Portal Vein Thrombosis

[Alina2017]

Hi everyone, I was diagnosed with PVT in Sept 2017 and have been on blood thinners since then, I don’t have any follow up appointments with anyone, just told that I will be ok as I’m on blood thinners but I don’t feel ok😢. Is there anyone with PVT that can help me ?

[GabiRott]

Hi, sorry to hear about your PVT. I don’t think I will be of much help but I will give you a little background on what little I know. My daughter apparently developed PVT 2 years ago. Her doctor never mentioned it so we weren’t aware of it. She hasn’t felt really well for a long time and her abdomen was always enlarged. She periodically went in to have veins tied off in her esophagus which I found puzzling as I knew nothing about PVT or even that she has it. Long story short, she went to the Hospital at the end of July because she was feeling worse, they sent her home with pain killers. She went in again and got transferred to the University Hospital. After a week there she needed up in the ICU on life Support. They did emergency surgery that night and found that she developed more blood clots which caused the death of most if her small intestine. They told us she had no chance at life. Against all odds she survived. 57 days in the hospital and she is home. She is on IV nutrition possibly for the rest of her life. Also she is on blood thinners. The thing that drives me crazy is, nobody prescribed blood thinners before this catastrophic event occurred. I can’t figure out why? From my point of view, I feel that if she had been on blood thinners from the start she may still have her small bowels and we wouldn’t have been faced with the very real possibility of loosing her. Also I want to add that her spleen is very enlarged.

[CarpeDiem11 in reply to GabiRott]

When I spoke to the Consultant at the Thrombosis clinic, I was shocked to be told that it is not routine to prescribe blood thinners for a PVT. I don't know why that is.

So sorry to hear that your daughter has suffered so much. I hope she continues to improve and is able to deal with this horrible set of conditions. All the very best to you both.

[CarpeDiem11]

With a PVT, the idea is that the blood thinners stop the progression of the clot. If you are lucky, your body will clear the clot(s) that have formed.

Personally I don't understand why no- one is following this, so you should ask for a review of this. I have had PVT, but been fortunate so far that it has cleared. Nevertheless, I am being reviewed by he Thrombosis clinic in case I want to change the type of blood thinners I am on.

I have also had regular endoscopies to eradicate varices and regular CT scans to look at the progression of the clots I had.

I would ask for a review straightaway and tell them you want to know if the PVT has resolved or is still there.

Have you ever had varices? I'm guessing yes if you have PVT. Don't answer if you don't want to , it's just if you have then they should be checking on these also.

Hope that helps? All the very best.

[GabiRott in reply to CarpeDiem11]

Yes my daughter has had verices in her esophagus and has had them tied on a couple of occasions. I have no complaint in terms of them keeping an eye on that particular complication. I am however confused about the fact that blood thinners weren’t one of the first treatments recommended. Particularly in light of the fact that her issue appears to be progressive. Her extended abdomen, her enlarged spleen, the fact that she started loosing weight involuntarily as well as the general fatigue and feeling of being unwell. It’s all very confusing yet, certainly not speaking as an expert or even someone who has any knowledge about the subject, to me it just makes sense that she should’ve been on blood thinners. We are scheduled to see her surgeon today, the one who did the surgery to remove her small bowel. It’s a routine visit but I am hoping to maybe get some answers.

I appreciate the feedback and I’m glad to hear that you are doing very well after having been diagnosed with PVT.

[CarpeDiem11 in reply to GabiRott]

Hi GabiRott, my question was actually for the original poster! Anyway, nice to hear from you. I too would have thought that blood thinners would be the first line of attack, but as I said above, the Consultant said they don't usually give blood thinners for PVT and I didn't ask why.

My PVT had spread into other veins, and had spread quickly, so maybe that's why I was given them. However, I had to have several endoscopies first to make sure all varices were eradicated. If you are put on blood thinners, with varices present, then if they burst, there is the risk that you will bleed much more quickly, which is obviously an issue.

Maybe they didn't put her on the thinners because she hadn't been through an eradication of varices at the time?

Don't know if this sheds any light on things, but I hope you get some answers soon. All the very best.