Long overdue update

It has been so long since I last wrote. To catch you up on what happened after my blog post in April, my port site was unable to be accessed due to a severe allergic reaction to the surgical glue on my incision. For those who don’t know what a port access is, a large needle is inserted into my port implant. This needle has a catheter attached to it so that IV bags can be infused through my veins.

Anyways, because my port couldn’t be accessed, I was going several days without my nightly IV infusions/medications. So the doctors instructed me to go to the ED to receive a temporary PICC line. I was super bummed about that because 1. the skin on my arm never tolerates a PICC line well and 2. I had to wait more than 8+ hours in the ED due to how busy they were. 😭 But, I was finally admitted overnight, and the IV therapists placed a PICC the next day.

In early May, my port site was healed well enough to have my PICC line pulled and my port accessed once again! Sadly, the port catheter under my chest got kinked (a rare complication) which makes it hard to flush my line with saline/heparin. If the kink gets even worse, I’ll have to undergo a port revision surgery. 🙁 Taking this day by day, and I’m so thankful the Lord has been helping me through all of these issues. ❤️

Due to having sepsis in February, I had to postpone the surgical repair of my torn hip labrum on the right side. I was going to wait until sometime next year, but my hip has been bothering me a lot lately. So I have an appointment with my hip surgeon in August (she’s sadly booked out).

Still dealing with numerous migraines/headaches caused by my mitochondrial DNA depletion. But I had a virtual follow-up with my headache neurologist in Seattle recently. I’ve been trialing a combination of medications/supplements, and they help somewhat but not enough…so we’re going to try and substitute two of the meds with a different one.

Since so many of my doctors are booked out until August and beyond (GI, Pulmonology, Pain Medicine, Sleep Medicine, Orthopedics, etc), I don’t have a ton of appointments in July. I wish I didn’t have to wait to see my doctors.

But whenever I have a hospital stay, it always puts things in perspective. Being really sick and weak on a hospital bed reminds me of the things I often take for granted: stable health, strength to attend physical therapy and appointments, eyes that don’t have to battle nystagmus (which always becomes debilitating when fighting sepsis), time spent with my family/friends, etc. These are huge blessings from God. So even though it’s not fun waiting several months to see different specialists, I thank Him for this “slow” period coming up next month and the chance to do things I wouldn’t usually have as much time to do. ❤️

Until next time! 🥰