33 years after being diagnosed with Hep B I started treatment in April this year with a drug called Tenofovir, designed to suppress the reproduction of the virus as long as I take it for life.
For the first time since surgery for HCC cancer in 2010, my alpha fetoprotein (AFP) tumour marker has come back <1 - which in my books is zero, so undetectable.
Good news.
But before I hang out the bunting, I've only been taking Tenofovir for 15 weeks and already its reduced my kidney function to a flow rate of 68%.
Not so good news, as I have to take this drug for life if my viral load is to stay undetectable and my risk of HCC recurrance reduced.
I've reduced the dosage, and will have another blood test in a few days to see if that has helped stabilise the somewhat dramatic fall in eFGR.
Nothing is straightforward with HBV! Tricky little b**ger!
ONWARDS AND UPWARDS - a diagnosis and treatment of Hepatocellular carcinoma (primary liver cancer) diagnosed August 2010, presumed caused by 30+ years of chronic hepatitis B. And a search for how to be healthy living with cirrhosis presumed caused by Autoimmune hepatitis (diagnosed April 2011)
Saturday, 28 July 2012
Thursday, 26 July 2012
Kidneys - how they work
As mentioned in my 29th March 2012 post, the possible downside of treatment with Tenofovir is the drug side effects. Significant long term ones are kidney damage and osteoporosis.
Since starting the drug, I've been tested every 3 months to see how my kidneys and bones are coping. My last 3 tests have shown the flow rate through my kidneys - the eFGR - dropping from 90% to now 68%. Laboratories use a blood serum test - creatinine - plus your age and sex to calculate the eFGR. My creatinine level has been rising in parallel with the eFGR falling. Creatinine is filtered out of the blood by the kidneys, so measuring levels is a good way to find out how well the kidneys are doing their job of filtering. If creatinine levels rise (as mine are) the filtering job of the kidneys is deficient.
I looked back at previous tests (it pays to keep copies of your blood test results for a long time), and T did a clever little spreadsheet which produced a colourful graph, showing clearly that from the time I started on Tenofovir the levels have changed quite quickly - in the wrong direction. We want the red line to go back up to around 90, and the blue line to drop back to around 60.
Spoke to Dr L yesterday, and he suggested reducing the dose of the Tenofovir. Normal protocol is not to reduce the dose until the patient's eFGR drops to <50 - but heck, why wait until your kidneys are at 50% efficiency? Makes no sense. What I'm doing is trying to stop the damage progressing any further than it has already! He also arranged to give me another eFGR blood test next week and then a further one at the standard 1 month date agreed with Heppy Doc.
A friend on the liver support forum recommended nettle tea as its good for your kidneys. Nettles are also packed with Vitamin K (something us with poorly livers get low on, it clots your blood), calcium, copper, iron, magnesium, manganese, phosphorus, potassium, selenium, sulfur and zinc, as well as loadsa B vitamins. With a slice of lemon, a sprinkle of sugar, and while holding my nose to avoid the taste (it tastes like I imagine eating grass or hay would taste) its just about palatable!
Since starting the drug, I've been tested every 3 months to see how my kidneys and bones are coping. My last 3 tests have shown the flow rate through my kidneys - the eFGR - dropping from 90% to now 68%. Laboratories use a blood serum test - creatinine - plus your age and sex to calculate the eFGR. My creatinine level has been rising in parallel with the eFGR falling. Creatinine is filtered out of the blood by the kidneys, so measuring levels is a good way to find out how well the kidneys are doing their job of filtering. If creatinine levels rise (as mine are) the filtering job of the kidneys is deficient.
I looked back at previous tests (it pays to keep copies of your blood test results for a long time), and T did a clever little spreadsheet which produced a colourful graph, showing clearly that from the time I started on Tenofovir the levels have changed quite quickly - in the wrong direction. We want the red line to go back up to around 90, and the blue line to drop back to around 60.
Spoke to Dr L yesterday, and he suggested reducing the dose of the Tenofovir. Normal protocol is not to reduce the dose until the patient's eFGR drops to <50 - but heck, why wait until your kidneys are at 50% efficiency? Makes no sense. What I'm doing is trying to stop the damage progressing any further than it has already! He also arranged to give me another eFGR blood test next week and then a further one at the standard 1 month date agreed with Heppy Doc.
A friend on the liver support forum recommended nettle tea as its good for your kidneys. Nettles are also packed with Vitamin K (something us with poorly livers get low on, it clots your blood), calcium, copper, iron, magnesium, manganese, phosphorus, potassium, selenium, sulfur and zinc, as well as loadsa B vitamins. With a slice of lemon, a sprinkle of sugar, and while holding my nose to avoid the taste (it tastes like I imagine eating grass or hay would taste) its just about palatable!
Wednesday, 4 July 2012
All done and dusted for 6 months
Within the space of 10 days have had my 3 month hepatology check-up (just waiting for current viral load result), my 6-month cancer check up (all clear for now, counting the days to 2 years post and then I will be over another hurdle), and an unexpected gastroenterology outpatients (havent seen him for about a year) where he gave me some paperwork for an AFP in 6 months and agreement to book another MRI in 6 months.
Despite our very un-summery weather, our strawberry plants have produced a bumper crop. 3kg picked in one day yesterday, in the rain! So today is strawberry jam making day - yum
Despite our very un-summery weather, our strawberry plants have produced a bumper crop. 3kg picked in one day yesterday, in the rain! So today is strawberry jam making day - yum
Also sending love and best wishes to my sister-in-law K, who was rushed into ICU a few days ago with pneumonia, but who has make a remarkable recovery and is on the mend.
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