I’m Jim Moody. My wife Debbie is a survivor of two aortic aneurysm surgeries and will undergo at least one more in a few weeks.
Her first aneurysm was discovered when she underwent testing for a mitral valve failure. Her ascending aorta was mildly dilated. Her surgeon replaced her aortic and mitral valves in 2017. On follow up, the ascending aortic aneurysm was found to be quickly growing and the decision was made to graft the ascending aorta when it reached 5.5 cm in 2019.
In January 2020 her tissue aortic valve failed, and she had a TAVR procedure with follow up imaging more aneurysms were discovered throughout the aorta. Again, we monitored the growth of the largest being at the arch and descending thoracic region.
All seemed well until when in December 2022 her tissue mitral valve failed and again, she had a transcatheter valve-in-valve procedure done. Her surgeon wouldn’t open her chest again because to quote him “your aorta is a mess”. She was released from our local heart hospital, and it seemed the only concern of her doctors were the mitral valve was stenotic since they had to use a smaller valve to fit in the frame of the previous valve.
I had my concerns about her aorta since the CT report had noted a 5.7 cm aneurysm which was considerably larger size than the MRI showed earlier in the year. At her follow up appointments nothing was said about her aneurysms, their only concerns seemed to be the pressure gradient of the mitral valve. I inquired about the aneurysms, her cardiologist who deployed the valve-in-valve never said anything about her aneurysms. However, his nurse did remark that there were other places we could go that would open her if needed since her thoracic surgeon had proclaimed he wouldn’t open her again.
Over the years she has had cardiovascular problems I have always tried to keep myself informed and sought second opinions. In 2019 I wanted to consult with the Cleveland Clinic since I wasn’t entirely confident in the 2017 decision to address the aortic valve without informing us or taking into consideration the ascending aortic aneurysm. It was a year later before we were told they were watching the aneurysm. So, I learned I needed to read the reports myself.
The 2022 CT scan was done to determine the size of the mitral valve to see if one would even fit and the 5.7 cm aneurysm was noted. When her cardiologist didn’t seem concerned, I asked our trusted Internal Medicine Doctor of 40 plus years what he thought. He read the report and advised us to send her records immediately to The Cleveland Clinic.
It took a week to get the records together and two weeks after we had a telephone consultation with a member of the cardiothoracic team where they advised us in four weeks they could schedule her to replace the two stenotic valves both aortic and mitral valve-in-valve prosthetics with the proper sizes and repair the aneurysm in the arch as well as the descending aorta with the Frozen Elephant Trunk procedure for which she would be entered into a clinical trial. Zone 2 B-Safer. A modified prosthetic aorta including the arch and a descending aortic stent. Later in the year, complete the thoracic aorta repair with an endograft.
March 15th, 2023, the initial procedure was done with a section of the diseased aorta sent to pathology and the report noted Giant Cell Arteritis. This explained the rapid deterioration of her aorta. Since the inflammation was contained to the aorta it was called Aortitis. Extremely rare condition.
Debbie has always been a good soldier when approaching her many surgeries (three open and two transcatheter so far). She has been of course anxious, but never feared any previous procedures but the last one which was such a major surgery, and the recovery was not smooth. 21 days in the hospital 11 in CICU. Her body never really recovered from the 2020 TAVR with the Covid 19 lockdown then the 2022 mitral valve failure.
With each of those procedures she spent 10 days in the hospital pre-op while they worked her into the schedule for the minimally invasive procedures. All of that took a toll on her. Our follow-up appointment June 27th showed the replacement valves performing well and the FET procedure doing well, however, the endovascular procedure wasn’t scheduled. We had an echo that showed mild pulmonary hypertension, so we are being sent to pulmonology to find out why. The cardiologist suspects Diaphragmatic paralysis which is an uncommon complication of thoracic surgery but would explain her difficulties coming off the ventilator post-op in March, her symptoms of shortness of breath while lying flat and the mild pulmonary hypertension that continues today, so we are in the process of returning to Cleveland later in July.
As we prepare for Cleveland again the anxiety she has is unlike any previous procedures although this will be minimally invasive, she just has been so traumatized by her previous experiences. Her PTSD has been intense even with counseling. This has been a life-changing experience for both of us, but it has brought us closer together. Knowing there is a dangerous sized aneurysm, and we are getting the treatment necessary still doesn’t make it any easier. She knows that the rest of her aorta will most likely need to be replaced when she is strong enough to undergo another procedure but should be able to delay it by using the immune suppressant treatments to slow down the progression of the aortic inflammation.
Some people never get diagnosed until it’s too late to have that choice to do something proactive about it. So, she soldiers on. I’m here to provide comfort and help navigate the terrain. We have been trying to find support groups Cleveland Clinic sent us a link to Aortic Hope and thought I’d tell our story.