Hey y’all –

It’s another night of transplant insomnia so I thought I’d give you an update on how things are going. Insomnia? Yes, it’s fairly common in post transplant patients, so some nights I get zero sleep, 2 hours of sleep or a good 8 hours of sleep. And I can’t just sleep in because anti-rejection meds are timed, so it’s just another thing I didn’t read in the fine print. Anyways…

Last time I updated on Facebook, I was sharing how my team decided to proceed with a fecal transplant to treat my antiobiotic-resistant second round of c.diff. Unfortunately, we had to cancel it because I ended up in the local ER and hospital for a day. I didn’t have the time to do the prep or the mental bandwidth to do it. I was also dealing with a recurrence of chest pain that the cardiologists believe is the ongoing infection, irritating the heart and I didn’t feel comfortable going under anesthesia with it, so I said no.

When I was discharged from the local hospital, I talked to my Tx coordinator and our plan was they would reach out to GI after the July 4th holiday to see how we could move forward and get things rescheduled or I’d go to Hopkins ER if things got worse or they’d admit me on Tuesday when I was up at Hopkins for my Botox injections for my migraines.

Well….I reached out to GI this past week but never got a call back and I never heard from my Tx team either. When I called them Friday, I was informed they never reached out to GI 😡 and for this past week no progress was made. Meanwhile symptoms have continued-mainly lower back and abdominal pain and my PCP has been trying to manage symptoms with a variety of meds including pain meds. Tx wasn’t happy to hear I was taking pain meds but my PCP and I decided they can just deal with it until we treat this infection properly. Because the infection is resistant to the antibiotics, it is still active, inflaming the colon and causing the pain.

…On top of dealing with that issue, the steroids we restarted and the pain meds are causing me to retain fluid and slowing things down. So now we have to try to treat that without totally making my kidneys angry. Super fun stuff to get to manage.

Truthfully, I have had a few good days but more bad ones than good the past couple weeks. The hospitalization last week, triggered my PTSD so I dealt with a lot of flashbacks and nightmares. We are possibly going to start another med that is known to help with PTSD, but waiting to hear from the Tx Pharmacist if it got cleared. I am clinically diagnosed with PTSD, so it adds another layer on top of the physical pain to hospital stays.

When I was doing my bi-weekly telemedicine appt with my PCP this week, I told her it felt like we were back to pre-transplant times-chronic issues, fighting to get the right treatment and dealing with pain. We both agreed it was a “what the h*ll” kind of time right now.

Truth be told, about a month ago, we saw my depression rearing it’s ugly head again. I saw some of my symptoms returning like not wanting to get dressed each day, not doing my self care regimens like moisturizer and such, reaching for sweets and finding an excuse to not walk the dogs. When those things start happening, it signals to me that I’m in a depressive episode.

No one likes to talk about mental health because of the stigma. But since we’ve even talked about my poop on here, I feel like it’s not off limits…The good days have been outnumbered by the bad days, both physically and mentally, as of late. There is this unspoken pressure to “honor your donor and protect your gift” and rightly so. But it also sometimes puts limits on dealing with other emotions…tired from no sleep…angry about pooping like 10 times a day, frustrated when your team drops the ball and even grieving the life you now live. My new therapist is helping me to explore these other emotions and how to frame them from a place of gratitude, while also validating they are real emotions that are okay to be felt.

Am I okay? 100%. Am I burnt out on all things Medical? Also 100%. Am I doing all the things to help my mental health? About 90%. And that’s okay. Sometimes your girl needs a fuzzy blanket, two dogs, her mama and some chocolate. Oh and a few good tears.