I would really like to update this more than once a year, but with how my last few years of life have been that’s a challenge.
Last April I wrote about how my entire life changed when I coughed up blood and woke up 2 weeks later in the ICU after a surgical complication due to my genetic connective tissue disorder called Ehler’s Danlos.
So, when April rolled around this year my husband and I breathed a sigh of relief. I had made it a year.
But the year hadn’t been without problems.
Around January I woke up on a Saturday morning, went to the sink, and felt a cough. I saw more blood. Not much, but it was there. David was out of town, but not far away. I called 911 and while my vital signs were fine my surgeon wanted me to be brought to the ER for evaluation.
They did many scans and studies and saw signs of infection around the TVAR, which was part of the aortic graft used to save my life that night last year.
I was put on Levofloxacin.
More scans and studies were done in the following months.
I developed bad side effects with that medication- turns out people with Ehler’s Danlos are not supposed to take that medication. I saw that on the medication sheet when I was prescribed it, but was told at the time that only applied to people with vascular EDs (not true).
So, I get put on another antibiotic and go on my way with more follow-up scans pending.
March 7th I have a virtual appointment with Cardio-thoracic at the University of Washington, as I had been referred out to them due to the infection They tell me that, despite what I was told, the TVAR was never permanent and was to be considered infected from the moment it was placed. They said it had to come out before the end of 2022. Okay, we can plan for that. Not great news, but not terrible.
April 4th I had a procedure with the University of Washington so they went in and looked at how I was healing and to take some tissue samples for infectious disease testing (I did end up having an infection).
We wouldn’t find anything out for a little while, but I wasn’t going to let this new put a damper on my Phoenix Day celebration on April 8 because that is when David and I were celebrating a full year since all this happened.
Then they want a WBC scan at the end of April, which I go and do.
The follow-up was May 2, and I never expected the results. When we get there and into a room the room starts filling up with providers, which is never a good sign.
They tell us that I have developed a psudo-aneurysm in my aorta and that blood is pooling outside of it into my body. I had no symptoms besides being a little more tired than usual in recent weeks.
I’ve never had a doctor look at me the way he did. He proceeded to tell me how serious the situation was and that he was sorry. That’s when I knew it was bad.
He gave us 2 options- 1 surgery that was easier, but if it failed in future days/months/years that it couldn’t be fixed and I’d die, or another surgery that I might not survive, but if I did and if it failed later on would be easier to fix.
I opted to go with the second choice; a reverse hemiarch/aortic arch replacement. This time around I know very little about what all actually happened to me, which I’ll explain in a moment.
To prepare for this very serious surgery he wanted me to have an artery translocation to move it out of the way to allow for him to have more access during my operation, which I did May 11th. I woke up from that fine, but my vocal cord was damaged in the process (which I knew was a possible risk).
My aortic arch replacement was schedule for May 17, but I wouldn’t make it that long.
May 14th I woke up feeling a little off. As the day progressed I stayed in bed, but my heart rate was high at rest- 100. I called the UW surgeon on call to ask about it, and they said to watch it for an hour or 2.
Time passed and my resting heart rate continued to increase. 115. 120, 130, 150- and my Fitbit had started pinging me congratulating me on being in peak burn zone.
I had my husband take me to the ER and the rest is kind of a blur. I was put on some blood pressure medication and eventually once stable I was transported to UW’s ICU.
My surgical team met us there in the ICU after midnight when they were out of surgery and they decided to do the surgery sooner than planned. It had turned into an aneurism.
I was stable so they let me rest overnight and came in the next morning to do the surgery. The rest is even more blurry.
I survived the surgery. I remember being in the ICU and not able to talk because I was intubated, which was terrifying because I had never experienced it before. When this all happened last year I was completely sedated for intubation and have no memory of it at all. I started vomiting, but that’s all I remember for a while.
I did eventually get moved to the regular inpatient floor with my 3 chest tubes and don’t remember getting those out, but I’m sure that was fun. I was there for all of May.
I had a follow-up ct scan in early June and an appointment where I was given the okay to go home. The next morning we got a call that they wanted us to come back to be admitted because they saw fluid on my lungs, so we made the 1+ hour trek back up to UW.
I spent our 38th birthdays in the hospital, which was certainly nothing I ever expected to mark off my “life bingo” card. David made me an awesome copy paper birthday crown and the nursing and cafe staff all wished me happy birthday (they didn’t know about David’s birthday).
I had been on some serious IV antibiotics since the artery transposition, but while in hospital I started to develop tinnitus, which is a side effect of the medication I was on. They lowered the dose and it seemed to get better (until about a week later- now I’m on oral medication and still have tinnitus).
This time around the medical PTSD I’ve been experiencing was far worse than last year; I actually expected it to be easier because I thought I’d done it before so it wouldn’t be new- but I was wrong.
Luckily while in hospital for another 2 weeks I was able to get medication that helped support my PTSD symptoms on a day to day basis. They were really great about taking my experience seriously and doing what they could to help make me comfortable.
During this time I was also able to get a vocal fold injection because they saw I was aspirating (and had been for a month, but nobody acted on it even though I kept bringing it up). It did resolve the aspiration, but made no improvements to my voice. I still have to wait and see if that improves, or not.
So that’s where things are right now. I go back to work at the end of this month and have no idea how that will go since I can’t really speak.
I have a follow-up in September and I hope that things go well and that I can be done with this.
Now I have to get back on track with my kidney studies- I have a duplex kidney (yay, genetics), and have put caring for that on the back burner since I’m generally asymptomatic.
Here’s hoping I get a period of time that is stable and surgery free….
angela schnabel 