Good News … A Clean Bill of Health for Janet!

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!

Clint

19 thoughts on “Good News … A Clean Bill of Health for Janet!

  1. audra

    Hello
    I was thrilled to see the post on Janet’s PVT reversal. It gives me so much hope. I was diagnosed with PVT in 2008. The complications from this condition have changed my life forever. I have commenting previously on this site. Since my last post, I have officially retired from my teaching job and am trying to lead as normal a life as possible. Thank you Clint for all you have done to help people like me better understand our condition. I do continue to check this site as it is very informative and comforting.

    Audra

    Reply
    1. Clint Post author

      Thank you for your kind comments Audra.

      I am glad you find comfort and information on this site. I pray your health holds out and you can indeed live a normal life for many years to come! It’s been almost 10 years since my diagnosis, and although my pain seems to go in cycles and is a reminder that things are not all good, I am glad to still be alive. I remain hopeful that someday they will find a cure and better ways of dealing with this, but until then I just continue on.
      Kindest regards, Clint

      Reply
  2. janet

    A little followup to my story –I asked my doctor about stopping the nadolol now that my clot had cleared but since my last endoscopy showed Grade II varices, he wants to see the results of my scope from next month before allowing me to stop this medication. However, I did stop it for a couple of days prior to hearing back from him and have realized, in that short time, that it was this medication that was causing a lot of my symptoms. The “all over” belly pain, the extreme fatigue, shortness of breath, headaches, etc. all stopped with only 2 days off meds and I had more energy in one day than I have had for a very, very long time. I took my dose two nights ago and woke with that fatigued feeling and couldn’t wait to take a nap within 4 hours of getting up. The fact that Nadolol keeps your pulse at such a low rate is devastating to feeling in good health along with the issues of the actual clot. I’m certainly not suggesting to ANYONE that they stop their meds but it may help your head to know that some of your symptoms are coming from a “controlled” onslaught and not from a chronic condition. At times, any little bit helps – especially emotionally. Hope this makes some sense to some of you.

    Reply
    1. Clint Post author

      Thanks for the follow-up – makes perfect sense. I totally agree with you on the Nadolol making one tired … I live with this on a daily basis, however I have grade 3 varices and there is no way I would stop taking this med. I am on 160 mg per day and I am very tired half way through the day, but I try to nap in the afternoon if I can and it always helps. Both my blood pressure and pulse rate is closely monitored when on this med. Nadalol is the norm for esophogeal varices which can bleed and can be fatal if not caught in time.

      I have a question for you … if you have supposedly grade 2 varices and no portal vein clot – what is causing the varices?

      Wishing you continued good health!

      Reply
  3. janet

    Clint – I can’t even imagine being on 160mg of Nadolol a day and the fact that you can even move makes you my new hero. I don’t know the answer to your question but can only speculate that it was very recently that the clot cleared and the varices haven’t “caught up” yet with the new route for blood flow. I don’t have that timeline since it’s been almost a year since that last scope was done. It’s my hope that at my next scope enough time will have passed so that the varices will be reduced to normal. There’s still questions I have, also such as what happens to the collaterals that were formed, will the gastric varices also reduce, and is my risk of recurrence increased. We were so excited with the news at my visit that we didn’t think ahead but will be in touch with my specialist after the scope for some answers. Again, keep up this forum – I wish I had found it before now. You’re providing a wonderful soft spot for us to land when we need information or support.

    Reply
    1. Clint Post author

      Janet … I think I have built up some sort of immunity to the dosage of Nadolol, and not only this med but possibly others – such as my pain meds (Codeine). The range of my average pulse rate is between high 50’s to the low 60’s per minute. It was early last year that my gastroenterologist moved me from 140 to 160 and I thought that was almost a maximum, however she says no. I tolerate the dosage for now, but it things change she can titrate me even further.

      Regarding the collaterols that were formed – I too wondered about this after I received your message, but forgot to ask as I was wondering just how it were possible to still have varices without a clot. It just goes to show you how little I actually know in the long run, however I recently had a family doctor tell me that I probably knew more about portal hypertension then he did! I guess it would be pretty hard for any one doctor to know everything there is to know – so I thank the Lord for specialists! Please keep me informed about your follow-up – I am very interested in hearing from you again. Thanks for enlightening us all – I am still excited for you! Blessings, Clint

      Reply
  4. janet

    Quick followup – had my gastroscopy today and am down to Grade I varcies with very little gastric inflammation and no mention of gastric varices. Only followup needed is repeat scope every year for “maintenance” and I feel blessed. Looks like I’ll still have to stay on Nadolol 20mg every day (or so) but can work my way through that. Still don’t know when the clot released but have a feeling things happened quickly once it did and hope and pray that some of you can someday write and tell us of your good news. Godspeed.

    Reply
    1. Clint Post author

      Thanks Janet,

      Again … this is good news. Grade 1 is the lowest score for a bleed, and of course the higher the number the greater the chances for a bleed. Pray you continue to thrive. You know that 20 mg of Nadolol every day is very low also – doctor’s likely want to err on the side of caution. If it makes you feel even better, I am on 160 mg per day.

      Take care,

      Clint

      Reply
  5. Zhimin Guo

    Hi Janet and Clint,
    We found this site last night. My son, Sirui Wang, he is 4 years old and was diagnosed with portal hypertension 2 years ago when he was 2. At the time of the diagnosis, his portal vein is patent, but since no other reason was found, he was diagnosed portal vein thrombosis and portal hypertension. Although no clot is observed, the cavernous transformation has formed which cause the persistent hypertension of the portal vein; this is what the doctor said. 2 years past, recently, occult blood found in his stool, so he had an endoscopy which showed a big esophageal varix and two lower grade varices. The big one got banded, and the doctor strongly recommends him to have a second endoscopy in 4 weeks to do the other two varices because they believe the other two will get bigger after the big one got banded. How much i hope Janet’s miracle could happen to him. His portal vein is patent, but why his condition continue progressed? I don’t even know if we should have the 2nd endoscopy because if all the varices has banded, then I worry the pressure will go to his stomach which already has some dilated vessels. Who can tell me what we should do now for him? Should we get an 2nd opinion, can you recommend a best pediatric GI specialist in this area? Also, Clint, I read your post saying you often have iron deficiency, that is the same to my little boy too. Nobody is telling us why he is iron deficient; do you know your reason? Is it related to the PH? I might not expressing myself well here, because it’s a long story as everybody else’s. But can I get some contact information of other kids who have PH? Any information would help. Thanks a lot! Good luck to everyone.
    Zhimin

    Reply
    1. Clint Post author

      Dear Zhimin,

      I am always sorry to learn about anyone who has our condition, but more so for children. The good news is that sometimes children respond better to treatment as atrophy in the arteries is not as prominent as it is for adults. Also there is very good success with the Rex Shunt procedure if one’s child does not have other complications. I am not saying this is the answer for Sirui, but it may be worth looking at if at all feasible to do so. You did not say where you were from, but maybe I can direct you to a hospital or physician if you reply to this message?

      As far as banding is concerned I know many people through this blog that have had that done, and they are still plodding along year’s after, however the battle continues for them and they have all shown good success so far with the medications used to treat portal hypertension. Blood thinners seems to be the norm, but the most important drug is Nadolol (beta blocker) to lower the heart rate and curtail pressure on the varices that will develop due to the portal vein being clotted. Another side effect of the condition is that the spleen tends to enlarge as the splenic artery is tied to the portal vein. My spleen has been enlarged for many years and I have had no pain from this, however I do have to vigilante on staving off flu’s or colds if I can avoid it so I tend to sanitize and keep as clean as possible. I also make sure my inoculations are all up to date, as being sick with something else can complicate the condition. So back to the banding – I would say if the varices is large the doctor’s are basing the need for banding on the grade score of the varices. In
      Canada where I live, the grades are from 1 to 3 with 3 being the highest number. In the US I was told they are graded on a scale of 1 to 4. So it may be a good question to ask Sirui’s doctors how they are determining the need. When the portal vein is clotted it causes varices to form in the oesophagus and the stomach, but also it will cause congestion in the bowels and the upper region of the chest. When there is a clot of this nature the blood will re-route itself and cause many arteries to expand as they are engorged with blood. So in many ways I think your doctors are seeing that they have to band the varices before they haemorrhage and if this is the case it becomes extremely dangerous for your son as the doctors will have to stop the bleeding and keep the airway open at the same time. (I am not trying to scare you by telling you all this, but you have to be aware of what could happen). All being said, if you have the chance to get an second opinion it may help you in determining what you should do next, or if anything verify that the first doctor was right.

      On the subject of iron defiency, I have to have iron infusions every 4 months because I have slow bleeding in the varices of my stomach. My platelets get low so that is another thing to watch for as the doctor’s like to keep them high in the event of a serious bleed, plus to keep my energy levels up. Of course my energy levels are low sometimes, and this is due to the nadolol (Beta Blocker) and the gabapentin I take have to take for the occasional bout of severe bowel pain as associated with the arteries being engorged in that region.

      Janet’s miracle is one that many of us would want regarding this condition, and I believe nothing is impossible with God, but we have to keep in mind that sometimes we have to contend with things as they are. It’s been over 10 year’s since my diagnosis, and I believe I am alive today because of prayer and the peace that God has given me all these years. To that end I will continue to pray for Sirui’s complete healing, and if not that God’s peace will be upon him and the rest of your family at this most trying time.

      I know much of what I have stated above seems very negative or scary, but you have to keep plodding along. Please let me know what else I can do to help you out regarding the condition. When you post it is very helpful to others who are also in the same position as you, and hopefully you will take consultation in the fact that you are not alone in your journey.

      All the best,

      Clint

      Reply
  6. Zhimin Guo

    Hi Clint,
    Thanks so much for your reply. We are in Colorado, USA. His GI is one of the GI specialist in Denver Children’s hospital. But, recently, we have had hard time to talk to her after Sirui’s condition changed. We were always told by her nurse that SIrui needs to to this to do that, but when I asked to talk to the doctor herself, it always take days. That’s why we want a 2nd opinion too. About the banding, you said you have grade 3 varices in your esophagus, then why yours weren’t banded? What’s your doctors thoughts on this? Sirui is iron deficient, which I think it’s from the slowly loss of blood from his stomach varices like you, so I think his stomach varices is worse than his esophageal varices in his case, and that’s why I worry that banding all of his esophagus varices will cause more problem on his stomach which I heard no good treatment. He has enlarged spleen and often anemic which will gets normal after taking iron supplement. How do you do iron infusion? I’ve never heard of it.
    As far as the beta blocker, his doctor does mention it but in no intend to prescribe it for him so far. He is only 4, I don’t know if he takes this medicine, can he go to school normally and study normally?
    Like you said, I want more people have the similar condition to see the post so that we can fight together.
    Best,
    Zhimin

    Reply
  7. Zhimin Guo

    Hi Clint,
    Thanks so much for your reply. We are in Colorado, USA. His GI is one of the GI specialist in Denver Children’s hospital. But, recently, we have had hard time to talk to her after Sirui’s condition changed. We were always told by her nurse that SIrui needs to to this to do that, but when I asked to talk to the doctor herself, it always take days. That’s why we want a 2nd opinion too.
    About the banding, you said you have grade 3 varices in your esophagus, then why yours weren’t banded? What’s your doctors thoughts on this? Sirui is iron deficient, which I think it’s from the slowly loss of blood from his stomach varices like you, so I think his stomach varices is worse than his esophageal varices in his case, and that’s why I worry that banding all of his esophagus varices will cause more problem on his stomach which I heard no good treatment. He has enlarged spleen and often anemic which will gets normal after taking iron supplement. How do you do iron infusion? I’ve never heard of it.
    As far as the beta blocker, his doctor does mention it but in no intend to prescribe it for him so far. He is only 4, I don’t know if he takes this medicine, can he go to school normally and study normally?
    Like you said, I want more people have the similar condition to see the post so that we can fight together.
    Best,
    Zhimin

    Reply
    1. Clint Post author

      Dear Zhimin,

      I am unaware of who may be the best GI in your part of the world, but I always recommend people contact Dr. Superina at Children’s Memorial Hospital in Chicago as he is one of the best specialists in your country, if the not world when it comes to dealing with Sirui’s condition. Dr. Superina has successfully performed the Rex Shunt procedure for over 140 children and on a world-wide basis there have been over approximately 300 worldwide. If Sirui does not have any further complications he may recommend this life saving surgery, or possibly another procedure to help the situation.

      Here is the contact information:

      Dr.Riccardo Superina
      Lurie Children’s Hospital
      225 E. Chicago Avenue
      Chicago, Illinois 60611
      Call 1.800.543.7362 (1.800.KIDS DOC)
      Appointments: 312.227.4000

      You may review a post I made over a year ago concerning the whole procedure where there is a video of Dr. Superina speaking about the Rex Shunt. Here is the link for that: http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/

      At this point the Rex Shunt has successfully been performed on children, and unfortunately the few attempts on adults have not worked. 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. Ideally the procedure works best on children under the age of 5, however there are older children that have had the procedure done and they continue to thrive well.

      My varices cannot be banded because I have an unknown genetic cause for clotting, and I am on heavy duty blood thinners to stave off any further clotting. They would not band me or do any surgical procedure as it would compromise my life even further. Under normal circumstances this is not a concern for most people, but for me I would continue to bleed and it would be most dangerous. In my case, the fear is that when the band causes the varices to slough off, it leaves an ulcer and that ulcer would continue to bleed due to thinners. The varices I refer to in the stomach are on the upper part near the esophogas. When heavy bleeding happens in the stomach, the stool will turn black and this is referred to as melena. I had a bleed in 2004 in which this took place, and I came close to being transfused, but fortunately the bleeding stopped in time.

      In regards to banding the esophogeal varices and causing the varices to worsen or bleed in the stomach, I really do not know the answer to that question. A clot such as this causes many arteries to engorge with blood and this is referred to as congestion. The blood has to find another route so veins that normally would not handle the volume

      An infusion is given intravenously and usually takes from 4 to 6 hours. I am not sure how or if this is the same for children or not, but it is a question you can ask for sure. The formula is referred to as iron dextran. You might also ask about Sirui’s platelet counts as that is a determining factor for iron infusions. My platelets dip low after a few months so the iron infusion keeps them high which is important.

      When it comes to prescribing beta blockers for children I don’t know what the criteria is, but this is an important medicine to lower the heart rate and keep pressure down in the varices to prevent bleeding.

      Through the dialogue I have had with fellow sufferers and their loved ones around the world, I have learned much, however never take what I say as the final word. There is much information on my blog, but there is another source on Facebook you can also connect to where parent’s of children who have had the Rex Shunt or are dealing with the condition post to share their own stories.

      Here is the link: https://www.facebook.com/groups/4496581222/

      I hope this helps? I will continue to pray for little Sirui. There are many mom’s on the blog who can also come alongside of you, or if you wish I can give you their contact information and you can speak to them personally. They are a great bunch of people and will show you phenomenal moral support, and many also will pray for your son.

      Kindest regards,

      Clint

      Reply

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