deb Brock HelpHOPELive

Deb is the “matriarch” of her family, says Amy


What were the preparations like?


Amy: I was tested beginning in February 2014 and I donated in August 2014. I had a few blood draws, a 24-hour period of urine collection and a 3-hour glucose test. I also took part in an educational appointment in which I was thoroughly informed about the procedure, including what to expect and all of the possible complications related to living donation.


What would have happened if Debra didn’t get a kidney?


Amy: Debra would likely still be on daily dialysis and would be experiencing complications with not just her kidneys but with other organ systems by now.

Debra: I would have continued with dialysis and prayed for more time to look for donors. Before Amy donated her kidney to me, every day I was faced with death.

Deb Brock HelpHOPELive

“Every day I was faced with death” before the transplant, says Deb


How did the gift of life impact your health?


Debra: The big difference is, I feel terrific! I actually enjoy going to the bathroom now because of my improved kidney function. I have freedom to plan activities with my family and not worry about bringing along my dialysis equipment.

Amy: The procedure was easier to endure than I had imagined. I was well-informed and experienced less post-operative pain and recovery than I had initially anticipated. The risks involved in being a living donor are very small, and making some healthy lifestyle changes has helped me to avoid any complications. A little bit of my time and minor pain for a couple of weeks afterward were small sacrifices to enrich and extend the life of another.

Ultimately, my life has not been compromised in any way living with one kidney. Living donation vastly improves the chances of a successful transplant compared to deceased donor outcomes. If I had more kidneys to give, I would do it all over again, and I strongly encourage others to consider it as well.

Deb Brock HelpHOPELive

The gift of life has helped Deb return to her life with family and “new babies”


Amy, did fundraising provide you assistance as a living donor?


Amy: I was an unemployed nursing student when I donated. I was reimbursed for mileage and travel for testing and appointments related to the donation.


Debra, why do you fundraise with HelpHOPELive?


Debra: My kidney transplant social worker gave me materials to review, and I chose HelpHOPELive because of the reviews I read. I had enough concerns on my mind as I was preparing for the transplant, and HelpHOPELive eliminated my worries about money. Today, I fundraise for prescriptions, travel expenses for post-care treatment and funds in case any medical emergencies take place.

Deb Brock HelpHOPELive fundraiser

Deb and her family fundraise for ongoing post-transplant costs


Do you share a special bond today?


Amy: Most definitely. We remain in contact and I am very grateful for the experience and for Debra’s appreciation for each new day. The choice I made to become her donor is reaffirmed consistently through my interactions with Debra and her family.

Debra: Amy and I share a bond that is not comparable even to a sister or your best female friend. She has given me a part of her. She has given me life. She has given me more time to spend with my family. I love her.


Debra, what does hope mean to you?


Debra: Hope means that there is a tomorrow!


touched by transplant fullWant to make a difference in the lives of kidney transplant recipients and living donors? Make a donation to the HelpHOPELive General Operating Fund today and help us support community-based fundraising campaigns for families.

Touched By Transplant: When I Met My Heart Donor’s Family

John “Skeeter” Coleman received a heart transplant in February 2016. Here’s what happened when he sought out the family of the man who donated his heart.

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As soon as I was well enough after my heart transplant, I went to visit my donor’s family. It was the biggest emotional rush I have ever had in my life aside from the birth of my children.

Skeeter listens to his new heart

Skeeter listens to his new heart

Hospitals typically do not allow direct contact between donor families and recipients for a period of time after a transplant. I mailed a letter to my donor’s family through my hospital. As soon as I sent the letter, the hospital provided me with a letter the donor’s family had written back in December. This is what it said:

This is a Christmas card to you from me and my family. My husband’s name was Paul. He was a great outdoorsman who loved the landscape and loved the military. He was a great father and husband for 22 years. We loved him. I’m just hoping you can appreciate his organ, whichever one you got.

I sent a copy of the letter to my daughters and son. They got on the Internet and started researching. Sure enough, my daughter managed to find Theresa, Paul’s wife, on Facebook. She accepted our Friend Request and got to learn more about me and my HelpHOPELive campaign. That’s when I turned to my daughter and said, “Let’s go find them.” And that’s what we did.

We met Theresa and two of her three sons at the Jiffy Mart in Chester, Texas, a town of just 312 people located a 4-hour drive from our hometown of Euless. Theresa said, “Would you like to go with us to the cemetery?” I told her I would love to.

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Skeeter visits his heart donor’s grave

At the cemetery, I got down on one knee and started rubbing my hands through the dirt and talking to Paul. All these words were coming out and all these feelings. All these tears started flowing and dripping in the dirt. I don’t know how long I was there. They had to help me stand back up, because I didn’t have the strength to get up on my own.

I asked if I could take them out to lunch. At a café, Theresa introduced me to all of her friends. We had catfish, fresh vegetables, good old country cooking while we talked. We talked about those boys’ daddy and what a great man he was. Paul’s best friend was there, and we talked to him about all the people who were recipients. Two people got kidneys, one person got lungs, one person got a liver, one person got part of his spine and I got his heart.

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Skeeter with his heart donor’s wife and children

After lunch, Theresa invited me back to their house. She showed me all kinds of pictures of Paul. After a few more hours, we made the four-hour drive back to Euless. I was exhausted.

We stayed in touch after that. I’d like to get back together with them again. They have been a great encouragement and source of hope to me. I hope I can be the same for them.


touched by transplant fullNeed help fundraising for a transplant? Start a fundraising campaign today at helphopelive.org. Keep up with Skeeter on his HelpHOPELive campaign page.

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.

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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.

 

HelpHOPELive Clients In The News October 2015

October brought us falling leaves, pumpkin spice indulgence and autumn fundraising milestones! Here are three compelling client stories featured in the news this month.


Matt Collura: Annual 5K Provides Financial And Emotional Benefits

Matt Collura 5K Run/Walk

In March of 2011, the Collura family, of Monroe Township, N.J. was rocked by a shocking accident: a snowboarding injury left then-28-year-old Matt Collura reliant on a wheelchair for mobility as he coped with a life-threatening traumatic brain injury. From acquiring specialized accessibility equipment that would keep him safe in his home to pursuing intensive rehabilitative therapy, Matt was facing a long emotionally and financially draining road to recovery. His friends and family members turned to HelpHOPELive for support. With Matt’s passion for athletics and running, a friend suggested planning a 5K fundraiser in his honor to rally community members to help cover the uninsured expenses as a result of injury.

Matt Collura 5K Run/Walk 2015

The Matt Collura 5K Run/Walk celebrated its 5th anniversary on October 11, 2015. The event draws hundreds of supporters who enjoy the opportunity to give back to their friend and neighbor as he continues to pursue recovery with dedication. For Matt and his family, the event is far more than an opportunity to offset vital medical expenses; the run provides a powerful dose of emotional support that keeps him striving forward. “This is a chance for [us] to participate in a day that Matt refers to as the best day of the year,” his supporters wrote on his HelpHOPELive Campaign Page. Since the accident, funds raised from the Matt Collura 5K Run/Walk have helped Matt to pursue the rehabilitation he needs to speak, walk with minimal assistance and pursue a greater degree of independence by moving out of his parent’s house and into a group home. (5K supports Monroe man’s recovery from accident)


Patrice Penny-Henderson: ‘Angel’ Aids Music Teacher With Rare Disease

Patrice Penny-Henderson Elkhart kidney transplant

A rare blood cell disease severely reduced Patrice Penny-Henderson’s kidney function, forcing the elementary school music teacher to receive dialysis three times each week to stay healthy. Despite Medicare coverage, out-of-pocket costs of $20,000 or more made a kidney transplant seem out-of-reach for Patrice. That is, until a chance encounter blossomed into an unexpected lifeline.

In 2015, seven years after she was diagnosed with end-stage renal failure, Patrice reconnected with a former co-worker, Susan Law, who was stunned to hear about her medical ailments. Susan sprang into action, connecting Patrice with HelpHOPELive and helping her to plan community fundraisers to cover her medical bills. Susan and Patrice “chose HelpHOPELive over other popular sites like GoFundMe” in order to secure a tax-exempt donation option for her contributors and expert insights from a HelpHOPELive Fundraising Coordinator. Patrice calls Susan “an angel” for stepping in to support her efforts to secure a lifesaving transplant. (Longtime Elkhart music teacher…needs kidney transplant due to rare disease)


Michael Carns: Military Vet Puts Difficulties On Display To Fundraise For MS

Michael Carns veteran MS multiple sclerosis Marine National Guard

After dedicating himself to years of service in the U.S. Marine Corps and National Guard, Michael Carns was attacked by an enemy of a different kind: multiple sclerosis (MS). The 46-year-old father of three began to rapidly losing his independence and his mobility, struggling to provide for his three children as daily tasks like cooking and using the bathroom became formidable obstacles.

That’s when Michael learned about a treatment trial in Chicago that offered hope for potentially halting the progression of his MS in its tracks. He would need to raise $150,000 to be eligible for the potentially life-changing course of treatment. Michael knew he had to do something to show his community why he needed their emotional and financial support. He reached out to a local news station and offered them a chance to film the impact of MS on his daily life.

In a video interview, Michael shows viewers what life with MS really looks and feels like, from painstakingly transporting himself to his son’s football games to coping with fears that he will not be there to walk his daughter down the aisle on her wedding day. For Michael and his children, fundraising with HelpHOPELive has come to represent a second chance – an opportunity for Michael to pursue advanced treatment that could give him back his independence. “Believe that there is hope, still, because there always will be,” affirmed his son Mikey. (Military veteran hoping for treatment to fight MS)


Get your campaign in the news! If you need help with press releases and media outreach, contact your HelpHOPELive Fundraising Coordinator today.

 

These Families Were Touched By Transplant

April is National Donate Life Month.To raise awareness about the importance of organ donation and to celebrate transplant donors, we are sharing stories of HOPE from patients and families touched by transplant. Here are our first three transplant stories.

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Touched By Transplant: Struggle and Triumph

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This is HelpHOPELive client Derek Avillanoza’s transplant journey.

I found out I would need a transplant in February of 2011. I became very ill. My doctor referred me to a nephrologist who told me the bad news, a conversation which I recall still today: “It’s obvious you will need a kidney. It’s just a question of when.” I was devastated. I started dialysis in June of 2011.

Honestly, I didn’t know that much about kidney transplants before I needed one myself. Then reality hit me. I educated myself, and tried to learn about everything concerning kidney failure. I am still learning and educating other people to this day.

My wife and I felt like we were on top of the world when we first found out we were a donor match through virtual testing. We got very emotional. We found out just days before the procedure that we would not be an appropriate transplant match: my body would reject my wife’s kidney because of higher antibody levels in my system. We were devastated, angry, disappointed and heartbroken. But after signing up for a paired kidney exchange, we experienced another cycle of intense emotions, this time positive, when we got the ‘final’ phone call in January of 2015.

I was absolutely nervous before the operation, because I didn’t personally know many people who had undergone a transplant. The transplant team at UC Davis was outstanding and very informative, letting me know exactly what to expect. I asked a whole bunch of questions!

The recovery process has been very humbling and has required a lot of self-discipline as I control my daily ritual. I have to take prescribed medications at a pre-appointed time twice a day, check my vitals twice a day, manage a strict diet to keep control of my diabetes, and fill out a daily transplant diary to monitor physical changes. I have to chart all of the medications I take (18 in the morning, 15 at night). Oh, and then there’s bloodwork twice a week, and a 6.5-hour drive every Tuesday to visit UC Davis. These steps are worth every minute – they extend my life. I am very thankful.

Friends and family have been very supportive, and I’m very grateful for their kindness and love. Without my wife’s constant urging, I would not even be here talking about my transplant today. I believe that we got married for a reason: she was sent down from heaven to be my angel.

I have had to medically retire from my career in government because of my illness. We were advised by the financial coordinator at UC Davis Transplant Center to pursue a fundraising campaign with HelpHOPELive to cover medical and relocation expenses related to the transplant. We continue to work with HelpHOPELive because we’ve started to receive medical bills associated with the transplant, and we are also incurring expenses related to the medications I need to stay healthy.

I am so blessed and grateful to have gone through this procedure. It has extended my life so that I can spend more time with my wife, children and grandkids.

These are the five words that describe my transplant journey: Grateful. Honored. Humbled. Overwhelmed. Emotional.

 

Touched By Transplant: A Sense of Destiny

David, David Ludwig, HelpHOPELive, transplant, lung, lungs, lung transplant, paying for lung transplant, post-transplant, transplant medications, transplant meds, cystic fibrosis, CF

This is HelpHOPELive client David Ludwig’s transplant journey.

I really couldn’t believe it when I found out I needed a double lung transplant. I always thought my cystic fibrosis would have been cured before I reached that point. The whole idea of a transplant seemed far-fetched to me, and I knew very little about transplants prior to having one myself. All I knew was that post-transplant, you live on immunosuppressants for the rest of your life. Unfortunately, I didn’t have much time to learn more about my transplant before it occurred.

I never actually received “the call” telling me I would get a transplant. I had just survived multiple emergency surgeries, including a procedure prompted by my lung rupturing which caused me to bleed out internally. I had a pneumothorax while receiving treatment for a cystic fibrosis-related illness, and I was in critical condition when I was transferred to the Keck USC Medical Center for transplant.

My family was very supportive and so were the friends who found out about my circumstances later. My aunt found HelpHOPELive, and she and my mother used my Campaign Page to fundraise for me while I was incapacitated.

I felt very calm when they offered me the transplant. My life was at stake. I remember giving the resident surgeon a thumbs-up when he asked if I wanted the double lung transplant. I had a strange sense of comfort during the entire process, despite having large extracorporeal membrane oxygenation (ECMO) tubes and a tracheostomy tube in my neck and additional tubes everywhere. A sense of destiny and the will to overcome seemed to envelop me during this time.

The recovery has been intensive, partially due to post-transplant kidney failure which lasted for six weeks. I was bedridden for several months, so I lost all muscle in my arms and especially in my legs. I had to learn how to walk again. I’m still building up stamina with my new lungs, and that has been the hardest part of the recovery process.

I have new expenses after the transplant to add to the expenses I have had to manage because of my cystic fibrosis. Now, in addition to anti-rejection medications, I take several drugs and numerous vitamins to offset the side effects of the immunosuppressants.

My future is optimistic. Cystic fibrosis is typically a death sentence, a 13- to 30-year time bomb. These new lungs have spared me from my original fate. I am forever grateful to my donor. My donor’s tragic loss has been my gain, and the same is true for many others. The biggest thing I’m looking forward to is playing a round of golf. Now, I will be able to do it without wheezing or breathing through the proverbial straw.

These are the five words that describe my transplant journey: Hope. Gratitude. Rebirth. Renewal. Happiness.

 

Touched By Transplant: Infectious Positivity

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This is HelpHOPELive client Josie Marie Setters’ transplant journey as told by her father, Chase Setters.  

My wacky and energetic 5-year-old daughter, Josie, was taken to a specialist at The Children’s Hospital at OU Medicine in Oklahoma City to evaluate recurring bladder infections. During preliminary checks, it was discovered that Josie’s blood pressure was upwards of 160/90. She was immediately admitted, and two days later, we learned that Josie had chronic kidney disease. Her kidneys were operating at around 30%.

Josie, now 8, remains wacky and energetic despite her diagnosis. Her infectious positivity and silliness have united our community around her. She needs a kidney transplant to survive, and we are hoping to get Josie the transplant she needs in the summer so she can continue to attend school like a normal 8-year-old.

I’m in Information Technology by profession, and I’ve always been a bit of a geek. In early 2015, I posted a Facebook link to Josie’s story and HelpHOPELive campaign. Less than 5 minutes after I posted the link, Wedge, a serial gamer and host of the YouTube channel TheManaSource reached out to me and asked permission to use my story. Next thing I knew, I was tagged in a video that Wedge had created specifically to help my daughter fundraise.

This gesture meant the world to me. Most of us can grasp the idea of selfless giving, but once you witness this miracle in person, it is no longer an idea. It manifests in an incredibly powerful and humbling way, and it becomes almost impossible to express the gratitude you feel towards those who contribute.

We have received donations through HelpHOPELive from contributors across the U.S. One-time strangers who got to know us through Wedge’s video have donated over $1,000 to help Josie. My company of 75 employees pulled together to donate over $10,000, which the company matched.

Is human nature good or evil? Maybe my view has been skewed as I’ve worked to fundraise for my daughter’s lifesaving transplant, but my resounding answer is that our nature is good.

These are the five words that describe my transplant journey so far: Fear. Acceptance. Limitations. Waiting. Hope.

 

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