Hey All! It’s nearly 5 months since Jake had his life saving heart transplant and almost a whole year since we moved to Chicago! Time is a complete blur. Jake is doing well, we’ve had a couple health complications as a result of the transplant but, everyone said the first year post transplant is a bit of a rollercoaster and luckily ours has been fairly mild compared to what we’ve endured in the past. I wanted to share an update of where we stand right now and our plans for the future.
Jake is healing well and definitely getting much stronger. Open heart surgery for anyone can knock you down for awhile; going into to open heart surgery on an infected mechanical heart pump, with a brain injury and a severe disability is a whole ‘nother ballgame. The transplant sent Jake back about a full year’s worth of physical therapy progress: it sucked, but we were prepared for it. He currently is attending outpatient therapy 3-4 times per week at the Shirley Ryan Ability Lab and has been making great strides…literally. Jake has moved from a platform walker to a standard walker and not only has improved the distance he can walk but also his endurance. He still cannot walk independently and uses his wheelchair a vast majority of the time, but from what I have seen, it wont always be like that. From a health standpoint Jake’s new heart has taken to his body better than expected. He has had one moderate bought with rejection and a slight stiffening in the relaxing of the new heart but he is healing in both areas at this time. His only major complaint right now is the steroids he is required to take as part of the first year of anti rejection medication regimen. They have made him swollen, moody, and unable to sleep; luckily this too will pass and he should be off of the steroids sometime between December-January. Eden and I have been mending too through this whole endeavor. Eden had two whole months without mom and dad at home and there is still some remanent separation anxiety from that. I, for the first time since early 2015, am able to sleep more than 4 hours a night. Between every 8 hour IVs, 4 times a day medications, a small baby and a husband on life support I never rested before Jake’s transplant, now I can sleep, not a lot but I can sleep without paralyzing fear. All in all we are all on the mend.
One year ago, we discovered that we would not be getting a transplant anytime soon in Missouri, we had been turned down from every transplant program we applied to and we got news that Jake was battling two pretty severe infections. We decided to take a BIG risk and decided to take a doctor at his word at the University of Chicago and we packed up and moved from Missouri to Chicago with no guarantee that he would actually be accepted for transplant. It was one of the best decisions we made in our lives and luckily it has worked out for us. We now have to make that big uprooting decision again. Jake’s transplant team here in Chicago requires that we stay one year post transplant to receive medical care, that takes us to May 2018; we then have the option to transfer transplant centers and move out of the Chicago area. Since the transplant has gone pretty well and Jake is staying healthy we have decided that we will be moving at the end of May. We are moving primarily for monetary reasons, Chicago is extremely expensive and frankly we have never been able to afford living here but, this city gave us an opportunity no other city was willing to give us. While grateful, we cant make it here much longer, so we will be moving again, this time to Raleigh, NC and transferring medical care to Duke. My dad last year got a job in Raleigh and bought a house with a basement apartment if we ever needed a place to live; with an uncertain future a free place to live with quality medical care is the best decision for our family. While we wont be moving until Spring, we will most likely begin working on plans to move within the next couple months because establishing a new transplant team will take many, many months. We are excited to have some stability for awhile while we transition out of medical uncertainty and hospital life.
Now to the most nagging of our challenges in life: money. There is no nice way to say it, we are poor, debt ridden and drowning financially. If our finances were a year it would be 1929. As of right now, we will run out of money around Christmas, like I said Chicago is expensive and transplants are not cheap. So, here’s the awkward point where I say I need your help, I need your help to get my family through the next 7 months. Due Jake’s need for Medicaid and his inability to work we have an income cap of $1,500 per month and right now Jake’s disability brings in $795. With these restrictions on income and the amount of care Jake and Eden need at this time I cannot work, not because I don’t want to, mainly because I would have to make over $150,000 a year to even out the medical and caregiving costs that I have right now under income caps. So here is where we need help.
Rent in Chicago through May 2018: $10,000 (We have to pay in full by January 1st since we do not credit qualify)
Transplant Medication for the next 7 months: $1,000
Therapy and Doctor’s Copays: $4,000
Utilities for through May 2018: $2,000
Transportation to Therapy & Hospital Appointments: $1,500
Groceries Supplement for 7 months: $1,500 (we only receive $400 per month in foodstamps)
Medical/ Loan Payment Plan: $1,500
Moving costs in May: $1,000
Remodel of inaccessible bathroom in NC: $6,000 (needs to be done before we move)
Current Due Hospital Bills: $44,600 (we haven’t even gotten transplant or rehab bills yet)
While we have been BLOWN AWAY by fundraising efforts in the past I am not going to even to try to fundraise that amount, hospital bills have been piling up for over two years and they haven’t killed us yet. I do need to raise $40,000 by next summer in order to get us to a place were I can start repairing my credit so that I can begin looking for a job (I’ve only worked in finance and needed a clean-ish credit report in order to be hired for every position I’ve held). For now though, I need $10,000 to get my rent, medications & utilities paid to ensure that we can stay in Chicago to get Jake the medical care he needs in Chicago until we can move and I need to raise it before Christmas.
So, please pray for us as we embark on this next part of our journey. Pray that Jake’s rejection remains at bay, pray that Eden’s terrible twos are over soon (haha), pray that we don’t lose our housing and if you can give, please give.
We have a few ways you can donate:
Mail: 1258 S Blue Island Ave Unit 101, Chicago, IL 60608
Thank you for loving my family and helping us through every trial.
We love you all.