Who Would Have Thought

From the Winter 2015 TRIO Lifelines Newsletter

A Caregiver Shares:

Who Would Have Thought?

   When I was young, I was a gutsy girl with big dreams. I imagined a life of adventure. I would be a world traveler or perhaps a firefighter (yes, I was a tomboy!) or even a journalist crossing the globe telling tales of war and humanity. I never once, in my wildest dreams, imagined that my biggest adventure, my hardest battle, would be a fight for life . . . the life of a loved one that I hold so dear.

   This is a real live fight . . . it is facing life and death every single day. It is not knowing if my loved one will even make it to the next day! That is how sick he is. This is my fight to get him what will hopefully be a life-saving doubled lung transplant.

   It seems like a dreary fight some days. I spend much of my time asking, begging friends, family, and strangers for assistance to help fund the surgery and the astronomical costs that come with it . . . expenses not covered by insurance. It is convincing a transplant center that his life is indeed worth saving. It is assuring my sick and weary partner each day that there IS a future for him and then convincing him that I want to be a part of it. It is definitely the hardest job I have ever had to do. Being a caregiver is more often than not a thankless job and definitely not the glamorous life I had anticipated. But it is a worthy fight: saving a life, or at least, doing everything in my power to do that.

   And even on the toughest days, I know that the real fight will be in the operating room, when that time comes, for the surgeons and medical staff. The thought of them removing the lungs of my dear Michael and replacing them with new ones seems, well, strangely normal after so many years of working towards getting him a second chance.

   We were both elated when he was accepted at the Cleveland Clinic in July. His quality of life has declined to the point where we are willing to trust these surgeons to open him up, remove the organs that keep him breathing and give him a second chance at a new life.

   Lung transplant surgery is highly risky with 83% of lung transplant patients surviving the first year. The biggest risk is rejection and infection. The lungs are the largest human organ in our bodies that aren’t exposed directly to the outside world. Since lungs are not sheltered or protected like the other organs, the risk of infection is high.

   Michael will have to avoid crowds, sickness, mold, dust, and many other things that most people take for granted. He will be on costly anti-rejection medication for the rest of his life. These medications that will save his life and help keep his body from rejecting this new organ can also eventually destroy some of his other organs. He will most likely need another transplant down the road. Many transplant patients end up getting a second and, even a third, transplant of kidneys or liver due to the damage done by the medications that make his new lungs work. Many develop secondary illnesses, such as diabetes. Yet, after years of watching his health decline and seeing his ability to breathe on his own being taken from him, we have both agreed after many heart-wrenching, late night conversations that this second chance is the right one and worth all the risks that accompany the surgery. What is life if you can’t breathe on your own and you are tethered to a tank to sustain life?

    While I am often weary from the constant battles we have faced during this journey and often miss that dream life that I had hoped for, there is one thing that keeps me going: seeing Michael get a second chance at life.

-Jeanne Apelseth, Caregiver
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Member Transplant Caregivers –Partners for Life
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Caregiver Support

TRIO transplant recipient members owe a lot to our dedicated and loving caregivers who not only give us support, but oten are the very reason we are inspired to go on living.  Knowing the caregiver often endures the challenge of the transplant unknown while we as recipients are asleep during that worrisome many hours of surgery, this caregiver resource hopefully will help caregivers in their lives and support roles.

Through the TRIO Headquarters and a network of chapters, TRIO serves its members in the areas of: Awareness, Support, Education, and Advocacy. This TRIO web site is filled with information about these areas and our many programs, including local chapter contact information, so wander around these pages to learn more about TRIO or contact your local TRIO chapter where meetings are often social opportunities for caregivers to share and learn their own coping skills while learning more about the life of the transplant recipient.. If you still don't find answers to what you are looking for, please email us at This email address is being protected from spambots. You need JavaScript enabled to view it. or call 1-800-TRIO-386.

TRIO partners with and recommends the Transplant Caregivers - Partners for Life Facebook group which can be found by clicking on that title or at

caregiver Facebook banner

January 1st, 2015 Message from Transplant Caregivers hosts:


If you are caregiver of a loved one who is pre- or post- transplant and looking for a private, virtual forum to share your experiences, please join us on Facebook at Transplant Caregivers – Partners for Life

Kindly note, this is a page dedicated exclusively for caregivers.  If you are not on FaceBook and would like to be introduced to a caregiver  feel free to email us at This email address is being protected from spambots. You need JavaScript enabled to view it..">This email address is being protected from spambots. You need JavaScript enabled to view it..

2014 was a difficult year for many, many people.   For you, it may have brought you to your knees more times than you could count.
...For you, it may have left you breathless … hopeless … tired and weary.
But before you eagerly slam the door on 2014, I ask you to look at your loved one and remember:

You could have let go, but you didn’t.
You could have given up, but you didn’t.
You hung on.   And here’s what I believe.
I believe 2014 was…
Your Year of Greatest Strength
Your Year of Greatest Faith
Your Year of Greatest Hope
Your Year of Greatest Patience
Your Year of Greatest Risk
Your Year of Greatest Trust
Your Year of Greatest Determination
Your Year of Greatest Courage
May 2015 bring you a year of peace and continued hope.

Adapted from Rachel Stafford, “Hands Free Revolution.”


Some resources for caregivers (click on titles to link to that resource):

Fall 2014 Lifelines article: A well-informed caregiver with appropriate emotional support is essential to the well-being of the transplant patient
Winter 2015 Lifelines article: Who Would Have Thought?



TRIO Board of Directors,

Selection/Appointment Process

- Updated December 2011 -

Board Member Elections & Appointments

TRIO By-laws provide for a 12 or 13 member Board of Directors:

  • Not more than eleven (11) Directors at Large – each serving for three years or until a successor is elected/appointed, serving for not more than two terms, rotating one third of its members off each year
  • A Chapter Council Chairperson - elected from the Chapter Council members by the Chapter Council members to serve for a three year term or until their successor is elected
  • an Immediate Past President – this position only exists for one year after leaving office (during which time there would be a 13 member Board)

The Board has four elected officers:

  • President,
  • Vice-president,
  • Secretary and
  • Treasurer.

Board officers are elected annually by the Board from among its 12 (or 13) Board members and serve for one year or until their successors are elected. Along with the Chapter Council Chairperson and the Immediate Past President (when a 13th position exists for that one year after a President leaving office), these make up the five (or six) member Executive Committee.

Overview of the Nomination Process

To be nominated for appointment/election to the Board of Directors, the name and contact information for a potential nominee is first submitted to the Nominating Committee who in turn will conduct due diligence and has the responsibility to recruit, screen and place names in nomination to the Board for possible election to Board membership.

Any TRIO member can suggest any other member as a potential nominee with whom they have discussed the idea beforehand, making sure there is no implied expectation of acceptance to Board membership in that discussion, clearly communicating that their discussion is only preliminary to submitting a name as a potential nominee.

At the discretion of the Nominating Committee and direction of the Nominating Committee chairperson, a package of material will be mailed by the Managing Service Director to a potential nominee for their review.

The package contains a letter of introduction that provides:

  • an overview of the responsibilities of Board members,
  • the “Board of Director Member Responsibility Guidelines”
  • the “Conflict of Interest Guidelines”
  • an Information/Data form

Both sets of guideline forms and the Information/Data form must be signed and returned to TRIO national headquarters or designated staff by the stated deadline electronically or as hard copy for full review and consideration by the Nominating Committee. The information submitted is provided to the Nominating Committee members to familiarize members with potential nominees seeking election to the Board.

After receipt of the signed documents, two current Board members appointed by the Nominating Committee will interview the potential nominee in person or by phone. After interviews, and should the potential nominee still agree, their name is submitted to the full Nominating Committee for discussion with input from the two interviewers. The outcome of the committee discussion is a final selection of names to be placed before the Board of Directors with a recommendation for the Board to vote on appointing/electing them to the Board. It is up to the Board to accept or reject the recommendation of the committee.

Responsibility of Board of Director Members

It is the responsibility of each board member to:

  1. Be a currently paid member of TRIO
  2. Participate in establishing policies to advance the mission of TRIO
  3. Attend at least three of four quarterly Board meetings per year
  4. Attend the Annual Conference
  5. Be aware of and adhere to TRIO’s “Conflict of Interest Guidelines” and the “Board Member Responsibility Guidelines”
  6. Assist TRIO in enlarging its sphere of influence by providing influential contact information for fundraising and development efforts
  7. Actively participate in fundraising and development efforts by securing annual financial donations in an amount to be determined by the Board of Directors.
  8. Actively participate in at least one recognized TRIO Committee
  9. Be active in your local TRIO chapter or initiate the development of a chapter in your local area.

In addition to the above, each TRIO Board member is expected to financially support the organization. Each Board member is expected to sign an annual “Board Member Pledge Form.”

Schedule for Nomination and Election of Board of Directors

While no formal schedule is currently set, nominations typically made whenever an opening is available, with annual nominations/elections held in the Fall board meeting. Each appointee is solicited on individual schedule. Feel free to offer a name (including yourself) for consideration by the nominating committee at any time by calling the national office or e-mailing to This email address is being protected from spambots. You need JavaScript enabled to view it.

(Rev: 12/5/2011)

Transplant Recipients International Organization, Inc.

7055 Heritage Hunt DR, #307
Gainesville VA 20155

800-TRIO-386  (800-874-6386)

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