Help Jonathan RECOVER from heart transplant

What a whirlwind! We never expected that an heart would become available so soon!! There’s a long recovery ahead for Jonathan and any help is appreciated. We’d never be able to get this far without the love and generous donations from family and friends. Thank you, thank you, thank you!! 

Asking for help is hard and not something I am used to. My son-in-law (he and Emily aren't married but I consider him my son-in-law), Jonathan David, was born on May 19th, 1993. He was born blue and seemed to have some issues. His mom, Angela, was not aware of anything being wrong as nothing abnormal showed up in all the tests done while she was pregnant with him. He had a neonatal nurse who had a child with a heart problem, and she's the one who convinced the doctors to look further. He was born with a univentricular heart. (A single ventricle or univentricular heart is a broad term covering various cardiac structural abnormalities in which one ventricle is severely underdeveloped, or a ventricular septal wall did not form.)

- At two weeks old, he had his first procedure to remove his appendix, untwist his bowels, and otherwise straighten out and reattach the internal organs to his abdominal wall.

- At two years old, they began his Fontan procedure. (Wikipedia has a great explanation of this procedure and really helped me wrap my brain around exactly what this is. Click here to read about it. Fontan Procedure.) They basically had to plumb him up differently than a normal person so that his heart could get oxygenated blood to his organs. This procedure is done in three stages today, but for him, it was done in two stages. Jonathan lived with his chest plate open under the skin from the age of two to four. I can only imagine the fear his mom had to deal with during that time.

- At four years old, they finished his procedure. He was a “normal” kid who wanted to do all the stuff kids do. His mom tried to monitor his activities, but I think he did things he wasn’t supposed to do anyway when out of her presence! He wasn’t allowed to play football, but he did ROTC in high school with a passion for our military and law enforcement. His dream of entering the military could never be possible with his health condition.

- From the age of four until now, he’s had hernia surgeries, ablation procedures, stents installed, and cardioversion performed on him at different times. He’s no stranger to a hospital, to say the least.

Due to his health restrictions and lifelong medication needs ($1200 per month), he has been on disability since the age of 18. He gets a whopping $750 per month on Social Security. He had gotten a job (because almost any job pays more than $750 per month) working as a mechanic (another passion of his), but due to his condition worsening, it was not just dangerous for him, but dangerous for his employer and coworkers as well to keep working there. He had to give that job up in February of this year. Since February, he has had quite a few hospital stays to try and stabilize his heart function. He’s limited to 50 ounces of liquid per day and must take diuretics to help keep the fluid off his lungs and heart. He is, essentially, in congestive heart failure right now.

The life expectancy of someone with the Fontan procedure is 30 years old. Jonathan is now 31. In March, we went to the Children’s Hospital in Boston to meet with the transplant team. (Adults can go to the Children’s Hospital, I didn’t know either.) The team in Boston wanted to do a heart and a liver transplant. Due to the complexity of the procedure and not having had done this on anyone Jonathan’s age, they declined him for the heart transplant. He's patient zero pretty much. They have no statistics on life expectancy because he’s one of the oldest they’ve seen with this condition thus far.

Jonathan and Emily went to The Mayo Clinic in Minnesota in October. He had to have all the same tests as he had in Boston. They are more skilled in these procedures involving the heart. They determined that he is a candidate for a heart transplant, and they do not feel the liver needs to be replaced.

To have the procedure, he and Emily must pick up and move to Minnesota and fast! You must be within 20 minutes of the hospital with your caregiver present before they put you on the actual list to receive an organ.

Jonathan’s first procedure is scheduled for January 8th, where they will remove some collateral blood vessels from his lungs to better oxygenate his blood in preparation for the transplant. He will remain in the hospital until a heart becomes available.

Moving across the country is hard when you are physically healthy. It’s a lot harder when you must do it in a short time and hadn’t planned on doing so. They can’t really pack up their belongings to take with them as there will be only Emily to unload it all once there. They will need to rent a furnished place to live while there. While Jonathan is in the hospital, Emily can work and has already started applying for jobs in Minnesota. Once he has the procedure and is released, she will be his primary caregiver. They need to stay in MN for 4-6 months after his procedure before they can entertain moving back home. We are researching what sort of options for assistance are available in Minnesota, but we are short on time. Anything you can do to help is appreciated so very much.