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
Monica Grey.jpg

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
nn_ath_chicago_transplants_190103_1920x1080.12006307705-1-1024x538.jpg

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
12 Things You Might Not Know About Organ Donation

The life-saving practice of organ transplantation has come a long way over the centuries. Today, more than 30,000 kidney, heart, lung, and other organ transplants happen each year.  Here are a few facts about the history and the current practice of organ donation.

1. THE FIRST ORGAN TRANSPLANT TOOK PLACE IN 800 BCE.

Skin, the body’s largest organ, was also the first to be transplanted. Researchers have found evidence that Indian doctors pioneered the use of skin grafts to repair injuries. In 500 BCE, a doctor named Sushruta performed the first rhinoplasty procedure by taking skin from a patient’s forehead and transplanting it to the nose.

2. A 16TH CENTURY ITALIAN SURGEON DISCOVERED ORGAN REJECTION.

Gaspare Tagliacozzi, a renowned physician at the University of Bologna, further refined Sushruta’s rhinoplasty procedure, refashioning the noses of maimed soldiers using skin from the inside of the arm. He also developed procedures to repair lips and ears using transplanted skin from a person’s own body. But when Tagliacozzi tried to graft skin from a different donor, the body would reject the transplant. His notes on organ rejection marked an early recognition of a problem that would stymie organ transplants for centuries to come.

3. IN THE EARLY 20TH CENTURY, DOCTORS TRANSPLANTED ANIMAL ORGANS TO HUMANS.

Going back as far as the 17th century, doctors transfused animal blood into humans. In the 19th century, animal-human skin grafts were quite popular, with frogs being the preferred species. By the 20th century, physicians were transplanting parts from rabbits, pigs, dogs, and other animals into human patients, none of whom lived more than a few days following their operations.

4. THE FIRST CORNEAL TRANSPLANT HAPPENED IN 1905.

Modern physicians still marvel at the procedure, undertaken by Austrian ophthalmologist Eduard Zirm. Using corneas taken from a child donor, Zirm successfully grafted them onto a 45-year-old farmworker, who had lost most of his eyesight in an accident. Zirm’s success is credited to sanitary conditions that were ahead of their time, and ophthalmologists today still use techniques that evolved from his original procedure.

5. CHARLES LINDBERGH CONTRIBUTED TO ORGAN TRANSPLANT TECHNOLOGY.

Known as a daring flyer, Lindbergh was also an accomplished mechanic who thrilled to an engineering challenge. After working for several years with transplant pioneer Dr. Alexis Carrel, in 1935 the two unveiled the perfusion pump, an intricate glass mechanism that could preserve organs outside the body. The invention landed the duo on the cover of Time magazine, though it ultimately proved too unreliable for physicians.

6. THE FIRST SUCCESSFUL KIDNEY TRANSPLANT TOOK PLACE IN 1954.

In the days before immunosuppressant drugs, transferred organs were almost uniformly rejected by their recipients. Then, in 1954, doctors in Boston were presented with an interesting case: Ronald Herrick, 23, had agreed to donate one of his kidneys to his identical twin brother, Richard, who was dying of kidney failure. The transplant was a success, with Richard living eight more years—far beyond the point anyone who had previously received a transplanted kidney had lived. Ronald, meanwhile, lived 56 more years, passing away in 2010.

7. IMMUNOSUPPRESSIVE DRUGS CHANGED THE GAME.

In 1960, immunologists Sir Frank Macfarlane Burnet and Peter Medawar won the Nobel Prize for their work studying immunosuppression and organ transplant failure. This opened the door to the development of immunosuppressive drugs, which allowed doctors to transplant organs from non-identical donors. The next decade would see the world’s first successful lung, liver, pancreas, and heart transplants.

8. KIDNEYS ARE THE MOST COMMONLY TRANSPLANTED ORGAN.

More than 17,000 kidney transplants happen every year in America, according to the National Kidney Foundation, comprising more than half of all organ donations. After decades of developments, including better immunosuppressive drugs, kidney transplants are one of the most effective transplant procedures being practiced today. And yet, the donation rate only puts a dent in the more than 100,000 people waiting for kidney transplants each year.

9. DEMAND FOR DONATIONS GREATLY EXCEEDS SUPPLY.

Between 1991 and 2015, according to the U.S. Department of Health and Human Services, the number of organ transplants doubled from around 15,000 to more than 30,000 annually. However, the number of people awaiting organ donation grew almost sixfold, to nearly 120,000. This is partly due to changes in the donation listing and matching process, but health organizations note it’s also due to some harsh realities, including the fact that while 95 percent of U.S. adults support organ donation, just 48 percent are registered donors.

10. ONLY THREE IN 1000 DEATHS ARE ELIGIBLE FOR ORGAN DONATION.

Properly preserving a donor's organs requires optimal conditions, meaning that only a small percentage of deceased individuals are fit to donate. In most cases, donors experience brain death in a hospital and are stabilized while their organs are harvested. Thanks to medical advancements, more and more patients that experience cardiac death are now fit to donate.

11. MINUTES COUNT WHEN IT COMES TIME TO MAKE THE TRANSPLANT.

Because some organs can only be preserved for a few hours outside the body, every minute counts when making the transfer from donor to recipient. Donation organizations coordinate with flight crews, police, ambulances, and other entities to speed along precious organs. The New York Daily News recalled the recent journey a donor heart, which can last just four hours, made from New Hampshire to New York City. It involved a flight, a police escort, and an ambulance racing across the George Washington Bridge.

12. IN 2012, 60 PEOPLE TOOK PART IN A REMARKABLE DONATION CHAIN.

Call it a case of pay-it-forward on steroids. In 2012, a California electrician named Rick Ruzzamenti decided he wanted to donate a kidney to someone in need. The organ went to a man in New Jersey whose own family had wanted to donate but were found incompatible. After the man received Ruzzamenti’s kidney, family members were encouraged to themselves donate a kidney to someone in need, thus beginning a chain that connected donors with organ recipients and family members willing to donate in turn. The chain meandered along for four months, connecting 17 hospitals in 11 states. It ended at the thirtieth donation with a man named Don Terry in Joliet, Illinois.

Source: Mental Floss, Feb. 2017

Jaime Scholl
OPTN/UNOS Board Approves Updated Liver Distribution System

The OPTN/UNOS Board of Directors, at its meeting December 3, approved a new liver distribution policy to establish greater consistency in the geographic areas used to match liver transplant candidates with available organs from deceased donors and reduce geographic differences in liver transplant access.

The policy will replace fixed, irregular local and regional geographic boundaries historically used to match liver candidates based on the donor location. It initially prioritizes liver offers from most deceased adult donors in the following sequence:

  • Candidates with highest medical urgency (Status 1A and 1B) listed at transplant hospitals within a radius of 500 nautical miles of the donor hospital

  • Candidates with a MELD or PELD score of 37 or higher listed at transplant hospitals within a radius of 150 nautical miles from the donor hospital

  • Candidates with a MELD or PELD score of 37 or higher listed at transplant hospitals within a radius of 250 nautical miles from the donor hospital

  • Candidates with a MELD or PELD score of 37 or higher listed at transplant hospitals within a radius of 500 nautical miles from the donor hospital

  • A similar, continuing sequence of progressive offers (candidates at transplant hospitals within 150, 250 and 500 nautical miles of the donor hospital) for candidates with ranges of MELD or PELD scores from 33 to 36, from 29 to 32, and from 15 to 28

In addition, livers from deceased donors younger than age 18 will first be offered to any pediatric candidates (younger than age 18) listed at any transplant hospital within a 500 nautical-mile radius of the donor hospital. This will give additional priority to pediatric transplant candidates compared to the current distribution system.

Simulation modeling of the approved system indicates it will reduce variation in transplants by MELD score that exist in various areas of the country under the current liver distribution system. Modeling further suggests it will reduce pre-transplant deaths and increase access for liver transplant candidates younger than age 18.

Source: UNOS.org

Jaime Scholl
Finding Support While Waiting for a Transplant
Katie in hospital.jpeg

June 20, 2018 was a glorious day. My sister, brother in law, her three kids and spouses, along with my six great nieces and nephews were in Wisconsin at a cabin in Elkhorn. I had traveled little the past few years so that I would be within a four hour radius of the University of Wisconsin at Madison should a kidney be available. We spent the day in Whitewater with friends on the lake. The kids swam and enjoyed time fishing. We were out on the boat and the kids took turns on the Jet Ski with my niece’s husband. I was in heaven cuddling with the little ones as they came out of the water cold and shaking. Bundled in dry towels we snuggled together…

When we got back to the cabin around 7:00 for a late dinner, the little ones were going down for bed. My niece happened to check her phone and excitedly told me that there was a call for me on her cell phone from Madison. She read me the number which I immediately called. The transplant center had left a message on my phone, my other niece’s phone and my sister’s home phone fifty minutes earlier. We had missed them all! Once I was connected to the caller she asked me to stay on hold with her as she needed to contact my home town police as they had been sent to my house in one last attempt to contact me. She said this was her last call and then she would have gone on to the next person on the transplant list that was a match. My transplant took place the following day, June 21st, 2018.

I have dealt with CKD for ten years and I was on the transplant list for two and a half years. The last few weeks before the transplant I was having a great deal of difficulty walking. My next appointment with my local nephrologist was scheduled for July 2, 2018. While I may not have expressed it out loud, I realized the likelihood of dialysis was going to be discussed at that doctor’s appointment. My two kidneys were only operating at 9% and it was clear that one knee and the other ankle were being greatly affected by the toxins my body was no longer able to manage. The fluid buildup was possibly moving into gout and that was my next challenge. The turning point was when I was trying to walk from my car to my great niece’s softball game. I had no business attempting that outing and I stood there thinking if this is my life now, will I be able to do it?

The last two years in particular were difficult. The anxiety of waiting, dealing with limited activity due to being anemic and working to accept my new reality were all things I struggled with. I looked for a local support group that met monthly in the far west suburbs. I wanted a support group that was specific to chronic kidney disease. I checked all the local hospitals and roamed the internet. I belonged to OTS and appreciated the newsletters and Facebook page but I wasn’t attending the meetings. Once I was registered on the transplant list, realized dialysis was a real possibility and I knew I needed more support I thought perhaps it was time to attend a meeting.

My first OTS meeting was the September luncheon a few years ago. I attended by myself and was kindly welcomed by Carolyn Kutsy one of OTS’s members. Carolyn celebrated her 31st anniversary of her kidney transplant this past year! She was so welcoming suggesting I sit with her. She shared her phone number with me at that first luncheon before we left and would call periodically to check on me. I called her too with updates, both good and bad. We have enjoyed the September anniversary celebrations together the past three years. I am so grateful for her hospitality. I would encourage each of you to reach out to a new member or someone you don’t know at the next meeting.

In an effort to make this journey work for me, I knew I needed to find more avenues of support. I have a wonderful family and a large group of supportive friends but I needed contact with people working through kidney disease, specifically.  I did come across a Facebook page with over 10,000 members related to chronic kidney disease. Probably the most helpful “discovery” was the affirmation of the fact that, yes, there are lots of tired people out there. That tired feeling, lack of energy, need for a nap was indeed very normal. I was not alone.  Facebook:  Kidney Disease and Diet Ideas and Help.

Another resource that I relied on was Caring Bridge. This website allows you to reach out to family and friends as a way to keep them informed of your condition and changes along the way. The idea of explaining the situation over and over to each and every person was exhausting and somewhat defeating for me. I never minded if people asked questions but I didn’t want to have to retell everything all the time. This site was another source of support as people could respond on the Caring Bridge site or in some cases people chose to reach out with encouragement, prayers, or with cards, notes and emails.  www.caringbridge.org

No matter where you are at in your journey keep looking for resources specific to your needs. Create your path to support, keep your eyes open for ways to learn more and extend yourself to others who might just need that welcoming hello. Carolyn Kutsy surely did that for me.

 

Katie and Carolyn-2.JPG
Jaime Scholl
OTS Receives Award From HSN Cares

OTS Recognized on National TV on April 26

Board President Carol Olash

Board President Carol Olash

HSN Cares, the philanthropic arm of the Home Shopping Network (HSN), is excited to announce that Organ Transplant Support, Inc., will receive an award of $1,000 as part of the annual $1,000 a day give-away campaign.  

HSN Cares selected Organ Transplant Support from a pool of hundreds of entries.  The entry from OTS was submitted by OTS President, Carol Olash.  Asked to submit a charity she is passionate about, Olash stated: 

“I was a very sick mother of an eight-year old son and I needed a heart transplant.  When I was introduced to Organ Transplant Support they answered all my questions and reassured me.  It has been 15 years since I received my new heart and I have found a wonderful group of transplant friends through OTS.”

In addition to receiving a check for $1,000 from HSN Cares, Organ Transplant Support will be recognized on HSN television on four different times during April 26, 2018.   HSN will announce Organ Transplant Support at these times on April 26:  1:00am, 6:00am, 1:00pm and 8:00pm, CST.  

Organ Transplant Support, Inc. sincerely thanks HSN Cares for this special recognition and award.  

Carol Olash