I had my one-month follow up from this post where the doctor gave me a month to gain significant weight or be listed. If you tuned in last week, you know we already bumped things up and were moving forward with being listed and getting a feeding tube tomorrow (Friday) morning.
I maintained stable pulmonary function from the last two visits, so that is good that I’m not declining from these already poor numbers. This is in alignment with wanting to be just sick enough to be listed but healthy enough to weather the storm that is a double lung transplant.
I had a couple more items left to complete my lung allocation score (LAS) for listing, signed consent, got two additional vaccines, and endured two attempts at an arterial blood gas (ABG) draw to determine my CO2 levels. We left for another appointment and when we got in the car again, we had an email that rocked:
You are officially active on the transplant list and your LAS is 38.859!!
With that score and the low number of people listed for lungs with my blood type at TGH, I stand a good chance of a short wait for local organs if there is a good match with a donor. Based on info we have from others we’ve met on Facebook who were recently transplanted at TGH, we expect the wait to be anywhere from days to 2-3 months and be immediately whisked into chaos of the fourth magnitude.
That’s the good news, but we’re struggling
This is a one-time ask. I won’t ask in another post, but the form will be up after posts and the sidebar with a link to here. We aren’t going to focus on money. We’ll let our friends, family, and God do what they do and think is best.
We are hesitant to open up this donation campaign after we received hundreds of peoples’ generous gifts in 2016 for the second adoption, but were encouraged to do so by family who is also willing to assist if the need arises when our funds have been depleted.
Here’s the ask: we are looking to ensure I don’t have any pressure to push myself beyond medical recommendations (because Nana knows I will) with a financial goal of $20,000. Our own transplant fund goal was $36,000 but we think looking at where we are now and how fast transplants happen, with my shop, contracts, and hosting revenue continuing, we can reach that same peace of mind with nearly half that. Thanks for even reading this far.
Here’s the why
Most everyone in the WordPress community knows I kick butt and take names when it comes to putting in the time it takes to provide for our family. I’ve been running our business for over 8 years now and we’re living the dream… but things have always been tight since we started a family in 2012. We’ve had ups and downs but it’s always just what we needed, provided just in time before disaster. Drain savings, pay it all back, build up a little margin, something breaks, drain savings, pay it back, you get the idea.
We currently have a small emergency fund and we fully expected that my work-from-home business would allow me to work right up until transplant. That no longer seems to be a reasonable expectation. We felt that we were entirely prepared for a quick medical leave after surgery but not any decreased work beforehand, which looks like it could be weeks or months waiting on the transplant list.
I am currently pushing it to see some semblance of normalcy but just hitting about 33% of my usual productivity. For my health, I need to back that down to about 25%. Work 2hrs/day, rest with quality time, and eat for strength, and nap a lot as my oxygen saturation remains lower than normal. There is work waiting to be done – it’s a matter of having the energy and concentration to complete the contracted work.
Kristin was willing to get a job to make up the difference but we and other family members shot that down because she is my support system and taking care of the boys. If she leaves home to work, I am left caring for the boys, doing school car drop-offs, and numerous trips upstairs with our toddler.
I am still focusing on my WordPress theme and plugin shop, GenesisThe.me, and have two products for sale with two ready for launch by the end of March to supplement the client work and hosting recurring revenue, but there will be a shortfall with continued work hours at this level.
We don’t know when or if I’ll completely have to stop working, if that will involve being in the hospital on a ventilator, or if it will be a smooth recovery where I’m out in 3 weeks or 6-8 weeks. I’ll have physical therapy for at least a month, twice a week, which is draining according to friends… and I can’t be left alone for 3 months. That’s what we’re facing between now and being 100% health.
Thanks for listening and please feel free to share with other people who are interested in our story, if so inclined. We’re so thankful for such an amazing team surrounding us and lifting us up daily.