I’m currently writing this post to fill people in on what we’ve been up to since Jake was discharged from the hospital on October 17th, 2015 but primarily to inform people on what our lives are like now. I often get a multitude of questions on a daily basis about what exactly do we do all day and where we are at in the process of Jake’s treatment. So hopefully you can get all of those questions answered today and if not it doesn’t bother me if you have more questions to ask. So for now, here we go:
Then: When we left rehab Jake was able to walk about 15 to 25 feet with a walker with a two person contact assist. He was still needing to be fed almost all his meals because he didn’t have control of his hands. He hadn’t used a restroom more than once in the time at rehab and when he did it took about three people to help him. He was speaking but rarely in full sentences and I had to translate most of what he said.
Now: Jake is able to walk around 350+ feet with the walker or using just my help to keep his balance. He feeds himself every single meal and in the mornings he has started to even get his breakfast ready himself. He decided about a week into being home that he was going to use the real bathroom and has not gone back since, even when he was really sick, he is able to transfer himself and is getting to the point where he requires no help at all which is a great feat in independence. Now he is able to talk on the phone even when strangers call, he manages to make it through conversations without ever having to repeat himself.
The Future: In May of 2016 therapy visits ran out and Medicaid in Missouri will not pay for any therapy visits of any kind for Jake. We have been doing speech, occupational, and physical therapy at home and have been trying to find alternative ways to pay for more therapy. We hope that after a transplant we will be able to get Jake the in patient rehab he needs and find a way of paying out of pocket for the therapy Jake will need in years to come.
Then: At Jake’s worst his heart was pumping at an ejection fraction of about 10% (normal is about 60%). Both sides of his heart failed and this is the primary reason he was so close to death. Upon leaving the hospital his right ventricle was working hard enough to sustain itself for a few years with the help of medications. His left side with the help of his heart pump had recovered to about 25% ejection fraction.
Now: We had an echo done in March of 2016 and Jake’s ejection fraction had risen to about 47%. That means the left ventricle is doing a great job of recovering and aiding the pump in distributing blood throughout his body. His right ventricle however looked about the same, hanging on but still taking on a brunt of the workload while weakened by the myocarditis. Due to the damage that still exists to his heart, we were told that he would need a heart transplant in December of 2015; however due to the severity of his illness he was not able to be listed until April 2016.
The Future: We hope that Jake will be able to be transplanted soon and be able to get at least 15 to 20 years out of his new heart or maybe he’ll be one of those crazy cases that survives 30 + years on a transplanted heart!
Then: When Jake first woke up from his 6 week coma we had no idea that he had a brain injury but as time progressed and he had no control over his body: more and more was revealed to us. CT Scans were unable to detect the damage that occurred and we are unable to get more information until after Jake is transplanted because while he has the LVAD he cannot have an MRI. The brain damage presents of the symptoms of a hypoxic brain injury: he lost all motor control, gross & fine motor skills were gone, he lost he ability to speak, control any extremities, had tremors and ataxic shaking throughout his body, and lastly he lost control of his balance completely. A hypoxic brain injury occurs when there is a partial interruption of oxygen to a specific part of the brain. This most likely occurred during the 50+ times Jake had to be shocked and his heart restarted and most likely effected his cerebral region of the brain. However, he was still cognitively intact.
Now: Most of Jake’s ataxic shaking is gone, he still has some slight residual shaking that he takes medication to control. He is able to have longer conversations and has regained some control of his tongue, so pronouncing words is getting easier. He still has a slur and different quality to his voice but therapists have said it would take years to regain his speech. His balance is increasing he could barely sit on all fours when he left rehab and now he can crawl, stand on his knees and has just begun to do push ups. Walking is still very difficult, he says he feels like he is walking on a boat in rough waters. He has regained the ability to write and read it just takes much longer than prior to the illness. But overall his recovery is more than what we could have envisioned.
The Future: Post transplant we will be able to get an MRI of Jake’s brain to see exactly what occurred and what was affected. Jake will be able to receive much more intensive physical therapy treatments, such as swimming, hydro therapy, light gait, electric stimulation to his muscles and hopefully some new technologies. We are hopeful that post transplant Jake will be able to receive some non invasive brain treatments as well, one primarily being CN-NIMN to regain control of his balance. We hope that Jake one day will be able to be able to get around on his own and hopefully recover from his brain injury and walk independently.
Then: When Jake got sick he worked for a fantastic grant program at the University of Missouri, he was actually one week away from being classified a a full time-benefits holding employee of the university system. I was working full time at an online mortgage company, Veterans United. We both loved our jobs. When Jake was transferred to St Louis I was put on a leave of absence from work and when Jake was in the hospital his paperwork for full time employment was stalled. Our employers were FANTASTIC during this all: they visited, checked in, brought food, donated money, sent cards, etc. However, when we realized that Jake would not be able to work he was unable to written into the grant at his work so, he lost his position. I was hopeful for awhile that I would be able to return to work but after having Eden and realizing Jake’s needs, I knew it would not be possible so my employer had to terminate my position.
Now: My mom was gracious to continue to live with us and help me care for Eden. Jake and I at this time cannot work, most of our days are filled with doctors appointments, working out, therapy, caring for Eden and calling insurance companies and transplant hospitals. I can honestly say I have never worked more in my life, I am lucky if I can get a shower in every week and more than four hours of sleep in a night. And Jake, Jake works out harder and longer than anyone I know, getting better and getting stronger is his full time job. Unfortunately, insurance has repeatedly refused to pay for in home care for Jake as we would need it. They have told us that we instead could opt for a nursing home option, which would mean Jake would have to live alone at a facility in St Louis which we did not want at all.
The Future: The ultimate goal is for me to be able to stay at home with Jake and Eden as long as possible. Right now I can’t afford to work, what I would pay for a full time in home nurse and a day care would be about three times more than what I could make any how. I want to stay home and be able to give Jake the proper rehab he needs to get stronger so that within a year or two he is able to return to work. If he doesn’t continue to to have the ability to be pushed physically then, he will only physically decline and never be able to return. I do realize that I will most likely have to work from home very soon in order to support my family.
Then: When we got home from the hospital I was nine months pregnant. Eden was due on October 27th, so we had about a week to settle in and then I was induced the evening of the 28th. Eden was born around 8am on the 29th of October. 6lbs 8oz, 20.5 inches long.
Now: Eden is now eight months old. She is hyper to say the least. She is standing, crawling, trying to talk and getting into everything. She is a hot head but oh so sweet at the same time. She loves dancing and laughing and thinks that her family is hilarious. Eden is a ray of sunlight in what can be very mundane repetitive days.
The Future: Eden has been healthy, on track and happy for the most part since the day she was born. We hope that Eden will remain to be all these things and more as she grows older. I hope that both Jake and I both see her grow up and that all this sickness and being in and out of hospital doesn’t interrupt her being a child and seeing wonder in this world.
Then: When we left the hospital Jake’s heart showed promise of recovery and we hoped that he would be able to just get the pump (LVAD) removed from his body and continue with his own heart. In December we found out this would not be the case, that Jake would only be getting the pump out if a new donated heart was going in. He was far to weak and sick at that time in December to be listed for a heart transplant.
Now: Jake was officially listed for transplant at the end of April 2016. He is currently listed at Barnes Jewish Hospital in St Louis, Missouri as status 1B, second priority for a heart. He is about 25th down on the list in his blood type (A) and this current center transplants about 30-35 people total per year in all blood types. So at this current rate it will be closer to 2018 when Jake is transplanted if we stay here in Missouri. We have been speaking to other transplant centers around the country in attempts to see if they would be willing to do his heart transplant: since they have much shorter wait times. We will be taking trips to the University of Maryland transplant center in Baltimore in the upcoming weeks as well as the Baylor Medical Center in Dallas in hopes to convince them to take on Jake as a patient. However, they have been hesitient because of Jake’s current neurological issues.
The Future: We are hoping that one of the two centers we will visit this summer will take Jake as a patient and complete his heart transplant within the calendar year. Jake will then adjust to living life as a transplant patient. He will start on anti-rejection medications and hopefully his new heart will take to his body and beat as his own. Post transplant we will be able to start intensive therapy for his brain injury, unfortunately none of those therapies can be performed prior to a heart transplant. We hope that the transplant will not only be a start to Jake’s mobility and independence but also the start to a second chance at life.
Then: Jake and I worked 40-55 hours a week each leading up to his sickness. We had great jobs, we saved and were paying down our student loans, allocating $1,000 bucks a month to principal on our loans and about the same towards our savings account. We had been very poor during college and saving is easy when you make more money than you ever thought you would. I was able to be paid until early January due to maternity leave, paid leave, vacation time and the overwhelming generosity of my employer. After he got sick we exhausted our savings and gofundme, paying thousands and thousands of dollars for adaptations to our home and equipment for Jake and not to mention unending hospital bills.
Now: Ugh now this is rough if I am going to be honest. Jake is fully disabled and through social security we receive $763 per month: that is our total income. We are able to receive WIC and food stamps in addition to that. Our rent runs $750 per month, utilities are about $250. I have to pay out of pocket for my COBRA insurance which runs about $500 per month. Both Jake and Eden are on government insurance that I do not qualify for at this time. I put Jake and my student loans into forbearance for medical hardship but they are about due and payments will start again (we have around $110,000 in student loan debt now that interested has been compounding). It will take a couple years for his loans to be forgiven (for disability) and we have to make payments in the meantime. The hospital Jake was transferred to when he was dying does not have a contract with Jake’s primary insurance plan and for that reason most of Jake’s hospital bills were not covered. We have been able to get the surgeries covered but things like physicians, labs, tests, x-rays, CTs, medications, etc were not covered and even with appeals to the insurance company will not be covered and I have been attempting to settle then, right now we owe close to $12,000 to Washington University Physicians and BJC Healthcare. Jake insurance company would also not pay for his life flight because it was not a part of the care plan :the bill was for $55,000. The insurance company after a year of fighting has decided to pay half of what is due to the life flight company and they are collecting the rest from us about $22,000. Neither one of Jakes insurances will cover the dressing supplies that he needs for his LVAD so I pay out of pocket for those every month which is about $100 and I pay around the same amount for medications per month as well. We have also had to front the cost for all of Jake’s medical equipment like his hospital bed, mattress, lift chair etc. As you can tell we are running out of money quick and are flying blind when it comes to money at this point. We aren’t worried, money is really the least of our worries but, unfortunately it is necessary. We have been blessed with the generosity of others through garage sales and donations over the past year.
The Future: We are attempting to get transferred to a different transplant center so that we can move in with family and not have to worry about as many bills and focus on either getting out of debt or possibly look into bankruptcy which is usually the outcome for people who experience medical tragedies like us. We aren’t worried, God is in control and we fortunately have family that will try to help us as much as they can. We will be flying to Maryland as well as Texas in the next month and paying out of pocket for evaluations for transplant (as Jake’s insurance will not cover it) which will run close to a few thousand for each trip. We find that it will be worth it if it can get him a transplant sooner and allow us to move in with our family. After transplant we will assume the financial burden of anti-rejection medication that insurance will only cover for three years and then we will take on the five to ten thousand a month that they cost. We have a gofundme -> https://www.gofundme.com/jacobgonzales if you feel compelled at all to give. We have been provided for thus far and hope this can be the case in the future, we are not afraid.
While this all might sound overwhelming and hard there are good moments. We joke, we laugh, we see progress and we serve one another. Most days we don’t worry about what we are missing out on or what we can’t do, most days we enjoy, enjoy that we were given another day: a day more than we should have ever had. The future is scary, the prognosis of a heart transplant isn’t always fun to think about, but for now in the present we are here. We are all here, and that we can be thankful for.