not full answers: hi every one well not... - British Liver Trust

British Liver Trust

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not full answers

rickyrocket1 profile image
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hi every one well not a great couple of months what with the new hep c drugs failing and not alot of answers the thing is ive been asking about liver pain for years but to kno avail and also the pain around the spleen but my consultant always says the usual u cant get pain from your liver but i recently asked for a copy of my letters from my hospital and there from a ct id had in oct 15 was a cpy of the results and it said i also have chronic pancreatitus and a lot of other complications i didnt know about and also another one said h/enc engorged veins around the liver and athin wall on my g/bladder so not very happy with the consultant i mean i know ive got cirrotic liver p/h/tention but why do they not tell u when u ask for along time about things

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rickyrocket1 profile image
rickyrocket1

no replys well ok i did think some one iknew would share a view

Catfishjumpin profile image
Catfishjumpin

Hi, i have had hep c for 43 years, the last treatment killed the virus in 2014. It was Solvaldi/Olysio for 90 days. In 2004 for a year I did interferon and Ribavarin but it did not kill the virus. I am not sure how long you have had Hep C. I have many symptoms, all our organs are involved in this disease due to decompensation of the liver. What is your platelet count, that could be why your spleen hurts. I want to help but I am not sure of how long your liver has been ill. I am happy to answer any questions I can. I feel for you, its frustrating how the medical professionals usher us along and leave us informed. I have learned to ask for a copy of my blood labs then I look up what everything means.

rickyrocket1 profile image
rickyrocket1 in reply to Catfishjumpin

hi thanks for that had the hepc since 86 had 2 goes at interferon years Go didnt work just failed sofos uvir declatasvir an riba ive got geno 3a my plt let count last time was 43 ive also got vit d defisiency and water retention in legs is worse than belly bones in legs hurt all the time im on spiro 100 mg and adcald3 for legs also furosimide 20 mg propanalol for the portalhypertention awaiting another ct in three weeks many thanks ricky

Catfishjumpin profile image
Catfishjumpin

Hi,

The one thing I hear here that concerns me is about your legs aching. I would ask is my Serum Sodium Level hi, low, stable? Mine is low and until they dealt with that I was having horrible leg pain and craming. I thought it was because I am a cyclist but then I almost bled to death one night but luckily I got thru that then they paid attention to my Serium Brain Sodium Level. I told them I had cramps and pain and they said they did not know what it was but once off Spironolacatone, the pains diminished. Thats no coincidence. I really need that drug due to fluid retention but its too dangerous for me to take more than once a month. They still refuse to see the connection. Medicine is not an exact science and no two humans are exactly alike. Your Platelet count is quite low, thats difficult to raise. Mine is now 70 but before the bled out, it was 18. My doctor ignored that so when varices popped they could not clot to stop the bleeding. I live in liver failure, I have for years, I manage with a strict diet and many hours of hard exercise every week. The only medicine I use is Propranalol. I am age 64 and living with liver cancer for two years. I developed it on treatment with Solvali and Olysio. I do not feel like I have cancer but I do rest a lot now since my last Hep C treatment. I was geno type 1a or 1b the hardest to treat. I am happy to answer any questions. Of course I am no doctor but also I refuse to just do everything they suggest. They are amazed at the transplant center by how strong I still am. Its the cycling, I am sure as it circulates stagnant blood as well as circulates oxygen to my organs. The liver cannot circulate much of anything due to the webbing mass of cirrhosis in my liver. For me, I just take it one day at a time but its not easy, liver disease, its extremely hard to manage.

rickyrocket1 profile image
rickyrocket1 in reply to Catfishjumpin

than u ill get bA ck to u later in day need some rest thanks once again

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