Teenage HH has medical conditions so complicated that she and her mother had to move permanently across the country to Northern California so that a San Francisco Bay Area hospital could evaluate and eventually treat her. She has insurance for post-transplant temporary recovery lodging near the hospital but until her mother found Heartfelt Help Foundation, they had no one to help with finding a new home. HHF helped them find a local apartment and settle in for their new life. This is their story:
“When you think of a 14-year-old teenage girl, you’d generally think of their life as being simple, you’d think of them being a big kid still. Hanging out with friends, shopping, fun events, doing whatever they like- within reason. Unfortunately, this isn’t always the reality. Meet HH! She is a 14-year-old from [an east coast state], who loves hanging out with her friends, going new places, listening to music and playing games! HH was diagnosed with Hypoplastic Left Heart Syndrome prenatally. To attempt to prolong the life of her own heart, she has had multiple interventions ranging from heart caths and treatments to 3 open her surgeries. This eventually left her having heart failure and needing a heart transplant, plus with all things considered, potentially a liver transplant also. HH’s transplant case was much more complex than the majority due to having developed an excessive amount of antibodies. After multiple stints of treatment to try to eliminate the antibodies; and hopefully the mother cells that kept mass producing more antibodies, HH’s [home] hospital was out of options, thus spawning transplant evaluations in other places. Many hospitals didn’t feel comfortable enough with her case to even consider her a potential candidate for their programs. Vanderbilt of Tennessee was the first to accept her for an evaluation but after a 3-day trip for lab work and a meet and greet, she was denied there also due to her elevated amount of antibodies. HH’s cardiologist reached out to contacts at Lucile Packard Children’s Hospital – Stanford, and they felt optimistic enough to want to do an evaluation in person. Soon HH was on a plane to California. After thorough exams and trials of treatment options on her blood that had been drawn, Stanford was reassured the antibody treatment programs they had to offer would be beneficial and potentially give her a bigger pool to pull donor organs from as she wouldn’t be so sensitized from the antibody perspective! Then came the next hurdle, making the permanent move to California. Unfortunately, we were at a disadvantage, as the hospital couldn’t give us any resources to look into for housing since we weren’t current residents and HH wasn’t technically an established patient. Finding affordable housing from the other side of the US seemed nearly impossible with all the scams, and everyone thinking we were trying to scam since our area code was different. Luckily, after weeks of calls, emails and online searching, I was put in contact with Denise of the Heartfelt Help Foundation! The Heartfelt Help Foundation has gone above and beyond to help make everything even remotely possible for us! Because of Denise being persistent in wanting to help us find affordable housing, relatively close to where we needed to relocate to- we are lucky to have a wonderful landlord who has been nothing less than supportive, understanding and nothing short of a blessing! We have been able to move to California and focus on HH’s health instead of scrambling to put our new home together, as Denise, our new landlord Keith, and volunteers had filled the home with gently used furniture and all the basic essentials from cleaning supplies, to towels and food to start out with! Fast forward to transplant day, which came MUCH sooner than anticipated (originally estimated 2-3 years) and Heartfelt Help has helped us navigate everything that has come our way. Heartfelt Help has been the MOST knowledgeable resource I feel we could have possibly had. I have had superior help in dealing with our insurance company, making sure it is possible for HH to recover in a clean, safe environment since being discharged from the hospital. I have been informed on “what’s next” outside of HH’s own personal recovery journey. Without Denise and The Heartfelt Help Foundation, life in recent months would be- and would have been, easily, chaotic and much more stressful to our family, in an already extremely trying time. We are very grateful for everything, big and small. From simple things such as Denise being available to vent to if needed, to connecting us with our landlord for housing, to helping set up our home prior to arrival, down to making sure we had a safe, clean place to discharge from the hospital to, in the immediate vicinity of the hospital, as the upcoming 7 week recovery time is going to be full of appointments. I hope one day we are able to pay all that has been done to help make my daughter’s life-saving heart transplant, forward!”