Share Your Transplant Story & Save a Life

Pete Cashman is a liver recipient and OTS member who at one time was a school bus driver in his suburb.  He made a point to tell the kids that he received an organ transplant and  that organ donation can save lives.  He recently received a note from one of his high school students telling Pete what a major impact he has on his life.  Pete  was shocked to receive this message, statting “I never thought that my story could help to save another life!  Pete is sharing this message with us to remind all of us that we too can help to save a life just by sharing our story of organ donation. 

Here is the note that Pete Cashman received:

     “Hey Mr Cashman:  I know you probably don’t know/remember me, but I just want to thank you.  You were my bus driver senior year of high school at Lincoln-Way Central, and you made a great impact on me and caring for others.  When you told us about your “donate life” story it actually made a big impact on me.  I just got out of recovery from donating my bone marrow to help save a life and I want to say thank you.  All the times you told us about your new Green Bay family ALWAYS stuck around with me.  Thank you.”

Jaime Scholl
Transplant Tips for Summer

As a transplant recipient, one of the hardest things to get used to are the precautions that we have to take -  especially during the summer.  Most transplant patients are taking one or more immunosuppressant medications, such as CellCept, Prograf, or Neoral.  Any of these medications will cause the skim to become very sun sensitive.  Here are few tips to follow: 

  1. Always use sunscreen and lip gloss with an SPF factor of 15 or more.

  2. Avoid sunlight during the hottest part of the day (11AM – 3PM)

  3. If outdoors during the day, wear a large hat, long-sleeved shirt and pants.

  4. Avoid all tanning booths. 

Jaime Scholl
2019 OTS Tree Planting Ceremony

More than 80 people attended the 28th Annual OTS Tree Planting Ceremony on Sunday, April 28 at Naper Settlement in Naperville.   The weather did not look good for an outdoor ceremony when there was a spring snowstorm in the Chicago area the day before.  But all the snow melted just in time for us to walk to the site where we dedicated a tree in honor of organ donors.   The day of Sunday, April 28 turned out to be a sunny and beautiful day for the tree planting ceremony.

OTS would like to sincerely thank the following speakers who talked about organ donation at the ceremony:  Reverend Karen Swiderski,  Ms. Connie Boatman,  Program Director of the office of Organ. & Tissue Donation at the Illinois Secretary of State’s office, Kevin Cmunt, CEO of the Gift of Hope, Mr. Bob DiFiore , a heart recipient, and Cindy Abitua, donor mom and Gift of Hope Advocate.   We were also honored to have two very special guests at this event, 11-year old Sophia Sanchez and her mother.  Sofia received a heart transplant last year, and she has spoken at many events in the past few months to promote organ and tissue donation.   

Cindy Abitua shared her emotional story of organ donation and spoke about her son Tristan.  Tristan was just 21 years told when he suddenly passed away from an accidental fall.   Tristan was a registered organ donor, and he saved the lives of 4 people through organ donation  and enhanced the lives of many others through tissue donation.   Cindy told all of us that it gives her comfort to know that her son was able to save so many lives with the gift of organ donation.  She has even started the Tristan Scott Foundation  to help other donor families.  Thank you Cindy, for sharing your story  of your hero Tristan with OTS! 

OTS would like to thank everyone who took the time to attend the 28th Annual Tree Planting Ceremony on April 28.  We also want to thank the volunteers from Kohl’s who helped to set up and clean up after this event.  We love the amazing volunteers from Kohl’s!

 Whenever you visit Naper Settlement don’t forget to look for all of the trees that have been planted by OTS through the years in honor of organ and tissue donors.  Just look for the black markers in front of the trees that have OTS on the marker. 

We  hope that all of these trees are a living reminder of all of the lives that have been saved by organ and tissue donation.               

Jaime Scholl
The Caregiver’s Guidebook
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The Caregiver’s Guidebook by Barbara A. Stewart is your personal resource for successfully navigating life as a Caregiver. It is filled with information, lists, and a place for you to personalize your journey. This Guidebook will provide you with awareness, encouragement, comfort, and a voice, as you embrace the new you.

The Caregiver’s Guidebook was written by Barbara Stewart, who was a speaker at an OTS meeting last year about Caregiving 101, and she is one of the founding members of the Transplant Support Group of Northern Illinois. Barbara suddenly and unexpectedly became a Caregiver when her husband was diagnosed in 2013 with end stage liver failure, and throughout his recovery from a successful live donor transplant in 2016. Barbara labels herself as a Self-Taught Caregiver as she navigated the tasks that define this unsolicited title. A search for support, solutions, and guidance are the similarities Caregivers share despite the uniqueness of family dynamics and patient’s responses that define us. The purpose of Barbara’s Caregiver’s Guidebook is to not only provide you with her story, but to share worksheets and lists that will help you chronicle, organize and personalize your journey. Barbara wants you to nurture your loved one and yourself physically and emotionally as you navigate the healthcare system.

Books are Available through Amazon, Barnes & Noble, or hand signed copies direct from the author at www.caregiversguidebook.com

Jaime Scholl
Writing to Your Donor Family

At the OTS meeting on April 5, we were fortunate to have two different speakers.  Margaret Pearson, a coordinator in the office of organ and tissue donation at the Illinois Secretary of State’s office spoke about all the different events planned during April to promote organ and tissue donation.  Many public service announcements were aired on local TV stations that featured Sofia, an 11-year-old girl who received a heart transplant last year. 

Our main topic of discussion at the April meeting was all about writing to our donor family.  Renata Krzyston, an Aftercare Specialist with the Gift of Hope, explained that a total of 2,500 letters were handled by her office between donor families and recipients last year.  However, even with all these letters, the total level of correspondence between transplant recipients and donor families is very low, less than 10%. 

Renata encouraged all transplant recipients to write a letter to their donor family, and she explained that there are no time restrictions on when it is too early or too late to write that letter.  She has worked with transplant recipients that are writing their first letter more than 20 years after their transplant.  If you need any help writing a letter, the Gift of Hope can help you.  They have correspondence guidelines that have tips on what to write about yourself, and what information to include and not to include.   If you wrote to letter and are not sure that it was received, please call the Gift of Hope and ask about your letter.    If you are not sure about the letter you have written, call the Gift of Hope and review it with them.   They will be more than happy to help you write your letter. 

OTS sincerely thanks both Margaret Pearson and Renate Krzyston for the valuable information they shared at the April OTS meeting.

Jaime Scholl
Someone You Should Know at an Organ Procurement Organization - An Interview with Monica Vernette Gray
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OTS: Can you tell us what your business is, and where you work?

MG: I am a contract funeral director with the Gift of Hope Organ & Tissue Donor Network in Itasca, Illinois. I transport deceased donors from the hospitals where they expire to the Gift of Hope for donation recovery. My service area includes all of the hospitals in Lake County, Indiana, Kankakee County, Illinois, and far south Cook County, Illinois.

OTS: How long have you been a funeral director, Monica?

MG: I have been a licensed funeral director/embalmer in the state of Illinois for 20 years. I have been a licensed funeral director in the state of Indiana for 13 years.

OTS: Do you know when you first realized that you wanted to work in the funeral business?

MG: I knew as a little girl that I wanted to become a funeral director when I grew up. While most young people were reading the comic and sports section in the newspaper, I used to read the local obituaries to my mother. I also was enamored with television shows like The Addams Family, The Munsters, and Quincy, M.E.

OTS: I’d like to learn more about your work for the Gift of Hope.  When you are notified about a transport of a donor, does a hospital call you or does the Gift of Hope contact you? 

MG; Once the Gift of Hope obtains consent from the donor family for organ and/or tissue donation and transportation, one of the Gift of Hope Donor Resource Coordinators contacts me to arrange transportation from the hospital to the Gift of Hope.  Organ donation recovery takes place at the hospital by a team of organ recovery technicians.  Tissue donation recovery takes place by a team of tissue recovery technicians at either the hospital or the Gift of Hope.  The expectation is that donors I transport arrive at the Gift of Hope within two to two and a half hours of contacting me. 

OTS:  Do you transport a donor to the Gift of Hope office because they are set up with operating rooms to retrieve tissue there? 

MG:  Yes. The Gift of Hope has recovery suites to facilitate tissue recovery.  When donor families consent to donation but not transportation, then a team of tissue recovery technicians will gather the necessary items and travel to the hospital to recover.  Otherwise, tissue recovery takes place in a Gift of Hope recovery suite. 

OTS:  What is the most challenging part of your work transporting donors to the Gift of Hope? 

MG; The organ procurement organization in Indiana is called the Indiana Donor Network.  However, organ and tissue donation in Lake County, Indiana, is facilitated by the Gift of Hope.  One of the most challenging aspects of what I do relates to the coordination for cornea recovery times with the eye bank in Indiana.  If a donor family consents to cornea donation, then that recovery takes place at the hospital in Indiana before the donor is transported to the Gift of Hope in Illinois.  However, the eye bank technicians have to travel from as far away as Indianapolis or Fort Wayne to the hospitals in Lake County, Indiana.  Sometimes there are timing issues that requite navigating around. 

Another challenge associated with transporting donors occurs when the hospital release paperwork is not ready, especially the Indiana Provisional Transit Permit to transport the donor across the state line.  There have been times when I waited close to three hours for a hospital to complete the Indiana Provisional Transit Permit. 

OTS: In additional to your work as a funeral director, you also volunteer for the Gift of Hope.  What kind of volunteer services do you provide for the Gift of Hope?

MG: The volunteers with the Gift of Hope are called Ambassadors for Hope. I believe the words “community engagement” best describe my volunteer activities with the Gift of Hope. 

OTS:  Do you enjoy the volunteer services you provide for the Gift of Hope?

MG:  I absolutely enjoy my volunteer work with the Gift of Hope. I strongly believe in organ and tissue donation. I believe volunteering with the Gift of Hope is meaningful, rewarding and worthwhile.

OTS:  Thank you so much for sharing the fascinating and important work that you do. 

MG:   Thank you for this opportunity to speak about my work with the Gift of Hope.  I would like to encourage the OTS members to do whatever they can to promote organ and tissue donation awareness at every possible opportunity. Sadly, too many people are dying as they wait on transplant lists for available organs.

Jaime Scholl
2018 - Another Record Breaking Year for Organ Transplants!

There were more than 36,500 transplants in the US performed last year - making 2018 the 6th consecutive record-breaking year!  Of these transplants, more 10,700 came from deceased donors and more than 6,900 came from living donors which is the highest living donor total since 2005.

Transplant Data for Illinois

Just like the great increase in the number of organ transplants in the US during 2018, the number of organ transplants also grew in the state of Illinois last year.  The total number of organ transplants increased by more than 10% in the state of Illinois from 2017 – 2018.  Here are the total number of transplants during 2018 in Illinois:

    Number of transplants in Illinois in 2018 = 1,424

    Number of transplants from deceased donors: 1,139

    Number of transplants from living donors: 285

Here is a comparison of the number of transplants by organ in Illinois during 2017 and 2018:

       Organ                                      Transplants in 2017                   Transplants in 2018

        Heart                                                   139                                                  180

        Liver                                                      272                                                 287

        Lung                                                      92                                                 100

        Kidney                                                  722                                                798

        Pancreas                                                 11                                                  8

        Other organ/multiple organs          37                                                     51

SOURCE: www.unos.org, www.optn.org

Jaime Scholl
Two Patients get Triple-Organ Transplants the Same Day at University of Chicago Medicine
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The patients, Sarah McPharlin of Michigan and Daru Smith of the South Side of Chicago, both needed transplants to replace their three major organs, which had begun to fail for different reasons.

McPharlin, an occupational therapist from Grosse Pointe Woods, Michigan, received her first heart transplant when she was 12-years-old after she contacted a rare inflammatory heart condition. That heart began to fail over the next 17 years, however, causing complications that damaged her liver and kidney, according to the University of Chicago.

Smith, the father of a 3-year-old who drives a truck for a living, was diagnosed with a condition five years ago that causes clusters of inflammatory cells to form inside organ tissues, damaging his heart, liver and kidney. When he arrived at the hospital with pneumonia, his heart was functioning at only 85 percent of its usual capacity, a statement from the hospital said.

“It’s too early,” said Dr. Valluvan Jeevanandam, chief of cardiac surgery at UChicago Medicine, referring to Smith’s age.

Other hospitals declined their cases. The McPharlin family said they were offered hospice care for their daughter.

“We really thought we were at a dead end,” her mother said.

But a twist of fate changed everything.

Despite both transplants being high-risk, the medical staff at University of Chicago Medicine accepted their rare cases.

“Knowing that other hospitals wouldn’t take them–it was the right thing,” Jeevanandam said.

After waiting for organ donors, both McPharlin and Smith had a stroke of luck on Dec. 18 and 19 when their doctors received calls letting them know the organs had become available. The patients would each get new organs from single donors.

Surgeons completed both surgeries on Dec. 20–finishing both within 20 hours–marking the first time in U.S. history that a hospital has ever performed more than one triple-organ transplant within a year, according to UChicago Medicine.

Doctors said teams of 22 surgeons, nurses and anesthesiologists worked in rotations to transplant the organs, which had to be placed inside the patients’ bodies in a specific order, with the hearts going in first.

“The element of time adds pressure to what we do because we have only about four to six hours once the heart leaves the donor, while the other organs can last a little longer,” Jeevanandam said. “A triple transplant magnifies the complexity and coordination of the process because the heart needs to go in first and be maintained while the other teams work to get the liver and then the kidney in.”

Both patients are still recovering, and plan to have a meal together with their families after they’re released from the hospital.

“I haven’t had this much energy in a very long time,” McPharlin said, speaking from her hospital bed.  She said she’s looking forward to getting outside in the sun, and to making a return to work.  Smith is eager to spend time with his son, and said he’s looking forward to exploring a new career.

Source: CBS2 Chicago, 1/4/2019 

Share Your Transplant Story with OTS!

We are looking for personal stories of your transplant journey as a recipient or caregiver to print in a future Miracle Messenger newsletter.   We would love to read about your transplant story!  How long did you wait to receive an organ?   Do you remember when you first received “The Call” that an organ was available for you?  What have you been able to do after a transplant that you never did before? 

Everyone has a fascinating story about their transplant if they are a recent recipient or received a transplant many years ago.   We know that caregivers have a very tough job, and we would love to read about your experience as a caregiver too.   Please send us the story of your transplant or the experience as a caregiver in 400 words or less so that we can print it in a future newsletter. 

You can email the article to organtransplantsupport@gmail.com, or mail it to the OTS address (PO box 471, Naperville, IL  60566.    Thank you!

Jaime Scholl