My Portal Hypertension Journey
This blog was created for those seemingly uncommon few (like myself) who are living with this often discouraging condition called portal hypertension. Through this “work in progress” I hope to encourage, inform, and provide a comprehensive forum for fellow sufferer’s, their family members, or their friends. In my personal quest to find others struggling through the side effects of this disease, I came to realize that there really wasn’t a one-stop site that provided all the things one might be looking for when dealing with a disease of this nature. All this being said, I want to extend a heartfelt welcome to you and most of all I trust you find information and solace from within. You are not alone in this journey!
Who are you?
My name is Clint Steenson, and my personal journey with Portal Hypertension began in the summer of 2002. Within months after starting a new business, the loss of my father, and 4 trips to the emergency ward of 2 local hospitals, I was shocked to learn that I had Portal Vein Thrombosis (PVT). After a week in the hospital I spent the next several weeks recuperating. Providentially for me, I was re-hired by my former employer, who I had worked for prior to starting my business to be their national sales representative. After a little over 2 year’s of employment and virtually no symptoms, I was re-admitted to the hospital in the early part of December of 2004 with severe pain and bleeding. It was then discovered that I had a clot to my superior mesenteric artery which explained the pain, and the bleeding at that time was from varices in my stomach. Again I spent another week in hospital, was released and took the next few week’s off work. I returned to my employment in January of 2005. After only 5 weeks back at work, I took ill again and was re-admitted to hospital with pulmonary embolisms (clots to both lungs).
As one may expect I take a boatload of medications which is necessary to stave off further clotting, and relieve pressure to areas in danger of bleeding due to the existing clots. It is suspected that my condition was started by an underlying genetic defect and at the time there were only 7 known defects, however all tests were returned negative. The most common and yet deadliest side effect to portal hypertension is a condition called esophageal varices. Varices are formed when arteries on the wall of the esophagus protrude inside because of pressure from the clot. Varices are graded on a scale of 1 to 3, with 3 being the most likely to bleed. Gastroentrologists can discover and grade the varices while doing a gastroscopy. In my case, my specialist discovered that I had 2 columns of grade 3 varices – grade 3 being the most deadliest. At the time of my last scope, it was determined that it was too dangerous to even check the condition and all future scopes were discontinued.
In October of 2007 my doctor’s strongly advised that I stop working as that would take much stress off my life. I heeded their recommendations, and fortunately was able to obtain long term disability benefits from my former employer, plus a government medical pension from which I understand is most difficult to get unless one has a condition such as I. As one may imagine my medications are very expensive so I am extremely grateful that the costs are covered by a plan, otherwise I do not know where I would have been without it? Of course there are the daily challenges of raising a family on a limited income, but I am still grateful for what has been provided and I carry on despite all this.
In summation, my life is filled with seemingly endless blood tests, iron infusions, doctor’s appointments, and all too frequent bathroom trips – not to mention some associated pain! Despite my condition I remain very optimistic and for the most part don’t dwell much on the negative aspects of this disease. I believe God has spared my life, and I have peace about the future. What is your story?
{ 45 comments… read them below or add one }
Thanks for your honesty and openness in regards to this condition. I hope this blog finds it way to people who need it.
I have shared your URL with my online friends. They are lifting you up in prayer!
Thanks Gail … your prayers are very much appreciated. Blessings, Clint
Prayers For PEACE Daily and Having DOCTOR JESUS/GOD Too HEAL You Daily Friend !!!!
I am the mother of a daughter with PVT. She is a twin and was born premature at 28 weeks. From birth she was one to always catch things more easily than her sister. At age 3 she was diagnosed with splenomegaly. We went through lots of testing to rule out leukemia and was incorrectly diagnosed with an autoimmune disorder. In 2009 she spent a week at Children’s Hospital when she was finally diagnosed with PVT ( due to an umbilical catheter used when she was born). Since then she’s had 2 endoscopies that show both esophageal and gastrointestinal varices. She is taking Nadalol and prevacid right now and has not had any bleeding or banding (praise GOD) but we are not content to just sit and wait. With much prayer and research we have visited many specialist, compared surgical procedures and have decided to consult Dr. Superina for the Rex shunt procedure. We have an appointment in October and are praying that this will be the answer. God has protected her health through this. She has not had any issues but we want to be pro-active! Other than the PVT with varices, she is in excellent health and we are so grateful. Thank you for this site! I am praying for a good report for my daughter and will let you know what we find out from Dr. Superina. My prayers are with all who suffer!
Kim- thanks for sharing your daughter’s journey with PVT and subsequent varices. I can only imagine your heartache dealing with this, but it sounds like you have a strong faith in God and that always helps! My friend Claire, a fellow sufferer from Australia has recently consulted with Dr. Superina and he is reviewing her case for possible surgery. Claire is an adult so this is a rarity for Dr. Superina in that he mostly deals with children. On that note, my understanding from the folks I have spoken with, is that the condition of the portal vein is stronger in kids, as opposed to adults making the operation (Rex Shunt) a good alternative. I had heard several months ago, that the operation has been performed successfully by Dr. Superina over 100 times. I would imagine that number is much higher on a world scale, as there are other doctors performing the operation in their own countries. Like your daughter I have not had a bleed from my esophogas (only 1bleed from my stomach), and I also take Nadolol and a protein pump inhibitor called Pantoloc. The standard protocol for PVT right now seems to be beta blockers (to keep the heart rate down) and meds to tame the acid in one’s stomach and or esophogas. I am anxious to hear what Dr. Superina says – and yes please let me know! Thank you for your prayers for fellow sufferers – I know it means alot! Blessings, Clint
Clint – Thank you for sharing your story. I will keep you in my thoughts and prayers.
My son’s story is very similar to Kim Lowhorn’s. My twins were born early at 29 weeks and one was recently diagnosed with portal hypertension due to a clot in his portal vein (which was also caused by an umbilical catheter used while he was in the NICU). We are currently discussing surgical options with Dr. Superina in Chicago as well. I would love to get in touch with Kim Lowhorn as our stories are so similar…
Hi Jennifer – thanks for your post and also your thoughts and prayers. Trust things will become much clearer for you as you discuss your little guy’s options with Dr. Superina. From what I know Dr. Superina consults with doctor’s on both sides of the border and also other parts in the world. I know he is currently reviewing an adult case for a gal in Australia who I met through this site. Blessings, Clint
Hi Clint! Thank you for your story. I hope you will get healthier soon.
My story started in 2007, when esophageal and stomachic varices suddenly happened. I lost 3 l of my blood…I was 21 years old, when I was informed that I have portal hypertension, splenomegaly etc. Before I thought that I am absolutely healthy girl. So after that I had an emergency, endoscopic banding ligation, liver impairment because of internal bleeding in my stocmach, varices again (duodenal and stomachic), and again…during one month I had the three varices and two logations. In June, 2007 my doctor performed distal splenorenal shunt procedure. It was in Saint-Petersburg, Russia. I was not in a good condition to have such a surgery that time, but varices occurred too often and he decided to perform a surgery. Now I am 25 years old, still alive, living normal life and writing my doctoral thesis in Stockholm.
God bless you, Alisa.
Hello Alisa,
Thanks for sharing your story and another amazing one at that! Glad your health is normal now as you are so young. If you don’t mind sharing … did the doctor’s ever determine what in the first place caused your portal hypertension? Was it a genetic cause? Wishing you all the best on your doctoral thesis! Blessings, Clint
Hello Clint,
Thank you for good wishes. My parents do not have such disease, but my grandfather died because of the liver cancer. Since my liver was not impaired by cirrhosis, my doctor thought that the cause was genetic.
Kind regards, Alisa.
Thanks Alisa.
Hello Clint,
How are you feeling today? May I ask you why you doctor does not consider DSRS? It has less complications. I know that in Saint-Petersburg after such surgeries women with portal hypertensia can even give birth. http://www.surgery.by/details.php?PHPSESSID=052a495ab7caba23003ba0f5a05b0585&lang=en&year=2009&issue=3&number=5 this is a link to his publication. His name is Bogdan Kotiv.
Hi Alisa,
I have been feeling the greatest the past few days, but sometimes my life is like that. I’ve have had some mild bleeding(I will spare you the details right now), and discomfort but hopefully things will turn around soon?
My doctor’s ruled out any kind of evasive surgery a few year’s ago as they are concerned about pulling me off my blood thinners in order to operate. I currently take 2 injections per day of Fragmin (12,500iu) to stave off any further clotting. In 2005 I had clot’s to both of my lungs and prior to that of course I developed a clot to my portal vein and also the mesenteric artery. Underneath all of this is a clotting condition that caused the problems in the first place. Doctor’s considered all options including DSRS and also even considered a rare cluster transplant to aleviate the danger of a bleed from the varices. It was decided amongst a panel of 5 doctors to not operate on me as it would compromise my life due to the fact I am doing relatively well today – even at the ripe old age of 50! I have been fortunate enough to not have a major bleed, otherwise with the thinners I am on it might not be a positive event! God is good! I was told lately that the younger the patient the best chance they have to improve with any kind of surgery. The medicine protocol for treatment is pretty much throughout the world as I am learning, so I guess surgery depends on whether or not the patient has a bleed in the first place? Thanks again for your contribution to this blog. Highest regards, Clint
Thank you Clint for explanations. I will pray for you to get better, and ask God to help you. Olesya.
I Clint,
thank you for sharing your story…6 months ago my doctor told me
I had portal hypertension with oesophagial varices. It was scary
but I am learning to deal with that. Tomorrow I will have a banding
of these varices. Hope everything get better.
Finding someone who deal the samething can help to cool off.
Thanks…God bless
Ann
Thank you for sharing Ann. Prays on your behalf especially tomorrow and on into the future! Keep us posted if you will. Blessings, Clint
Appreciate this immensely! God bless you also!
Hello Clint,
Thank you for sharing your story I had never heard Of PVT Before but my 4 year old son was recently diagnosed with portal hypertension caused by portal vein thrombosis. He is a normal happy 4 year old born with Optic nerve Hypoplasia (poor formation of the optic nerves) Jake is blind in his left eye but has good vision in his right so this condition does not really effect him but it is congenital. Investigations into his ONH showed him to have an enlarged spleen and blood tests showed low platelets and red and white blood cells we went on a year long journey of tests to rule out blood cancers. He Has recently spent a week in a childrens hospital which has a specialist Liver centre. They preformed an endoscopy which showed him to have grade 3 escophageal varices one was banded he had other varices in his stomach and bottom but they did not band them they put them at a grade 2. I am waiting for results from an MRI he had done of his liver where they enjected dye into his vein. Its believed Jakes PVT is caused by a congenital malformation of his potal vein. The ultr sound scan showed his portal vein was positioned different to normal. They have not linked the 2 seperate congenital conditions Jake has but both the optic nerves in your eyes and the portal vein system develope in the 1st 8 – 10 weeks of pregnancy. I feel they must be conected because what are the odds or getting 2 rare congenital conditions. He has never had a bleed and the thought of that happening really scares me. They have but him on medication to stop the build up of acid in his tummy. They also said his stomach lining was inflamed. Do you have this? I didnt ask if it was connected. Thank you for your story Im sorry to ramble on I think Im still a little shocked!
Kerry Hughes (UK)
Thanks for your story Kerry – great to hear another one from the UK! Please know you are not alone out there and there are, others who have and are walking this same journey with their little ones. All of the side effects mentioned seem to be common amongst most PH sufferers, including myself, except for the cause (congenital malformation of his portal vein). My condition was thought to be caused from a rare genetic clotting disorder of which doctor’s have never pinpointed to date! I have grade 3 varices but have never had a bleed, but there are others I know of who have had bleeds and pulled through. Banding is a common procedure it seems, and at one point doctor’s were performing scleropathy on patients to prevent bleeding, but this does not seem to be the case nowadays. I too am on a medication(Pantoloc) to prevent stomach acid from wearing away the varices – so again this is another common medication. One question I have though, do they have him on Nadalol to lower his blood pressure, or is that an issue? Nadolol is commonly used to bring the blood pressure down in the varices so that they will not rupture under pressure. From what I have learned from my own doctors and others who have this condition, is that it is standard protocol around the world to put patients on this in order to prevent a bleed. Now in the case of your son, I can’t speak to that, but you would need to ask you doctor. As always my heart goes out to all you parents of these precious little ones. Keep asking questions, check back here often – we are here for you and in my case I am thinking and praying for all of you! Clint
Hello Clint
Many thanks for your response it really is a comfort to spk to someone with experience of this condition. Your Website is really good and very informative. He is not on any Meds to lower blood pressure but we are Due back to Hospital in 6 weeks so I shall ask what the plan is. He is on 2 lots of medication one is to reduce stomach acid ( Renitidene) The other (Antepsin Sucralfate) which is for his inflamed stomach lining. Im sorry to hear that they cannot pinpoint your rare clotting dissorder because In Jakes case I felt better to know exactly what was wrong. I wish you good luck and health for the future and find it pretty amazing that even though you are sick you are finding time to inform and comfort others.
Take care
Kerry
Hi Clint, thank you for this valuable website. I am hoping you can put me in contact with those who have had the Rex shunt procedure done by Dr. Superina. I see his name so much and we are very close to Chicago so we have also been to see him also. I would very much like to talk with others who have been to him and have had the shunt surgery. Please feel free to give my email to anyone who I may contact.
Thank you
Hi Kelly,
Appreciate your feedback on this blog. Regarding someone in the Chicago area, I am going to refer you to Shelly Hart whose daughter Aubree had the Rex Shunt procedure performed by Dr. Superina a number of year’s ago. You can access Shelly’s Blog by clicking here: http://www.hartgirlies.blogspot.com/ or you can also contact her through her email –
hartgirlies@yahoo.com By far the most response I have had on this blog to date has been inquiries and “hits” for the Rex Shunt Procedure. If you need more contact emails please let me know and I will be only too happy to oblige. I will let you initiate this contact but if you are unsucessful I can forward your email address directly.
Take care, Clint
Thank you very much for the information and again thank you for this website!
Hi Clint,
I hope everyone is doing as well as can be expected. I would like to share some information with Kerry Hughes (UK). In 2003, after a March vacation in Cuba, I was diagnosed with optic neuritis which is an inflammation of the optic nerve. This condition often is a precursor to multiple sclerosis so I had an MRI and saw two neurologists to rule that out. I was told I did not have MS and that the optic neuritis would clear up in 4 to 6 months, which it did. In September 2008 I was diagnosed with Portal Vein Thrombosis (see previous posts) and never thought there was a connection between the two conditions. I have an appointment with my doctor next week and will ask her if these two conditions could be linked. I will pass on any new information I get. Like many others on this sight, the cause of my PVT has not been pinpointed. My heart goes out to Kerry and her son and family. I again thank you for this wonderful website which has helped me to cope with this condition over the last year. I am feeling very well and am scheduled for an endoscopy and colonoscopy to check for esophageal varices (one year follow up) and pray that new ones have not developed.
Take care,
Audra
Audra,
Thanks again for another post on this site … I see you just entered it within the hour and it is still early here for me (4:40 am). I could not sleep as I am dealing with the usual pain that keeps me up! I had a nasty bout of the flu on the weekend, and I was feeling somewhat better yesterday, but it seems that was short-lived!
Anyways … I am anxious to hear what the results of your tests show, and YES pray that nothing new has developed for you. Also am curious to hear what your doctor says about the possible link between optic neuritis and PH? PH really is a curious condition and I guess if I pursued the root cause of how mine developed – I still would not know either! So we are in the same boat! When I saw my specialist last October, she even checked back in my records to see if there was an actual cause (ie.protein deficiency). I see her tomorrow for a follow-up appointment as she will be seeing how my blood pressure is holding up under the Nadalol and at that point she may increase the dosage? She also ordered a Echocardiogram which my family doctor said there are some abnormalities. The right side of my heart is, according to the test results “severely dialated” meaning it has become enlarged (by how much I do not know). The valve in the chamber is staying open longer than it needs to be and blood is leaking back down into the bottom chamber. I am not trying to scare anyone reading this anymore than they may likely be, but portal hypertension can cause pulmonary hypertension and in medical terms it is referred to as “portopulmonary hypertension”. At some point I am hoping to shed more light on this subject as it is yet another side effect of portal hypertension.
Well, you take care my friend. As I said before I will be praying for you, and the many others who find themselves on this often lonely journey into the realms of the disturbing condition we find ourselves in. Now … if you will allow me to be so bold I am posting a link to a video that was sent to me yesterday by a long time friend in Ottawa. It has particular meaning for me as I can relate to what is being sung and the string quartet playing in the background is phenomenal. I was encouraged as I often am when I listen to music like this – I hope you enjoy it: http://www.youtube.com/watch?v=dGfqt2uTxIM
Hi Clint,
Thanks for the links. They are very uplifting.
Audra
Hello
I would like to thank Audra for sharing about your Optic Neuritis and PVT, Im very interested to know what your Doctor thought was there a link? Jake was born with optic nerve Hypoplasia when the optic nerve doesnt develope fully and is smaller than should be his PH was only diagnosed recently but the malformation of his portal vein is also something he has been born with. Your the closest I ve found to anyone linking the optic nerves with the portal vein I will tell Jakes Doctor about your experience aswell. Im really hoping no new esophageal varices have developed for you Audra wishing everyone on the site good health for the future
Kerry
Okay this may sound stupid but I have a friend that has a rex shunt and she is 4months pregnant and the doctors have started doing test as of 4/28/11. and they are worried about her why are they so worried about her and the baby she has not gained any weight from the pregnancy but the baby is moving and active so that is good right? I just wanted some more info on why they was worried thanks for helping me
Thanks for your post. The Rex Shunt procedure is relatively a newer procedure so I am guessing your friend must be quite young. I am sorry to hear doctor’s are concerned for her, but I am not sure why unless there is other complications? The procedure is normally performed on children under the age of 5 according to what I have learned recently, and if it is successful I have only heard of a few who have had complications after it was done. I can only speculate at this point why they may be worried about the shunt or again what other complications she may have to make them think this way? Our best hope may be that someone else will see this post and share some additional insight. If you find out anything else relavant to her condition – please feel free to post again! Take care!
Hi
Just a short post to touch base with everyone. The results of my one year follow up endoscopy and colonoscopy were very positive. I had one new esophageal varice and a very small residual one banded on May 2nd. My colonscopy was clear and does not have to be repeated for 10 years. In 6 months I am to have a repeat endoscopy to check for any new varices that may develop. I am feeling very well and am becoming more physically active and have gradually got more adventurous with my travels. I recently returned from trips to Seattle and Palm Desert and am scheduled to go New Orleans at the end of May with my husband.
I would like to know if anyone has any information on a new anticoagulant drug my doctor is hoping to put me on to replace Warfarin. The drug is Pradaxa and it does not require the frequent monitoring of my INR. It is about to be approved in Canada for other uses besides atrial fibrilation (sp), but I believe it has been used in the UK and possibly the US for a few years for a variety of conditions including PVT. Also, I have run across websites that mention Sorafenib that is still in the experimental stages. I believe it is used to help repair vascular damage. The website clevland clinic. org has an interesting article about it. Lastly, I asked my doctor if my Optic Neuritis and PVT could be connected. She did not think so because my PVT was a structural problem and optic neuritis is an autoimmune condition. However, she is a GP and might not have expertise in these areas so I would take this info with a grain of salt.
Clint, I hope you are doing well and that your heart problems work themselves out. I again thank you for this wonderful website. All the best to everyone.
Take Care,
Audra
Hello again,
I just realized that you have an entire article on this website about Sorafenib. It quotes the same research I read. You are always a step ahead. Thanks again, Audra
Hi Clint,
first of all, thank you very much for your website. It’s a huge help for everyone with PVT and portal hypertension.
I’m a med student from Poland and my fourteen-year-old sister is suffering from PVT, portal hypertension and splenomegaly.
Shortly after birth she was admitted to hospital because of sepsis (blood poisoning). Thankfully, the doctors managed to save her life and until she was five there were no further problems. In 2002 routine tests showed low haemoglobin and platelets. During summer holiday she caught some unidentified kind of infection. After that, when she went to kindergarten, she had a few incidents of fever and non-specific symptoms. Her spleen enlargement was diagnosed then.
When she was six, she had a severe bleeding from her gastrointestinal tract. She had esophageal varices diagnosed then. For the last few years she’s had them banded for three times.
Her organism has produced a natural shunt, so her liver is in good condition. Because of her weak immune system she falls ill very often, misses a lot of school and has to avoid crowded places like shopping centres. She can’t attend PE lessons because of the spleen and feels “worse” than her friends because of that.
Now she doesn’t have esophageal varices (thank God), but her spleen is 22 cm and her platelets and white blood cells are very low (PLT 60 thousand, WBC 3 thousand). The doctor performing gastroscopy said there are possibly varices under the cardia, but he is “not sure”. I just love his accuracy.
I have a question to you all – can you travel by plane with your diseases? Last year, when there were no varices, we flew on holiday for the first time, but we’re still afraid. Our doctors can’t tell us for sure what are the possible consequences. Do you have any experiences with flying?
Thank you in advance. God bless you all,
Anna
Hi Anna,
Thank you for sharing your story regarding your sister. I am always very pleased when anyone responds here, and in particular people who have a medical background as it brings an added element of understanding to the subject.
I am intrigued by the the fact that your sister’s doctor was “not sure” about the possibility of varices, as I always believed that when the portal vein is clotted that the pressure would cause varices in the esophagus and the upper part of the stomach? As for travelling I have made a few trips over the years since my diagnosis of PVT, but I am on blood thinners so have always believed that would prevent further clotting – especially when travelling or sitting for several hours. Is or has your sister ever been on blood thinners for her condition? Secondly … I have recently learned that some children are born with an infection in the embilical cord, which is known to cause portal hypertension. Most of the children were born prematurely, and interestingly I was told that many of these babies were born in Eastern Europe and primarily in the Ukraine.
Until recently I was on Fragmin injections (12,500 iu) twice per day, but my hematologist prescribed a new drug called Rivaroxaban in which I only have 7 more days coverage on provincial plan. The drug is very new still and is not approved by Health Canada for my type of thrombophila, but I am applying for a review to see if I can get coverage. I can’t afford to pay for this med myself, so I may have to go back on Fragmin as it is an approved medication under our provincial guidelines.
As my spleen is also enlarged, plus my white cells, and platelets are low (sorry I don’t have the latest numbers), I get yearly flu vaccinations in order to prevent illness which can complicate my situation in a short period of time. Does your sister receive yearly innoculations to prevent illness? I might also add that my liver is also in good condition – so I think overall that is a very good thing in the long run as I have been told by most of my doctor’s.
Lastly, I know you would understand this as you yourself are a medical student, but I always tell people to check with their doctor’s first before taking anything I say at face value. Thanks again for your valued input … please keep me/us posted of any new developments regarding your sister.
God bless you also!
Clint
Hi Clint,
thank you very much for your quick reply.
My sister used to have esophageal varices in the past few years, but now, thanks to her natural shunt, she doesn’t have them any more. She only has to have gastroscopy done every year to control the situation. Last year both the esophagus and the upper part of the stomach were clean and we were allowed to go on holiday by plane. This year gastroscopy was performed by a young, inexperienced doctor and he wasn’t sure what he saw in the upper part of the stomach. He said it could be either forming varices or just a mucosal fold.
We were once told that travelling by plane is strongly prohibited for patients with varices as the pressure in the air can cause the bleeding. We’re now afraid to travel by plane with her, as we’re not sure whether she has varices under the cardia or not. Have you ever travelled by plane with your condition? I would really like to get to know other’s experience concerning travelling by air. Maybe you know of any forum where people can exchange info about portal hypertension and their experience? Of course, apart from your site, which is very helpful
Isabelle is not on blood thinners, she doesn’t have to take any meds at the moment. The recent CAT scan showed that the flow in her portal vein is not completely stopped, it is preserved to a small degree. Her spleen is still getting bigger, though, and her white cells and platelets are low all the time.
My sister wasn’t born prematurely, actually she was born a few days after the planned date (I don’t know the smart medical term for that, sorry
). Most probably the infection in the umbilical cord, which you have mentioned, was the cause of sepsis in her case. My mom says the fact that most of the babies with that condition were born in Eastern Europe may be associated with the explosion in Chernobyl and the radiation sickness caused by it. We’re only guessing, though.
Isabelle doesn’t receive yearly vaccinations, our doctors say it would be too risky as her immune system is so weakened. They’re afraid that she would fall ill immediately after vaccination. On the other side, during every infection she ends up in hospital, because her white cells fall sometimes to even 600. We can’t find a good immunologist, however, who will tell us exactly what to do, how to prevent illness and how to deal with it. There are for sure more experienced doctors, who deal with such cases, in US or Canada, but as Isabelle can’t travel by plane, it’s difficult for us to look for help there.
Thank you once again for your reply and your valuable information.
Take care,
Anna
Hi
I am responding to Anna question. I was diagnosed with PVT and portal hypertension 3 years ago (see previous posts). I live in British Columbia, Canada and in the last 2 years I have travelled by plane several times. In January 2010, I flew to Arizona and in the summer of 2010, I flew to Toronto. This March I went to Palm Springs and in May to New Orleans. My doctor told be I was fine to fly because I am on Warfarin which should prevent clotting. I have also taken a few long car trips, making sure to stop every couple of hours to walk around. I hope this helps.
Take Care,
Audra
Hi, Clint. It was very interesting to find a site like yours to share with people that has similar experiences.
I would like to share with everyone about my brother’s condition. He was diagnose to have liver cirrhosis where his esophageal and gastric varices started from. As of this time, he is fortunate to not have bleeding, although he has low platelet count coming from his spleenomegaly. The good thing about his condition is that it was found out before any bleeding started and that he is now placed on propanolol, hctz and inderal.
Couple of weeks ago, he complained of stomach ache which prompted his gastroenterologist to order an endoscopy. That is when he found out that my brother has the varices.
Unfortunately, my brother is in the, Philippines, where interventions can be limited. Wish he is with us here in the U.S.
His doctor told him that he can never fly ever. Unseemingly, this may not be true because as you have shared you are able to travel even with your present condition. This is something that I might ask his doctor.
I will be including you in my prayers, and so with everyone who’s suffering the same condition. I hope that you all retain a better condition.
Hi Anna,
I am sorry for such a delayed response to your message, but I am having difficulties with my server for this blog and it will not allow me to directly approve comments as it should, but if I reply it is working just fine – which is always what I aim for.
I have a contact in the Ukraine who herself is a medical doctor, and coincidentally has a little girl with PH. In speaking with her and hospital personnel from Childrens Memorial Hospital in Chicago they mentioned that Chernobyl explosion is likely the cause of many people illness not only in the Ukraine, but countries that surround it. The doctor from the US (Chicago) was over in the Ukraine a few years ago, and he noted that many of the kids who had PH were born prematurely and had some sort of infection in their umbilical cords to begin with. At one hospital that this doctor visited, there were over 40 children with PH and most of them had the same symptoms at birth.
All being said and I have said this before, I am always saddened to hear that kids are having to deal with this disease and not only that but any kind of condition that may be life threatening. I will I could do more for these kids especially, but I am only one person and the only thing I can do is to say what I say and pray for them. If you haven’t yet noticed I am a person of faith, and I believe part of my calling is to offer support to people who are perplexed about this disease, and of course put them in touch with others so that they do not feel so all alone.
If you try to post here again and I don’t reply right away, I am working to resolve this server issue and will do my best to get back to you when things are working properly.
Kindest regards,
Clint
Hi, I hope I’m not crashing your party but yours is the most hopeful source of information I have found in searching for help with symptoms of portal hypertension. I’ve been reading through your blog for a while and haven’t come across anyone with a Hepatitis C diagnosis. In 2004 I was diagnosed with HepC, did 11 months of chemo+antiviral treatment that did nothing helpful. In 2006 I was diagnosed with portal hypertension. I’ve had no more treatment than medication to control acid reflux. In the last year I’ve developed an excruciating chest pain that is always in the same spot. I’ve had it off and on, sometimes for days in a row. No doctor seemed particularly concerned. This fall the pain has become a daily constant. Recently I’ve had a feeling like something heavy in my throat -lame description . . . it’s like it hurts to swallow as if the area just gets stiff. I frequently have discomfort after eating-sore throat and mild pain. Does that make any sense to anyone? Can the portal hypertension cause pain that severe? Could I have the beginning of varices that, while not bleeding, is causing a lot of discomfort? My family doc, here where we live in a rural area, says there are NO symptoms of varices except bleeding and so when I have bleeding I should let them know! Searching the internet for symptoms of varices is not much better-there too bleeding seems to be the only symptom worth noting.
My doc suggested something else was causing the pain, but prescribed nexium, which my insurance did not cover so that was the end of that. I already take prilosec, buy zantac over the counter and get little relief when the pain is particularly bad . . . then nothing helps.
Rachel
Γεια σας παιδια ειμαι και εγω ασθενης με πυλαια υπερταση,ειμαι 29 χρονων τωρα..Ενω οταν διαγνωστηκε η πυλαια υπερταση ημουν 3 χρονων.Ειναι μια παθηση δυσκολη και υπουλη αλλα μπορει ο καθενας να την αντιμετωπισει αν προσεχει.Εκανα αφαιρεση σπληνομεγαλιας οταν ημουν 5 χρονων και σπληνονεφρικη επαναστομωση κατα warren μετα απο αιμοραγια κιρσων 2 μεγαλα χειρουργια στην Ελλαδα…Αλλα το προβλημα δεν σταματαει τωρα καθε εξι μηνες κανω ελεγχο με αιματολογικες και γαστροσκοπησεις..Παιρνω φαρμακευτικη αγωγη μονο Interal propanololy..4 δισκια την ημερα..Βεβαια πρεπει να προσεχετε να μην κουραζεστε και να μην βαλετε κιλα γιατι αυτο επιδινωνει την πυλαια υπερταση..Ευχομαι σε ολους καλη αναρωση στους γονεις των παιδιων κουραγιο γιατι ολα θα περασουν,ειμαι σιγουρος οτι οι επιστημονες ειναι κοντα στην θεραπεια της πυλαιας υπερτασης η οποια θα διαρκεσει λιγα χρονια ακομα…Ευχαριστω ολους και τον Clint ιδιαιτερα που εκανε αυτο το ιστιολογιο για να μιλαμε..Καλα χριστουγενα!!!
The above message translated … Hi guys I am also patients with portal hypertension, I’m 29 years old now .. and when the portal hypertension was diagnosed I was 3 chronon.Einai a condition difficult and treacherous, but anyone can address whether the removal prosechei.Ekana splenomegaly when I was 5 years old and splinonefriki epanastomosi by warren after bleeding varices 2 major surgeon in Greece … but the problem does not stop now every six months I do checkups with blood and gastroscopy .. I take medication only Interal propanololy .. 4 tablets a day .. of course it must be careful not to get tired and do not put this epidinonei pounds because of portal hypertension .. I wish them all anarosi to parents of children COURAGE because everything will pass, I’m sure that scientists are close to the treatment of portal hypertension which will take a few years to come … Thank you all and especially Clint who did this istiologio to speak .. Well christougena!
Hi Clint
I am so glad I came across your site today. My father has been battling liver cancer for the last seven months, through alternative, integrative therapies and was doing very well. Unfortunately he also has portal hypertension and cirrhosis. Today was the first time he ever experienced bleeding and was informed of the concept of Esophageal varices , all very scary as you well know. We had no idea this was going to be part of his journey. Doctors immediately carried out the banding treatment and he is on a three day course of Meds. We are on pins and needles waiting to see how everything turns out. After reading your site I am hopeful he has a chance of managing this. Have you come across anyone on your journey who is also battling liver cancer (tumor) and cirrhosis ?
Thanks Clint
Yvonne
Hello Yvonne,
Thanks for your inquiry. For everyone who comments or for that matter reads this blog and they themselves or a loved is dealing with portal hypertension – I am always saddened to learn about their struggles. In particular it can be very confusing and uncertain when I person first learns of this, and you are no exception to that if you have been reading the comments posted here. In the 2 years I have now managed this blog I have been in touch with many people who have successfully survived banding and continue to live many years beyond the diagnosis. To date I have not come across anyone who is dealing with the 2 added complications that your Dad is dealing with, so I have no one to compare him with. If this is a 3 day course of meds I would be interested in knowing what he is on – if you know that as that may be helpful to others in the event they are dealing with the same issue. I am sure he will be on a beta blocker to lower his blood pressure in case of additional bleeds (if there are other varices known) and that seems to be the standard treatment for those of us with this condition. I can’t even begin to imagine how you are feeling right now as you said you are on pins and needles – all I can offer (and I hope you don’t mind) is for me to uphold your Dad in prayer. Overall I would appreciate knowing how the treatment is working, so if you can update me that would be great.
Take care,
Clint
Thanks Clint,
You are very good to respond. We are about two weeks out from the original bleed. I believe my father is now on a low dose of propranolol, original dose was too much and affected his blood pressure ( too low). He is actually going back to the doctor tomorrow to check on the bands that were placed around the veins.
With regards to the rest of his Meds, most of which are natural
1) selenium, zinc, magnesium
2) vitamin A, E
3) milk thistle, essiac tea, beta glucan,
4) vitamin D3
5) shiitake and reishi mushroom extract
He is also on a low sodium, meat and dairy free diet
We are hopeful this will help to strengthen him and fight off the cancer, minimize the potential of another bleed and also just help the cirrhosis,
Thanks again Clint. I will keep checking back in to stay uptodate on everyone’s progress
Yvonne
Hi Again Yvonne!
Appreciate you getting back to me. Sincerely glad that your father has had another bleed. I am very intested in knowing the reasoning behind the vitamin supplements. I can understand the logic behind the Vitamin D3, magnesium, and zinc, however I am not sure about the other products. I also think the low sodium, meat, and dairy free diet is a good thing for him considering what he is up against besides the portal hypertension (esophogeal varices). One thing I am concerned about, and maybe you have not considered this – is the vitamin E. Not to say Vitamin E is a bad thing, but if your father is on blood thinners already (especially Coumadin aka Warfarin) it acts as a natural blood thinner and it may throw off his I&R readings. I’m not on Coumadin because it does not work for me, but I am on Fragmin (needles) so I don’t have to have my readings monitored, however I try to avoid Vitamin E as it can worsen a bleed if that happens. Also Vitamin “K” which is found naturally in some foods (ie Spinach) can affect I&R readings – from what I have learned. These are just a few things I have found out through the years. As yet, and believe me I have asked (specialists/family doctor), I have never been given a diet to follow, except to cut down on sodium – which is never good for anyone. When I asked my family doctor last year about vitamins, he told me that basically we get most of what we need in a balanced diet with the 4 main food groups. For the most part he is right, but I beg to differ as I think extra vitamins in some sense can be very beneficial for most people – especially those not watching their diets or those with health conditions. My hematologist told me to take Vitamin B50 or B75 for the homocystine levels in my blood, and on my last visit he told me to take 4000 IU of vitamin D as new research is showing some good benefits to that. Calcium Citrate in particular is better absorbed than the other one (sorry can’t remember the name). A few weeks ago I had a doctor who also has portal hypertension come on this blog and leave a comment, and he told me that he thought the meds were important, but that Western medicine did not look to herbal treatments the same way they do in European or eastern cultures. There is value in both.
Thanks again for your comments … one never knows how any of this may help, but it is good to keep abreast of this most disconcerting condition and lend support wherever we can.
Peace, Clint