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Champion at Heart, From Heart Failure to 5k.

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By Melissa McQueen.

Most of Samuel’s life he felt active and healthy. He enjoyed participating in martial arts and several other sports. In 2018, when things seemed off, he didn’t suspect it was anything more than a cold.

On February 7th he woke up to a startling surprise. The left side of his face was drooping, and his speech was slurred. He could not move the left side of his body at all. When his mother saw what was happening, she knew something was terribly wrong and called 911. When he got to the hospital, they ran 2 CAT Scans and they told him he was having a stroke.

His physicians decided to perform an embolectomy, which is when they went through his arm to his brain to suction out the blood clot. When he woke, he was able to move his left side again and he felt a great relief. The doctors then explained that they looked a little further into his situation, being that having a stroke at 16 is rare, and they found that he had a serious heart condition. They then sent him to Le Bonheur Hospital in Memphis, Tennessee because they were better equipped to handle Sam’s heart condition. When he got there, he was immediately moved to the CVICU and the cardiologists explained to him that he had cardiomyopathy (enlarged heart). Cardiomyopathy is a disease of the heart muscle leading to decreased function. It was pumping so inefficiently that fluid was starting to build up in his lungs. They suspect the cardiomyopathy in place since birth and built over a lifetime to cause the stroke.

Two days later, things went from bad to worse. His short-term memory was beginning to fail, and his mother and staff would have to tell him information repeatedly. His heart rate was increasingly going up and he was constantly nauseous. When his heart rate reached a max of 238 BPM (beats per minute) he was shocked with the defibrillator three time to help reset his heart. He remembers being shocked the third time and jolting forward with a vision of a room full of doctors. One doctor was desperately asking him to wake up on the final shock. After this the whole room getting darker and then going back to sleep, but in reality, his heart had actually stopped. He was then placed on an emergency bypass called ECMO (extra corporeal membrane oxygenation) to get his heart and lungs to work again. When stabilized, his medical team were able to put an LVAD (Left Ventricular Assist Device) in to help assist his heart pump normally again. His physicians advised the best treatment going forward being a heart transplant and that this LVAD would help bridge him to heart transplant.

He came from a very strong church community. When he needed help, his mom went to church and asked her congregation to pray for her son. Thankfully, he didn’t have to wait long. February 16, 2018 he got the call and received his gift of life.

Some of his favorite moment’s inpatient were with his physical therapist. His therapists knew he was an athlete and wanted to get him back to that condition again. Which they did eventually accomplish. His most exciting moment post-transplant was in September when he ran a 5k with his OT and PT and their spouses and kids. He ran 3 5ks in the first-year post transplant Samuel still runs today and competes in 5k’s.

His proudest achievement is going to college. After being homeschooled his entire school career he was unsure if he could do it. But after getting his heart, he felt a renewed sense of purpose and decided to take his ACTs and did very well. He then applied and was accepted into the University of Memphis. His focus is to go to law school, and he is starting with his philosophy degree. Samuel’s best piece of advice for those waiting, get a support group and lean on your family to help you during this very difficult time. Never hide how you are feeling. Find as many people to talk to as you can to help you feel even a little bit normal. A support group that will stay with you and fight you the whole way is very important.

Thank you, Samuel, for being an incredible inspiration to so many!!

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Transplant recipient to transplant clinician.

Transplant Clinician

It all started when Brett was a sophomore in high school. Brett was in great shape, diligently going to the gym and preparing to try out for the upcoming high school baseball season. Life was as typical as it can be for any sophomore in high school.

In mid December 2013, he and his father were walking to AutoZone for a car part. Brett’s chest felt tight and he could not breath. Little did he know it was because his heart was increasingly enlarged due to an undiagnosed case of dilated cardiomyopathy. His parents were becoming very concerned. The first week of winter break he went to the hospital and staff noticed his resting heart rate was 148 beats per minute. He was taken to x-ray and saw that his heart was 3 times the size that a normal heart should be. There was an ambulance that transported him to Phoenix Children’s Hospital. When his wheelchair had gotten him to the CVICU he was surrounded by staff putting in IV’s, prepping medication to help him, someone starting an echocardiogram, and finally another putting leads on his head. He described the on flux of medical personal as like a swarm of bees surrounding him. Within 30 minutes of arrival they began discussing the possibility of a heart transplant with him and his family. This was the 19th of December. A week later, he was still inpatient and progressively getting worse. This is when physicians started talking to him about putting in a Ventricular Assist Device or an artificial heart. They said this could help his heart rest and possibly even heal his heart. On December 31st they put in the device (a Heartmate) to help his left ventricle.

This helped give his heart a break because it was under so much stress. Doctors knew that because his heart was in such serious condition, that even with the VAD he would still eventually need a transplant. He asked if he could go home and be on the VAD. He felt like the staff had done an excellent job educating him and he wanted to be the first pediatric patient in Phoenix to be discharged on an LVAD. They agreed and because PCH is a standalone pediatric hospital, they worked in partnership with the Mayo Clinic of Phoenix to follow outpatient care for Brett and his LVAD from home. He went from January to the end of March at home successfully on his LVAD. At this time, he really focused on physical therapy and recovery. He did light weight training and lots of walking to get his body in the best shape possible for transplant.

In March, Brett and his family received “the call” for his gift of life. His transplant nurse told him to be ready and to the hospital at 4 am. He admits being nervous and having his mind race at all the possibilities. When he got his chlorhexidine wipes and his final consent for surgery is when Brett took 15 minutes to pause and make sure it was in fact the right decision. Quite a decision for a sixteen-year-old, but his answer was clear. As soon as he signed consent, he was wheeled back for anesthesia and surgery and the rest is history.

Brett just had his yearly checkup with Mayo Clinic in Phoenix this past Monday. They had him doing a stress test in August and he is due for an angiogram next year. He is very healthy today.

Today Brett’s greatest achievement is going through college and he looks forward to receiving his bachelor’s degree next year. He is currently finishing up an internship with Donor Network Arizona. He very much looks forward to helping other pediatric transplant recipients from a social work and a first-person perspective. His philosophy is to help guide and not lecture so that patients come up with the resilience and guide themselves with positive knowledge to healing.

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Transplant gives new lease on life.

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Irene

Double lung transplant recipients Irene Marra, Allison Stokes and Deb Lofgreen being honored at a Diamondbacks game in 2019.

Prior to her lung transplant, Irene Marra had only 14 percent lung capacity due to autoimmune COPD inherited from her family. Irene could only walk around her house and out to her mailbox box without having to stop and catch her breath. She thought she would not be not a candidate for a life-saving lung transplant, but thankfully she did qualify. She was put on the transplant waitlist on Friday and was called on the following Tuesday to go to St. Joseph’s Hospital & Medical Center, part of the Dignity Health family, that there was a lung donor waiting for her. 

Her transplant took place on June 17, 2015 and has given Irene’s life purpose in immeasurable ways. She is extremely grateful for St. Joseph’s medical team and her donor. She feels like she has a second chance in life, and she’s using her second chance to help other transplant recipients transition to their new way of life. 

Irene feels its vitally important to educate the public so they know how important and life-changing organ donation can be. When speaking to potential organ donors she would ask them “Would you like to be a hero? Do you know your organs live on? Do you know you can’t take them with you! Please sign up and be an organ and tissue donor please.” 

 

A few years ago while attend a transplant support group meeting, Irene met Deb Lofgreen, a fellow double-lung transplant recipient and soon-to-be mentor. Deb ask her if she would like to participate in the Transplant Games of America. Since then she has become an active participant in the Games and with the local team members. She has been to two US games and one World Transplant Games in the UK in 2019. She hopes to participate in the upcoming Games in New Jersey and Houston. In order to prepare, Irene practices bowling and track and field. Her favorite event is bowling, as she’s a IPA wannabe league member. Irene wants to win medals, of course, and her ultimate goal is to meet participates outside of Arizona. 

As well as sponsoring Irene at the World Transplant Games, St. Joseph’s sponsored the inaugural 2019 Arizona Transplant Games in Chandler. As part of St. Joseph’s follow-up care for their transplant patients, they emphasize a daily exercise regimen to stay healthy after their transplant. The doctors, nurses, and social workers of St. Joe’s supported the AZ Games as a important community effort to keep transplant patients at their best. 

Thank you Irene for always raising organ donor awareness and being a integral part of Transplant Team Arizona. 

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Chain of Love. A Story of Living Donation.

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In Spring of 2008, Michelle and Tom Fulcher were enjoying being newlyweds when Michelle first decided to be tested to be a possible kidney donor. Her husband Tom had been dealing with CKD (Chronic Kidney Disease) for a lifetime. It was inherited and many of his siblings suffered with CKD as well.

After going through the test program involved in being a living donor, Michelle learned she wasn’t blood compatible with her husband. They decided to look into a procedure called paired donation. Kidney Paired Donation, or KPD, also known as a kidney exchange, gives that transplant candidate another option. In KPD, living donor kidneys are swapped with different recipients so each recipient receives a compatible transplant.

In late June 2008, Michelle got her chance to be a part of a KPD. The chain started with a couple of friends, one from California and one from Arizona. They weren’t a match, however the friends felt so strongly about living donation that they reached out to the Banner transplant center. The donor offered to give her kidney in exchange that her friend might be able to receive a kidney. They were not a match either. So the paired exchange began to build. In order to make this situation viable, the transplant center trying to find matches for multiple recipients that weren’t matched with their donor in what is sometimes called a domino transplant. When a donor/recipient of this group dropped out for health reasons, Michelle’s husband was next in line to complete the chain of transplants. She was able to give to a stranger, and her husband was able to receive from a stranger because they were part of a chain of altruistic living donors. The chain that they were involved in had 12 donors and 11 recipients. Their particular chain was the longest in Arizona history.

Since then, Michelle and Tom have done a lot of interviews for media, serve as mentors, and support legislation and advocacy on getting information out to people about living donor-ship. They help new kidney families with questions they might have to help make them more comfortable with the procedure. She advises, if you have questions and you can’t donate you can still be an advocate. If you have questions and you can donate, then you can save a life. There are new advancements happening all the time. Even right now there is immune suppression legislation in congress that you can help with. Making your opinions known to your state senator could help with making sure immunosuppression medication remains covered by Medicare and that living donors are taken care of after their life sustaining gift. Visit power2.save.org to find out more on advocacy.

If you are thinking, how do I start this living donation process because I want to save a life? The first thing you would do would be to contact a transplant team or a local nephrologist. Michelle advises to do your research. Questions like, will insurance cover this, or will FMLA cover time off as a donor which are very real items of concern and worth mentioning. Another question to ask is “What are the local hospitals involved in this procedure?” The research you do can help you form questions that you can then give to your nephrologist (hepatologist for live and pulmonologist for lung) a list of questions to discuss.

Every two years she goes back to have her kidney function monitored to that she can see she is still in good shape. She is continuously monitored as a living donor because it helps physicians understand how to best support living donors in the future.

Michelle’s favorite part is sharing. And of course getting to spend so many more years with her husband. She feels an obligation to share the amazing life they’ve had as a result of living donorship.

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Living life to its fullest, through CHD, heart transplant and beyond

When first meeting Evie, you can’t help but notice her warm smile, willingness to help others, and overall exuberance for life. You would never guess from her very humble beginnings.

Evie has been dealing with CHD (Congenital Heart Disease) since she was in her early
teens. Diagnosed with Sinus Valsalva aneurysm*1 and requiring emergency surgery to
replace her aortic arch at 14 was just the beginning. She left home with the help of her
school and social work around the same time for her own well-being. Then she survived a
stroke and was also diagnosed with Turner’s Syndrome at age 21. Despite all of this, she still
graduated high school and then college. She went on to lead a very active and normal life.
She was employed as her alma madder’s team manager of both the men’s and women’s
basketball team. Evie went on to hike Lassen Peak, which is a 5-mile hike with an elevation
of 10,463 feet at its peak. Surely a feat for even most heart healthy individuals.

She worked and lived life to its fullest until 1999, when her health problems forced her to slow down. She noticed being incredibly tired and short of breath. Her cardiologist, Dr. Gene Shafton, encouraged her to life her life until things got too bad. He then helped her find a center that would help list her for transplant. She was accepted as an excellent candidate not just for her underlying condition, but for her positive attitude that we all know and appreciate so much. They listed her as a heart candidate even though she didn’t have a designated caregiver which was a requirement of this and many other programs. She remembers the amazing support of her transplant team. Her favorite nurse was Patty Baker, who was always upbeat and would quiz Evie on her medications, dosing, and side effects.

April 16th, 2001, she got the call. When coming out of sedation, she remembered her last dream being of skiing down a mountain. This is surreal considering her donor, Amber, was teaching her siblings to ski when she got in her accident. She doesn’t remember any pain, just an overwhelming sense of appreciation of her new normal. There were no more PVCs *2 and she felt the normal circulation in every part of her body for the first time. Since that day she doesn’t take a moment for granted. She is always grateful for Amber’s family and their honoring her wish to donate.

Evie has battled her worst fear, which is rejection and come out as strong as ever. Now that she has is with the love of her life, Danny, she can care for others in the form of volunteering or advocacy. She gives advice to those younger and dealing with CHD to tell your family when you feel something is wrong and don’t try to hide it. The quicker they can get to a problem the quicker your heart failure team can help you. And to adults she advises to always be your own advocate, get a second opinion if necessary, know your history, and always take notes.

Today Evie’s favorite things to do are to volunteer for the Transplant Community Alliance or the Transplant Games. She loved helping athletes of all ages in the recent inaugural Arizona
Transplant Games. This makes sense since she has always been a helper to many from her
managing days at college all the way to this very day helping transplant athletes. Evie, finds joy in everything, even falling recently while gardening. Those aches and pains reminded her that she was so fortunate to be where she is today, alive and growing older every day.

Evie, you are always an inspiration to us all!

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From Polycystic Kidney Disease to a life of gratitude and adventure.

KIDNEY, TRANSPLANT, PKD, INSPIRATIONAL STORIES

We are very proud to feature our very own Transplant Community Alliance board member and Team Transplant Arizona member, Andy Bombeck.  He started life in Dayton, Ohio with a typical childhood, a famous mother and an inherited case of  Polycystic Kidney Disease (https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820).  His grandfather was also diagnosed with PKD and passed away when Andy was 9 years old.  When he found out that both he and his brother had inherited PKD he had an awareness of how bad things could get.  He was diagnosed in high school after cysts were discovered in an ultrasound.  He didn’t feel pain before or even after diagnosis because PKD often doesn’t show any symptoms at all.

He remembers his mom, author Erma Bombeck, being on the waiting list for 5 years and doing dialysis while waiting for her kidney transplant.  When she did get her transplant she had passed away within the month.  This was tragic for him, especially knowing he had the same inherited disease.  Thankfully now survival statistics are much better.  Survival rates with living transplants are incredibly promising. 

Andy found his PKD was mostly benign until he was 48 years old and he found that he had severe itching on his arms.  He didn’t think it was related to his kidney function.  He went to his dermatologist and told them about the itching which resulted in a blood test and that showed his kidneys were declining.  After some doctor visits and labs, it was confirmed kidney damage that would require a transplant.  Andy had hoped he had a few more years to go before things got bad because his mother passed away at 69. 

After being referred to a nephrologist in 2003, he was told his kidneys were twice as bad as his mother’s at his age of 48.  They were beginning to do more living donations at this time.  Living donations have been shown to have better outcomes post-transplant.  The current process only allows one person to be tested at a time as a potential donor.  Many of his friends offered to be tested.  His girlfriend is one of the people that offered to donate.  She is a type O and Andy is a type B blood type that is compatible and luckily she was one of the first tested.  It was a match!

Andy and his girlfriend went to John Hopkins to participate in the new laparoscopic surgeries for kidney removal and transplant.  Andy was intrigued by the new procedure and shortened recovery time.  April 11, 2003, they flew to Baltimore for the operation which was an amazing success.  They got an apartment for post-transplant recovery.  They both healed as donor and recipient together.  Because of the laparoscopic technique, the healing time was much quicker and the scars much less noticeable.  After the transplant, he had so much energy and felt like a completely different person. 

Andy’s first memories post-transplant was that of having boundless energy.  He said that pre-transplant you slowly lose endurance and don’t realize it until after you have your transplant and are at full capacity again.  Six months after the transplant, Andy and his girlfriend Sheri ended up getting married in December.  A year after their marriage they adopted a 6-month-old baby, Micheal, who is now 13.  This second life, with his own family, he truly considers a gift.  Truly a happy ending for his story.

Today, Andy has a very active lifestyle.  He loves to travel.  He was able to hike most of Mt Kilimanjaro post-transplant.   Andy is an avid hiker and hiked part of the Appalachian Trail last summer.  He plays guitar at Saint Vincent De Paul.  He volunteers with Donor Network, Children’s Miracle Network, Transplant Community Alliance and is active with Transplant Team Arizona.

Andy encourages living your life to it’s fullest because every moment is a gift.

COMMENTS (1)

 

Betty Day  · 0 Likes

  

I too was diagnosed with Poly Cystic Kidney Disease at the age of 21 at the age of 42 I started a downward Spiral. At 52 I had a Transplant . Going on 19 years I have lived longer than I would have on Dialysis. Thank You my sweet donor!!

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2020 Donor Dash

The first Donor Dash presented by Transplant Community Alliance on February 15th was an overwhelming success. We exceeded our runner limit and are happy to be looking for a larger venue for next year so that we can continue to grow with as our community support does. If you missed this refreshing, brisk morning run for a cause and to celebrate with friends, keep your eye’s out for next year’s run date to be announced soon. This will surely be a can’t-miss annual event.

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Runners and friends started arriving around 8 am. The Vendor Village included community supporters like Phoenix College School of Massage Therapy, Banner Transplant Institute, Pawsitive Friendships, ReacTvate Vitality and Wellness Center, Walgreens Specialty Pharmacy, and Transplant Families and Abnormal Hearts were there to share their stories. On display was a Donor Heroes Wall for recipients and families to pay tribute to their donors. The wall was filled with amazing messages about thankfulness and lives saved by unselfish final gifts from Donor Heroes. Reggie Donor from Donor Network of Arizona was taking pictures with everyone and getting the crowd excited to race.

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The race started at 9 am and they were off – Runners, walkers, dogs, strollers, kids, families and more. Our first Donor Dash had begun.  Over 200 runners and walkers were being cheered on by all in attendance.  

Every participant received a shirt and a medal, with the 1st, 2nd, 3rd in their age group for both men and women receiving awards.

Pictures now online at www.NewLifeSociety.org/gallery

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Just Ask Judy – February 2020

Are Medicare Advantage plans bad?

January 1st through March 31st is open enrollment time for Medicare Advantage plans. You can switch Medicare Advantage plans or leave a Medicare Advantage plan in place. You are able to pick up a Part D plan and possibly a supplement as well.

I have often been asked, “Are Medicare Advantage plans bad?”

Not really, they are just misunderstood. All too often Medicare beneficiaries try to enroll in coverage on their own without the free help from Transplant Community Alliance. There are some very important details to cover, especially for the transplant recipient. If you are unhappy with your plan, maybe it’s time to change.  You need to know the rules before you make any changes.

I can review your existing plan and we can look at what Plans are available.  You’ll learn how to get the best return on your investment (premium payments) while keeping the doctors you currently have.  A full plan review is waiting for you!   Email info@TransplantAZ.org or call 602-277-2661  to sign up for a consultation.

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Donate Life Day at the Capitol with Donor Network of Arizona

March 3, 2018

What a spectacular event this is to promote organ, cornea and tissue donation!  As you enter the capitol’s lawn, you see 158 large placards with pictures of donors, donor families and recipients from across our state!  One of the pictures featured is Anna A Tovar, a state senator and also a bone marrow and stem cell recipient.  We know she is a huge supporter of the transplant and donor community!

Donor Network of Arizona organized the events and had over 20 volunteers attend!  They facilitated meetings for legislators and staff to hear from transplant recipients to show our appreciation for their continued support.  Each senator and representative received a collection of materials to reinforce the importance of working together with DNAZ to promote future donation.

The highlight from the day was Joey Case, a donor family member and NASCAR driver, whose quest is to travel the country encouraging others to give the gift of life.  Excited recipients and donor family members were able to place a pink stamp and message on the hood of his black #35 race car!  Imagine the thousands of fans who saw the DonateLife message and pink stamps when Joey hit the NASCAR races that weekend!!

For the animal lovers there was a very special guest, Ozzy and his trainer Kellye Pummill!  This Pomeranian, dressed in his DonateLife vest, proudly roamed the grounds spread the word about donation.  A registered pet therapy dog, Ozzy is a fitting ambassador for the special event!

Congratulations to Donor Network of Arizona for hosting a positive event for the entire Phoenix community!  Mark your calendars for March 2019!  you won’t want to miss DonateLife Day at the Capitol!

Jill Bowers, kidney recipient