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!
Fiona,
ReplyDeleteI now know why you are the only person I know who has eaten nettles... I hope it helps. It is frustrating that your kidneys are really struggling before you got the results you need from your drug. It is nice to hear from you again and know how you are doing. It is hard to believe that summer is just about over and the kids will be back in school in three weeks. Do you plan to see any of the olympics while they are parked in your backyard (so to speak)?
Carla
Hi Carla. Hope you and Steve enjoyed your holiday. We dont have tickets for the Olympics, but we do have 24/7 coverage on our BBC tv channel, so can watch from the comfort of our sofa! My brother and his family have tickets for an event on Monday this week, and a friend of mine is one of the 1,000s of volunteers at the Olympic Park.
ReplyDeleteI've reduced the medication dose, and have a blood test booked for Tuesday next week, so we shall see if things have stabilised. The good news is (I'd better do a post) that the drug has reduced my AFP tumour marker to 'undetectable' - the best it has ever been. So its doing what its supposed to do, just messing up my kidneys while it does it!
The idea of keeping a chart for blood results is excellent. What a clear way to demonstrate to your doctor the trend, and get some changes BEFORE reaching that 50% mark. I hope very much the reduction helps with your kidneys!
ReplyDeleteHi Catherine. Everybody in the UK should be able to ask for and get copies of blood test results. Doctors tend to wait for complications and then act on them, rather than focus on preventive treatment. Well thats my view anyway! I've had eFGR blood test today, Tuesday, should be back Friday 3rd Aug, so I will know by then if taking treament decisions into my own hands has worked. If it hasnt I'm going to have a lot of egg on my face, lol, ha ha.
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