Tag Archives: pre-transplant

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.

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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.

 

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.

 

The Rewards And Challenges Of Transplant Social Work

You already know what it feels like to prepare for a transplant as a patient. But how do transplant professionals view the process? We asked Laurie McDonald, a clinical social worker and case manager for the UNC Center for Transplant Care, to answer our questions.

heart in hands transplant


What are some of the biggest challenges of transplant social work?

At times, I really, really want a particular organ recipient or donor to succeed, but based on his or her circumstances, that person is just not a suitable candidate. After years and years of this line of work, I have to console myself with the truth: transplant is not for everyone. For some, a transplant will make the situation worse instead of better. It’s difficult to keep that message at the forefront when the person in front of me truly believes a transplant will save them.


What are some of the rewards you experience?

Just this week, two people were transplanted in a row. Now, they are delighted to be breathing without supplemental oxygen and walking more easily than they have in a long time. To see joy and relief on the faces of transplant recipients and their family members is wonderful. I love seeing patients years post-transplant living full lives that honor their donors. Transplant remains a daily part of their lives, but it is no longer the central focus.


Have you witnessed areas of progress in transplant assessment?

Within the past few years, we have become more invested in transplant assessment tools that will give us concrete, unbiased information. When a doctor recommends lab work, those tests will result in definitive numbers that the doctor can use to diagnose and treat you. When you’re dealing with social and emotional factors, it’s far more difficult to accurately quantify and represent a patient’s profile.

We have started using a validated measure that is linked to patient outcomes developed by Jose Maldonado at Stanford. I use this risk assessment tool to come up with a score that reflects a candidate’s psychosocial situation. It’s imperfect, but it’s absolutely progress. It makes it far easier for team members to compare information and communicate across specialties. Personal and even subconscious biases are always a factor, so it’s extremely important for us to continue to take steps in this direction.


What advice would you give to those who are considering transplant social work?

Do it! It’s stimulating, rewarding, wonderful work. I absolutely love it. 15 years in and I’m not bored yet!

Quality improvement is really important in transplant in general and at UNC in particular. We are always learning and working to do things better. There are advances in medication, medical techniques, social evaluations and other areas happening constantly. It’s really an interesting place to be.


Share your experiences as a transplant candidate, recipient or social worker on Facebook.

What To Expect During A Pre-Transplant Assessment

Transplant care teams give living donors and transplant candidates psychosocial assessments to determine whether or not they are ready to move forward. Here are answers to your burning questions about pre-transplant assessments from Laurie McDonald, a clinical social worker and case manager for the UNC Center for Transplant Care.


Why do transplant candidates need to go through a mental and emotional assessment?


Getting a transplant kicks off a lifelong journey. It’s not a moment in time. The purpose of the psychosocial assessment is to make sure that transplant candidates have a support system in place, the emotional hardiness to handle the journey and the incredible stress associated with it, and the financial means to avoid devastation.

I tell people they will need to take care of their BMW: Body/Mind/Wallet. Be adherent to your medical regimen; be diligent with exercise and medications. Depression and anxiety rates tend to be higher for people diagnosed with end-stage organ diseases. As a result, some people may need to use tools to improve their mood before they are mentally and emotionally prepared for the transplant process.

psychosocial assessment test therapy transplant pre-transplant


Are there any ‘red flags’ that may emerge during the transplant assessment?


Whether I’m speaking to a young adult or a senior, some people come to me with a feeling of invincibility and have a very hard time believing that there are legitimate health risks associated with the transplant that might impact their lives. That can apply to any candidate or donor who walks through the door. Some people do not have the resolve to commit to a lengthy period of recovery and self-care, including managing diet, exercise and follow-up appointments. On the other hand, if a potential living donor is in fantastic shape and is a dedicated and avid exerciser, that person may need to truly consider what it will look like and feel like if they have to limit their activity after the procedure.

If people come to me and cannot tell me what the risks of transplant are in their own words, whether financial or health-related, I provide education and do NOT sign off on transplantation or living donation until the patient can do so. One of my jobs is to make sure that there is informed consent; the candidate must understand the transplant journey before signing off. That could take three or four sessions with me.

stop sign transplant assessment red flags


What do you consider when you speak with living donors?


I look at what living donors already know about the transplant process and the associated risks. Is the living donor making this decision on his or her own, or being pushed into it by someone else? Is the financial situation stable? Are there any potential dangers – emotionally, physically or financially – that may impact the process?

couple arguing disagree argue


What financial considerations do you discuss with transplant candidates?


I have seen patients go bankrupt from a transplant. I don’t ever want to see that again. That’s why we carefully consider a transplant candidate’s financial circumstances during the psychosocial assessment. Usually a financial coordinator will be the one who lets people know what their insurance will cover and what they are likely to face as out-of-pocket expenses.

bill bills calculator medical bills financial bankrupt


Can transplant recipients or donors do research ahead of time?


If you’re looking at websites that are affiliated with legitimate transplant centers or UNOS, that information is likely to be accurate and up-to-date. Some people will come to me and say, “I saw a transplant on TV once, so I know what to expect.” TV shows and websites can create a negative and inaccurate picture of the transplant process very easily. It’s important to get your information from a reliable source. There is a lot of information out there, but there is also a lot of misinformation.

online research desktop


Are there other places online where candidates or donors can find support?


I’ve heard from patients that it can be beneficial to join transplant mailing lists or social media support groups. Take what you read on these networks with a grain of salt: some people come to these sites with an agenda or an axe to grind. At the same time, however, these support groups may become a very valuable part of your transplant journey. Mentoring can be emotionally uplifting, particularly when even your close friends and family members can’t fully comprehend what you’re going through. Talk to someone who gets it.

support group peer support therapy


If you have additional questions about transplant assessments, reach out to us on Facebook or on Twitter. Thank you for your insights, Laurie!