Tonight I want to share a good news story from a comment posted on my blog earlier this evening. The story comes from Janet who suffered from portal hypertension for many years. Here is her story …
“Just found this site today and had been posting on DVT forum previously. Have had PVT for 9 years making it a chronic condition and also had one episode of bleeding esophageal varices 3 years ago. I have had numerous endoscopies with 5 sessions of banding and at last scope had Grade II varices. I have been on nadolol to keep the pressure down and was restarted on coumadin a year ago to help with the liver pain associated with this condition. The feeling was that thinner blood would flow more easily through the collateral veins that had developed and it did help with the discomfort. Of course it was pretty unnerving to know I had very thin blood with a history of bleeding varices but I was willing to try anything to try and get a normal life back. It was also found that my mesenteric and splenic vein had thrombosed but fortunately, my intestines never became ischemic. Today I went to my specialist for my annual checkup and Doppler Ultrasound showed normal flow through the portal vein – main, right and left! Had no idea after all these years that this condition would reverse itself but can only thank God and my doctor that it did. I can stop the coumadin and the nadolol and hopefully get the stamina back to start exercising again and, along with good nutrition, back to my old self. I tell this story to let you all know that it can happen, and not only in the acute stages. The clot was attributed to 9 months of hormone replacement therapy so my liver was healthy to start and luckily remained healthy throughout this whole process which I’m sure helped in the overall picture. My heart is with all of you, I know what you’re going through and hope and pray that my story becomes your story. Godspeed”.
So there you have it. Up until about a month ago I had not heard of anyone with portal hypertension (PH) being completely healed of the clots and its accompanying symptoms except for another gal whose condition I recently learned had cleared up, albeit in the supposed “acute” stage of portal hypertension. When I asked my specialist about this recently she confirmed that PH can in rare cases can clear up so the possibility is there, and beyond that my understanding was it was very unlikely. With a fantastic outcome such as Janet’s I can only hope and pray that this would eventually be the case for many of you, your loved one, or possibly for myself. Recent imaging I had done showed extensive congestion of arteries due to the clotting, and with that I have bowel ischemia so I don’t feel too hopeful sometimes, but anything is possible I guess so I’ll just keep praying and trusting.
Keep the stories coming!
Thanks so much for your reply. Thank you for the pray.
In your post you say: “At this point the younger the patient, the better the response for the very reason that atrophy sets into the arteries the older a person is.”. What arteries get into atrophy you mean here? Did you mean the portal vein?
I am checking the face book group now. Thank you for the recommendation of Dr. S. The only reason I want find another specialist is because Dr. S is a surgeon; I am afraid that he is in favor of surgery instead of conservative treatment. I’d like to know what the best is for Sirui’s case. In Chicago Memorial Hospital, are there other internal doctors who is specialized in this matter?
I don’t want to scare you but atrophy sets in to arteries or organs in which the blood does not reach. It is hard to explain the technical “in’s” and “out’s” of this and I have never been able to decipher some of the articles I have read on the subject, but only can say what I said above. People do live a long time with this condition and I personally can tell you that I know of two people who have lived for several decades, and I guess I could be added to that list because it has been 10 year’s since my diagnosis. Also I have grade 3 varices, and fortunately I have not had a bleed from them yet. One of my doctor’s told me that some areas can become gangrenous if the blood does not feed that area, and as negative as that sounds that is the truth. In a person with portal vein thrombosis, yes atrophy can set in.
If Sirui is a suitable candidate for a Rex Shunt – this is the best treatment he can receive over conservative means, but that is a decision for Dr. S if you are considering this route. I can only tell you what I know and the stories of children who have had the procedure. I am by no means the best person to talk to on the procedure, but I do have names/numbers of Mom’s I can send you via email if you wish? Your email is not shown on this blog for security reasons, but I have it as an administrator of this blog.
I’m not certain if there is another person at CMH in Chicago who specializes in this disease, as it is rare.
Hope this helps?
Thanks so much for introducing me into the face book group of PH. I got a lot of prays and bless and suggestions there too as you’ve given me.
No problem on the referral. I hope and pray you find some
answers for Suriu soon!
And yet another followup to my ongoing saga. What was originally thought to be a reversal of my PVT was actually a misread on my last ultrasound. Too good to be true and would have been a miracle for sure. It was a collateral vein that had formed and was lying directly over the portal on exam and mistaken for the portal. This was discovered when I had another bleed in October, which turned out to be from taking one Aleve and had nothing to do with my esophageal varices as they were still Grade I. However, an MRI done showed the clot was still there, chronic, although my body has grown numerous collaterals to accomodate the blood flow and my liver remains “healthy”. I had been feeling somewhat better during the summer but over the last few months the old feelings of extreme fatigue, belly pain, etc all returned. My recent bloodwork also showed a clotting deficiency and for that reason have been put on Coumadin for life. The upside of that is that with the blood thinner and blood flowing more freely through my body, I feel so much better and 80% of the pain has resolved. My mesenteric and splenic remain clotted also so I feel lucky to be feeling as well as I do. I no longer need the Nadolol due to Grade I varices and good flow to the liver but do need to get biannual endoscopies and yearly ultrasounds for followup. Clint – glad to hear you’re recovering from your recent hospitalization and know we’re all thinking of you and what you’ve been through.
Thanks for posting and also for your encouraging words! Sorry to hear of your ongoing saga, and I am encouraged that your doctors are keeping things at bay for you with the Coumadin. I have said this before and I’m sorry to be repeating myself if you have read it, but a clot in the portal vein will only dissolve in the acute stage and that is hard in itself to pinpoint. The positive side to developing collateral veins is that they can still keep blood moving, and when it comes to keeping the liver working this is a good thing indeed. The bad part is that operations of any sort can be extremely dangerous. Keep up with the testing, and if you suspect any changes go in immediately – I’m speaking from experience here. Keep me in the loop and post anytime – your input is so valuable! Take care, Clint