Thanks for your post. I am truly sorry to hear of your bleeding episodes and my heart goes out to you. The Rex Shunt and a few other shunt procedures seem to be successful for children in particular as atrophy of the veins is an issue when one gets older. I had heard that over the age of 5 it is harder for doctors to do the Rex Shunt procedure, but one has to be the ideal candidate before consideration is made in all cases and if there are other complications of course this would play into the process. Now there is a procedure called the Sugiura procedure which was developed by the University of Tokyo and has showed some success to date. See: http://www.ncbi.nlm.nih.gov/pubmed/8042326 I have been meaning to write an article on this for my blog, but can’t seem to get information that is understandable for me to digest and re-write for the benefit of anyone needing a layperson’s view of it. The procedure was talked about in my case, and I would have easily forwarded my imaging to the doctor in Chicago who I believe has attempted a few of these, however my condition is considered to precarious to tamper with as I have to be so highly anti-coagulated for fear of further clotting. In your case it may be different so I am going to suggest that you contact Dr. Riccardo Superina at The Childrens Memorial Hospital in Chicago so maybe he will consider your case or refer you to another hospital/doctor who could at least review your situation and go from there. I would also suggest to contact Dr. Jean Emond at New York Presbyterian Hospital as I have been told by others that he is a good surgeon and may have some ideas for you? See contact information posted below. Please keep me informed if you hear of anything – hopefully this helps? Thanks again for your post! Regards, Clint

Dr.Riccardo Superina
2300 Children’s Plaza
(707 W. Fullerton Ave.)
Chicago, IL 60614-3363
Call 1.800.543.7362 (1.800.KIDS DOC)
Phone 773.880.4000

Dr. Jean Emond
NewYork-Presbyterian Hospital/Columbia
PH Room 14C
622 West 168th St
New York, NY 10032
Phone 212.305.9691

I have been diagnosis with portal vein hypertension over 30 years ago and recently learned it was caused by thrombosis. I do not qualifiy for a liver transplant because my liver and liver function tests are fine. However, I have had 2 bandings and numerous bleeding episodes since first being diagnosis. I am currently on proponol and also take lasix for the ascetis. My hepatologist informed me that if the bleeding starts is just to keep having the bandings. I should explain that the bleeds are massive requiring 2-4 units of blood being transfused. Is there any other procedures are surgeries that you can suggest to help stop the bleeds? The bleeds are becomming more frequent at least 1time a year.

Thanks for your inquiry. Sorry to hear of your health situation. Sounds like you had a successful TIPS operation, and if you have a chance I would not mind hearing how long ago this took place and what kind of stabilizing meds you are on right now.

As far as a low sodium diet is concerned I have asked this question more than a few times in the last 10 years to see what may helpful to the specifics of portal hypertension. The last time I asked was at the beginning of this month (Jan. 2012) and was told exactly that there was nothing specific, because of the rarity of our condition. My problem with Portal Hypertension is all the related bowel issues due to the arteries in the lower part of the bowel being engorged with blood from the portal and spleenic vein clots. There are certain foods I abstain from, but as yet I have not been able to pinpoint what sets me off and causes severe pain at times. All being said, I know you have educated yourself in foods with low salt and at this point that is a good start until someone comes up with something specific to the condition. To help you and others who may be reading this I have done “some” research that may elighten you further (see links below). Before I do that though I want to point out that the DASH diet below is something that I have heard may be helpful to anyone (especially those with hypertension) who need to be on a low sodium diet.

http://heartfunction.ktp.utoronto.ca/modules/UHNsalt.pdf (More simple guidelines for what to eat)
http://dashdiet.org/ (The DASH diet)
http://www.ehow.com/how_5045419_create-low-sodium-diet-plan.html (Creating a low sodium diet plan)

Keep fighting,

Clint

I completely understand your frustration over this as I myself and many others I know feel the same way. It would seem simple enough just to get a liver transplant, but because your liver is healthy it would be highly unlikely for that to happen. Secondly there is no clot busting method available but there is a procedure called the Rex Shunt which unfortunately works the best on children who are under the age of 5 years old. The reason for the success is the fact that there is more atrophy in this vein the older one is. Unfortunately the few attempts surgeons have tried on adults patients were unsuccessful, HOWEVER there is another bypass operation that might be a consideration for you. It is called the mesocaval shunt procedure: http://medical-dictionary.thefreedictionary.com/mesocaval+shunt This may be an option to discuss with one of the doctors I have listed in the post I created a few minutes ago.

My portal, splenic, and messeteric arteries are all clotted, but to see me you would never believe I had all that going on. I had a bleed in 2004 from the varices in my stomach, and I came close to having a blood transfusion but the bleeding stopped. I have also had clots to both my lungs – and that is very scary as that could also have taken my life. Because of the treatment I am on today, and my strong faith, I believe that has sustained me over these past 9 years. I say all this to tell you that it is not the end of the world if you have to be on thinners, because they will help in the end. I am also on a high dosage of Nadolol (beta blocker) to slow my heart rate down, and it makes me very tired – however I am still ticking so that is a blessing!

Please try not to get bummed out … PVT is serious enough, but you do not have esophogeal varices and that in my opinion puts one in a more precarious situation than without. If it is any consolation to you, I and many I know have survived a long time. I know some who are not as athletically inclined as you are, but they still exercise and live relatively normal lives. Of course I always tell people not to take my word for any of this, but always ask your doctor. I do hope you find a specialist somewhere that can help and advise you and you get answers soon.

Please hang in there and keep us posted as to what you find out.

Take care,

Clint

From what I read you can get a liver transplant and they can sew the portal vein back on so why can’t they just cut the clot out and sew the vein back together?

Medicine has all these wonders for the heart and other things but they can’t remove a clot! Why? I read nearly everything on the this site and am feeling really bummed out. I can’t get transfusions so I feel my life is in jeopardy if I ever get a bleed that bad.
As I mentioned in the other post I am an athlete, is even possible to exercise or will this raise the risk of getting those varises in the esophagus and stomach?

Sorry recently diagnosed and am having a hard time mentally.
Any help or advise?
Thanks though Clint for all the good info here.
Please help with any answers to both my posts thanks.

Thank you for your comments. Yes my site is still active – I just haven’t posted much on here lately and last night was the first in several weeks.

You have had a precarious journey with your portal hypertension. Most definitely any information you can offer is most helpful to others (myself included). I have had PH for 9 year’s with complications, but have yet to have any banding done. I had a bleed in the upper part of my stomach, but not the esophogas however I have columns of varices protruding into the area. For unknown genetic reasons I have a underlying clotting condition which caused PH and I am on Fragmin injections for a blood thinner as Coumadin does not work for me.

I would be curious to know what the cause of your PH was, and how you cope on a day to day basis. Your comments are always welcome – thanks again for contributing! Trust you will not experience any further complications!

Kindest regards,
Clint

I looked at the article you sent and it is very interesting. I am not sure what the overall consensus is amongst medical specialist’s regarding what I could decifer on the page, but much of the latest research on Portal Hypertension originates from the University of Barcelona in Spain. There seems to be continuity on the overall treatment of PH though and that seems to be the use of Nadolol (beta blockers) to keep the blood pressure down in order to curb bleeding from the esophogas.

Thanks again for your input and please let me know if you hear of anything new in the area of treatment for this condition.

Take care,

Clint