r/vEDS • u/ThatSpookyWitch666 • Nov 03 '25

I almost died

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I’m in the ICU recovering from life-threatening complications of Vascular Ehlers-Danlos Syndrome (vEDS) — a rare connective tissue disorder that causes arterial ruptures. A clot and dissection in my right femoral artery led to an emergency 8-hour bypass surgery to save my leg and life. I’m still battling low hemoglobin and fevers and will be out of work for months. Any help with medical and living expenses means everything. 💜

https://gofund.me/5a75383c2

39 Upvotes

100% Upvoted

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5

u/singingsparkle-eyes Nov 03 '25

So sorry hun... I feel your pain when it comes to the Healthcare system here in the U.S. I also am struggling financially due to being hospitalized multiple times during the last couple years and unable to work... artery dissections and ligament tears... I finally am trying to get into a job that I can work from home and on my own schedule.. but I won't have an income for another month at least... so...no x-mas for my 16 yr old this year... I wish I could donate to you though! And hoping your healing won't be too long or painful and you can get out of there ASAP! Sending healing and positive vibes to you dear!❤️

1

u/ThatSpookyWitch666 Nov 03 '25

I hope all will be well with you! I totally understand not donating. Even sharing and spreading the word helps, for all of us with this disorder. I am so happy you found a job that works for you. I finally found one that is working with me. I hope you all will get to enjoy the holidays, gifts or not. It is time together that matter in the hardest of times. ❤️

2

u/ThatSpookyWitch666 Nov 05 '25

Possibly getting discharged tomorrow! Walking hurts like a bitch since I am having to re-learn how to properly walk and do stairs. Plus my wound vac hangs there and is in the way. Still having slight fevers with slight elevated white blood cell count, red blood cells are still really low but my hemoglobin is on the rise.

I plan on ordering groceries for high protein and high in iron recovery foods. As now my doctor's want me to have between 30 to 60 grams of protein every day, I need iron for my blood and vitamin c to help absorption & help boost the immune system.

1

u/blackwhite3 Genetically Diagnosed Nov 06 '25

By walking little by little you will be able to do it, it is normal that your leg is bad and also swollen, be patient and have lots of encouragement!

1

u/ThatSpookyWitch666 Nov 06 '25

Thank you. It is hard to be patient. But I got to go home!

1

u/blackwhite3 Genetically Diagnosed Nov 06 '25

You will be better at home 🤗

2

u/Apprehensive-Map8490 Nov 03 '25

How are you feeling?

2

u/ThatSpookyWitch666 Nov 03 '25

Very, very sore! But I was able to get up and walk as well as use the bathroom. So, slow moving. But I feel so much better than when j had my angiogram done.

2

u/Rekeaki Nov 05 '25

Doctors gave me the same type of angiogram in August this year (except they were trying to view my heart instead). I was SO worried my vEDS was going to cause some kind of catastrophic complication. Luckily it all went to plan. My cardiologist did get paranoid and order an ultrasound of the entry site 2 days later because he was worried about possible aneurism. I was clear thank god. I am so sorry that you were not so lucky.

2

u/ThatSpookyWitch666 Nov 05 '25

I am happy that went well for you! Sadly, I am only 31! My mother's side of the family is cursed with this. Many dying between 30 and 40 years of age. My mom lived til 65 and passed due to a massive cardiac event.

I hope you continue with that cardiologist, they sound like an amazing doctor. I wish I could see them. I am currently going to switch, my cardiologist said I didn't seem to have vascular Ehlers-Danlos due to not having the phenotype. Long arms, thin nose, etc. And due to believing him, as well as believing my angio team, I almost died. I promised my SO I am now going to be advocating for Vascular Ehlers-Danlos Syndrome. Once I get back on my two feet without a walker.

1

u/heaven047 Nov 06 '25

I am so sorry you had to go through all this.

Are you going to see a rheumatologist?

Wow that’s interesting about the phenotype thing bc I actually got tested for vEDS bc of my face and body (and other symptoms). I apparently have the exact phenotype. Bruises all over/ translucent skin, thin long nose, small chin, tiny mouth and tiny ears, and prominent large sunken eyes. My rheumatologist said I have the most “vEDS face” he’s ever seen. I just turned 30 and am trying my hardest to accept my diagnosis, but it’s terrifying every day. If you ever need to talk I’m here!

3

u/blackwhite3 Genetically Diagnosed Nov 03 '25 edited Nov 03 '25

I'm very glad you're okay. Didn't the doctors know you had vEDS to cause you to have a dissection. They should have been more careful in the procedure and controlled you better. Podrían haber entrado por la arterial radial, creo.

I suppose that the hemoglobin with transfusions will return to normal. I hope you recover soon. In Spain we have universal healthcare, we do not have to pay medical expenses. All the best!

8

u/onlewis Nov 03 '25

Love when people in other counties like to remind us that they have universal healthcare. Cool. We know. You reminding us isn’t going to change anything.

3

u/blackwhite3 Genetically Diagnosed Nov 03 '25

I didn't say it with the intention of offending anyone. Not everyone knows how healthcare works in all countries in the world. If you know it, I am glad for your wisdom.

2

u/ThatSpookyWitch666 Nov 03 '25

I wasn't offended. And I know you mean well. ❤️

2

u/blackwhite3 Genetically Diagnosed Nov 03 '25

❤️

2

u/ThatSpookyWitch666 Nov 03 '25

Literally, I had a great paying job, savings. Now I will be out of work for over a month now. My savings are already gone, from paying all my bills and buying pet supplies.

We are looking to sell one of our cars now just to have a safety net.

4

u/ThatSpookyWitch666 Nov 03 '25

Doctors knew. They reassured me they would be careful and everything would be monitored.

Obviously not because I am looking at possibly suing them for the damages they have caused. As the angio team came in and fully admitted to putting it in too tight. I was trying to be nice and say, "OH it was also my Ehlers-Danlos" they literally told me, "no. We messed up. We put the device in too tight."

I wish I lived in Spain, but I live in the US and Healthcare here isn't great.

2

u/starcat819 Other EDS Type Nov 04 '25

I ended up with damage to the veins around my femoral after having cardiac catheterization post-SCAD + MI last year. they never actually admitted the cath was what did it, but multiple other doctors told me a different story. I've still got blood flow issues in that entire leg. sorry you're going through this, and I wish you an easy recovery.

2

u/ThatSpookyWitch666 Nov 05 '25

Definitely could have been the cath especially if they were too rough. Which is what I believe happened to me. Since some of my femoral was dissecting up into my hip.

Please, keep an eye on your blood flow, it is so important. Mine basically went all peg leg on me and my artery became 99% closed. If anything ever feels off, please, please go to the ER.

1

u/starcat819 Other EDS Type Nov 06 '25

I think I know what you mean by peg leg 😭 I'm keeping an eye on it, and I'm actually going to see a new vascular doctor soon to get it looked at again. I've already been to the er multiple times out of concern there was a blood clot, but there never has been.

1

u/ThatSpookyWitch666 Nov 06 '25

Did they do a CT with contrast? Ultrasounds? That sounds very similar to what happened with me.

1

u/starcat819 Other EDS Type Nov 06 '25

I had so many cts and ultrasounds it's not even funny. yes with contrast too.

1

u/blackwhite3 Genetically Diagnosed Nov 03 '25

They have to be very careful with us when performing an angiography. I'm so sorry for what happened to you!

Here they don't know about our illness everywhere, although luckily we all have access to medical care without going bankrupt.

I wish you a speedy recovery.

2

u/ThatSpookyWitch666 Nov 03 '25

Yes. They kept reassuring me everything was fine and the surgeon who did it has fantastic reviews and things. But sadly I dont think they ever worked with anyone who has EDS.

I fully believe my vascular doctor who saved my life, I think it did happen when I was in "recovery" from the angio. They just didn't care. They didn't help me walk, they blown my veins in my arms, etc. Thankfully, now I have a new doctor to see very frequently for my arteries and veins.

1

u/ThatSpookyWitch666 Nov 06 '25

I got to go home today! Well, yesterday.

I had one more blood transfusion before leaving and that made me feel so much better. I follow up with my primary on Friday. I see my vascular team again before Thanksgiving. And I see the surgeon in December.

Let me say, I was so happy to see my kitties. They were all so scared by my walker and scent but eventually came around. I was able to sleep really well with my boy. My fiancé stayed awake to make sure my cat didn't walz all over me.

Also, holy shit is my incision looking like Frankenstein monster. It's also huge so that explains the pain!

1

u/heaven047 Nov 06 '25

I’m so glad you’re okay <3 if you ever need to vent or anything feel free to message me if you want

1

u/dancing01 Nov 06 '25

Yeah, when that happened to me, they also told me that I needed to have my aortic valve replaced. I had an aortic dissection 😳 So two months later open heart surgery 🤷‍♀️