Pain in it’s various forms, unfortunately seems to be a common trait associated with Portal Vein Thrombosis (PVT). Over the past several months I have been in dialogue with others who have shared the specifics of their pain. Claire from Tasmania, Australia is one such lady who has endured much in her life due to pain associated with PVT.
Here is Claire’s story…
“I have learned much over the years about pain. My pain is based on the issue of when my portal vein became blocked. Because of that blockage, my body produced other veins around my spleen to take over the role of my portal vein ensuring that blood circulated to the various organs (especially and more specifically my spleen). Once the Portal vein burst and I hemorrhaged, it was at that point that my condition was diagnosed. My portal vein issue was slowly dealt with but the veins surrounding my spleen didn’t dissipate so in the time it took for the medical profession to figure out that I had PVT, these other veins became thromboses (engorged) as well. Unfortunately the veins will never go away.
My pain is due to an enlarged spleen and the fact that the veins surrounding the spleen are now very enlarged. At one point my spleen was reported at a size of 27 cm, with a normal size being only 10-12 cm. Due to constriction and enlargement of the spleen, I experience severe abdominal pain in the lower left hand side of the abdomen. Initially I was self medicating with alcohol combined with over the counter prescription medication until it finally took hold of me mentally. At that point I finally found myself in the office of a “pain management specialist” who, in 2005, started addressing the pain issues by trialing me on morphine, then oxycotin (the pain relief for cancer patients), morphine again, then methadone along with different enhancing meds: gabapantin, encap/clonodine etc. In May of 2008, he requested that I go into hospital and try 10 days of Ketamine (street name “special K”) however on day 6; I flipped out on the side effects and demanded to be discharged. I then tried to cope more on my own with a lot less pain meds (only methadone 5o mg dosage), but my specialist wanted me to consider another attempt of Ketamine infusion. So May last year (2009), I was admitted and started the infusion. Unfortunately the medication DID finally give me a pain-free day (Ketamine seems to be the only medication that provides the pain free relief). After only 2 days of treatment I asked to be discharged again because I again started to freak out on the side effects which unfortunately were enhanced due to 2 traumatic events of rape and sexual abuse in my past. So Ketamine has been ruled out as an option for any consideration until I am financially able to get the infusion in the safety of a single room. After I discharged myself, I went to a clinical psychologist who has been nothing short of amazing! Also went back to my specialist and asked to be provided with a more subtle pain relief that would not affect my job or daily tasks so he prescribed fentanyl patches (50 micrograms). The patches I take every three days to work in conjunction with the therapist treatments I am receiving. Recently the pain has increased so the fentanyl patches are being trialed at even a higher dose so who knows what will happen next as the patches don’t seem to be working as much as I need them to? My only wish is to be able to work hard and live a normal life as possible. Anyway, I have to live within my limits. Pain is debilitating for anyone on any level. Pain is pain and is individual to ones being.
As the result of my declining health and ever present pain, I have suffered a great deal of loss in my personal life. First I lost my daughter to her father, and secondly I lost the option of naturally conceiving children due to my condition”.
Claire went on to say in her note to me that along with working at a part time job, she is currently studying at University for a law degree. She also told me that University is keeping her sane, and it has been a good diversion from her feeling sorry for herself. Also she is newly married, and she sees her daughter a lot so that is another reason for her optimism. Ultimately Claire’s desire is that someone other than sufferers themselves, would care enough to fix the horrible condition, or at the very least, the chronic debilitating pain which accompanies portal hypertension. She requested her story be told, not the sake of pity, but that others may be educated. Claire understands…she is a survivor…and is a real inspiration to me. Keep doing what you are doing Claire … I am cheering for you!
Until next time,
Clint
{ 16 comments… read them below or add one }
I have been the lucky one with portal vein thrombosis. 11 years ago I was in a coma due to the bleeding varices. By multiple bandings of my esophageal varices, they have gone away and the many twisted veins in my abdomen have encapsulated in the middle and are blocked off.God and Mount Sinai Hospital in NY and Doctors Murray Orbuch and Jacob Rand saved my life. I take an xray of my abdomen yearly as the opening of my portal vein has a small opening and this could happen again. I was on blood thinners for 10 years as well and I keep myself active and hydrated and pray for the best.
Hi
I was diagnosed with PVT in September of 2008. It is the most traumatic experience in my life so far. After suffering with abdominal pain for more than 2 weeks an ultra sound showed abnormal enzymes in my liver. I was immediately admitted to hospital and given morphine for my pain. A CAT scan the following morning showed a clot in my portal vein. I spent 2 weeks in ICU where I received heparin, intravenous feeding and morphine for pain. I spent another 2 weeks on a ward in hospital. When I could tolerate a soft diet I was sent home with a prescription for warfarin which was checked regularly. For the next year, I was in and out of the hospital with pain, vomitting, weight loss and dehydration. I went to a gastroenterologist who discovered esophageal varices which were banded. The pain continued to be intolerable and because of the constant vomitting my husband was injecting me with liquid morphine and an anti-nausea drug. Finally, after numerous visits to ER, hospital stays and procedures they discovered an obstuction in my small intestine caused by the lack of blood flow due to the clot. I underwent bowel re-section surgery in Oct. 2009. They removed 3 feet of severely damaged bowel. The good news is that my pain subsided almost immediately and I am able to eat again without vomitting. I had to wean myself off of morphine suffering withdrawal symptoms. I have gained back 35 of the 50 pounds I lost and am slowly getting my life back. I am on warfar for life and am also taking a beta blocker and diuretic to keep my portal hypertension down. I have had my esophageal varices banded twice in the last three months. The last 6 week follow up endoscopy indicated no more varices and I will be checked again in a year. My question is will these varices be completely erradicated with time or will I continue to develop them. They could not find a reason for my PVT. I am not a drinker or on birth control pills. I have been tested to see if it was genetic and that was negative as well. I would love to hear from anyone who has had a similar experience. I have felt very alone due to the rarity of this condition. Thanks, audra
Hello Audra,
Thanks for sharing your story. You have also been on a most interesting journey concerning this condition, and in many ways there are some common traits I share with you and others who have visited this site. I too have esophageal varices (grade 3) caused by Non-cirrhotic Portal Hypertension, but fortunately I have not had a major bleed at this point, but the possibility of a major bleed is there. Like you I am a non-drinker and the cause was never really given to me as I tested negative for all of the known genetic causes or Portal Hypertension at the time. My gastroentrologist stopped doing scopes (endoscopy) on me a few years ago, as she was afraid that the scope would puncture a column and they would be unable to stop the bleeding because of the high dosage of Fragmin (anti-coagulant) I need to be on to prevent clotting in the first place. In answer to your question regarding whether or not the varices may regrow after banding, I can’t really say at this point as I have not thought about it that much. I can inquire with some of the other people who have been in touch with through this post to see if they know more about this, or maybe someone will respond below in a comment? My gastroentrologist may know the answer to this question, and the next time I see her (hopefully soon) I will get her to shed some light on this important question. My doctor just returned from a one year absence from her practise where she specifically studied Portal Hypertension at Yale Medical School in New Haven, CT and Barcelonia Spain. She is to head up a new clinic here in my city that treats patients with Portal Hypertension. I hope I can pick her brains soon? In the meantime maybe someone who is reading this will have some insight for you? If and when I get some information I will let you know. I know this is not the answer you were waiting to hear, but even if I tried to glean information outside the medical profession on this one, I would hate to be wrong! Lastly … are you aware of the Rex Shunt procedure and the success that has been for some children with PH? I know Claire from Tasmania (see above) has recently been in touch with Dr. Superina in Chicago and he is currently reviewing her case for the possibility of the Rex Shunt being done on her. If approved she would have to go to the US for the procedure and of course raise the funds. Apparently to be eligible you have to be much younger than I (I am 50) and the condition of the portal vein within the liver itself has to be good. The shunt would alleviate the pressure therefore eliminating any varices developing within the esophagus itself. Claire or any number of people I now know would be willing to touch base with you to share their experiences if you so wish? Thanks again for sharing … you really are not alone! Take care, Clint
Hi again,
Thank you for your most thorough response. I will be interested to hear what your gastroenterologist has to say about esophageal varices and portal hypertension. As for the Rex Shunt procedure, if I am understanding you correctly, I would be too old for this procedure also ( I am 56 ) but would still like to hear how Claire makes out. I have been on medical leave from by job for 2 years and plan to retire officially at the end of December. I have a very emotionally and physically demanding job and I simply could not handle the stress involved. I also am on an anti-depressant to deal with all the anxiety the many symptoms of this condition cause. Thank you for setting up this web site and sharing your knowledge. It helps to know I am not alone. Audra
Hello Audra,
Thanks for your second post! Seeing my goal fulfilled by having people such as you respond, is fulfilling! I am on high alert for anything related to portal hypertension, but new information seems slow. I just turned the big 5-0 a few months ago, so I am in the same category as you regarding eligibility for the Rex Shunt procedure. Also … doctor’s do not want to take me off Fragmin as they fear I would clot again and that is not what anyone wants! I fool people all the time because I look healty, but my insides tell a whole different story! I am what some would call a “walking timebomb”, but I don’t tend to dwell on that possibility! I forge ahead in faith that God will continue to sustain me, and others who have been diagnosed with PH. It is good that you are able to retire soon – if one can remove serious stress from their lives it will improve their quality of life. I was diagnosed just over 8 year’s ago, and I have had 3 hospitalizations since then. I officially retired in October of 2007, and it has taken a huge load off my back! Regarding Claire … I will keep everyone posted if and when she might have the Rex Shunt done and what the outcome may be. In the meantime I pray that you will continue to do well and there will be no further health incidents as related to your condition. Best, Clint
Hello! I was just admitted to the hospital a few days ago with a stomach ache that wouldn’t quit and during a routine CAT scan, they found a PVT. I have good blood flow to my liver on the other side which is fortunate and that is why I appear so healthy, I suppose. They are treating it as an ulcer right now with Prilosec. I’m glad that they did the CAT scan to look at my gall bladder! Otherwise, I never would have known that I have a PVT! They are treating me with Warfaren and I might be having an endoscopy in a few days to get to the bottom of my stomach ache. All this is very new to me. I am 44 years old, healthy otherwise, non smoker and don’t drink much at all. The dr’s are all very surprised that I have this PVT but, I was on the birth control pill for medical reasons. I am now off that but, I did hear today that I tested positive for a blood disorder that causes trouble with clotting. I’m sorry I don’t have the exact name but, I believe it is something like Lupus Anticoagulant. I will meet with the hematologists to go over my blood work soon. In the meantime, the Gastro. dr is concerned about taking me off the warfaren so soon. (only been on it about a week and still getting regulated). They will talk with the hematologists tomorrow to confer. I’m very glad I found this forum although, it is scaring me a bit about the esophageal Varices. I pray that they don’t find those. I look forward to learning more from you folks! Pam
Hi Pam,
Sorry to hear of your recent health scare. Want to welcome you to this blog. I was 42, otherwise healthy, non-smoker/drinker, when they discovered PVT (that was just over 8 years ago). Mine was thought to be caused by a genetic defect of some sort (blood disorder), but nothing was ever pin-pointed. There are a few protein defiencies so if you get an answer I would appreciate knowing what the doctors say?
I have some very new information on a recent symposism that was held for experts on PVT, and I hope to share that on this blog soon. I need to read through the information as it it quite technical in nature, and possibly summarize it for the highlights. The conference attendees are renowned scientists in the field of portal hypertension research. I am quite postive your own gastroentrologist would be aware of the doctor’s involved?
If it is any consulation, I will tell you that most of the people I have been in contact with who also have esophogeal varices are being treated relatively the same way, and they have survived even longer than myself! The standard treatment protocol seems to be Nadolol (to keep the heart rate low) and anti-coagulants to keep from futher clotting.
Just before I go (it’s 1:35 am here) I want to say that I will be praying for you and that you are definitely are not alone!
Take care,
Clint
Hi
Just read your post about visiting your gastroenterologist next month who specializes in PVT. I have a couple of questions. How intensely can I exercise ie. how high is a safe pulse rate. I ask this question because I have read that increasing blood pressure can contribute to rupturing of varices formed to go around the clot. I have asked this question before Will esophageal varices continue to develop after several banding or will they eventually be completely eradicated? Clint, as an aside, I just realized that you are from the Edmonton area. I am also Canadian. I live in B. C. Anyway I was wondering if you were related to a Trish Steenson from Kamloops. I worked with her many years ago and know she had 3 younger brothers. I don’t know how common a name Steenson is but wanted to satisfy my curiosity. Hope you are well and thanks again for this wonderful website. Audra
Hi Audra,
Thank you for your message. Happy to learn you are a fellow Canadian! Aside from the questions below, how are you doing?
I will reiterate your questions to my gastroenterologist as requested to see if she has any new insights, but first allow me to tell you what I do know for sure. From what I have been told the typical protocol for those of us with PVT/esophogeal varices is to be prescribed a beta blocker (Nadolol) to keep the heart rate down, but given this I have never been given the specifics as to what is a safe heart rate for exercising. There could be some variance of heart rate depending on dose of the Nadolol, and possibly other contributing factors such as medications or age? When first prescribed Nadolol I was given 100 mg, and since that I have been titrated to 140mg as I tolerated that. Not sure if the dosage will be raised when I see my gastroenterologist next month? When being considered for a cluster transplant 2 years ago, a nurse on the team, and another doctor told me I was not to lift anything over 10 lbs. It would seem that any strain on the varices to the contrary is not good, and this may all be dependent on the severity of the varices as they are graded on a scale of 1 to 3 here in Canada. In the US they apparently use a 4 point grade system? If a scope reveals a red spot on any of the varices this indicates a high likelihood for bleeding. I’m not trying to scare you with this, but the last time I was scoped 4 years ago I was told that I had several columns of grade 3 varices, however I am still here! Now I don’t do any cardiovascular workouts or do I run, but I stay active my moving around with light housekeeping duties, or walking for short distances. I can get winded if I go at anything to hard, and I am out of shape in that regard, but I do not push myself so as to raise my heart rate too high. So all being said, I will ask my specialist about this and she what she says. Secondly, I recently had another person ask me if varices could continue to develop, and the answer is unfortunately – yes. Now that being said, a fellow from the US I met through my blog, had a severe bleed back in December of last year, and he was recently scoped and they only found one column of varices in his esophogas. The doctor told him they would leave it alone for now, but his health seems to be stable so that is good! Incidentally this same fellow has had PVT all of his life (I think he is around 47 years old now). You can expect the answers to your questions sometime after my appointment on October 18th.
Steenson is not a common name at all and we are not related to a Trish Steenson. It would be neat to meet her though and swap stories, maybe there would be some similarities? The name was originally Scandinavian, but we have relatives in Northern Ireland as that is where my grandfather came from in the early 1900’s.
You asked how I was doing … well not too bad, but I have been very tired lately. I am scheduled for an iron infusion at the hospital tomorrow. My iron gets low due to continued blood loss from the stomach, so my haematologist ordered iron infusions 5 years ago in order to keep my levels high. I was unable to tolerate the iron pills, and there is a risk when you take thinners, so this is the alternative but fortunately I only have to do this every 4 months. If the subject of iron infusions is common amongst fellow sufferers, I may post an article?
Well – I hope I have set given you at least a little more insight?
Take care,
Clint
Hi
Thanks for your response. Compared to a year ago, I am feeling very well. The turning point for me was bowel re-section surgery almost a year ago. Since then I have slowly been getting my life back. I have resumed many of my previous activities. I started skiing again last winter. I now ski easier groomed runs and ski a shorter day. I also am able to golf again. This spring I used a power cart and started with chipping and putting only. As of late July, I progressed to using a very light pull cart and am walking and playing 9 complete holes. I go for 45 minute to 1 hour daily walks and am taking a Zumba class once a week (exercising to Latin dance music). I consulted my GP about intensity of exercise and she told me to slow down or stop if I become breathless. Because my doctor does not have any experience with PVT, I am not entirely comfortable taking this advice and am very interested in what your gastroenterologist has to say about heart rate during exercise for patients with PVT/esophageal varices. I am taking Propranolol (10mg twice a day) to lower my blood pressure and a diuretic to prevent ascites.
I, too, tire more easily. My stamina and energy levels are not what they used to be. In January 2010, my hemoglobin was extremely low (72) and I was diagnosed with extreme anemia. Like you, I was offered a blood transfusion on the spot. I opted for iron pills. Further blood tests confirmed the anemia was diet related and not due to internal bleeding which was a relief. Three months of mega iron supplements have really helped and my iron levels are almost where they should be. I have been told that fatigue also can be a side effect of some of my medications, eg. warfarin.
I have found your blog very helpful and would like to thank you for your medication and prevention page. I picked up a great tip on how to deal with the frequent “bathroom trips” that PVT causes. This summer my husband and I took our first major trip since all this started (Toronto, Montreal, Ottawa). I was very apprehensive about taking long flights and car trips when a bathroom would not be readily available. I took one dose of Imodium on long travelling days and it worked like a charm. Anyway, I’m looking forward to your post after your appointment in mid-October. I find it reassuring to know that we have an expert on PVT reasonably close to home.
Regards,
Audra
Hi Clint and others,
Hope everyone is as well as can be expected. Last night (Oct.24 6:30 pst) on CTV news there was a story about a pre-schooler from Surrey with a rare medical condition(1 in 148 children in North America according to CTV)–Portal Vein Thrombosis. He is scheduled for the Rex shunt procedure in Chicago in January. Friends of the parents were fundraising to help with costs. If anyone would like to view the clip just google CTV news.
Clint, I hope your visit with Dr. Tandon was productive. I am sure you will post the highlights when you have digested the material. I have run into a bit of a snag–painful hemorrhoids, due to the re-routing of blood due to the clot. I was warned about this possibility. I have an appointment with a surgeon tomorrow to schedule banding. Meanwhile, I take my doughnut pillow with me everywhere and am following home treatment instructions. Otherwise, I am feeling good. How are you doing? The very best to you and look forward to your posts. Cheers, Audra
Hello again,
I just realized I misquoted the rarity of PVT in children as reported by CTV news. The Surrey pre-schooler is 1 OF 140 children in North America with this condition. Below is the link for the news clip
http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20101024/bc_preschooler_surgery_101024/20101024?hub=BritishColumbiaHome
Sorry for the error, Audra
Hi Audra, Thanks for your posts. I wrote to the contact person in charge of fund-raising for Jacob’s family to see if they would like me to write a post on his plight, and also if there was a specific place to donate in trust to Jacob.
Secondly, I did see my doctor last Tuesday, and I am still working on a post for my site so that you and others can view her response to the questions that I asked. I was working on that article into the wee hours of the morning today, so as I result I am a little tired this evening. What she had to say about my particular case was not good at all, and as far as the answers to the questions – they were sort of what I had expected. I will try to post that article as soon as I tweak it a bit.
Take care and thanks again!
Hello Everyone! I am Jakob’s mom the preschooler from Surrey. Thank you for sharing our story. We have been so touched with everyones kindness. I would love to talk with anyone that has had a Rex Shunt and if there are any other families trying to get approval from Candain medical for approval for surgery out side of Canada. My email is jen@trademark.ca
thanks again for sharing our story and i will pray for everyone that they find a cure that works for everyone suffering from PVT. I will also continue to raise support and awareness for people living with PVT!
Thank you
Jen Temple
I just found this site. I have portal vein thrombosis, splenic vein
thrombosis and mesenteric vein thrombosis. This all happened
2 weeks after having my spleen removed. I lived in Michigan and
I have been unsuccessful with getting ANY help from the doctors
I have seen. I am in terrible pain, nausea and can’t eat because of
stomach pain. I desperately need help and if you can shed any
light or any doctor/hospital suggestions I would greatly appreciate it. Looking forward to hearing from you. Thanks for any info you
can share with me.
Hi Carrie,
Thanks for your comments and inquiry. Always sorry to learn of new people with our common condition, but happy you have found this site and to say that you are not alone in the battle! Here is a link from my site where you can hopefully find a doctor to at least guide you to where you might be able to go for help: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/
On the list is the name of a doctor in New York by the name of Dr. Jean Emond who may be able to direct you to a specialist in your area, or you may also want to contact Dr. Superina at Children’s Memorial Hospital in Chicago. Dr. Superina does preview adult cases, but he is by far the most renowned specialist for his work with children regarding the Rex Shunt procedure. Not to discourage you, but the Rex Shunt is works best on Children under the age of 5 with limited atrophy of the portal vein. There is another procedure that I have not discussed on my site yet which is called the Sugiera Procedure which is also rare, but if you look for anything on the net it is very technical in nature. There is a 12 year old boy in Chicago right now that Dr. Superina is considering for this procedure as the Rex Shunt he had failed in his case, so we are waiting to hear what the next step may be for him.
Why did you have your spleen removed in the first place – I am just curious? How did get PVT – if you also don’t mind me asking? Are not your doctor’s doing anything for the severe pain you are experiencing? I know this sounds relatively simple, and until you get more concrete answers (I’ll pray), but have you tried taking oil of peppermint for your stomach pain? It is not the be all to end all for pain relief, but maybe it will help at least a little? You should be able to pick up some Oil of Peppermint in your local health store, and I would suggest you put a few drops of oil in a cup of warm water and sip it down – sort of like a tea. It is very strong so remember to keep your eyes away from the steam. I never tell people to take anything except for what a doctor may prescribe, but something like this may curb some of your pain? Ginger can also be good for nausea, or you may want to try gravol – keeping in mind that it may make you very tired during the day. These are just a few over the counter type remedies – I certainly hope you get relief soon!
Worldwide the standard treatment protocol for portal hypertension seems to be the use of Propanol or Nadolol (beta blockers) to lower pressure to prevent bleeding from any varices that form due to the clot. You may not be at that stage yet, but the use of that med plus a blood thinner is what usually is prescribed. The other thing I wanted to ask is if you are on a med that eliminates stomach acid – this may also help with your nausea and maybe your pain? I am on a medication called Dicetel for that, and there are other drugs I am on which play into the whole mix of treating this condition.
Also … there is a Facebook site that was set up by a gal by a fellow Canuck who lives out in Vancouver. I don’t have the address for it, but it you have a FB account you can view the site by going to Portal Vein Thrombosis and Portal Hypertension in Children and Adults. There is some excellent dialogue on that site and you will even find some of my posts.
All the best in your journey (you are not alone)!