Two years ago Ed Brandecker Sr. was diagnosed with Focal Segmental Glomerulosclerosis, FSGS, a degenerative kidney disease. Just recently the disease has progressed dramatically and Ed’s kidney function has severely dropped putting him in end stage renal failure. He undergoes dialysis three times a week, 4 hours each time, deeply affecting his quality of life and his ability to work.
The good news is that his wife, Cassandra, is a match. She gave Ed her heart in marriage almost 6 years ago and will be giving him the “gift of life” with her kidney donation. After months of testing and preparation a date has finally been set for a living donor kidney transplant. The couple and their families couldn’t be happier. Transplants, however, are extremely expensive, and costs can be devastating. Even though the insurance company will cover most of the procedure, there are payments for hospital visits, clinics, and and medications needed for the rest of his life that insurance will not cover.
Ed’s recovery time will be 12 weeks. Cassandra’s recovery time 4 weeks. Since both of them will be out of work for a significant amount of time, the extra expenses and lack of income will be a heavy burden.
It’s never easy to ask for assistance, but affording the recovery time and noncovered medical expenses related to a living organ donation / transplant surgery is a very difficult challenge and Ed and Cassie need our help. Your financial gifts and prayers will be greatly appreciated.
with sincere gratitude,
Lynne Getchell Heath
Ed and Cassandra’s Family and Friends have chosen to fundraise with HelpHOPELive (HelpHOPELive) in part because HelpHOPELive provides both tax-deductibility and fiscal accountability to contributors. Contributors can be sure that funds contributed will be used only to pay or reimburse medically-related expenses. To make a contribution to this fundraising campaign:
August 17, 2010
Tale of Two Kindeys: An Interview With Cassandra and Ed Brandecker
by Edie Weinstein on Monday, August 16, 2010 at 5:47am.
A Tale of Two Kidneys: An Interview With Cassandra and Ed Brandecker
by Edie Weinstein on Monday, August 16, 2010 at 5:47am
On a steamy, Summer Saturday night, the temperature outside couldn’t match the warmth inside the Eagle Fire Company in New Hope, PA. It was there that upwards of 400 people gathered to support a couple who were about to embark on an unexpected adventure, that would enhance the quality of life for each of them and ultimately save the life of one of them. July 31, 2010, a fundraiser cleverly titled: Got Guts? (Become An Organ Donor) was held to benefit NTAF Mid-Adlantic Kidney Transplant Fund in Honor of Edward Brandecker Sr. His wife Cassandra Brandecker is his living donor. I found about this event via a mutual friend and instantly knew I had to attend. You see, 11 years ago, my life was dramatically altered when my husband died while awaiting a liver transplant. It led me to become an organ donor educator. I had long had the words ‘organ donor’ stamped on my drivers’ license but when Michael went on the UNOS transplant list, the need for organ donors became personal. I entered the firehouse and was astounded by the number of people milling about, hugging as if at a family reunion, laughing, eating from the full to overflowing buffet table, listening and dancing to music, bidding on donated items. The round clothed tables had been humorously decorated with multicolored balloons, anchored down with cans of kidney beans. Those came from the creativity of Cassandra’s sister Lynne Getchell Heath, the master-mind behind the evening.
I wanted to get a sense from each of them about what led them to this point in their lives and what grace and resilience it is taking to see them through. The surgery is scheduled for Wednesday August 18th, 2010. They welcome prayers and healing energy.
Can you please give a little background about your relationship…how you met, how long you’ve been together?
Cass: We met at Apple Jacks, exactly seven years ago in August. I was working as a DJ there and my sister, Lynne, was the bartender. Ed was heading back home to Doylestown from J&L Cycle in Frenchtown, NJ where he often would stop after work to turn a wrench on his Harley Davidson. He came into the bar and sat down. He says that he noticed me right away and was trying to figure out how to talk to me. Being the DJ, he decided to request some songs. Of course, I didn’t have what he requested, but we struck up a conversation. I remember the conversation between us was so easy that it felt like I knew him forever. That was it for me. I knew I found the guy I’d be with for the rest of my life. We started dating in September in 2003 and he proposed in April of 2004 and we were married on September 4, 2004 in my parents’ backyard in Point Pleasant, PA in their gazebo alongside the canal.
Ed: I was working on my Harley at nights at J&L cycle in Frenchtown. On the way home I would stop at a local pub, Apple Jacks, have a couple beers and a bite and then go home. One night I worked late on a Friday and that was the same night that Cassie was the DJ at the bar. I was blown away. I couldn’t stop looking at her. I felt like a little kid staring all the time and trying not to get caught, but I knew that I had to talk to her. I said to myself "Hey dummy, she’s a DJ, ask her to play a song!" She didn’t have "the blues" or anything else I wanted to hear, then she came up to me with Lynyrd Skynyrd and I picked three songs and she played them all in a row for me. Since that night I worked on my bike late every Friday just so I could see her again. The rest is history, we’ve been together almost 7 years. Married for almost 6.
At what point was the kidney disease diagnosed?
Cass: In December of 2006, just a few days before Christmas, Ed’s son, Eddie (Ed Brandecker, Jr) was in a horrible car accident in his senior year of high school. He was in ICU for almost a month and the doctors weren’t sure if he would make it. A week later, we lost a dear friend in his early 40’s, Steve Long, from cancer. Seeing that life is short and fragile, Ed decided to go to the doctor for a complete physical. He was referred by his primary care physician to a nephrologist because of an elevated creatnine level and protein in his urine. He was diagnosed with FSGS in 2007, three short years after we were married.
How did you face it when you received the news?
Cass: I think Ed was frustrated. He wanted something to blame. FSGS is a chronic degenerative disease that isn’t hereditary and it’s not from an unhealthy lifestyle. The doctor described it as "Sometimes, shit happens, and unfortunately, it happened to you". I think if he knew where it came from and why he had it, he would have been able to cope a little easier. For me? Well, I figured, this sucks, but we’ll get through it.
Ed: Denial. Anxiety. Fear. Reality. I just didn’t want to believe that this was happening to me. Things like this happen to someone else. The anxiety of it and the fear were wrapped up into one because I still have kids, a job, a young wife. I still needed to work and support my family.
When did the decision come, for Cass to be tested as a potential donor and then once you realized you were a match, what was that like?
Cass: When Ed’s doctor had suggested that we start going through the process of picking a transplant center and getting set up and evaluated for transplant my immediate thought was "I’m his wife, if any one is going to give him a kidney it’s gonna be me!". Ed however, felt very differently. He didn’t want my kidney. He wanted me to be whole so that I could continue to work so that our financial burden wasn’t so great, but I think mainly he wanted me to be able to nurture him back to health. However, as we started the process to have him evaluated with Lehigh Valley Transplant Center, I also quietly began the testing to be his living donor. He still wasn’t okay with it, but I told him that I wanted to do get through the lengthy testing process and be ready to go in case something happens and he needs this kidney a lot sooner than we think. There were people who said that they wanted to get tested for Ed and he gave them the number to the transplant team. In the mean time, Ed was deemed a good candidate for transplant and was added to the national waiting list for a cadaver kidney. Then, in the fall of 2008, I received a call from the transplant team and they said that our blood type was a match and when they mixed my blood with his blood, there was no reaction (which was a good thing). I was excited and startled at the same time, but definitely ready to get the rest of the testing done. I don’t know statistically what my chances were of being a match, but for some reason, I didn’t think it was likely. To our knowledge, no one else got tested and Ed began dialysis in October of 2009 and he was terrified. It broke my heart to watch him try to psychologically wrap his head around the whole procedure. It was then that Ed changed his mind and was willing to let me be his donor.
Ed: My wife was the first person to step up and get tested to see if she was a match. She ended up being my angel from heaven and that is how I truly feel, because she is a good match and she loves me enough to want to do this. I didn’t want her kidney in the beginning. I thought we’d hold out and by a miracle, something would change, or I would get the call that I’d receive my cadaver kidney from the transplant list. The fact was, she was the best choice for the best success and she wouldn’t leave me alone about it.
There is a Hebrew term: be’shert which translates as ‘meant to be’. Is that what this feels like?
Cass: Absolutely! We were meant to be, this was meant to be, it’s all in the cards for us. Although I wouldn’t want anyone to have to go through this, we are learning many lessons along our journey. We will be fine.
Ed: As I said prior, she is my angel from heaven. There are many "meant to be"s in our relationship.
How do you imagine your lives will change as a result?
Cass: Initially, I’m guessing it’s not going to be much fun, but I look forward to watching Ed regain his quality of life. I want to watch him enjoy the simple things that he used to take for granted, like swimming in the river with our dog, having the strength for around the house projects, riding his motorcycle and hopping in a boat to go fishing with a buddy.
Ed: I think this whole thing has made me more humble. We all feel a bit that we are invincible in a lot of ways, and we are not. I think I’d like to help others in the same situation, but as far as OUR lives, we are just going to live the dream.
Can you talk about the fundraiser and the outcome?
Cass: The fundraiser was not something the Ed and I were at all comfortable with in the beginning. We take pride in being self-sufficient and buckling down to get through what ever obstacles are thrown our way. It’s not easy for us to admit that we can’t do this on our own. My sister listened to us as we were going through the journey to transplant and quickly realized that our financial needs would be great. The fund raiser was completely her idea and she had to ease us into it. She set up the alliance with NTAF and Ed’s patient account. Then she hit the ground running with planning, marketing, gathering donations, creating posters, websites, t-shirts, mugs, you name it! Thanks to Lynne and our families, and the support of many, many other volunteers and donors, the benefit was well on its way. Ed and I were sort of "kept out of the loop" as far as the planning stages of the benefit were concerned; only getting small details here and there about the planned festivities. When the day arrived, there were close to 350 attendees, which far exceeded our expectations. It was awesome and overwhelming at the same time. I found myself looking at a sea of familiar faces and feeling their love and support. I struggle to find the words to describe my gratitude, but found myself speechless. The proceeds of the benefit are enough to pay our expenses (Mortgage, Utilities, Insurance, Groceries) while we will be out of work due to recovery. There was also enough money raised to help pay the co pays for the anti-rejections drugs that he will be on for the rest of his life. It has bought us enough time to concentrate on each other and our health and worry about the rest later. We will head into this transplant at ease and with love in our hearts.
Ed: The fundraiser was amazing. It’s not something that I wanted in the beginning. I was a little proud about it. I didn’t want to accept that fact that I needed help, but we all come to the reality, sometimes you do need help. My sister-in-law, Lynne, did something for me I don’t know how I can ever repay her. With all of the family, friends, neighbors, contributors, volunteers all I can say is thank you. It was a huge success.
You spoke about the ‘pay it forward’ concept. How do you want that to play out?
Cass: I’m not exactly sure how I can pay this forward yet, but I have learned a lot on this journey. I have learned that what may seem like the smallest gesture, can mean the world to someone else and you never truly realize the impact that you have on other people. After we get through this transplant, I would like to be available to help other people who are going through the same thing whether it be talking to another living donor about my experiences or helping a recipient raise money for a transplant. We have been so fortunate and I want to pass on the generosity and support that we have received.. I’m not exactly sure where I will be of most use, but I will be reaching out to find the way.
Ed: I personally want to revisit the dialysis center after I am transplanted. The staff is excellent and I care about the people that are in there – patients and staff alike. I want to show then that there is a light at the end of the tunnel. I would be interested in helping in other fundraisers for someone else.
Why is organ donation essential?
Cass: To be honest, I hadn’t signed up to be an organ donor until 4 years ago. The whole idea freaked me out and I had a few common misconceptions about the whole thing. I’m not sure what actually persuaded me to check the box for organ donation, but I did. What I didn’t know is that there are over 100,000 people currently waiting for organ transplants. According to www.organdonor.gov this number grows by 300 people each month and 19 people each day die waiting for their transplants. One donor can save the lives of up to 8 people and enhance the lives of many more. It seems like a no-brainer to me. Why not recycle your organs and save the lives of others?
Ed: It gives people a quality second chance at life.
Can you speak about the living donor idea?
Cass: I also think that living donation is an extremely fulfilling experience, and I feel honored to have the opportunity to make a difference in my husband’s life. How often do you watch a loved one hurt or suffer and wish there was something that you could do about it? This is one of the few instances when you actually can! I urge others presented with the same opportunity, to seriously consider it. Their living donation not only helps their loved one, but it also takes one more person off of that waiting list, opening up an organ for another patient. Organs from living donors also have a significantly higher survival rate than cadaver organs.
Ed: I am obviously a big supporter!
Is there anything else you want to share?
Cass: I am humbled by the love and support from our family, friends, neighbors, community and even strangers. I will strive to share the love and pass this feeling on to others. My sister, Lynne, had an interesting observation: why is it in our human nature to help others and yet it’s also in our nature not to ask for help when we need it?
Ed: I’m guessing I’ll have a lot more to say post-transplant.
Edie Weinstein is a Renaissance Woman and Bliss Mistress who delights in inviting people to live rich, full, juicy lives. She wears many hats: journalist, speaker, interfaith minister, social worker and PR Goddess. www.liveinjoy.org for more info.
June 7, 2010
Got Guts? Beef and Beer Benefit.
NTAF Mid-Atlantic Kidney Transplant Fund to Benefit
Edward Brandecker Sr. & Cassandra Brandecker
Living Donor Kidney Transplant Recipient and Donor
got guts? (become an organ donor)
Brandecker Beef and Beer
to Benefit NTAF Mid-Atlantic Kidney Transplant Fund
in Honor of Doylestown Resident
Edward Brandecker Sr.
Ed’s wife is also his living kidney donor…a match made in heaven!
Saturday, July 31, 2010
Eagle Firehouse, New Hope Pa – 6:00 – 10:00 pm
Live Auction – by Noel Barrett from the Antiques Road Show
Door Prizes, Live Music, Chinese Auction, 50/50
25 E. State Street
Doylestown, PA 18901
Heath’s Exxon Station
83 Bridge Street
Melson’s Service Center
295 West Bridge Street
New Hope, PA 18938
2 Elm Street
Lambertville, NJ, 08530
For more Information Contact Fundraiser Coordinator:
Lynne (Getchell) Heath 215.589.2660 (C)
Photo Galleries (2)
August 10, 2010
Dear Cassie, Please know that you and Ed are in my thoughts and prayers. Be brave,have faith, and look forward to a healthy happy future together.Always remember that you have been a part of my heart since the day I first held you in my arms.Your happiness will be my happiness.
August 4, 2010
with love and prayers, as always ya'll is in my thoughts. it was nice to see ya this weekend and knowing I will see you again is the best part. love always chuckles
July 31, 2010
Ed and Cassie, You are such great neighbors and nice people! We will be thinking of you and wishing you a speedy recovery and if you need anything we are right across the street!
Lance, Jenny and Dylan Weiler N.Chubb D-town
July 25, 2010
Read the article about you both in the Herald.. Good Luck! Hope to see a wonderful followup article down the road :)
Donna McConomy, Chalfont, PA