An absent Inferior Vena Cava

Hi Sharahhn, I'm really hoping!!! that you receive my message, I'm crossing my fingers that you do especially sinse your posting is 4 years old. I want you to know that your not alone!. I've read all the messages people have sent you on this platform and I can relate how lonely it is when you think your the only one in the world that has this, dare I call it, "the missing link". I also have a congenital absent Inferior Vena-Cava (IVC) I was diagnosed when I was in my first year of snr college, I was 14 years old, I'm now 58 years old. I'm happy to share what I've learnt over the years, having had my case reviewed in Massachusetts including my own experience. Unfortunately I'm not on facebook, so I'm not sure how to communicate with you or others privately, if you want, other than on here. I live in Australia now. Honestly, I'm so thrilled to have accidently stumbled across this site and seen yours and a couple of others with the same condition. I've spent the last 30+ years knowing that this condition effects 1 in every 12 million people world wide & yet it baffles me to think that finally! there are others out there and I am not alone. Anyway, if you or others (with the same condition) want to communicate, that would be so awesome, I really think this is a golden opportunity to establish a support network. What do y'all think? Thanks for reading this and I look forward to hearing from others. Take care!

@PaulB1980 Firstly, thank you so much for your message Paul! You have no idea how this has made me feel, just knowing that there's others out there with the same condition. I've never given up hope that one day I'd find others in the same boat.

To answer your question about how I was diagnosed..how long have you got? (lol) I was initially mis-diagnosed after the first DVT, was placed on meds for a month and my mom & dad were told that this wouldn't happen till much later in life. It was a very short period of time thereafter that I was back in hospital with a larger DVT and idiots diagnosed me as having a phyco-social dis-order haha go figure that one. To cut a long story short it took me 8 frustrating years of threating doctors with lawsuits, that I finally had an exploratory procedure and found that I had a congenital absent IVC.

My surgeon said that I would have a very short life expectancy and as a young guy, I lived every day as it was my last day.

Honestly, almost all of the doctors who I've had to deal with, are about as useless as a steering wheel on a mule! For the simple fact that my poor parents were told I wouldn't live past 21, I reckon I'm doing pretty darn fine lol.

I'm really sorry for rambling Paul but, dealing with this by yourself, as I've done for this long, this is just, I honestly cannot find the right word to describe this feeling I have. I would love to get on FB but sinse I've had my id stolen on that platform, sadly I don't think it'll be any time soon, but let me work on that.

It's interesting when you mentioned your able to live a relatively active lifestyle, and that's seriously awesome!, I think a lot of it comes down to acceptance and being able to say to yourself 'ok, well this is what I've got, I'm not going to let it beat me. And you know my heart goes out to those who do struggle, because it's such a rare condition that it's hardly talked about.

I don't know what the end game looks like Paul but I just prey that more recognition of this condition is recognized by the medical fraternity world wide. I mean, you said there's 83!!?? people, like wow!

Ok so it's 9:00PM here in Australia and I need to go and order some dinner. Please do me a favor, if you don't mind & say a huge hi to all 83 folk

One question, so I'm assuming your missing your IVC as well. Are you missing the entirety or just part of it?

I look forward to talking to you more, if you want to, it's cool if you don't, it honestly would be so cool if you do, this is so friggin awesome!

Stay well and for a friendly tip STAY AWAY from spinach AND kale!! regardless that it tastes like hairspray it screws up with the blood thinners. What have they got you on?

Talk soon.

Airborne Out

@PaulB1980 Evening Paul

Awesome to hear back from you! How'r you doing today?

Sounds like you and I are in the same boat (Kind of) with the absent infrarenal inferior vena cava, except in my case, the entire IVC from my heart, down through my entire body is missing. The blood flow, through my body and return to the heart is via the para-spinal & capillary veins.

The only down-side of this, is that I have visible capillary veins on each side of my torso and legs.

So like you, obviously the ol blood thinners are a pain in the butt to take on a daily basis but I like to think that it's one element that is keeping me alive n kicking. Unfortunately, associated with this condition, I've had to endure varicose leg ulcers over the years due to the poor circulation, luckily they seem to have ceased.

I've been taking Warfarin from the get go.

Are you wearing, if you don't mind me asking, compression stockings? They are not the most fashionable things to wear but they do reduce any swelling in the legs but assist with better circulation, especially if your experiencing pain when your exercising. I source my stockings from the US, so if you want more info, will be happy to send you the link or they may have them in the UK, I don't know.

I have to agree with the consultants remark about exercise being paramount. I still run, work out at the gym, swimming (which is really good) but the one thing that I was told to avoid is all contact sports. Other than that, I still drink, go clubbing. I

Prior to developing DVT's I was into tennis, fencing, football & soccer, so it was pretty gut-wrenching when all that came to a grinding halt.

It was interesting when I read that you listen to your body, I do the same too. I honestly cant say that I've accepted this condition even to this day but what I do know is that, it's pretty darn unique. Don't ever be afraid of it Paul, if anything, embrace it.

I'm really keen to get on this group at FB, am sorting out it out now. Where does everyone originate from?

Has anyone talked to you about diet?

Anyway dude, it's getting late here and I still have a pile of work to get through before tomorrow, so need to sign off. Look forward to hearing from you again.

Take care & we'll talk soon!