Let's start at the beginning

Wow, it's been awhile. Life has been . . . hard, crazy, upside down, insane . . . I don't even have words for it but I remember that I always loved blogging. It was therapeutic for me and so I thought I would give it a try again. I know no one probably reads blogs anymore so this is probably just for me. That's okay. If you have happened to stumble across this, Welcome Back! 

To explain what's been happening we have to start at the beginning. Way, way back at the very beginning.

You may remember that 6.5 years ago (in 2014) Kurt had a health issue. You can read about that here, here and here. The short story is that he had a dissected celiac artery with an aneurysm. He spent 3 weeks in the hospital, had the crash cart called on him twice, and had several procedures attempted to fix it and all failed. They ended up deciding to leave it alone. Over the years, he has been followed by a vascular surgeon. We see him every 6 months (usually in February and August). So they have just watched it and it has remained stable. 

Fast forward to February 2019. We had our usual check up appointment with the doctor and when reviewing the abdominal CT scan, he mentioned that the radiologist noted that they saw the bottom of Kurt's lungs and there was a spot in his right lung. The doc said we should follow up with Kurt's primary doctor about that. The primary ordered a chest CT to see the lung better. That found 3 issues: 1) his ascending aorta was enlarged, 2) he had a cyst on this thymus (his what? what is a thymus? 🤷‍♀️) and 3) a spot in his lung. We were sent to 3 different specialists - a cardiologist, a thorasic surgeon and a pulmonologist.

The cardiologist said that yes, the ascending aorta was enlarged but not too bad so he would scan him again in a year and see how it looked. Awesome! Easy peasy. We were used to that because of his celiac artery.

The thorasic surgeon and the pulmonologist weren't so easy. They both ran test after test trying to get better images of the other 2 issues. They ran MRIs, CTs, PET Scans, etc. And while everything showed that those 2 spots looked benign and okay, they also showed something else. Over the months of scans, each scan mentioned that ascending aorta, which we expected. What we didn't expect was that each scan showed that aorta getting bigger and bigger. A few of the results:

March 29 ~ 4.3 cm

May 15 ~ 4.5 cm

July 25 ~ 4.7 cm

While the ascending aorta was in the reports, neither the thorasic surgeon or pulmonologist brought it up to us. I guess they were more focused on their specific issues. It wasn't until our next check up appointment with the vascular surgeon in August that he mentioned it. He said something about another aneurysm and we were like "What?! Wait, what are you talking about? Another aneurysm?" He show us the most recent report and said he thought it was large enough that we should follow up with the cardiologist again. So I called and made another appointment with him. 

The cardiologist said yes, that it was concerning that it was increasing but he also said that each test (MRI vs.  CT vs. PETScan) each read things a little differently so there could be some discrepancy in the numbers. To really know it's actual measurement we should take Kurt into the heart cath lab and go in through his wrist and up into his heart to get accurate numbers and see if anything else was going on inside his heart. So we scheduled that. We found out that: 1) the actual measurement was now 5.0 cm and 2) Kurt had a bicuspid aortic valve.

Usually heart valves have 3 little flaps that open and let the blood through. Kurt was born with his aortic valve having only 2. Which means that as the blood flows through, the flaps can't open like 3 flaps would and so the blood can get distorted as it goes through and can cause the ascending aorta to enlarge and become an aneurysm. He has had it his whole life and no one ever found it before this.

If someone with a normal valve has an ascending aortic aneurysm, the threshold to replace it is 5.5 cm or bigger. We were under that. However, if you have a bicuspid aortic valve, that threshold drops to 4.5 cm, which we were over. So surgery became more urgent. The doctor said we should get it fixed sooner rather than later, especially with how quickly it was changing. Basically, if his ascending aorta ruptured, there would be nothing we could do to save him. 

What's the fix? Well, a major open heart surgery. They have to replace the valve and the ascending aorta.

The surgery was scheduled for October 23, 2019. Not going to lie, we were nervous. The plan was that after surgery, Kurt would be in the Cardiac ICU for 1-2 days and then moved to the cardiac floor in the hospital for about 5 days. His sister, Jenny, offered to come out and stay with the kids during the week that we would be in the hospital, which was an absolute LIFE SAVER! I have no idea how we will ever be able to thank her enough!

My uncle, aunt and cousin came up to support us for surgery day too. We are truly so blessed with such awesome family! The night before the surgery we had a big family dinner.

I can't forget to mention what an absolute blessing it was that we found this! Kurt had ZERO symptoms. There was no reason to check his chest for anything. If that CT hadn't seen the bottom of his lung. If that spot hadn't been there (turned out to be scar tissue). If those doctors hadn't run so many tests during the summer months so we could see the growth. If his vascular surgeon hadn't mentioned "the second aneurysm." So many events lead to the fluke finding of this. It was a blessing that we found it before something catastrophic happened.

This picture is from the night before surgery. I just look at it and think that this cute, little couple has no idea what what's in store for them.