My sister needs a new heart

Hello all. My name is Bonnie and I am fundraising for my sister Kathy. Kathy was born with a congenital heart defect knows as Tricuspid Atresia and Pulmonic Atresia which is basically the same as only having a half of a heart. She was diagnosed at 9 months old when she turned blue and passed out while learning to crawl. Doctors performed her first open heart surgery in 1971 at Shands in Gainesville. Doctors were not expecting that she would live to make the age of five, but she did. Her next open heart surgery was performed at the age of nine at All Childrens Hospital in St Petersburg. Again doctors did not have a positive diagnosis that she would make it to her teen years however she continued to beat the odds.

 

Kathy’s young life was never as easy or normal as the other kids her age. She could not attend recess and was not allowed to take gym classes. She could not play with other kids because she would easily run out of breath and was very susceptible to colds and flu. She was able to attend school however there was always a fear that her heart would just give out.

 

Around the age of 17 it was determined she would need a central shunt to help her continue to thrive and so she was sent to the University of Alabama Birmingham Childrens hospital to have that open heart surgery. While on the table she had an aortic aneurysm and actually died on the table however they were able to bring her back! After a few short days in the hospital she was able to return home but still with limited activity.

 

Within a couple of years Kathy was wearing out very quickly with barely any activity. A call was placed to her cardiologists and the only thing they could suggest was trying to contact Boston Childrens Hospital and see if they could perform what was known as the Fontan procedure, which was a common recirculating type of OHS done for single ventricle patients. In August of 1991 she underwent the procedure and it was a complete success!!! Although she was not cured by a long shot she now had a quality of life she had never before experienced! For the next nearly 30 years Kathy lived a full life! She was able to work as a 911 operator/911 dispatcher for several years, assist in running the family air conditioning business, workout at the gym, go out with friends, travel and live a mostly normal life!

 

During the summer of 2017 Kathy moved from her hometown of Lakeland, FL to be with her long time boyfriend in Tennessee. Once she moved she continued her work as a 911 operator/police dispatcher at the Cookeville Police Dept. After a couple of years she began feeling the onset of the old symptoms…tired, running out of energy, excessive sleeping, running short of breath and not being able to do the things she had always done with ease.

After meeting with her long time cardiologists it was determined that she was going into heart failure and they would need to proceed with testing to see if she was a candidate for a heart transplant. After a few months of multiple invasive and non invasive tests it was determined that she was a candidate for a new heart as her old Fontan was now failing. On June 3, 2021 Kathy was listed as a status four on the UNOS transplant list.

 

One of the requirements to be listed with Shands was having to be within four hours of the listing hospital. Also it was determined that she had a very high antibody count which while great for keeping her healthy is detrimental for a new organ as it will reject it immediately. Kathy moved from TN to live with her other sister in Jacksonville since that is only an hour and a half from Gainesville. Her boyfriend has since been trying to sell the home in TN so he can relocate back to her hometown of Lakeland with her once she is able to leave the hospital.

 

Her doctors advised her in December 2020 that she would not be returning to work. The stress of the job was putting too much work on her heart and causing arrhythmias and dangerous rhythms. Although she didn’t feel stressed by her job her body and heart were reacting very negatively to it. She was advised to rest and keep herself quiet and not to get her heart rate elevated or add any stress to her body. (So much easier said then done).

Although her job was amazing to her and took great care of her the company where she had long and short term disability denied both her claims due to pre existing conditions. She filed with social security for disability benefits on February 21, 2021 and is STILL waiting for an answer. While she was living with her sister in Jacksonville she sold off a lot her police challenge coins for money and also started dog sitting and house sitting for people to earn money to pay her bills. All of that brings us to the reason I am posting this fundraiser for her.

 

This Tuesday, May 24, 2022 Kathy will be admitted to live in Shands until she receives her new heart and new lease on life. No one knows how long this will take. It could be two months or it could be a year. She still has her COBRA insurance to pay and her monthly bills. She has no income anymore at this point. Her savings was depleted paying her COBRA payments. In no way is she looking to make a windfall but simply the money she is going to need to pay her bills while she is down. We were hopeful that she would be living off her social security however that has still not come

thru and we aren’t able to get any answers as to the status of her claim.

 

I know this has been a long read and I thank you for taking the time to go thru it all. If you feel compelled to donate please know that it will be greatly appreciated!!!! Kathy posts updates on her status and condition on FB so if you don’t follow her please feel free to!!!!

 

Thank you everyone!!!!!!!