Battle Hymns of a Hot Mess Mom

Day 0 is an interesting concept, it marks your transplant day. Monday was a day. It’s taken me a moment to process. Monday morning started with a call from the COH transplant coordinator. She called me at the end of June to say that there was a match potential that was a 10/10 donor match to me. We would need to run viability tests both donor and recipient. From then it was pretty silent, I stayed cautiously optimistic but quiet.

Yesterday she called to tell me there was a transplant date set. This conversation actually felt more real, more tangible and more possible. I know I’m only at the start of this mountain, in fact I haven’t even really gotten to the race yet. All of yesterday was spent hopeful and grateful.

Today started my testing. 20+ vials of blood were taken, echocardiogram, CT scans, pulmonary exam…urine collection that for some reason needed to be…cold. It was trippy. I wasn’t allowed to bring S into my appointments and they wouldn’t let her sit inside where the air conditioning was, she sat outside in the shade with J at close to 100 degrees outside. I was livid. Absolutely furious. My child had to sit outside in the heat. I couldn’t leave my child home alone, so what exactly was I suppose to do? F*cking geniuses.

So I sat outside with her and waited, then found AC hallways for us to sit together. The nurses also disagreed with the security policy and snuck us into back hallways to wait. You can’t fix stupid. People follow a policy blindly and don’t use their brains.

I had to call A to have her complete the updated disability docs for work, and while we are tentatively ending disability in Oct – I don’t think returning to work so quickly after transplant is realistic. I had the opportunity to write my donor anonymously that would be delivered on Day 0. They have until Day 0 to change their mind, to say I’m not on pins and needles still is a lie. I’m terrified so I keep putting positivity out into the universe.

Argued with the dentist that my cavities that have gone without issue for a year is not a medical necessity for me to get a transplant. His argument is that it could turn into a root canal. Money grab.

Today has not been a good people day for me. Between a greedy dentist that is holding my transplant release document hostage and moronic security guards that won’t let a child sit in the AC of the main lobby when it’s over 100 degrees out. I have had quite enough for today.

People say what a positive attitude I have and how so many patients are grumpy and ornery. Um…I can see why!!! When people just act like f*cking as*holes…it’s hard to keep positive. It’s hard to be f*cking Pollyanna sunshine. The chemo is bad enough that I don’t need more as*holes to accent my day. It’s already a lot. Sometimes adding more is just too much. On that note, I’m off to bed…tomorrow is another day.