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 other’s 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
{ 7 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