Aorta Patient’s Perspective?
After Aortic Surgery, You’re Essentially On Your Own!
It can’t be helped!
It’s up to us, to help each other!
Much Appreciated Aortic Surgeons Are Too Busy, Saving Other Lives!
Aortic surgery is modern magic, that has saved my life, and that of countless others.
New aortic surgery techniques could have extended the life of Albert Einstein, but he was born too soon. They did what they could, with the tools of the time. Modern endovascular techniques have changed it all. Just watch the video, above!
I was prompted to write this article by two recent events:
- The story of a heart stent patient who wrote to me, as reported in one of my recent blog posts, entitled, Exercise With Heart Stent; Left To Figure It Out On My Own.
- A conversation with another veterinary pathologist, a friend, about a patient who died, due to the attending physicians missing an ascending aortic rupture – easily missed, be it in the chest or the abdomen. This differential diagnostic challenge could be assisted with a simple phone app, as I mentioned in my little book, “Aortic Disease From The Patient’s Perspective.”
As a large-animal (cattle mainly) veterinarian in clinical practice, I missed plenty of diagnoses, especially in my first year – it’s the only way you learn. By your mistakes! They are bound to happen. Instead of beating oneself up, you say to yourself, “Well, that’s a mistake I’ll never make again.” This is the road to becoming an excellent physician, be it for human or non-human animals.
As I was writing this post, I thought, “Maybe there’s already an app, that could present the differential diagnostic list for chest pain (retro-sternal) on my phone.” I paid $9.99 for an app, and within about one minute, mastered the syntax, and was presented with a differential diagnostic list, which included ascending aortic dissection. GREAT!
App idea not so bad!
Maybe that is patient tip #1, “Please get to us, before we’re dead.” Do first responders know about this app, and use it? I asked a medical friend, who said they use MedCalX, but that didn’t do the job for me. Either way, DDx or equivalent could save some lives, especially for those people with lower back pain, sent home with pain medicine, to die of a ruptured abdominal aortic aneurysm. Just a thought!
We cannot learn without making mistakes!
With all these ideas going around in my mind, I found myself interested in what happens to the people, such as myself, who survive aortic surgery.
So I prepared a simple survey, for the ‘aortic subscribers’ to my newsletter.
If you have aortic disease, you can contribute to the ‘aortic patient perspective’ survey at this link.
There have been 37 responses so far, leading to the following ideas.
Suggestions To Improve Patient Outcome
(Number Making Request/37, % Of Samples)
- A list of things to do, to prepare, while awaiting surgery; not always an option (6, 17%).
- Better explanation of choices of surgical approaches (7, 20%).
- Better explanation of risks, e.g. colonic disfunction, and male risk of impotence following open surgery (8, 23%).
- Improved physical rehabilitation (15, 43%).
- Better education on the challenges faced on returning home (14, 40%).
- Advice on returning to preferred physical activities (13, 37%).
- Assistance with finding people in the same situation, to learn from them (12, 34%).
- A list of useful websites and support groups, on leaving the hospital (16, 46%).
- Advice on activities to be avoided, due to risk (16, 46%).
- Advice on handling aortic disease, emotionally (15, 43%).
- Advice on handling fear, expressed by family and friends (10, 29%).
- Advice on lifestyle, including exercise and nutrition, for an optimal recovery (15, 43%).
- More assistance with rehabilitation at home (11, 31%).
- More assistance with financial, insurance, and/or job implications (6, 17%).
You can see all of the survey results, at this link.
Hope this is helpful,
FitOldDog
I survived an emergency surgery for Ascending Aortic disection and recieved a Dacron graft.After surgery I was out of my mind for several weeks ,as though I was in a waking dream.Later in the hospital my ability to concentrate was badly effected. I was given no information nor was my family on something so disableing and frightening to me. It cleared slowly over months however meanwhile i suffered.Today i know it happens quite a bit after this surgery but I needlessly suffered believing I was brain damaged. My own personal determination and a knowledge that brain function sometimes improves after injury were all I had.If I recieved information in the hospital this would have been avoided.
Hi Catherine,
I am pleased to welcome you back to the rest of your life.
The issues you describe, which could be easily avoided, are exactly what I’m trying to change. I even wrote a little book, “Aortic Disease From The Patient’s Perspective,” specifically to explain our situations to the medical professionals who saved our lives. No interest! I was very surprised about this. If you’re interested, I can send you a free download link for the book. A new draft is needed, to include pain (of which I had little, thus the omission). But if they won’t read it, it’s a waste of time and money.
Somehow, they have to listen. Just a list of helpful websites, as you leave the hospital, would be a big contribution. I was on my own for about 6 months, until Pauline Carol Watson found my blog.
There is absolutely no need for this.
I really appreciate your comment. Most of the time I hear very little, so comments provide me with the encouragement I need to continue my efforts.
Hoping you are well.
Kind Regards,
kev