My Renal Artery Dissection and Kidney Infarction with VEDS (Vascular Ehlers-Danlos Syndrome)
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- เผยแพร่เมื่อ 1 ต.ค. 2024
- In November, I had a spontaneous renal artery dissection and kidney infarction and lost half of my right kidney due to Vascular Ehlers-Danlos Syndrome (VEDS). I'm ready to talk about it.
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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? ❤
I have friends who have FMD- I’m so sorry you got that diagnosis but glad they found out and can monitor those aneurysms! Did they rule out VEDS with genetic testing? I have a couple friends who got that fmd diagnosis without testing and later found out they have VEDS. I hope that is not the case for you and that they already ruled it out completely. ❤️❤️❤️ in any case, much love to you and peace as well. I just finally started singing again yesterday and will continue to do so ❤️
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!
Thank you for sharing about your SRAD. I have a right accessory renal artery dissection and am wondering if the incredible pain was a cramp or the event. it only lasted 5 minutes or so. They tried expanding mine with angiogram intervention. It lowered my blood pressure for 1 week then the BP went back up. Kidney function is normal but I have to keep BP stable with meds every day. My renin is high. Did your renin ever go down as the kidney died?
I’m sorry that happened to you! Idk if my renin ever was affected. My kidney tests are normal now
❤🙏🏼🐩
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’m so glad you finally got answers with your genetic diagnosis and wishing you the best with your kidney ❤️❤️❤️ half of my right kidney died but they were able to leave it in. The dissection was very painful. I hope you are not in too much pain.
Thanks so much Katie 😊 the kidney is deteriorating but thankfully I have a good high pain tolerance. I’m always hopeful as we play whack-a-mole with each new thing that comes up. You’re an inspiration ❤️
Hi katie, my son has recently diagnosed veds. Please tell how to control impact of veds.
Hi! I’m sorry to hear about your son’s diagnosis. The VEDS Movement has a lot of information and a help and resource center staffed by a nurse. Check out TheVEDSMovement.org
not to take anything away from what happened to you, I had this as well back in June last year was in hospital for over a month, I was only recently diagnosed with veds June this year.
You explained this so well.
We can do this, stay strong 💪 💪
Glad you got a diagnosis and sorry it took so long! I was diagnosed about a year and a half after my carotid artery dissected but didn’t even know it had dissected bc I was sent home from the ER. That wait is insane!!! Have you been connected with others in the community already? There is a lot of support through the VEDS movement
@@TranslucentOne yea I've started to connect with people, I'm in the UK so I've found a charity group called Annabelle's challenge, who've been great
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
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
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!
My sincere sympathy to you Katie. Thank you for continuing to share your journey.
Lord have mercy upon you! Sending you strength and gentle hugs!
sorry you had to go through that Katie. Thank you for being selfless to share.