On June 5, 2023, my husband Bill had been in a lot of strange pain that moved around his chest and back for about 5 days. He is only 53 so even if a big neon sign with blaring horns was telling us it was an aortic issue we would have ignored it. We thought he pulled something or it was possibly the flu, then, we thought maybe a spinal infection.
On that Monday in June, he finally couldn't take it anymore and we headed in the early morning hours to the nearest hospital. It was quiet, thank goodness but we were nervous because of a strange hospital visit I had in 2020 at the height of the pandemic. It is partially why we waited so long to go in the first place. His blood pressure was 193/100. They were so kind to us and pretty quickly wheeled him off to a CT scan.
It was not long after the doc came in and told us it was his aorta and he would need to go to Portland. We live about 2 hours from there in Oregon.
Bill, now finally out of pain thanks to the meds they gave him thought he would be making an appointment at a later date. The doctor said no you are going now in an ambulance.
I was not fully comprehending what was happening at this point and just watched things happen as though I were watching a movie. As they wheeled him away to the ambulance I heard the doctor say aortic dissection. What does THAT mean??
As he was on his way to the hospital in Portland, I ran home to get some things and drive up to meet him. On the drive up to the hospital Bill called and and said he would need 2 surgeries, one for the dissection and another for the large aneurysm he also had in his abdomen. It was very serious and there was a good chance he wouldn't make it. I was able to get to the hospital just as they were taking him into surgery and speak for 30 seconds with his surgeon. The first surgery would address the dissection. All I heard was blah blah blah he might die. I still didn't understand what was happening.
After an agonizing 8 hours he was in ICU and the doctor explained the bypass, the freezing of his brain and the danger of stroke and how important it was how he woke up. We both decided it was best I leave since it was late and I wasn't ready to see him after such a traumatic surgery, that happened in a blink of an eye, yet felt like 100 years.
He woke up! He woke up ok!
What I wasn't prepared for was how he would be "gone" for a while, and I felt so alone. Thankfully though, all 4 of his sisters and 3 adult children came from all over to support us, but I still felt alone and so very scared. After getting him through this first horrific surgery, in 3 days it was time to address the aneurysm. This was a new surgeon who was cautiously optimistic but again all I heard was blah blah blah he could die. I still didn't understand what was happening.
During the first surgery, I was sent texts informing me Bill was ok and all was well. During the second surgery I didn't get any texts and it was a long 5 hours before I heard a word. But he came out of it ok. OK means alive at this point. They first thought they would have to cut blood flow to one of his kidneys but they did not. Since this was abdominal surgery, Bill was now in for a painful ride. Of course, there are rules and policies and red tape and drawers that don't open until it is time and he suffered a lot for the first 2 days. Then finally the best nurse ever hooked him to a pain pump and things were better. But the pain meds took him away from me again and he was in his own world.
After the first surgery, Bill had some strange reactions mentally to the anesthesia and it scared him. He doesn't remember a lot.
He stayed in the hospital for about 2 weeks. During this time, we got more information and we learned he also had a bicuspid valve that needed replacing.
The biggest thing now was his blood pressure. The cardiologist thinks he had high blood pressure that lead to this whole mess, but he was not hypertensive before this. The surgeon who performed the first surgery thinks it was genetics. We still aren't really clear on the cause.
I have read that a bicuspid valve can, over time, lead to an aneurysm which leads to a dissection. Regardless. his blood pressure was difficult to manage when we first came home. We were constantly watching it and calling the cardiologist and trying different combos. There was a trip and a night at the hospital because it got up to 200/100. The doctor there felt his blood pressure was erratic because of all the healing from some serious trauma. His heart tested good and strong.
Besides the blood pressure, there has been, of course, shock and some depression and fear and odd taste issues. We are still trying to figure out what to feed him. He was already thin when this happened and all of this caused weight loss.
He has been able to work part time hours which has been the best for his mental state. Of course there are many moments not mentioned here and oddities but he is ALIVE and he seems to have his brain intact and can move and didn't lose any limbs.
He is experiencing some odd brain issues. For instance, his personality is a little different and we have been seeing his blood pressure rise while he does nothing and get really low after moving around.
Bill found some interesting information about it being related to the cooling of his brain and the part of his brain is possibly misfiring when it comes to regulating BP. His PCP just thinks any problems are because of meds. But what happens now seems to be a little unclear.
We live day by day and are starting to feel more hopeful and less terrified. But we feel really on our own. There are so many questions that don't get answered or he gets meds thrown at him.
We are tremendously grateful to the surgeons who did great work and so grateful to a particular ICU nurse who was an angel sent from God.