Tag Archives: portal vein thrombosis

Needed: New Treatment Options for Portal Vein Thrombosis (PVT)

Balloon-catherter While at my family doctor’s office a few days ago, we were discussing the forthcoming appointment I have next month with my gastroenterologist.  My gastroenterologist, Dr. Puneeta Tandon has just returned to the University of Alberta Hospital here in Edmonton, after a year of specialized study in the area of Portal Hypertension.  Dr. Tandon studied  in Barcelona Spain for the first 6 months, and for the remainder of that year  worked with  Dr. Guadalupe Garcia-Tsao at Yale University in New Haven,  Connecticut.  Dr. Tandon heads up western Canada’s only Portal Hypertension clinic.  I mentioned to my family doctor that I had many questions for Dr. Tandon, and he himself wanted me to ask her if doctor’s had ever considered performing a balloon angioplasty to remove a clot to the portal vein. A great question for sure!   My doctor reminded me of the recent treatment on MS patients called the Liberation Treatment.

Rather than trying to explain the treatment I have copied a link below  from a CTV program called W5 which covers the whole topic in greater detail.  Along with other questions I personally have for Dr. Tandon, I welcome any questions you may have regarding  portal hypertension.  My appointment is in mid-October (2010) so if you are wondering about any new possible treatment options or require a better understanding of the condition send me a message and I will gladly add it to my list and post the answers after the fact.

Until next time,

Clint

Click here to view the CTV program:  http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/

New Treatment Options – Acute Hepatic Encephalopathy

Thanks to Greg from Minnesota for forwarding the following 2 articles concerning Acute Hepatic Encephalopathy and some possible new treatment options.

The following article represents data from 2 studies presented by the UCL Liver Failure Group to the American Association for Liver Disease (AASLD) regarding OCR-002 (L-ornithine phenylacetate) at a meeting held in Boston in November of 2009. Ocera Therapeutics, Inc. of San Diego, California holds the licensed exclusive, worldwide
rights for the development and commercialisation of OCR-002. OCR-002 has the potential to reduce ammonia, down-regulate inflammation, lower oxidative stress and reduce portal hypertension in a preclinical model of cirrhosis.
UCLB (UCL Liver Failure Group Present Two Studies at the Ame

This article presents data also from Ocera Therapeutics on AST-120 in Patients With Hepatic Encephalopathy At The European Association
For The Study Of Liver Disease held in April of 2009.

AST-120 Data for Hepatic Encephalopathy

If you have information pertinent to any one of the subjects posted on my blog, I would be more than happy to share that with all readers.

Until next time,

Clint

Portal Vein Thrombosis … One Woman’s Journey with Pain

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