Restoring Hope
May 2019
Life After Transplant For RHTH College Students
Philip's Life With Type 1 Diabetes & A New Pancreas Transplant: Moline, IL
 
The support we received at Restoring Hope Transplant House played an essential part in our successful transplant journey. Philip received a pancreas transplant on July 28th at midnight. Let me retrace our steps to provide you a bit of context.
 
Our journey started a decade ago when Philip was diagnosed as a Type 1 diabetic. Over the last ten years we have had many ups and downs, but he never let diabetes define him. He refused to be restricted by being a diabetic. He would continue to play baseball and golf, run cross-country, learn to play the cello, and achieve the rank of Eagle Scouts.  
 
Nonetheless, it was apparent that this disease was taking its toll on him. As a mother, this is hard to witness in your child. There were some serious concerns regarding his health since he was unable to feel his diabetic lows or highs. In the last year prior to his transplant we had several trips, including a helicopter ride to the hospital. His senior year of high school, we were informed that a pancreas transplant may be the only solution for Philip to reach adulthood. We had our first appointment with the transplant team in June, he was listed on July 27th, and we received a call immediately letting us know that a matching donor transplant was available. We were blessed.
 
To say we were prepared for this experience was an understatement. We made our way up to Wisconsin the morning of Saturday, July 28th. We had discussed staying close to the hospital since we did not want to impose on anyone. Unbeknownst to us, the World Championship of CrossFit was currently taking place in Madison. We were frantic since many options that we had originally considered were no longer available. We shared these concerns with a nurse and she contacted Cindy at Restoring Hope Transplant House (RHTH). She was able to provide a home away from home for my family.
 
Several hours before surgery I decided to stop by the RHTH to introduce myself. I arrived at the house and had just met Cindy Herbst when I received a call that the surgeon would be arriving shortly. Who knew that Cindy would become my rock. She provided the support my family needed and gave me the words that I needed to hear at that time to get us through this life-changing experience. I truly felt RHTH became our home away from home and that we were part of a greater, supportive family in Madison. I believe that we were meant to stay at RHTH and meet Cindy and Eric.
 
After surgery, the surgeon informed us that Philip had a beautiful pancreas and that everything went very well. Once I saw Philip post surgery, I traveled back to the RHTH. It was there that I was able to meet two pancreas transplant recipients over breakfast. Meeting these two wonderful ladies was reassuring and comforting. I was able to see Philip's journey through their eyes. None of this would have been possible without this incredible house and people.
 
Philip is one of five children. Our family decided that I would stay for Philip's recovery while the rest of the family would return home. I admit, I was an early riser and returned to RHTH late in the evening. Every evening, Eric and some of the guests would greet me warmly and provide a nice supportive environment when I returned. Every morning, I had the joy of meeting Cindy and additional guests over breakfast which bolstered my resolve to be a supportive advocate for my son.
 
I joke with my family that they are usually gone or something happens during my birthday. This year was no exception, my birthday arrived three days after Philip's transplant. I still remember coming back to the RHTH to finding Eric and guest with a birthday cake and singing happy birthday. It is that kind of thoughtfulness, kindness, and support that you can only find at this home. Philip made a quick recovery and was out a week after his transplant. He had several goals that he wanted to accomplish (starting Augustana College in the Fall and making the baseball team) and this was not going to slow him down.
 
Philip started college less than three weeks after his surgery. He then returned with me to the RHTH three weeks later for his first stay. He was able to experience first hand the care and generosity of everyone involved. Philip was able to bond with other transplant guests and caregivers. We still return to the transplant house. It has helped lessen the stress and helps us really focus on Philip having a successful transplant and recuperation.
 
As Philip's transplant journey continues, his life also moves forward. He made the Augustana College baseball team and is successfully completing his freshman year.
 
We also plan to continue visiting the RHTH. I hope that we can provide to other guests the love and support we experienced during our stay.      
 
As I am writing this, my heart is full of love and gratitude that we are part of this loving supportive family. We were always meant to start our transplant journey with the support of Cindy, Eric, and Restoring Hope Transplant House guests. Transplant recipients and families are fortunate to have the Restoring Hope Transplant House, Cindy, Eric, and all the volunteers on their team to recovery. We are thankful that you are an integral part of supporting the Restoring Hope Transplant House. Without this support, this house would not be able to help all transplant recipients and families. Please know that you are making a huge impact on lives. I hope to be able to continue providing positive updates on our transplant journey.
In Their Own Words: Bone Marrow Transplant For Savanna, IL Student
 
In December 2016, I was living the best high school senior life anyone could. I was the cheerleading captain for my school, engaging in multiple AP and dual credit courses, and finding where I was going to have my college experience at. Nothing really seemed to be wrong with me except that I felt more tired than usual and couldn't get over a treatable case of strep throat.
 
When I went back to the doctor to see why I was not getting over the strep throat with the antibiotics they gave me, they ordered blood work to be done. Later that day when I had just got done with my AP Calculus class, I was told to take my things and to go to the office. I found my parents there and they told me that we were going to go to the University of Wisconsin, Madison hospital to get more testing done. When I heard this news I broke down. I was scared of what was going to happen and what my future was holding.
 
Once we got to Madison and ran several tests I was diagnosed with Acute Myeloid Leukemia. I started chemotherapy right away and would be spending 3-4 weeks per chemotherapy in the hospital for almost 5 months. I got through my chemo and was in remission just in time to attend my senior prom and graduate with my class.
 
Fast forward to the fall of 2017, where I was going to be attending Augustana College in Rock Island, IL. Here I was able to join some great organizations such as Camp Kesem, an organization dedicated to providing children of parents who have had, have, or who have died from cancer, and Epsilon Sigma Alpha, an International Service Sorority dedicated to serving communities across the world. Once able, I had declared my major as Biology with a focus in nursing. I was living the best life that I could up until November of 2018.
 
I had gone to Madison for a routine check-up when my labs had shown an abnormal number in my blood. After running several test my doctors had determined that I had relapsed and I would be undergoing chemotherapy again along with a bone marrow transplant. I was devastated as I did not want to leave the new family I had met at Augie. Thankfully, I had only one round of chemo and then went straight into my bone marrow transplant. My bone marrow transplant had come from a fully matched unrelated donor from the national registry.
 
Once my transplant was done, my doctors wanted me to stay in the Madison area so that they could keep an eye on me. My doctor had suggested the Restoring Hope Transplant House. At first, I was a little skeptical as anyone would have been with coming into a strange house, but I was immediately greeted with open arms and smiles. The facilities were wonderful and other guests were so helpful. Here, I could feel as if I was at home, when home was really 2 hours away.
 
Thank you to everyone at the Restoring Hope Transplant House for all the support that they have given my family and I. Without this help, I would not have been able to recover in peace and be able to live the healthy life that I am today.
 
Elizabeth R.
Savanna, IL
Hospital Visits To See Family
When you share a home with someone during what may be the single greatest challenge of their lives, you become family.  It is a special bond you share forever even after families have long since returned home.  I can't tell you how many times we have made hospital visits with the intent of lifting spirits only to get there and realize that they are the ones lifting our spirits!
Beautiful Day For Central Wisconsin Gift of Life Scavenger Hunt
Appreciate the friendship and support of Central Wisconsin Gift of Life and all of the incredible people who participated, supported and sponsored their recent Scavenger Hunt that benefits Restoring Hope Transplant House and other transplant related causes.  Such a compassionate group of people who are some of the very best promoters for organ donation we have in the transplant community.  We are so grateful for all they do to help with funding and much needed supplies for this house and all they do to spread awareness for our cause and the importance of organ donation.  What a difference your efforts are making!
4th Annual Restoring Hope Thrift Shop Scavenger Hunt in Seymour
Nice to have a rare free day in the calendar to be able to enjoy the afternoon with one of our old transplant families for their 4th Annual Restoring Hope Thrift Shop Scavenger Hunt up in Seymour.  Appreciate the Matuszak family, their incredible group of friends and all the generous sponsors, participants and hosts that made this such a fun event that helped to raise over $4,500 for the house they once called home during transplant many years ago.  Also great that this event contributed to our mutual friend and fellow RHTH guest Chuck (Bonduel, WI) and his family who were also hosting a fundraiser event the same day to help offset so many of Chuck's medical expenses following his recent stem cell transplant.  Love you all! 
Kidney Autotransplant Patients From Across The Country Coming To Madison
"What you and your family have shown me in these past few weeks has left me absolutely speechless. I prayed for people to understand me. I can look at these transplant patients and truly say "I know you!" -and that is where healing begins."
 
-Jessica
Kidney Autotransplant Recipient
Fredricksburg, VA
 
Some of our Kidney Autotransplant families below from Maryland, Illinois, Wisconsin, Minnesota, Michigan, Florida, California, Virginia, Colorado and Arkansas.  UW Hospital is the #1 destination for this procedure!  
What Is A Kidney Autotransplant?
In the words of our recent AT recipient Steffanie:

"In the case of a kidney autotransplant, a kidney is moved from its original location to a different spot in the body. For example, my left kidney was removed, had some repairs done, and is now nestled in my right groin. It's a big surgery...the patient is both a donor AND a recipient, but we don't have to deal with any anti rejection medications down the road. UW Madison has THE most knowledgeable and skilled surgical team in the country for this surgery."
 
Click here for more information on kidney autotransplantation
Donate Life: We Can Do Better!
During a recent visit, we learned that 60% of Wisconsin women have registered their intent to be an organ donor while 40% of Wisconsin men have joined the registry.  Wisconsin does a great job of promoting organ donation and generating organ donors, but there is so much room for improvement so that so many of our RHTH guests don't have to continue waiting on the list for their own miracle.  Please take a moment to learn more about organ donation to decide if it is right for you.  I can promise you, we see firsthand the incredible miracles these donors provide families in need each and every week. Please help us raise awareness and lift these numbers throughout Wisconsin and beyond!

Some Of Our Favorite Spring Pics

 
"No Detectable Cancer Presently!"
Congrats Steve & Julie
#CelebrateEverything
Annual Doug Miller Transplant Symposium
Great to see so many old friends and meet some incredible new people at the Doug Miller Transplant Symposium in Wisconsin Dells.  Appreciate the opportunity and all the kind words! 
VA Transplant Fair
It was a real honor to be invited to the recent VA Transplant Fair.  Appreciate all these great people do to help so many of our visiting VA hospital transplant families.  Thanks for a fun day!

With Gratitude To Lions and Lioness Clubs For Their Support 
Our most heartfelt thanks to so many of the kind-hearted Lions and Lioness Clubs who continue to work behind the scenes to support this house and our transplant families this spring so that all of the miraculous stories you read above are possible.  On behalf of a very grateful transplant family, thank you so much for all you do...I wish you all could spend a night with us to see firsthand how much of a difference your efforts make here each and every day!
 
Also appreciate Lion Faliveno, our RHTH Lions Club Representative for joining Cindy while touring the new office of the Organ Procurement Organization.  Always wonderful to see Carol Hay and friends!
Upcoming RHTH-Transplant Events
May 19 in Oshkosh: Annual square dance fundraiser to support RHTH hosted by Preceptor Alpha Mu chapter of Beta Sigma Phi

Join the Bone Marrow Registry
Our friend Steve from Danbury recently went through his second bone marrow transplant and was just declared cancer free. We encourage you all to learn more about joining the bone marrow registry to help give life to so many of our dear families in need.
Organ Donation Saves Lives - Become An Organ Donor Today!
Congratulations to our friend Tim from Arpin, WI who recently received his much needed heart transplant at UW Hospital.  Tim was just released to RHTH yesterday after a lengthy hospital stay.  Fun to hear the excitement in his voice and aspirations he has for the future.  That's what this is all about!

Please take a moment to learn more about organ donation and how you can register to become an organ donor in your state.  A few moments of your time could one day save several lives.
You Can Help - Support RHTH & Transplant Families Today!

If this cause and the above faces, families and stories inspire and move you, we hope that you would please consider making a donation to Restoring Hope Transplant House.  Your generosity is so vitally important  as a non-profit that depends almost entirely upon financial contributions.  We simply cannot do this alone.

Please help support the transplant community by making a secure online donation to Restoring Hope Transplant House via PayPal today! 

We are also actively searching for major donors to help with our joint efforts with the Lions Clubs of Wisconsin and others to help push us over the top for our extensive plans to renovate and add on to the current house as well as monthly donors and fundraisers to help with operating expenses.  This will ensure that Restoring Hope Transplant House becomes a longtime fixture in both downtown Middleton and in the transplant community.  If you have any suggestions, connections or interest please contact Executive Director Cindy Herbst at 608-831-1726 or via email at restoringhope@tds.net.  Please help!
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With love to dear friends we have lost this spring and the families we grew to love as our own!  We shall never forget our time together!
Cindy gives out hugs and well wishes to a Maryland family on their transplant day
About Restoring Hope Transplant House - Contact Cindy

Restoring Hope Transplant House is a non-profit home established to serve organ and bone marrow transplant patients and their families. The home features six generously-sized guest rooms, multiple sitting rooms, full kitchen, laundry, cable tv, wi-fi and a tranquil yet convenient location in downtown Middleton, just five miles from UW Hospital.

If you have any questions about RHTH, please contact Cindy to learn more.