Sticky Blood-Hughes Syndrome Support

IVC Filter/Clot Catcher Removal after 12 years, surgeon said its the worst case he'd ever seen! Sticky blood & filters are a bad combo.

IVC Filter/Clot Catcher Removal after 12 years, surgeon said its the worst case he'd ever seen! Sticky blood & filters are a bad combo.

So I managed to copy this onto a new post. I've still not seen the thrombosis /haematology doctors but apparently they are coming to see me today, where have I heard that before?! 🤔

I have attached a photo of the filter with my thumb beside it to give you an idea of the size of it, the metal side struts had to be collapsed back through the vein, and apparently that is a piece of my vein wall still attached to the top of it😲!

"The filter is out but the surgeon had a major shock when he first imaged it, in fact he said it was the worse case of filter embedding, scarring and erosion he had ever seen. The entire filter, rather than being inside the inferior vena cava vein, had eroded through the vein wall so that the filter encased the vein!

I was in surgery for almost five hours and lost a fair amount of blood but he managed to avoid open surgery and to retrieve it via my veins using three puncture sites, my neck and both groins.

The entire top apex was encased in scar tissue and there was only one tiny hole in it where he was able to pass a guide wire through to get to the filter. All the returning blood from my lower abdomen and legs has had only that small hole in the scar tissue in which to return back to my heart. It's no wonder then that I have been so unwell and in such terrible abdominal pain since 2015 and then house bound for the past year and a half, with excessively high heart rates and acute breathlessness

Apparently my poor heart has been compensating for this lack of returning blood for many years, as the blood flow back up to my heart declined and worsened! With my sticky blood and delicate EDS connective tissues, it was a a disaster waiting to happen and should never have been put in, well not a permanent filter anyway.

My main abdominal vein has been left so scarred and narrowed that he had to insert a stent in it, in order to keep it open and post op I feel worse than I did before.

My lovely cardiac/respiratory doctor Dr Marino came to see me today and explained that it will take my heart some time to get used to the new increased blood flow and pressure and after having a listen to my lungs told me that I also have fluid on them due to being intubated, which is exacerbating my breathlessness and reducing my saturations. At the moment I'm on 24 hour oxygen to help keep my saturations up and to ease the pressure on my heart while it learns to adjust.

I almost didn't go ahead with the operation, as Dr Breen didn't come and see me on the ward the day before when I was admitted as promised and has yet to come and see me post op, which is incredibly disappointing.

It may not have been a her fault pre op, as the ward I was supposed to be admitted to had no beds available and so I was sent to the Simon Patient Lodge, the in hospital hotel instead of being on the ward.

I only went ahead with it because the interventional radiologist who was going to perform the operation convinced me that he was fully aware of my clotting history and as such would keep me on a heparin infusion throughout the operation. He also said that he would keep me on heparin injections post op, until I am seen by the thrombosis team.

He actually showed me the ultrasound images of my operation from start to finish and when I saw that the filter was outside my vein, I was utterly gobsmacked that he managed to get it out, given that he had to collapse it back inside the vein which would have punctured the entire circumferance of my vena cava! He said that he had to apply pressure on the vein for a very long time afterwards in order to stop the bleeding!

My haemoglobin pre op was 9.7 so anaemic and post op 7.4 so very anaemic, so far I've only had IV fluids but hopefully if I eventually see the thrombosis /haematology team, they will arrange for either a blood transfusion or iron infusion to rectify this.

It's been incredibly frightening going through this operation and recovery without the support of the thrombosis doctors, especially as I am feeling what is either blood clots or scar tissue debris passing through my heart and into my lungs, whenever I move around, say from bed to commode. I've also been having head and eye pain, zigzags and peripheral flashes and very blurred vision, in fact I have to say that l feel a bit like a ticking time bomb😮

Today my face was so flushed and burning it felt like I'd exposed myself to several hours in the sun. It is butterfly shaped on each cheek but not really on my nose, so I don't know if it can be considered as the classic lupus butterfly rash. If I can work out how, I might try and post a photo to see how it compares to other people's.

I might have to copy this post to a separate post tomorrow, as I'm not sure if this one is still being followed. Hope that I made sense above, as I don't really feel in charge of either my brain or body at the moment 😖. "

22 Replies
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I really hope you feel better soon x

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A very traumatic experience!

Wishing you a complete and speedy recovery.

With good wishes,

Ros

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That’s fascinating, actually! ( sorry...) I’ve always wondered what they actually were. When my mom had one put in, her doctor called it a ,” bird cage.” I thought that was strange. Now I can see why it was called that!

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KellyInTexas, yes the type I had does look like a bird cage, the older type looked like an umbrella frame with no fabric on. They had spiky metal legs and I think there's been multiple law suits in the US due to the metal struts breaking off and migrating to the heart and lungs, or piercing the bowel or other organs!

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I had no idea the filter was so large!!

Nancy in West Virginia

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I didn't know it was that big when it was put in me twelve years ago but I've been doing an awful lot of research about my permanent Optease IVC filter once I knew it was coming out! Apparently the inferior vena cava is about 2-2,5cm in diameter but it dilates to even wider when the diaphragm passes over it as we breathe and also when we strain, say to pick something up.

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2.5 centimeters is about an inch in diameter. Probably a little larger around than your thumb!

Nancy in West Virginia.

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Nancy in West Virginia, the interventional radiologist showed me the ultrasound footage of my operation and explained about the veins size etc, it's the main vein returning all the blood from your lower abdomen and legs, so I guess it needs to be quite large.

I am stunned that the scar tissue covering the top of mine only had a tiny hole in it, where the returning blood had to get through, I'm actually amazed that I've stayed upright at all for the past couple of years, I should have been passing out repeatedly, it's amazing how the body learns to compensate over time. I forgot to ask the interventional radiologist if my body had created collateral veins in my abdomen, in order to divert the blood around the obstruction in my IVC, that's another reason why I want to speak to the surgeon again before I'm discharged.

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Since the filter is now gone, you have GOT to feel better.

I knew the aorta was huge but the size of this vessel with filter has surprised me. And the filter almost destroyed your vessel!

I wish you LOTS of luck!

Nancy in West Virginia

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Nancy, Thankfully the filter was in my main abdominal vein rather than the abdominal aorta. Had it been in the abdominal artery I would probably have bled to death but the blood pressure in the vein is not as high thankfully so they were able to stop the bleeding.

I think that I have been incredibly lucky as the IVC vein sits right beside the abdominal aorta, my filter had eroded outside of the of my abdominal vein, meaning that the metal filter struts could have pierced or penetrated my internal organs, bowel or even my abdominal aorta!

Someone must be watching over me from above right now! 😱

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Wishing you a speedy recovery. The last few days being a trauma to body and mind - will take time to get over.

Sending you a big hug xx

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Thank you so much, I would just like to be treated as a person, not as a set of test results. I want to have a choice about my ongoing care and not to keep having these choices made for me by doctors who have never even met me.

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Sing it, sister!

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Yes it's easy to be bold and say how I feel on here because I know I have your support and that nearly everyone on this support forum has probably been in this type of situation before😩

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stomp your feet and refuse to,leave until you have proper anticoagulation. This happened to me after having open heart surgery and less then 16 hours after getting home I had a full blown stroke, hence, stomp your feet if you must. Best of wishes, I hope you nothing but good health, my thoughts and prayers are with you, Cindy

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Oh no Cindy that is terrible! It's why I need to speak with the thrombosis team to make them aware of my current neurological symptoms.

Just walked the very short distance from my hospital bed to the bathroom just outside room, I have oxygen on and need the aid of my disability rollater for support to manage to walk there.

My oxygen saturations dropped to 79% when trying to get out of the bathroom and my heart rate had just gone up to 147bpm as I got myself up and off the toilet.

I took photos of my finger pulse oxymeter showing the high heart rates and low oxygen levels, to show the doctors if I ever see them because the ward nurses are not witnessing this happening to me. The nurses only record my blood pressure, heart rate and oxygen levels while I'm lying in bed at rest and with oxygen on, so my oxygen levels are being recorded as being at 97-99% on my notes.

I can't seem to get the doctors /nurses to understand that as soon as try to move myself out of bed and do anything, that my oxygen saturations are dropping and my heart rates still going disproportionately high. It's so frustrating.

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I’m so sorry your experiencing this. I understand your frustration and also the fear because you know what can happen. I do know if you fall down they will all come running, then they will notice. Do you have call bell within reach?

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Yes but I try not to use it as I know the nurses are so busy with what they consider to be the very unwell patients.

When I called for assistance the other night, as I was in acute pain and they hadn't brought me the morphine they had promised me several hours earlier, the nurse told me that I was only a vascular patient, not a heart patient and so my needs are not considered to be urgent!

What can I say to that?!

I am a high risk patient when it comes to clotting and post surgical bleeding as I'm on anticoagulation, plus I have a pfo hole in my heart and history of TIAs but apparently that doesn't mean I need any urgent care or monitoring.

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I’m sorry but you are unwell too and deserve appropriate care as well!

Truthfully, I don’t understand why they are allowing you to ambulate with your rolator without a nurse or nurses aide assisting you. You have had a dangerous intervention with this removal being so close to a major artery. I would think they would want to be monitoring you very closely in case of a rupture. I’m not trying to scare you. Ask the thrombotic team when they come in if this is a concern, hopefully this will prompt them to deal with it and the nursing staff. Best of intentions from me, Cindy

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Hi Cindy, I honestly felt that too, I wasn't even on an observation monitor overnight after the operation. Knowing that they had had to puncture through my IVC vein to get the filter out, I thought well surely I'm at risk of internal bleeding, especially as I had to be on heparin to help stop me from clotting.

I don't think the ward doctors or nurses, or the thrombosis team were even aware of how much more traumatic the operation had been than it was expected to be.

Like you say the inferior cava vein sits right beside the abdominal aorta, I think I would have been terrified pre op, had I actually known that the filter was sitting outside my vien and therefore sitting right by my abdominal aorta!

The fact that my insides feel hot and burning is worrying to me (like when I had appendicitis) but I think if I was bleeding internally that I would become feverish and my blood pressure would be terribly low too, rather than just quite low as it is at the moment.

Hopefully now I have a haematologist involved, my care will improve, I've just been told that I'm having an iron infusion which is a positive sign.

Thank you so much for your support and kindness xxx

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I’d have it no other way. Be well my friend, get some rest. If your heart rate begins to go up let them know as you don’t want your pressure falling and your heart rate up. Could mean bleeding. Get some rest sweet dreams🧚🏼‍♂️🧚‍♀️

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When is this suppose to occur, Monday or over the weekend?

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