Tag Archives: social worker

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.

Fall Transplant News: Conferences and Video Announcement!

We are proud to support candidates, recipients and their families as they navigate transplant financial concerns. Here are two exciting pieces of fall transplant news from the HelpHOPELive team.


‘Tis the season for fall conferences! HelpHOPELive leadership represented our organization at three important professional gatherings:

2015 Transplant Financial Coordinators Association Workshop

Location: St. Louis, Missouri

Highlights:

  • Understanding national Centers of Excellence requirements for transplantation
  • How Medicare coverage serves transplant needs
  • Panel discussion: top resources for transplant financial aid (with HelpHOPELive CEO David Bakelman)

Pics:

David Bakelman at TFCA conference

Our CEO prepares to address transplant financial coordinators.

HelpHOPELive Co-Director of Fundraising and Patient Services Rebecca Carr.

Co-Director of Fundraising and Patient Services Rebecca Carr showcases HelpHOPELive resources.


29th Annual Society for Transplant Social Workers International Conference 

Location: Columbus, Ohio

Highlights:

  • A firsthand, start-to-finish look at a recipient’s kidney/pancreas transplant journey
  • The ethics of altruistic kidney donation and inmate organ donation
  • Discussion: how to fundraise effectively for a transplant (with HelpHOPELive CEO David Bakelman)

Pics:

HelpHOPELive STSW Conference 2015

HelpHOPELive’s CEO David Bakelman (back left) and Co-Director of Fundraising and Patient Services Joni Henderson (back right), pose with the social workers who received scholarships from HelpHOPELive to attend  this year’s STSW conference.

HelpHOPELive Co-Director of Patient Services Joni Henderson.

HelpHOPELive Co-Director of Fundraising and Patient Services Joni Henderson offers information on our services.

HelpHOPELive CEO David Bakelman STSW

Our CEO on the STSW 2015 discussion panel.


21st Annual “The Practice of Transplant Administration” Workshop

Location: San Diego, California

Highlights:

  • Our first year engaging with professionals at this important gathering!
  • Modern tools for tracking and analyzing transplant data
  • Transplant financial management, including Medicare reimbursement and reducing overhead costs

Congrats to the winners of our conference raffles who won gift cards from HelpHOPELive: Teressa Lawrence, a financial coordinator at NYP-Weill Cornell Medical Center (New York); and Deborah G. Evans, a social worker at St. Vincent Hospital (Indiana).


New Transplant Video Announcement!

With the support of Philadelphia digital media agency Allied Pixel, HelpHOPELive will be releasing an incredible new video to help transplant families understand how our nonprofit can support their financial needs.

Sneak Preview:

We interviewed HelpHOPELive patient and heart transplant recipient Leslie Sorg along with her brother, son and sister to learn how fundraising impacted her journey. Here’s a quote from Leslie:

“This is not something you do alone. I was unaware how expensive [a] transplant would be. I was shocked. I was totally and completely resistant to fundraising. Then my social worker told me about HelpHOPELive. I couldn’t stand the idea of asking people for money…Honestly, it was probably one of the best things I’ve ever done. They money was so appreciated [and] my heart is a rock star because of it! There was an astronomical amount of community support and love, and all because I reached out. My family, my friends and my co-workers became the strength that I needed.”

Leslie Sorg transplant HelpHOPELive

Leslie spoke about the role HelpHOPELive played in her transplant preparations and recovery.

Leslie Sorg Allied Pixel transplant HelpHOPELive

Leslie makes her video debut.

Bill Haley and the Allied Pixel team transplant video for HelpHOPELive

Bill Haley and the Allied Pixel team.

HelpHOPELive transplant video Allied Pixel

Leslie’s sister, Michele, gets camera-ready.

You can find an additional behind-the-scenes video on our Instagram page.

The video will launch by 2016 – stay tuned!


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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.