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,