Tag Archives: volunteering

Voices of Hope: Living With LAM

I once wondered if I would make it to age 30; I’m 38 now. I am Nicole Seefeldt, and I have been living with the chronic lung disease lymphangioleiomyomatosis – more commonly known as LAM – for more than 10 years.

Nicole Seefeldt HelpHOPELive

Nicole after an improv workshop


My Story


In 2010, I began having a yearly talk with my doctor about a (double lung) transplant. I was feeling fine at the time with my LAM, but my doctor knew it was a good idea to bring it up as soon as possible to prepare me. At every session, the doctor would check my oxygen numbers to determine whether or not getting evaluated for a transplant would be in my immediate future.

For me to stay on my insurance plan, I had to work 30 hours a week. That was a significant reduction to my original work hours, but my energy levels became so unpredictable, I could only work for an hour or two on a good day before needing a break. I was planning to work up until my transplant evaluation, possibly part time. But my doctor advised me to quit working in July 2015 when I experienced a rapid drop in my oxygen levels and had to be taken to a hospital immediately. My doctors still don’t know what caused the desaturation, but since then, I have needed oxygen 24/7.

I had to talk with my parents and friends to tell them I would need their support and a dedicated caregiver to help me through the process. My best friend stepped up right away! Luckily, support is one thing I was not lacking as I began to prepare for transplant: I am well-connected via social media, volunteer work and improv comedy, which I like to do in my downtime.

Nicole Seefeldt HelpHOPELive

Nicole set a goal of $20,000 when she started fundraising

When I started fundraising with HelpHOPELive, I set a goal of $20,000 in order to cover the expenses I would be responsible for when the time came for my transplant. The $20,000 would also allow me to receive two challenge grants from HelpHOPELive.

HelpHOPELive: Contact your Fundraising Coordinator today to learn more about how to get a challenge grant when you reach a fundraising milestone.

Since last year, some of my disability insurance benefits have been decreased, changed or even eliminated, so my out-of-pocket expenses may continue to increase, especially the temporary housing costs I’ll face during my post-transplant recovery period (I don’t meet the distance requirements set forth by my insurance provider to be covered or reimbursed for this expenses). That’s why fundraising is an essential part of this journey.

It’s easy to feel shame and guilt when you have to stop working because of an illness. Fundraise to take some of the pressure off for you and your family and free up your expenses to stay afloat until you can get to a healthier place. It’s important to be transparent if you’re struggling. You have to say, look, this is why I need this money: I am on X medications that cost me X per year; my insurance premiums cost me X per month, even with Medicaid. People understand that as long as you give them something quantifiable.


How I Keep Hope Alive


There are a few things I do to fight back while I wait for a life-changing transplant:

  1. Keeping myself healthy. My exercise levels are back to a healthy level so I can do a few light weights and other things to build up my upper body for transplant. I need my upper body to be strong enough to rebound and heal after the transplant takes place. There were times in the past where I wouldn’t feel good and would get frustrated with exercise. But exercise is one thing I feel like I can control, and my lungs feel much clearer when I do it. It’s the one gift I can give my medical team to fight back.
  1. Staying patient. Living with a chronic illness and facing your own mortality puts your priorities in order in terms of what you value. Ultimately you learn that it’s rough, but it’s not insurmountable. You find your ways to cope and reconcile things. You have to at least in some aspect use whatever you have to fight back and to hang in the fight. I’m empowering myself and other people to make life more manageable. Maybe the research is too late for me but it might not be too late for someone else.

Nicole is fundraising with HelpHOPELive for LAM-related expenses, including a limited period of lost wages as she remains on long-term disability, COBRA insurance payments, oxygen rentals and other uninsured costs.

Life On The Heart Transplant Waiting List

Patrick McEntee was diagnosed with cardiomyopathy in 1996. By 2008, he had experienced two strokes and a non-obstructive heart attack. He received an LVAD in 2014 and began fundraising with HelpHOPELive six months after being listed for transplant. In honor of Heart Month, here are Patrick’s observations after a year and a half on the transplant waiting list.

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Pat received an LVAD in 2014


The Physical Impact


I was evaluated for transplant at the Cleveland Clinic in August 2014 and again in September 2014. I was admitted to the hospital immediately upon completion of that second evaluation and was officially listed for transplant that month. My LVAD was put in two days later. It was strange because I had walked – struggling to do so, but still walking on my own – to appointments all over the Clinic’s campus that Friday, and doctors thought I would be listed as a low-priority Level 2 on the waiting list. By Monday, they wouldn’t allow me to get out of bed. I didn’t feel any different, but I went with what they told me. Things escalated very quickly.

The LVAD knocked me for a loop. I didn’t quite know what I was in for. I was sedated for three days after the procedure and I spent a few more days in the ICU. I was in the hospital for a month total. I knew I was going for transplant evaluations, but I really had no idea that I would be there for a month. I thought I’d be returning home the same day. I got the LVAD and it was clear I wasn’t going to be able to continue working and living. I had to apply for disability and prepare for transplant.


Financial Challenges


When you go for a heart transplant evaluation, you don’t just see a transplant coordinator. You also see a cardiologist, a bone doctor, a dentist, a dermatologist and more–and there are expenses associated with each. It’s $30 every time I walk up to a doctor’s desk, plus parking and travel: it’s a 3.5-hour drive to Cleveland and 3.5 hours back home every time I have an appointment. I’m there at least once a month, and I’ve been admitted to the hospital twice during regular appointments since the LVAD was put in to help prepare my body for transplant.

Pat makes a 3.5-hour drive to his transplant center.

Pat faces a 3.5-hour drive to his transplant center


The Role of Fundraising


I’m honestly overwhelmed at the support I’ve been receiving. I’ve had family members, friends, and even friends-of-friends and anonymous donors make significant donations. Most of my fundraising has happened through online sharing and word-of-mouth. The most unnerving thing financially is not really knowing what medications I’ll be on and how much they will cost. Thanks to fundraising, even if I’m looking at $1,000 per month out-of-pocket with prescriptions, I have enough built up that I would be able to cover it for quite a while.


Finding Gratitude


The realization that there are certain things I can’t do is a challenge. Seventy- and 80-year-olds say that, but here I am at 41 saying that myself. But overall, I’m very thankful for the situation that I’m in. I’d love to be completely healthy, obviously, but it is what it is. I’m happy to be able to come and go and do what I want and still have a decent level of independence at this stage.

My wife has been tremendous. She has helped me take it day by day and roll with the changes. She has to be careful now about scheduling her travel for work in case I get ‘the call’ or need her help. It’s a toll that she’s happy to deal with, but it does get in the way of her being able to do what she wants or needs to do at times. For me it’s about staying positive, because I’m surrounded by my wife, my family, my friends and even strangers who are willing to jump in and help out. If you’re a positive person, I think people around you will often respond in that way.

I am grateful for the prayers from thousands of people from all over the country – many people, including strangers, have told me they pray for me daily. It’s truly humbling. My faith has taught me to be grateful for the extra time I have been given in this life, no matter how much more I get. I could easily be dead by now, but I am alive, which I take to mean that God has more for me to learn and accomplish in this life.


Unexpected Benefits


My sister has had similar heart-related issues within the past year. One of the benefits of not being able to work was being able to look out for her and take her to appointments. Beyond that, I’ve started to volunteer with some of the medical centers, talking to patients who are considering an LVAD or have just received one. I explain my experience to them. I’ve really appreciated being able to do that. I see it as almost a ministry, talking to these patients to give them my take on it.


Getting (Too) Comfortable


It’s one thing to say, okay, I’m used to this and this is the new normal. But I have to keep reminding myself that I could get the call at any time. There was a time after the LVAD that I didn’t feel like I was ready to get the call. Today, I still try to imagine what I’ll be doing when I get the call and how I’ll react. Am I going to be able to drop everything and go? If I got the call right now, I’d have to grab a bag and be out the door and tell my wife to meet me up there. It’s a fine line: I want to continue with life and not end up sitting there doing nothing, just waiting.

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Pat describes the “fine line” between preparing for transplant and continuing to live life


The Role Of Humor


Some might see my wife and my sense of humor as a bit morbid, but I find that laughing about our situation is helpful. For Christmas, my wife gave me an anatomically-correct plush heart and said, “Until the real thing comes along.” She also gave me a pair of socks with gold hearts and “heart of gold” stitched on them. Friends on Facebook helped me create a cardioversion playlist with songs like “Electric Avenue,” “Kickstart My Heart,” and “We Got The Beat.” A sense of humor is mandatory in dealing with the unknown of the process of waiting for a transplant.

"Until the real thing comes along..."

“Until the real thing comes along…”


What To Do While You’re Waiting


The important thing is to keep living your life and doing as much as you can. While I’m not working, I wake up and ask, what is my purpose today? Some days my purpose is to sit on the couch and watch TV. But other days I’ll say, today I’m going to do some writing. Today I’m going to read a book. Today I’m going to the grocery store. Whatever it is that you’re able to do, do it.

Get involved in whatever ways you can in life. For example, through volunteering. I found that very rewarding and helpful. Be willing to give of yourself. A lot of people would agree with me that when you give, you receive. It’s nice to tell your story and hear the stories of others.

Lastly, I would add, stay active. It’s not unusual to gain weight with the LVAD, so exercising as much as possible is incredibly important. I know it’s difficult when you are in heart failure but it’s a way to ensure you can be as strong as possible when the call comes.


Follow Patrick’s story or make a donation in his honor on his HelpHOPELive Campaign Page. Have your own transplant story to tell? Reach out to us on Facebook.

Meet Volunteer of the Year Award Honoree Chris Kanter

We present our 2015 Volunteer of the Year award to Christine V. Kanter for outstanding service and dedication to HelpHOPELive.

Chris first began contributing to HelpHOPELive, then the National Heart Assist and Transplant Fund, in 1983, as one of its founding employees. She joined a powerful community of individuals working to empower heart transplant patients to fundraise for a procedure still considered “experimental” and therefore not covered by insurance. Chris witnessed the financial and emotional impact of transplantation in a family member and used that awareness to fuel her service to HelpHOPELive.

Pat Kolff and Christine Kanter 1983 NTAF NTHAF heart transplant HelpHOPELive

Christine (right) with HelpHOPELive co-founder Pat Kolff in 1983

“Going to work every day was exciting,” Chris recounted in a HelpHOPELive interview. “The need was there, and we were there for our patients at every twist and turn as the field of transplantation progressed…It was energizing – what we did worked!”

After 20 years of devoted service in the Patient Services department, Chris retired from her position and joined the HelpHOPELive Board in order to continue serving the organization. Christine was instrumental in planning the first-ever HelpHOPE-Live It Up! annual fundraising event in 2013 to raise funds and awareness for HelpHOPELive. After helping to launch the event, Chris served as its co-chair in 2014 and participated in 2015 as an active member of HelpHOPELive’s Live It Up! event committee.

Heather Moore and Christine Kanter HelpHOPE-Live It Up!, Live It Up 15, LiveItUp15

Christine (right) with her HelpHOPE-Live It Up! co-chair Heather Moore

During her quarter-century of service to HelpHOPELive, Chris has attracted loyal supporters in her extended community to the organization’s cause through word-of-mouth and home fundraising events. A friend of HelpHOPELive founders Dr. Jack and Patricia Kolff, Chris is a founding member of the Kolff Society, a giving society whose members strive to assist HelpHOPELive in furthering its mission to reach families in need across America by providing cumulative gifts of $1,000 or more each year.

Christine Kanter HelpHOPELive NTAF NHTAF

Christine continues to passionately support HelpHOPELive

“I cherish my involvement with HelpHOPELive,” Chris said. “For…30 years we have helped people in need – I want that to continue. I give to HelpHOPELive because I want to support the passion [and] the hope.”

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaJoin us at HelpHOPE-Live It Up! on October 16 as we honor Chris for her service and dedication to our mission.

Each year at HelpHOPELive’s annual signature fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.