Kurt's Transplant Fund
Donation protected
My wonderful son-in-law, Kurt, was born with Cystic Fibrosis and despite being told he wouldn't survive into his mid-teens, he was able to beat those odds and recently celebrated his 35th birthday! Kurt was blessed to have his first double lung transplant June 2013, but sadly experienced rejection in April 2017. Since then, Kurt's lung function steadily declined and his pulmonologists didn't think he would be able to see 2020 due to his lung function dropping below 20%. In order to qualify for transplant, Kurt needed to gain weight and undergo many unpleasant tests. Since his transplant team is at the Cleveland Clinic in Cleveland, Ohio, Kurt and my daughter Samantha had to make the 3+ hour trip on a regular basis.
In March, the Covid-19 pandemic halted the entire screening process. The virus which crippled the world created a national shelter-in-place order which kept Kurt indoors and away from everyone's germs. This mandated quarantine actually kept his condition stable and surprisingly healthy despite his low functioning lungs. After resuming the many required tests and hospital board case review, Kurt was finally approved to proceed forward with his second double lung transplant on June 1st, 2020. He will be officially listed on June 22nd.
Now starts the waiting game to receive "the call" and dealing with the financial burden. My daughter is currently the only wage earner and works multiple jobs to keep their bills paid. They've been told that their total out of pocket expenses can be around $75,000 to $100,000 depending on what their insurance pays.
God has always blessed our family, and having Kurt in our lives have been one of the biggest blessings, as he is the kindest, most generous and loving person I know! Samantha and Kurt will have a long road ahead of them together so I wanted to help them lessen their financial burden as much as possible with this and other fundraisers. Any amount donated is greatly appreciated!
Here is Samantha's story of their journey together:
"Kurt and I began our journey through an online dating website in May of 2015. We spoke for five weeks before finally meeting in person on June 26th. Within a week of chatting online and finding out his last name, I completed my own background check on him via Facebook. It didn't take long to figure out that he has Cystic Fibrosis and a double lung transplant.
I was angry and upset with God that he had this terminal illness. I already knew about CF from reading Lurlene McDaniel's book series as a teen. A quick Google search describes the life expectancy to be 37.5 years. I had found the perfect guy and he had to have a terminal illness.
Mind you, this entire time, Kurt did not know I knew his health history. When I met him, he was not coughing or exhibiting any symptoms so I forgot that he even had CF. In fact, it wasn't until early August when he was about to inform me about having a childhood illness that I blurted out that he had CF. The look on his face was priceless!
(Kurt waited until two months after we met and we exchanged "I Love You's" before he felt comfortable telling me about his CF. His past experiences often meant dates stopped talking to him shortly after finding out. He was afraid that he was going to lose me when he told me. So can you imagine the look of absolute surprise when he just mustered up the courage to tell me and I told him instead?!)
A friend of my mother's had a son with CF and told my mother that I should run fast and far away from Kurt. She spoke of the endless hospitalizations, infections, and her son's daily struggles to breathe. She did not want to wish that upon anyone and in a sense she was trying to forewarn me about what I may see later on. Although I never forgot her words, I chose to stay in a relationship with Kurt.
Although Kurt no longer has CF lungs, his body is still affected by CF. This includes having to take enzymes with every meal, being infertile, and experiencing weight issues. With transplanted lungs, there are other precautions we have to take and some we learned the hard way: every cough, chill, fever, and shortness of breath means a trip to the local ER and possible hospitalization. Kurt also cannot complete any yard work due to mold spores.
During the first two years of our relationship (first four years after transplant), Kurt's lung function was in the high 90's. A two week hospitalization in April 2017, including one week in ICU, was the result of waiting two days to go to the hospital after he had chills and a fever. This dropped his lung function to 67%. The day before our wedding he told me his lung function dropped to 50%. Since then, it has dropped to 37%, 24%, and now about 17%.
Kurt is currently on 4-5L of continuous oxygen, 24/7 enteral feeding with occasional sweets as tolerated, and limited exercise with weights and walking. I assist with daily functions such as preparation of enteral bags, showering when he has the energy, and fulfilling any requests.
Last year, the pre-transplant pulmonologist told Kurt that he was not going to make it past December if he didn't change his habits, let alone qualify for another transplant. Thus began the long journey to even qualify to be listed for another transplant. In one year, Kurt was able to gain 18lbs to meet the minimum BMI to even be listed. After a series of setbacks with required esophageal manometry tests, hospitalizations in lieu of appointments, and postponement of further appointments due to Covid-19, Kurt was finally approved by the Cleveland Clinic transplant team to proceed forward on June 1st. It is now a waiting game with insurance to be officially listed.
Once Kurt is officially listed, his pulmonologist stated he is high on the list and may receive the call within weeks. While we both have worries about the success of the second transplant due to more complications than the first, we rejoice in the fact that his team would not have listed him if he wasn't a solid candidate.
Due to Covid-19 restrictions, when his family and I drop him off, we will be unable to see Kurt until several weeks after his transplant when he is finally discharged to stay in the Cleveland area. So in the meantime we are enjoying the little time we have before he gets "the call."
We pray and stay positive that Kurt will make it out of the ICU and have a smooth recovery. Sadly, his sister, Jenny, passed away two weeks after her second transplant. We are thankful that his only surviving sibling, Evan, is flourishing on the new Cystic Fibrosis Trikafta medication. Every breath and every step will be a celebration of life.
Our time together has been an absolutely amazing journey and I pray that our story is just beginning. In sickness and in health, I would do this all over again, but with taking extra precautions, of course. I am thankful I didn't listen to advice to run away because "God blessed the broken road that led me straight to you."
I loved you before I met you and I love you more each day, I will love you forever and always, until death do us part."
Thank you for taking the time to read his story and being part of Kurt's journey!
April 10th, 2017- On Easter Sunday, Kurt was driven to UPMC Hamot in Erie, PA. That evening he was transported via ambulance to Cleveland Clinic where he spent a week in the ICU and another week and a half on J8-2, the heart and lung transplant floor. Before this time, his lung function was in the high 90s. After this hospitalization, his lung function dropped to 67%.
April 27th, 2017- Nearly 2.5 weeks in the hospital after already spending one week in ICU
December 17th, 2017- After coming back from our honeymoon, Kurt was experiencing shortness of breath and had difficulties breathing. He spent a week at Cleveland Clinic. His lung function had dropped to about 50%.
February 28th, 2018- At UPMC Hamot on his way to be transported via ambulance to Cleveland Clinic.
March 3rd, 2018- On J8-2 heart and lung transplant floor at the Cleveland Clinic. Sadly, Kurt will be recovering alone due to COVID-19 visitor restrictions
August 2018- We purchased bicycles to build Kurt's lung function. Unfortunately, it was purchased too late as Kurt was unable to ride more than half a mile before being completely winded, short of breath, and couldn't breathe.
April 6th, 2019- ECMC transplant floor. Admitted for shortness of breath and difficulties breathing.
May 12th, 2019- Buffalo General Hospital
June 13th, 2020- Looking out at Terrapin Point in Niagara Falls, NY
June 13th, 2020- at Terrapin Point in Niagara Falls, NY. At this point, Kurt is continuously on 4-5L of oxygen and up to 8L when walking short distances and showering when he has the energy. Sadly, Kurt is unable to walk long distances or walk up stairs no matter how much oxygen he has.
In March, the Covid-19 pandemic halted the entire screening process. The virus which crippled the world created a national shelter-in-place order which kept Kurt indoors and away from everyone's germs. This mandated quarantine actually kept his condition stable and surprisingly healthy despite his low functioning lungs. After resuming the many required tests and hospital board case review, Kurt was finally approved to proceed forward with his second double lung transplant on June 1st, 2020. He will be officially listed on June 22nd.
Now starts the waiting game to receive "the call" and dealing with the financial burden. My daughter is currently the only wage earner and works multiple jobs to keep their bills paid. They've been told that their total out of pocket expenses can be around $75,000 to $100,000 depending on what their insurance pays.
God has always blessed our family, and having Kurt in our lives have been one of the biggest blessings, as he is the kindest, most generous and loving person I know! Samantha and Kurt will have a long road ahead of them together so I wanted to help them lessen their financial burden as much as possible with this and other fundraisers. Any amount donated is greatly appreciated!
Here is Samantha's story of their journey together:
"Kurt and I began our journey through an online dating website in May of 2015. We spoke for five weeks before finally meeting in person on June 26th. Within a week of chatting online and finding out his last name, I completed my own background check on him via Facebook. It didn't take long to figure out that he has Cystic Fibrosis and a double lung transplant.
I was angry and upset with God that he had this terminal illness. I already knew about CF from reading Lurlene McDaniel's book series as a teen. A quick Google search describes the life expectancy to be 37.5 years. I had found the perfect guy and he had to have a terminal illness.
Mind you, this entire time, Kurt did not know I knew his health history. When I met him, he was not coughing or exhibiting any symptoms so I forgot that he even had CF. In fact, it wasn't until early August when he was about to inform me about having a childhood illness that I blurted out that he had CF. The look on his face was priceless!
(Kurt waited until two months after we met and we exchanged "I Love You's" before he felt comfortable telling me about his CF. His past experiences often meant dates stopped talking to him shortly after finding out. He was afraid that he was going to lose me when he told me. So can you imagine the look of absolute surprise when he just mustered up the courage to tell me and I told him instead?!)
A friend of my mother's had a son with CF and told my mother that I should run fast and far away from Kurt. She spoke of the endless hospitalizations, infections, and her son's daily struggles to breathe. She did not want to wish that upon anyone and in a sense she was trying to forewarn me about what I may see later on. Although I never forgot her words, I chose to stay in a relationship with Kurt.
Although Kurt no longer has CF lungs, his body is still affected by CF. This includes having to take enzymes with every meal, being infertile, and experiencing weight issues. With transplanted lungs, there are other precautions we have to take and some we learned the hard way: every cough, chill, fever, and shortness of breath means a trip to the local ER and possible hospitalization. Kurt also cannot complete any yard work due to mold spores.
During the first two years of our relationship (first four years after transplant), Kurt's lung function was in the high 90's. A two week hospitalization in April 2017, including one week in ICU, was the result of waiting two days to go to the hospital after he had chills and a fever. This dropped his lung function to 67%. The day before our wedding he told me his lung function dropped to 50%. Since then, it has dropped to 37%, 24%, and now about 17%.
Kurt is currently on 4-5L of continuous oxygen, 24/7 enteral feeding with occasional sweets as tolerated, and limited exercise with weights and walking. I assist with daily functions such as preparation of enteral bags, showering when he has the energy, and fulfilling any requests.
Last year, the pre-transplant pulmonologist told Kurt that he was not going to make it past December if he didn't change his habits, let alone qualify for another transplant. Thus began the long journey to even qualify to be listed for another transplant. In one year, Kurt was able to gain 18lbs to meet the minimum BMI to even be listed. After a series of setbacks with required esophageal manometry tests, hospitalizations in lieu of appointments, and postponement of further appointments due to Covid-19, Kurt was finally approved by the Cleveland Clinic transplant team to proceed forward on June 1st. It is now a waiting game with insurance to be officially listed.
Once Kurt is officially listed, his pulmonologist stated he is high on the list and may receive the call within weeks. While we both have worries about the success of the second transplant due to more complications than the first, we rejoice in the fact that his team would not have listed him if he wasn't a solid candidate.
Due to Covid-19 restrictions, when his family and I drop him off, we will be unable to see Kurt until several weeks after his transplant when he is finally discharged to stay in the Cleveland area. So in the meantime we are enjoying the little time we have before he gets "the call."
We pray and stay positive that Kurt will make it out of the ICU and have a smooth recovery. Sadly, his sister, Jenny, passed away two weeks after her second transplant. We are thankful that his only surviving sibling, Evan, is flourishing on the new Cystic Fibrosis Trikafta medication. Every breath and every step will be a celebration of life.
Our time together has been an absolutely amazing journey and I pray that our story is just beginning. In sickness and in health, I would do this all over again, but with taking extra precautions, of course. I am thankful I didn't listen to advice to run away because "God blessed the broken road that led me straight to you."
I loved you before I met you and I love you more each day, I will love you forever and always, until death do us part."
Thank you for taking the time to read his story and being part of Kurt's journey!
April 10th, 2017- On Easter Sunday, Kurt was driven to UPMC Hamot in Erie, PA. That evening he was transported via ambulance to Cleveland Clinic where he spent a week in the ICU and another week and a half on J8-2, the heart and lung transplant floor. Before this time, his lung function was in the high 90s. After this hospitalization, his lung function dropped to 67%.April 27th, 2017- Nearly 2.5 weeks in the hospital after already spending one week in ICUDecember 17th, 2017- After coming back from our honeymoon, Kurt was experiencing shortness of breath and had difficulties breathing. He spent a week at Cleveland Clinic. His lung function had dropped to about 50%.February 28th, 2018- At UPMC Hamot on his way to be transported via ambulance to Cleveland Clinic.March 3rd, 2018- On J8-2 heart and lung transplant floor at the Cleveland Clinic. Sadly, Kurt will be recovering alone due to COVID-19 visitor restrictionsAugust 2018- We purchased bicycles to build Kurt's lung function. Unfortunately, it was purchased too late as Kurt was unable to ride more than half a mile before being completely winded, short of breath, and couldn't breathe.April 6th, 2019- ECMC transplant floor. Admitted for shortness of breath and difficulties breathing.May 12th, 2019- Buffalo General Hospital June 13th, 2020- Looking out at Terrapin Point in Niagara Falls, NYJune 13th, 2020- at Terrapin Point in Niagara Falls, NY. At this point, Kurt is continuously on 4-5L of oxygen and up to 8L when walking short distances and showering when he has the energy. Sadly, Kurt is unable to walk long distances or walk up stairs no matter how much oxygen he has.Co-organisers (3)
Elizabeth Springer
Organiser
Niagara Falls, NY
Samantha Josephine
Beneficiary
Colleen Springer
Co-organiser