Hey Y’all! I’d like to share our whole story of the past year and a half. It’s a little wild and a little surreal. It’s uplifting and heartbreaking. And quite honestly the worst roller coaster ride we’ve ever been on.....
Joel and I were acquaintances in high school, had some classes together. 30 years later (2016), reconnected through Facebook. I was going back and forth to Scotland and he asked me to bring him back a “skirt” (kilt) and I told him I would, if he’d actually wear it! We met for the first time, 3 weeks later, for me to give him the kilt, and we’ve been together since.
The heart attacks started in March of 2017. He had one each in March, April, and May, and that’s when I really learned how bad Joel’s heart problems were. He’d had previous attacks, but Joel never really let on that things could be serious. He continued to work as a commercial electrician. In May (2017), his Cardiac Doctors at St Thomas Hospital in Nashville finally told him that there was nothing else they could do for him and referred him to their Heart Transplant specialists. Joel was only 49 years old. Then Joel’s employer decided that they had to terminate his employment and thusly, lost his medical insurance.
In June of 2017, we decided to elope one weekend! I’m NOT going to let him go through this alone! It turns out that my insurance with my employer has a transplant program! It required us to transfer all of Joel’s medical care to what UHC considers to be a Center of Excellence and here in Nashville, it is Vanderbilt! One of the top transplant centers in the US with a very successful heart program. And in September Joel started testing. It had been a rough summer. (We moved to the country, 2 hours from Nashville, for peace of mind!)
At Vandy, in order to be admitted to their transplant program, we went through 3 days of meetings and actual medical testing. I and Joel’s parents, Jim Ed and Brenda Martin and his cousin, Michelle Martin, had to meet with social workers to show that he had support in place, that he had reliable transportation to make all appointments, that we could afford housing to be near hospital after surgeries, etc. Joel was tested head to toe to try to ensure that there were no other pressing issues with his body. It was pretty rough. Then we waited while the Transplant Team decided if Joel was eligible for their program.
In October, Joel had to have an emergency appendectomy where the surgeons found a rare form of appendicil cancer. This turned out to be a blessing in disguise! It’s usually never found in time! He also had kidney stones. Long recovery. Joel kept getting weaker. Between moving and now this, it really took its toll.
At the beginning of November, I came in one day to find Joel just really upset and hurting. He told me that he could feel himself dying. Not 5 minutes later, a nurse from Vanderbilt called, out of the blue, and after talking to Joel, told me to bring him in for admittance. On November 6th, he was implanted with an electric heart pump. He wasn’t strong enough to wait for a new heart.
The LVAD (left ventricular assist device) was really hard. Joel had a pump attached to the bottom of his heart, with an electrical line that came through his stomach, and he was attached to 2 VCR tape sized batteries, or plugged into wall power at ALL TIMES, day and night. We had extra batteries with us, always charged, everywhere we went. We lived close to our new local community hospital, where we could go to stay charged up if we lost electrical power. He had no pulse and no heart beat! I had to change his electrical line bandage every other day because an infection would kill him. The first month after he left the hospital, we had to stay locally, so we spent Christmas away from home. Joel got used to his new equipment, but it was always scary because there was never any room for error.
The LVAD bridged him well, and Joel started to get stronger. We were in our own home by January again. He continued to improve. He was listed at the top of the heart transplant list for our region on March 1st and got THE CALL on March 29th!!! His surgery took place on March 30th. Good Friday and Easter weekend will forever have a new meaning for us!!!! The surgery was successful!! The new heart is doing a GREAT!!! He spent 35 days in the hospital, he developed an infection, so 3 weeks after his surgery, they had to reopen his chest to clean things out and have his sternum rewired. He had to go through massive treatments with antibiotics and steroids and harsh anti-rejection meds. On May 5, he finally got to be discharged! (On the way home, my Honda Accord, with 55k miles on it, blew its engine and died, because the Honda guys forgot to refill fluids at the last service check in April. Another almost 4K out of my pocket.)
Since leaving the hospital, Joel has had good days and bad days. He’s had 3 other hospital admissions. When he’s had good days, he gets outside to work around our new home. On bad days, he doesn’t get out of bed. The doctors all say the first year out from transplant is hard, as the new medications are hard on the body. Because of all the massive steroids, Joel is now diabetic, for example. He has blood work done every week and heart biopsies every month to check for rejection.
And now, this brings us to right now. On Friday, August 10th)I took Joel to our community hospital for his blood work. Within an hour, he had been loaded into an ambulance and rushed back up to Vanderbilt. His white blood cell count had bottomed out. His first few days here were ok, but the doctors from several departments were stumped as to what was going on. On Tuesday night, as Joel fell asleep, he’d start coughing and spitting up clear fluid. All night, for 3 nights. Can’t rest in the hospital anyway. Thursday night, something happened, still unsure what, but he suddenly took a turn for the worst and is now in the Cardiac ICU.
Joel has been on a ventilator and highly sedated since 5am Friday morning (Aug 17th). He’s had test after test and still NO answers. The new heart seems to be in good condition, but his lungs are in bad shape, thus the sedation. He seems to get a little worse every day. And now his doctors are unsure of what will happen. As Im listening to them round this morning, I am just more worried about whether or not Joel has a future.
I really didn’t want to have to come here, but reality is setting in and things aren’t going as planned and we’re going to need all the help we can get. I have been unable to go to work very much in the past year. The company I work for, Delta Airlines, has been gracious enough to work with me as far as all my absences and am currently working on vacation donations to help with my required annual flying hours. We have gone through basically all of our savings. Joel gets Disability, but it’s not enough to cover our bills. Thankfully, I was able to pay off our home, so we’ll be okay there.
I foresee a rocky road before us. I’m still unable to get back to any kind of a normal working schedule. Financially it’s starting to get scary, and I’ve got to keep up those insurance premiums, plus we’ll start all over with insurance deductibles in January, and those are quite high. Not to mention how expensive his medications are! I am looking at my own health problems that are going to have to be attended to as doctors are telling me I can’t continue to put off.
Once we can get into a normal rhythm again, and I can go back to work full-time, we’ll be more than ok. But the next few months might be a little hard.
So, if you feel you can help out, we would gratefully accept anything. Thank you very much for reading through all this! God has taken really good care of Joel and us through this!!!