My Renal Artery Dissection and Kidney Infarction with VEDS (Vascular Ehlers-Danlos Syndrome) 

sorry you had to go through that Katie. Thank you for being selfless to share.

You explained very well what artery dissection is, it helped me to understand better this health risk, I suffer from hypermobile EDS and I have to check my arteries from time to time (I had an artery dissection scare in 2020, there were abnormal findings during an carotid ultrasound (I had to do it because I had symptoms kinda similar to a stroke but it was caused by a severe hypothyroid myopathy) and I had symptoms but after a contrast MRI, nothing seemed wrong fortunately). I'm so sorry you had to go through so much pain and emotional distress because of all of that!

Thank you so much, Katie, for pushing through the emotional difficulty and sharing your experience. I am so sorry to hear about the pain you went through. I have hEDS, but was just officially diagnosed last week with a vascular disease called Fibromuscular Dysplasia, when a neurologist I’m seeing for persistent headache noted that I had past dissections of both my ICAs - completely unbeknownst to me. Coulda knocked me over with a feather. So, w FMD, my arteries apparently like forming aneurysms and fistulas. Was sent for a full-body CTA and - ta-da! - I have a mild aneurysm on my left renal artery. Will find out in 2 days what the game plan is; I am seriously shook, though, and am terrified of a dissection. This diagnosis and the issues are unfolding faster than I can process them. So not vEDS, but hEDS with mutant vascular system. I think we’re cousins. Wishing you continued healing AND music. That’s where inner peace and salvation lie, I suspect. Keep singing, OK? ❤

Just back from my vascular surgeon, my renal artery is blocked. They can’t do endoscopy or a graft so looking at right kidney removal if they can get my bp down. I’m so glad I found your channel. Previous I’ve had uterine rupture at 28 weeks (my son did well), brain aneurysm with rupture and clipping, now three new ones. Bowel dissections and kidney's stented. The good news is I was finally genetically diagnosed at 57, I’m now 63. Thanks for the hope!

I think about you fairly often, and wonder what, if any, major health events are happening. I’m glad you’re on the other side of this kidney nightmare for now! I’ve never had to deal with a dissection, but i can attest to the significance of kidney pain. Idk what it is about the kidney exactly, but damn…. when they hurt, they fuckin HURT. I had hydronephrosis from an accessory artery blocking my ureter every time my heart would beat, and one day I was just suddenly in the most excruciatingly severe pain of my life. I tried to physically crawl out of my own body. Cannot express the level of pain. Idk if they’re still allowed to use Toradol, but that’s all that helped the pain. Apparently morphine doesn’t work on me. I’m so sorry you had such a nightmare experience of pain management. It shouldn’t be that way. Anyway, I’m happy you exist, I’m glad you’re alive, and I’m glad you still have at least half of your kidney!

Man the suffering is just unimaginable what we go through. I'm sorry you been through hell. The emotional and physical impact takes its toll on us eds patients. I'm so glad you are here and hopefully continue to slowly improve. Praying for your healing

As someone who is currently awaiting DNA results for a diagnosis of vEDS, thank you for sharing. Please continue to be gentle with yourself (you did experience medical trauma) and thank you for providing insight. It also reminds me that knowledge is power - you knew what was happening in your body. It makes me feel more confident that we know our own bodies best, and know how to listen. Thank you for doing this video

Lord have mercy upon you! Sending you strength and gentle hugs!

My sincere sympathy to you Katie. Thank you for continuing to share your journey.

You're very strong and an innate fighter Katie. I listen to every single new episode from your podcast and your videos, thank you so much for everything you do. Hope you can get the rest you need and a big break from this nasty disease. Keep going strong and pushing forward!

Hi katie, my son has recently diagnosed veds. Please tell how to control impact of veds.