I am a 10+ year PSC patient, still waiting to be sick enough to make it onto the transplant list. However, at my most recent appointment for transplant evaluation, I was diagnosed with Portal Vein Thrombosis. My reason for starting this thread is to see if anyone else has been so diagnosed.
Commonly occurring complications were splenomegaly, esophageal- and gastric varices with or without bleeding, portal hypertensive gastropathy and ascites. Varices and bleeding were more frequent in patients with chronic PVT. Patients who received anticoagulant therapy more frequently achieved partial/complete recanalization, or clearing, or the PV. (http://www.medscape.com/viewarticle/572457) However, anticoagulant therapy is still viewed by most, when accompanied with PSC, to be highly controversial.
Has anyone under gone treatment of any sort for PVT? I am in limbo yet again, and need something to put my mind at ease about the possibility of receiving this therapy.
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Hi Pandora... I've had three instances of bleeding varices. Each one was a close call, and they can certainly be scary when it's happening. The first was in 1995 (esophageal) and at the time they chose to put titanium coils around my portal veins to ease pressure. Turns out, this may have caused more damage than good in the long run, and led to further complications. Any additional esophageal varices that have popped up over the years were solved by banding procedures. The last bleed was much more complicated (stomach) and required a TIPS procedure to save my life. But, I'm still here and I'm okay, relatively speaking. I'm not sure this answers your questions, but I hope it helps. My best advice is to never be too far from a hospital if bleeding does arise, and if you're traveling in a foreign country, make sure you know how to get to help if need be.
Hi, Pat! Thank you so much for responding to my post! It does help knowing that someone else has had some sort of involvement of the portal vein in this mess of a disease. The coiling has not been an offered option, and I am glad you told me of your experience! I WILL NOT go through that!! I was surprised to find that mine were small enough - though called “large” - to have the medication as an option. I’ve heard nothing but negative things about banding… But, now that I have this clot in the PV, and I have to start a beta blocker, that may come to an end.
I have been asked to be a part of a genetic study for the PVT - is this something you were asked?
Thanks again, Pat!!!
Nice to meet you!!!
Hi Pandora, I live in NZ, and have PVT, PSC, and Asplenia (born with out a spleen). I have to have an operation on my liver but due to PVT and a risk of bleeding they are going to do a PVT bypass operation, they are taking a vein from my leg. This will become a permanent Portal vein. :) Also they told me that I was probably born with PVT & no spleen. They tried anticoagulants years ago, with no effect. If you would like anymore information please send me a message. I hope you are feeling better about PVT and get the information you need. Regards Ellie.
Hi, Ellie. Thanks so much for reaching out to me! I must say that you are far worse off with the PVT and spleen situation than I - for this, I am truly sorry. The things that worry me primarily about PVT is that I may “throw a clot”, and then suffer all the problems with that - including a sudden stroke and death. As for the anticoags, I have held off on them until I have my next appointment in the end of April, and can have a follow-up scan to see if the PVT has progressed. If it has not gotten worse, I will probably simply monitor it (much to the chagrin of my doctors). What is most troublesome of all is that the PVT seems to have developed in 3 months. So, that being the case, I expect it to have advanced.
Have you had esophageal varices, as well? I am terrified of coughing hard because I don’t know if they will burst and bleed into my stomach - which I wouldn’t know about until in serious distress! I am also having some other issues, but they are mentioned as being associated with PSC, and hopefully you haven’t had to go through the elevated ammonia levels or sleep reversal.
I will take any experience you have had with the PVT and the anticoags that you have had to learn from! Anything you wish to share would be great!!
Thanks again for responding - I wish you nothing but positive energy and blessings in your upcoming and eventual procedure, Ellie! Feel free to simply vent, as well. I am a good listener, and have had great therapy to help me with this!
All My Best, Holly (a.k.a. Pandora)
I'm sorry to hear about the PVT. I was diagnosed with PSC in the fall of '09 and subsequently diagnosed with portal vein hypertension and esophageal varices. I've been on blood pressure meds for the hypertension for a while now but the docs have just kind of let the varices remain. I get an ERCP every 6 months or so and they check them, but no banding or surgery yet. My docs told me essentially to not worry too much about them (they are a sign of the hypertension) so long as I am responding well to the blood pressure meds.
Have you talked to them about treatment for high blood pressure? I've taken nadalol 20mg 2x daily and that's seemed to slow the varices. Not sure how that factors in with the thrombosis.
Good luck with everything.
Thanks for responding… As for the blood pressure meds, I have been on Propanolol 60mgs for the esophageal varices since the my gastro found them via gastroscopy. It was after that, at an appointment with my transplant team/hospital that the PVT was discovered. It was not there 3 months earlier. I am hoping that I am responding to the meds well - I don’t wish to undergo banding as of just yet, even though it has been 11 official years since my diagnosis - suspected I may have had it as long as 8 without diagnosis. My MELD score is low, and the rest of my bloodwork is a mess, but I am just not ready to do it, damn it!! I come from a family of strong women (my maternal Gram is 101 years old, my Mom and sister closest in age are both battling ovarian cancer, stage 3C, 8 and 11 years respectively), and I am a tough Irish Lass! This disease picked the wrong girl… However, the worst part for me is that it stems from an underlying autoimmune disorder, so once it’s done with my liver, it could move on to another perfectly healthy organ. It already took my thyroid, and nearly a vocal nerve with it. I am refusing to have it, though! The positive attitude gets lost when I am really sick - like I just had a bout of high ammonia coupled with the damn flu, of all things! That was enough to make me want to disappear… Now that I am feeling better, my fighting Irish has come back, coupled with the attitude of the women in my family and my wonderful boyfriend who never gives in to doubt, I am set to battle again!!!
I do hope you are feeling well in this oddly warm weather we are having in the North East… Early Spring is ok with me!!! Take care, and may you find at least one blessing in your life everyday!!
LOL Me again, well I went to my latest appointment, they have decided that an operation would be too risky, so they are leaving me alone! Which I am really happy about. It sounds like you are stressing quite a bit about everything. You need to learn to relax and enjoy yourself. I have had PVT since I was born, and I am now 43!!! I had three children at age 25 up, and two of those were home births before they found out I had PVT or PSC!!! Hehe, all that strain and I was fine. I don't think about all my health problems at all, I love being a mum, I love cleaning house, love walking the dog, fishing, spending time with my husband, and every other normal thing on the planet. I know that it is hard to seperate having a chronic illness and everything else going on in our lives but I have always been a happy bubbly person and never worry about the what if's, if I did I would be to scared to do anything!!!!! I hope to inspire people to battle through the bad and only see the good. I have been having issues at the moment with a team of doctors arguing whether I have a tumour in my liver (Left hepatic duct), or if it is inflammation of the bile duct I am going through every test and traveling 6-7 hours for each apppointment, but the best feeling in the world is driving up to my house, getting out of the car, opening the door and instantly being annoyed by three teenage children happy to see me!!!! AAAHHH the best feeling in the world. LOL
Here are a couple of ideas to put your mind at ease and maybe your families. I live in New Zealand and here we have medic alert bracelets, they have them in most countries but the names may differ. I have a patient number recorded with all my medical information, with that Doctors, ambulance staff can access my information at anytime 24/7.
The other thing I have done is listed my family in my cell phone, like Mum with her address, contact phone numbers, and so on. Also my husband is in my phone twice once for me and once for emergencies, he is listed as Husband emergency contact etc.
The other thing you could investigate is a monitored alarm. There are several options to chose from, i.e. I have an alarm system in my house that has two buttons you can push that sends a signal to the alarm company that I need either fire ambulance or police, plus it works as a normal house alarm protecting the house when I am not home, and even my pets are protected with a pet sensor.
One more is a personal alarm this you wear around your neck like a necklace, it is a monitored alarm and once pushed sends a signal straight to an ambulance call centre, if you don't answer the phone they instantly send out an ambulance to your property.
Well I hope some of this helps you and others, you don't have to be alone and afraid in your own home. :)