A cascade of events

It has been a little bit since I've updated you all. Things were relatively stable and I celebrated the one year mark of living with a chronic MRSA infection on my aortic graft. We even traveled to Pennsylvania for a family wedding and planned a train trip to Disneyland for February!

It has been an interesting past week for me - a cascade of events like dominos falling one after the other have occurred.

DOMINO #1

When I was discharged after my surgery on June 6th I suddenly found myself without a cardiologist. My cardiologist had left my hospital system and the physician's assistant in cardiology practice had been refilling my medication until I could get in with a new (recommended) cardiologist. My favorite medical assistant in the office helped me get my January 2027 appointment moved up to October 2nd. It's important to note at this point the physician's assistant had only refilled my medication to get me through my October 2nd cardiology appointment. Last week I get a phone call from the cardiology practice saying that the doctor would no longer be in on October 2nd, and that they had canceled my appointment. When I called to reschedule the next available appointment was in May 2027. I spent the day trying to figure out what the next steps would be including having my other doctors reach out to the cardiology practice to pull some strings. And in a strange coincidence, that same day that I was trying to figure out how I would get into a cardiologist, I ran into my former cardiologist in a parking garage (she is now a friend). We chatted briefly and I mentioned that I was wasn't able to get in with the cardiologist she recommended and that I was looking for recommendations for other cardiologists that could see me sooner. Between the messages from my other doctors and the text from my former cardiologist I magically got an appointment THE.NEXT.DAY on September 25th. (It turns out the new cardiologist is going to be a great fit because her family is friends with my vascular surgeon and his family.) At the appointment my blood pressure was extremely low. We retook it multiple times - on both arms, in my wrist, manually and digitally with no improvement. I had also been extremely fatigued for at least a week. She left the room and called "insert first name here", my vascular surgeon, and they both advised me to go to the ER for further evaluation.

DOMINO #2

We went home and grabbed a few things and headed to the ER downtown. I was immediately called back to triage and everything after that was a bit of a blur. Hubby hadn't even parked the car and I was taken back to an ER room filled with nurses and doctors who were poking me for IVs, taking an EKG, hooking me up to a heart monitor, checking my blood pressure, etc. My blood pressure eventually stabilized on its own but they ordered an echocardiogram a CT.

DOMINO #3

I was sent back to CT and the tech came to check my IV for the contrast injection. They couldn't get the IV to withstand the fast push of the flush that mimics the injection of the contrast. She called another tech to flush it, and then they called my nurse from the ER to come assess the IV. Ultimately I was sent back to the room without getting the CT scan. I got re-poked with an ultrasound guided IV and had to wait for CT to be available again.

DOMINO #4

I had a shiny new IV and headed back to CT. The tech came in again and tried flushing my IV. It was a bit temperamental, and she felt it was positional. She pulled all the skin in my arm towards my hand and wrapped tape around it in the hopes that that would allow the 100 CC's of contrast to flow through the IV quickly when it was time. Looking back I should have advocated for myself better, but in the moment I was concerned that there was something wrong with my graft or my stent or my valve and knew the CT was an important next step in getting that information. The first part of the CT is images without contrast and that was finished quickly. She had told me to expect some pressure when they injected the contrast. She let me know that she was injecting the contrast and my arm felt like it was going to explode. She came in quickly and realized all the contrast had gone into my arm and not into my vein. It was extremely painful and they had to call a doctor down urgently to assess my "extravasation injury". It was swollen like a football under my skin and it felt like my arm was going to burst. I didn't have any numbness or tingling in my hand so they sent me back to my ER room with only half a CT scan. They gave me heat and then ice to apply to my arm. I had to stay in the ER for them to monitor my arm for several hours.

DOMINO #5

The part of the CT scan that they were able to see didn't show any changes that would indicate that the low blood pressure had anything to do with my stents, graph, valve, etc. The cardiology fellow came by did another echo and thought that my low blood pressure could be due to my secondary adrenal insufficiency. He felt that due to my recent travel I had possibly gotten a cold, which increased my name for cortisol. His suggestion was to take some additional steroids, boost my cortisol and get me over the hump. At this point my blood pressure had stabilized. They gave me an additional dose of my daily steroids and then sent me home. The ER visit started just before 5pm and I was discharged at 3:30 in the morning. Hubby and I slept in the next day and I rested the remainder of Saturday with my arm elevated.

DOMINO #6

I have recently had some pulmonary function testing and my pulmonologist ordered pulmonary rehab. Tuesday I drove myself part way into the City to a sister hospital for my pulmonary rehab evaluation. There were a whole comedy of errors before I actually got into the evaluation. They started the evaluation asking questions about my ER visit on Friday with some concern. They went ahead and took my vitals and my blood pressure was 86 over 54. I was told they could not complete my evaluation, I couldn't drive myself home and that they would call a rapid response and send me to the ER.

DOMINO #7

I again, had a room full of nurses, doctors, IVs, EKGs, etc. My blood pressure was consistently reading low every 15 to 30 minutes. When they checked it. They gave me fluids and they called a consult with endocrinology. They also snuck in an order for a carotid artery doppler that I had just scheduled for October 8th - the ER doc was trying to tick something off my list since I was stuck in the ER. Endocrine ordered some additional blood tests and then came to consult once those results were back. They confirmed what the cardiologist in the ER just days before had speculated that I did indeed have secondary adrenal insufficiency. I have been on steroids for 22 years but apparently the level of steroids I was taking was not enough for my body to maintain my blood pressure. They gave me a stress dose of hydrocortisone and then tapered it to 50 mg three times a day and tonight I will start 50 mg every 12 hours.

DOMINO #8

Endocrine moved to admit me for a stress dose steroid protocol, which basically means monitoring me as they taper me down from the initial blast of steroids. This is Domino number 8 because there were no beds available in this smaller "sister" hospital. So I spent the first night in the ER and most of the second day. After 32 hours in the ER I was admitted to the telemetry floor. l am being monitored as the steroids are tapered and will wait to see what the endocrine team says tomorrow.

DOMINO #9

I had a fun night planned with friends tomorrow, Thursday, night and I had to cancel. I was very much looking forward to it and had everything all prepped and ready. Will reschedule once I know a bit more over the next few days.

My takeaway from all of this - I am grateful the problem was identified and a treatment plan is in place. I don't often get scared, but I was this time. Once they ruled out any potential problems with my aorta/valve/graft/stent I felt much better.

I am frustrated about pulmonary rehab. It had taken me a long while to come around to being agreeable to attending. Pulmonary rehab is typically 36 sessions, three times a week, and is 30 minutes from our house. I have made a conscious decision to spend my time living and doing things I love with whatever time I have left and spending three months going to pulmonary rehab was not high on my list of things that bring me joy. However, navigating using oxygen while traveling is a challenge. We road tripped to Pennsylvania and took my large oxygen concentrator with us for the hotel and while we were staying with family. My portable oxygen concentrator lasts about 3 hours, so that was a bit of a challenge during the wedding and the reception. All of this caused me to evaluate the cost of pulmonary rehab versus the benefits of potentially being able to be off oxygen by the time we travel to Disney in February. The current ER and inpatient admission has delayed my pulmonary rehab evaluation and starting the program.

But I will press on because I have things to do. My hubby is running the Chicago marathon in a week and a half and I plan to be there to cheer him on.

Thanks for sticking with me on this journey and for reading this far.