So, I was asked a few days ago (by a family who is facing a medical crisis):
1) How are you able to be in Duke with your girls full-time?
The simple answer is that I've been blessed with a job/career that can cater to our current situation.
When I was going through the interview process shortly before taking my current job as a "worship leader" at Nags Head Church almost two years ago, I explained to the pastors (five of them) that something like our current situation at Duke may come up in the near future. I was actually thinking just about transplantation and not about a premature baby. The pastors agreed that the church would support us if this kind of situation arose.
Last summer, after we learned that Tricia was a candidate for a transplant and we began making plans to relocate to Durham, I sat down with our pastors again and shared what the plan was...at that time, we did not yet know that Tricia was pregnant. Our original expectation (pre-pregnancy) was that we would move to Durham in early September, be listed and activated in late September, and probably be transplanted and home by Christmas. I planned on working as much as possible while away (I do a lot just on my computer), and I began preparing the people that I lead in ministry at the church to carry on without me (which they've all done with excellence).
Of course, the expected four month stay has turned into almost six months and will not be completely over for at least another two months. I haven't accomplished nearly as much work as I had originally planned, especially in the past two months, but the church and pastors have been incredibly supportive and flexible. Although all of the details haven't been worked out, I'm sure I've used up all of my vacation and sabbatical days for the next 30 years... :)
The amazing thing is that, either partly because of what God is doing in our lives, or maybe because I'm more of a Jonah than a David, the church has been experiencing some incredible things over the past few months that can truly only be attributed to God's hand of blessing. The church is growing and flourishing and being blessed in so many amazing ways...we truly miss being home and being a part of what's going on at NHC.
2) How are your medical bills being taken care of?
The simple answer is that we have no idea other than that God continues to bless us in extraordinary ways.
Tricia's yearly medical bill over the past few years is astronomical. She has spent an average of about 20 days per year in the hospital over the past three + years. We have a very high deductible, which we have met before the end of January every year. Our biggest out-of-pocket expense has been her medications and equipment.
The total cost of an average double lung transplant at Duke is somewhere in the ballpark of $300,000.
I honestly have no clue what is going on with Gwyneth's medical bills, but quite honestly, that's the least of our concerns at the moment, and we know that God will take care of us.
We have incredible health insurance (you get what you pay for)...it would take an entire blog post to share the miracle of how we we have been blessed with good, secure insurance. One of the biggest reasons that many people are turned away from being admitted into a transplant center is the inability to pay for the medical bills due to lack of insurance. Our insurance is paying for nearly every penny of Tricia's transplant, as well as several thousand dollars of our housing costs during the transplant process.
Through God's grace, my parents had the wisdom to set up a Trust Fund for Tricia about two years ago to help with her medical bills. Hundreds of family, friends and total strangers have donated to help us, for which we are incredibly grateful. This trust fund can help to cover the cost of meds, equipment, travel expenses, housing, and any other expenses related to Tricia's medical care. The trust fund does NOT cover any of Gwyneth's medical expenses or any personal finances. (If anyone is seriously interested in finding out more info about the legalities of starting a trust fund, you can email me your questions)
About a year ago, after more than one attempt, Tricia was finally accepted for Social Security Disability Isurance. It's not a pot of gold by any means, but it does help.
Also, both Tricia and Gwyneth are now receiving Medicaid benefits, which is very helpful at the drug store, especially.
I'm sure that there are even more ways to secure financial help for medical needs. The key is contacting and befriending the people who know. One of the best places to start is with a medical social worker.
I have no idea if any of this info will be helpful...I hope it is. You can ask me more questions about this stuff, but I'm not sure that I can give you much more info.