Summer 2022

RHTH Pancreas Recipient Wins 12 Medals at Transplant Games In San Diego

Congratulations to all the participants in the recently held Transplant Games in San Diego including our 2019 pancreas transplant recipient friend Melissa who won an incredible 12 medals leading Iowa to the team trophy for most total medals won during the games. What an amazing accomplishment. Her surgeon Dr. Odorico was so very proud when we shared the good news with him during one of our recent hospital visits! Such an inspiring performance to watch from a member of our own RHTH family!

Melissa's Transplant Story: In Her Own Words

On April 25th, 2019, my life changed forever. I was given the gift of life with the selfless act from a stranger… a pancreas. Receiving a pancreas, no longer made me a type 1 diabetic.


During my last semester in the BSN program here at St. Ambrose University I was diagnosed as a type 1 while working in the ER with a blood sugar of 1300. Being 23, at that time this new diagnosis threw a huge wrench in my life. At the time I thought I was “healthy” and had my schedule and lifestyle figured out.


I learned to manage my new lifestyle and had the mindset I will not let this run me; I was going to run it. So, I did, I wanted to prove a point that I can live a similar active lifestyle and manage being a type 1 diabetic.


I got married, had a baby and became an adult athlete. I competed in numerous races, ran a half marathon and a few triathlons.


I went from injections to wearing a pump to wearing a device (CGM) including monitoring on my smart phone and smart watch. I was somewhat obsessed with remaining healthy. I did not want to have those chronic diabetic complications, but somethings are also out of my control. 


Eventually with all the effort to maintain diabetes, I still became very ill. I had frequent ICU admissions for DKA and was constantly experiencing low blood sugars. After frequent pump adjustments, I eventually I was not recognizing my lows until they were critical, and my numbers were dropping faster than my devices would detect. With this scary situation, I became a candidate for a pancreas transplant.


Shortly after listing on the transplant list with University of Wisconsin, Madison, I received that bittersweet call. I’ll never forget that call at 10:20pm on April 24th, 2019. The moment I heard we have a match, I instantly sobbed. I immediately started mourning and grieving someone who I never will meet and a family that is being torn apart. My husband had to take the phone from me to answer the call centers request. She says YES, he replied.


Once I was able to regain some composure, I spoke with the call center given the advice the patient will go to the OR tomorrow morning then we will call you to head t Madison, WI. April 25th changed many lives that day. I was grieving with the unknowns and celebrating the fact that I was no longer a type 1 diabetic

After the 6 hours surgery the first thing my husband said to me when I woke up was “ honey you’re no longer a type 1, you are a survivor”.


I had a few complications post-op, one being the scariest for me. Two days after transplant I developed clots going into my donor pancreas. At that time, I was told I have a 2% chance of keeping my new pancreas. With those odds the likelihood off keeping my new pancreas was slim.


 My heart sank, I came this far, I had a gift, so I told my care team do what you have to do to keep me out of the OR and let me keep this pancreas. The Transplant Team in Madison did everything they could think of. They are truly something special to me as well. I’ve celebrated my 3-year anniversary with that same pancreas. I did not give up and nor did they. I have not had a unit of insulin since that day.


My husband doesn’t fear that I will not wake up due to a low blood sugar. My brain is not 24/7 thinking about lows/highs maintenance, equipment eating. The list goes on. I am able to play with our active son without pausing to correct a low blood sugar or even having pump complication like being ripped out. I coach his soccer team for the past couple years, I’m a den mother for scouts and get to keep up with building a strong example and childhood for my son.


I am an active volunteer with Iowa Donor Network and a huge advocate and everything I can possibly do to show my gratitude for this gift in honor of my donor. Just recently for the first time my family participated in the Transplant Games of America in San Diego. This is an event that includes organ recipients, living donors and most importantly donor families. I was able compete in events that I could dedicate all my emotions and energy to and not worry about blood sugars. This event was beyond amazing and to show the gratitude I have for organ donation and transplantation.

I’ve always received above and beyond care at UW-Madison and to have the opportunity to have a family feeling away from home is always humbling. We live two and half hours away and having the Restoring Hope Transplant House available while I was in the hospital for extended periods was very helpful for my husband. He was able to connect with those in similar situations and a sense of support when it was greatly needed. I enjoy staying in contact with the house and seeing other’s journeys.


I will forever be grateful to my donor and their family for the final selfless act. Not only did this gift change my life but also my entire family. It truly is a ripple effect

Thank you for this opportunity to share my story. Please register your decision!


-Melissa (Davenport, IA)

Pancreas Transplant Recipient

New UW Health Transplant Clinic Opens September 6th

It was so exciting to be able to get a sneak peek of the new Pleasant T. Rowland Transplant Clinic at UW Health before it officially opens on September 6th. We will let UW Health share the full tour of their beautiful new home in photos before we share our tour photos, but we look forward to showing you more in the near future. It will be such a beautiful new addition for our transplant families for all of their future clinic visits. I really think the transplant community will love this beautiful new home.A few words from Cindy Herbst that she wanted to share with everyone the day of our tour:

Dear UW Hospital Friends & Supporters,


It is a tremendous honor to join you all today in celebrating the opening of the Pleasant T. Rowland Transplant Clinic. What a life-changing addition this will be for the entire transplant community and for all of our Restoring Hope Transplant House families. We are extremely grateful to Pleasant Rowland for her compassion, generosity and understanding of what it means to be a transplant recipient on a lifelong journey towards a better life. 


In visiting with several of our transplant families recently, it has brought us so much joy each time we pass through this foyer and see the progress that has been made. State of the art facilities like this don’t just happen without a rich tradition of trailblazing visionaries, incredible minds, lifelong dedication and a compassion for serving those in need which this transplant program has been built upon over the years. There are so many legends in the transplant community who have passed through these doors and helped to make this beautiful new Transplant Clinic a reality due to their accomplishments. We celebrate today's grand opening with joyful hearts for what is to come and for all of those who paved the way through their successes and advancements in transplantation!


Since 2013, Restoring Hope Transplant House has welcomed many of your transplant families from all parts of Wisconsin, 44 different states and even 8 other countries. We are so grateful for the lives you have touched since we opened our doors. Many of our guests have become our very best friends and I can tell you with endless gratitude that you have given new life and hope to so many…including our very own bone marrow transplant family. 


We share this house each and every day with your families and feel as though we have a great pulse on the program from a distance as a result. There are always heartfelt conversations, endless laughs, anxious tears, jovial celebrations and the type of hugs that you only share with people you genuinely love. I can promise you that what you all do matters. What you do makes a difference. You should be proud of where this program stands amongst the world’s elite and you should also take great pride in having a hand in making this clinic possible for future generations who will pass through these doors. You have all contributed towards leaving this lasting legacy for which we are a proud partner. 


Congratulations on a monumental day for the entire transplant community!


Gratefully,


Cindy Herbst

Co-Founder & Executive Director

Restoring Hope Transplant House

The Transplant Journey: You Are Not Alone!

It’s the most rewarding feeling ever when a group of total strangers meet under your roof and they grow to care for each other to the point that they lift each other through the roughest days, celebrate together through the best days and always make it known that nobody here ever goes through this journey alone!

"I feel so blessed to be here with all of you. We are like family and have grown to really care about each other and the journeys we are on Thanks for giving us a home away from home in such a time of need and making us feel so welcome!"


-Lizzie

Heart Transplant Caregiver

De Pere, WI

Getting Back to Hospital Visits

Visiting friends in the hospital from time to time had become a big part of our supportive atmosphere here at RHTH prior to the understandable restrictions of Covid. I can’t tell you how nice it has been to get back to safely doing that more and more as the year has progressed. To lifting up our guests, celebrating the inspiring accomplishments of transplant doctors and staff to showing our appreciation to everyone on those floors who make these miracles possible. We truly missed that so much!

Liver Transplant Caregiver From New Hampshire Hopes You Will Support RHTH

My name is Karen Hagy, and I have been residing at Restoring Hope Transplant House, for over a month with my brother from Oshkosh who has been waiting for the gift of a liver. In the stillness of each morning, I get up before dawn and have coffee in a cozy living room and stare at a little sign on a puzzle table that says, “This house is built on love.” A trite sentimental thought for sure but in some cases, genuinely true and so much more…

 

These past few weeks, while sipping my morning Dunkin’s, I have thought a lot about “home.” I think about the home I miss in New England because home is the place that matters most in my life. It is where my beloveds live and where I find meaning, relationships, and shelter. My home provides me with security, comfort, nourishment, and a sense of belonging and it brings me health and great happiness. Home to me is so much more ‘”than a roof over my head.”

 

There are other places, if you are really paying attention, that become a “home away from home” in a sacred and profound way and that are also so much more “than just a roof over your head.” I have found such a place at the Restoring Hope Transplant House, which has become for my brother and me, a home of hospitality and friendship as well as a place of sustenance, wellness, and great hope.

 

At RHTH… You will become part of a family of new friends bound together by a shared life experience that unless you have been through it, you cannot possibly fully know or understand what it’s like to long for a transplant.

 

You will find collective wisdom that when shared, it becomes transformational and life-changing and can make the difference between a person just surviving to thriving, when undergoing transplantation.

 

Encouragement and cheerleading are mainstays in this house and on the bad days, the days when suffering is ever present and palpable, like when the gift of an organ becomes problematic or gets withdrawn, it really does ‘take a village’ of people to get you through.

 

I want you all to know that the staff are the foundation of this home. Their compassion and humor can carry the day and make you laugh when all you want to do is give up and cry, and this home is the rare place where both transplant recipient and caregiver are treated equally with dignity, care, and kindness.

 

And yes, this house really is built on love, “love for neighbor,” love for fellow transplant recipients, caregivers, volunteers, and donors alike, and that love promotes healing. ‘Home really is where the heart is,’ or where the liver or kidney is or where people reside who are going through what you are going through, and where abiding hope flourishes amongst community that extends far and wide. Home is the Restoring Hope Transplant House for all those of us on a journey towards and through transplantation to a long and healthy new life.

 

Won’t you please join me in giving to this wonderful, inspiring home that impacts everyone who walks through its doors? RHTH needs your support now so that it can be a place that matters most for folks undergoing transplants in the future, so that many, many more people will experience its lasting awesome, beneficial impact.

 

I once read, “that home is the nicest word there is.” Today, Restoring Hope Transplant House are the nicest words I can share with all of you. Let us give with glad and generous hearts so that others will find a “home away from home” at RHTH in Middleton, Wisconsin just when people truly need it.

 

Thanks for making a gift that will advance RHTH’s mission. Know you and your donation are most appreciated! Together, we can make a beautiful difference to transplant recipients and their caregivers! Blessings to you!

 

Karen Hagy, A Beyond Grateful Sister, and Liver Transplant Caregiver from New Hampshire. Spring of 2022.

Faces Of Summer-Members Of The RHTH Family

The sense of loving and supportive community has always been the very best part of Restoring Hope Transplant House throughout the years. This photo of one of our current heart transplant recipients getting to see her young daughter face to face for the first time in a month truly captured the importance of that loving support when going through the transplant journey. These are not just our guests…these are members of our family!

Former UW Transplant Doctor Donates Kidney To UW Patient

Dr. Djamali was always a hugely popular figure for so many of our transplant families. Click here to read his inspirational story of donating a kidney of his own to a patient in need!

It most definitely takes a village to make Restoring Hope Transplant House possible. We are grateful for all of our amazing donors, groups that host fundraiser events that benefit RHTH, people who help in volunteer capacities and those who always seem to find ways to help make this house just feel like a home through their thoughtful contributions. It is impossible to thank you all individually, but please know how much we appreciate you all!

When a major wind storm ripped through our area, it brought down multiple tree limbs and tore our sun porch door off one of the hinges to the point it would no longer close. 


We are grateful to Scott Harrington for his incredible skills that were required in the delicate tree removal, for his interest in the house and for going above and beyond in his services and coming in at a much lower cost than expected. Also so appreciative of the RHTH family who raised over $1,500 in a Facebook fundraiser to help us cover the unexpected costs of the tree removal. We were also blessed to have Lions Club friends Al and Adam spend an afternoon volunteering to help us remove the storm damaged door and hang a new one. It means a lot when community minded people like this step up and help get us through things like this. Thank you all!

UPCOMING EVENTS - Fundraisers for RHTH

Live Love Donate Link

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Follow Eric's RHTH Updates on Facebook
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Many of you have gotten to know our House Manager Eric over the years as he has been here on a full-time basis from the start. RHTH is a labor of love for him as he has spent time with virtually every transplant family who has ever set foot in this house. For more frequent updates on Restoring Hope Transplant House, please follow all of the updates Eric makes on a regular basis to the RHTH Facebook page linked above. Thanks for following!

CONTACT RHTH EXECUTIVE DIRECTOR
CINDY HERBST
Thank you for your interest in Restoring Hope Transplant House and our transplant family friends who call it home. We appreciate you taking the time to read through our e-newsletter updates and following our progress.

If you would like to learn more about RHTH, please call me at 608-831-1726 or email me at the link below.

Email Cindy
Thanks For Reading Our Updates!