Tag Archives: transplant social work

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.

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!