How Mentorship Helped Me Through the Process of My Lung Transplant

Note from Ella at CF Roundtable: We wanted to let all of our readers know that the upcoming issue will be all about organ transplants! It is full of information from pre and post transplant experiences by those of us with CF. Personally, I am very much looking forward to reading these stories as I have been just recently told I am in the “window” for transplant. It’s terrifying and joyous and a mixture of everything in between. I also will be signing up for this mentorship program because I want talk to those who have been through it! Thank you to the Lung Transplant Foundation for this perfect blog introduction to our next issue.

By Eirik Gumeny

Receiving a lung transplant can be an isolating experience, and no one should have to go through that alone. Mentorship programs are an excellent way to help.

When my wife and I started our journey towards my double lung transplant in 2014, we found ourselves overwhelmed and slightly adrift. We’d been to the orientations and met with the doctors, but something seemed like it was still missing, something we weren’t quite able to put our fingers on.

In hindsight, the answer was simple: pamphlets and professionals are only one half of the transplant experience. Input from other patients is equally – if not more – important. Transplant patients need to know the technical stuff, the ins and outs, yes, but there are things that only someone who’s actually lived through a transplant can help you with, things that only another person in your same position can understand.

That’s where the Lung Transplant Foundation Mentorship program can help.

They were among the first institutions to implement a mentorship program for lung transplant patients, and they were the first to reach out to my wife and me.

Founded as a non-profit organization in 2009 by a group of lung transplant recipients, The Lung Transplant Foundation (LTF) has been raising funds and acting as an advocate for lung transplant research ever since. Nationally recognized, the LTF is a member of the American Thoracic Society’s PAR Council of Public Representatives, and, currently, the only national lung transplant organization that sits on this prestigious council.

Their Mentorship program provides education and emotional support for transplant recipients and their caregivers, via confidential, individualized, one-on-one support for people at all stages of lung transplantation through personal contact with a trained Mentor.

When it comes to receiving a lung transplant, having someone who intimately understands what you’re going through its crucial to the experience. Though mentors can’t – and shouldn’t – replace professional medical advice, just having someone to talk to, someone who has faced the same problems as you, can help immensely.

The Lung Transplant Foundation can be found online at lungtransplantfoundation.org, and you can find more information on their Mentorship program by clicking here.

CF Foundation asking for Public Comment on Lung Transplant Referral Guidelines

Dear CF Community,

The CF Foundation seeks your input on the draft of the Lung Transplant Referral for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Consensus Guidelines. This guideline is one in a series of guidelines for advanced stage lung disease; the other guidelines in progress on this topic include: Advanced Lung Disease Consensus Guidelines and Post Lung Transplant Consensus Guidelines.

A committee of CF health care providers, transplant healthcare providers, and an adult with CF researched and developed the consensus recommendation statements presented in the draft. It is our hope that you will add your input and feedback to ensure that our community issues actionable practice recommendations for lung transplant referral for individuals with cystic fibrosis.

To systematically collect feedback from the CF community, we have created an on-line tool which is linked below. We recommend that you review the attached document, Lung Transplant Referral for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Consensus Guidelines PDF, and use the link below to enter your comments.

Submit comments here: https://www.surveymonkey.com/r/LTxReferralPublicComment

The deadline for comments is Wednesday, October 10th, 2018, 5:00 PM, Eastern.

We value your input. Thank you in advance for taking time to review and provide us with feedback on this very important aspect of CF care.

If you have any questions, please contact shempstead@cff.org.

Sincerely,
Albert Faro

Albert Faro, M.D.
Senior Director of Clinical Affairs
Cystic Fibrosis Foundation | National Office

You got the call for transplant… Now what happens?

Cystic Fibrosis Podcast 182:
The Path Forward with Cystic Fibrosis
In Jerry Cahill’s latest edition of The Path Forward with Cystic Fibrosis, Dr. D’Ovidio and Dr. Arcasoy from Columbia University Medical Center explain what happens once a patient receives the official phone call for his or her transplant.
They explain dry runs, the transplant surgery, a patient’s first breath, and more! Keep in mind; the overall transplant experience varies greatly among patients, as each case is completely unique.
This video podcast was made possible through an unrestricted educational grant from Columbia University Medical Center and the Lung Transplant Project.

I’m on the transplant list, now what?

In Jerry Cahill’s latest edition of The Path Forward with Cystic Fibrosis, Dr. Selim Arcasoy from Columbia University Medical Center discusses what happens once a patient is on the transplant list.
The first three major steps are:
  1. Create a strict exercise program with the hospital rehab center and integrate it into the patient’s schedule.
  2. Meet with a nutritionist in order to maintain proper weight.
  3. Educate! Meet with the care team in order to understand the entire process – both pre and post transplant.
The transplant process is a long one – and thoroughly detailed – in order to increase the chances of success. Tune in to learn more from Dr. Arcasoy.

This video podcast was made possible through an unrestricted educational grant from Columbia University Medial Center and the Lung Transplant Project.

Cystic Fibrosis Podcast 180: The Pre-Transplant Process

In Jerry Cahill’s latest podcast series, The Path Forward with Cystic Fibrosis, we hear from Dr. Selim Arcasoy from Columbia University Medical Center. He discusses the pre-transplant process by covering the following topics:
  • When should a CF patient consider a lung transplant?
    • When lung function decreases to 30% or below
    • When there is an increased infection resistance
    • When exacerbations resulting in ICU hospital stays become frequent
    • When a patient experiences frequent lung bleeds and collapse
  • What is the transplant listing process?
  • What is the transplant evaluation process?
  • What are some testing and evaluation obstacles, both mental and psychosocial?
  • What is dual listing?
  • What happens when you are actively listed?

This video podcast was made possible through an unrestricted educational grant from Columbia University Medial Center and the Lung Transplant Project.