My Spleen Rupture with VEDS (Vascular Ehlers-Danlos syndrome)
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- čas přidán 16. 06. 2024
- On October 10, 2021, my spleen spontaneously ruptured due to VEDS, or Vascular Ehlers-Danlos Syndrome. Here's what happened.
The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.
Katie: so glad you are at home and getting the rest you need. I’m so happy that you shared your experience. I know it must have been tough, but you are so strong and will get through this! I have continued to pray for you that each day gets a little better and you get the strength you need. Sending many hugs your way!! Karen
Thank you, Karen! ❤️
❤️ Wishing you all the best. Thank you for your advocacy.
Thank you!
Wow Katie! What an awful & unusual situation. So glad the 'new to you' EMS crew & providers were swift and receptive to your history and input. Hope healing continues to go smoothly now that you've had the coiling. 🍀
Thank you so much ❤️
I’m so sorry that this happened but So glad you were in the best place for treatment! Thank you as usual for your excellent and necessary education
Thanks so much Sophie!
So glad you’re okay after all that! It sounds like you have a really great way to handle medical trauma, thanks for sharing it with us! Love your channel and really glad you’re healing!
Thank you so much, Cai! ❤️ I’m interested in how others have found ways to deal with medical trauma as well. I’m sure so many of us have struggled to find ways to navigate that!
Hi, Katie, Kurt here, you know,, the guy who plays the piano and has an aortic dissection. I was laying here in my hospital bed and wondering what to do next, and your video popped up, I decided to hear what you have to say. I'm sorry to hear about your spleen rupturing and sending you to the hospital. I've been praying for you. As for me I've developed this infection in my stent graft in my aorta and it sends me to the hospital every few months with a fever and pain. God bless and I hope everything works out for you
Ah Kurt I am so sorry that’s happening to you! Wishing the best for your recovery and hope that they can stop that recurring infection in your stent graft somehow. All the love ❤️
I do not know you but you are in my thoughts and prayers. Hoping for the best.
I hate VEDS. Love you Katie and I’m glad you are okay. Best of luck with the mental recovery. 🙏
❤️ thank you, Ed! All the love
I’m so glad to have found the spleen community.. I am about to become a member I think
I’ve been reading this over a few times and not sure if it means your spleen has ruptured, is about to rupture, or you’re about to join a Facebook group. Either way, I hope you are doing well!
Did you have pain in your left upper trap/shoulder? Lacerated my spleen last year after a "not-that-bad" spill and that + the lower abdominal pain from the internal blood sucked. I went to the hospital after the faint feeling/nausea/sweating/paleness the next day after my little spill. Had the same splenic artery procedure. So glad you're ok, and thanks so much for bringing awareness to this (in addition to your VEDS info). I'd be a pile of dust now if I hadn't gone to the hospital.
Hey I am glad you are ok too!! Mine hurt the worst in the upper left quadrant of my abdomen. I remember thinking it was either my aorta or my stomach or something near that. It was so scary! I don’t remember if I had any shoulder or trapezius pain. If I did then it paled in comparison to the abdominal pain and I don’t remember :) thanks for watching and learning about VEDS too! 🤗
I had a splenic infarct, and it had that shoulder pain as well as intense rib pain.
Sorry dear..
I really fear vEDS! My father died at 34, maybe from aortic dissection/heart attack. I still have to do genetic testing, i have translucent & elastic skin, dark circles around my eyes, small upper lip & i dislocated my shoulders 4 times in my life! but i dont have bruising. Its really hard to get a gentest here in switzerland. Most doctors dont know anything about this. I fear doing exercise, laughing, sneezing, neck movement, everything! Do you believe/know if there will be a gen therapy in the future?
Hi there! I’m so sorry to hear about your dad and that you are going through this! VEDS is scary and I hope you can find some answers soon. While I don’t know if gene therapy will be an option, I know there are clinical trials in the works right now and many of us are excited about those potential treatments! As for a geneticist, you might find help finding one through the Help and Resource Center at TheVEDSMovement.org/ask. The nurse has a list of doctors around the world who are familiar with Marfan, VEDS and other related conditions. I hope this helps! And I do have to let you know I direct the Movement but it is not associated with my CZcams channel in any way. ❤️
@@TranslucentOne thank you❤️ i wish you the best!
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Hey, can you please get tested for Lymes antibodies? All your symptoms, including VEDS symptoms sound like Lymes. Lymes feeds off of your collagen by sending inflammation signals to your immune system to help breakdown collagen. Please get tested, I had a spleen rupture then a year of doctoring and I just found out I have Lymes.
If so then do not use antibiotics to get rid of it, Japanese knotweed will get rid of the Lymes spirochetes, antibiotics will cause it to hide and create a cyst.
Hey Jessica! Thanks for your concern. I have genetic confirmation of VEDS and my symptoms are consistent with VEDS. I will ask my doctors about Lyme but I suspect they won’t see the need for testing. Hope you are doing well after your spleen rupture and Lyme diagnosis ❤️
@@TranslucentOne I don’t want to possibly give false hope or make it sound like I know you better than you know your own body but I wouldn’t reach out if there wasn’t so many coincidences in symptoms!! Also, a side note, I had to actually convince my doctor to test me for Lymes but when it came back she was glad I forced her hand. I hope your health journey goes well though!! I absolutely love the detailed videos you make, I am a huge fan already and just discovered you today
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So sorry you had this, but so happy that everything went well and you found and created this wonderful team of emergency medical responders for you and your condition, you are so brave and smart, and educate us all so much, thank you and lots of love, have a good recovering ❤️🩹
Thank you so much, Laura ❤️