I’m just wondering if anyone else with Essential thrombocythemia (ET) has any problems with their kidney function. Not sure if damaged kidneys are caused by Essential thrombocythemia (ET) or other issues. I know that the treatments can cause kidney problems but wondering if the Essential thrombocythemia (ET) itself can cause problems.
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Hi @Chris1, I was diagnosed with Essential thrombocythemia (ET) back in 2018 and have had kidney issues since that time too. Whether they are related to the Essential thrombocythemia (ET), the treatment for the Essential thrombocythemia (ET) or are “just” coincidental, no one can say for sure. My kidney function, the eGFR, was initially at level Level 3b (G3b) but has improved to level 3a (G3a), although I am not aware what has led to this improvement.
Treatment for my Essential thrombocythemia (ET) has been by Pegasys injections so far, and my platelet count goes up and down like a fiddlers elbow. However, and with the current difficulties with the supply of Pegasys, I am unsure as to what the future treatment plan will be. I have one more injection at home, due mid-November, then I am back at LRI in early December when things may (or may not!) become clearer.
Meantime, take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Hi @Jimbo165 . Thanks for your reply. Regarding your treatment, I have heard that they are using Besremi temporarily to replace the shortage of Interferon. Not sure if it will be used for everyone, I expect it will depend on your medical history and maybe even postcode lottery. It’s interesting what you say about your kidney function. My last blood test is showing 3a chronic kidney disease with high creatinine and urea. Now I have transferred to a better hospital with Myeloproliferative neoplasms (MPN) specialists, my blood tests are more thorough and informative. I knew my kidneys weren’t right for some time, but my local hospital didn’t bother telling me. Luckily I always ask for a print out of my blood tests to be sent to me so I can study them myself, so I knew things weren’t right. I suppose it is hard to pinpoint the root cause of the kidney problems as it could be the Essential thrombocythemia (ET) or effects from medication or other comorbidities.
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Hi @Chris1 and @Jimbo165 we sure are complex beings and who knows what is attributed to or coincidental.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2003 and have always been on active monitoring (watch and wait) so never had any treatment, but I was diagnosed with Chronic Kidney Disease in 2008.
So confused you will be!!
I am smiling here, lovely sunshine here, I hope it is with both of you too.
Good morning (just!) @Erica, we are indeed very complex beings, with much to be complex about.
I was quite chuffed when my CKD was “downgraded” from Level 3b to Level 3a, especially without me having been aware of actively doing anything to bring this improvement about.
I had mixed emotions over the state of my liver though. I was informed that there is a 4 stage scale for liver disease and that I was a Stage 2, bordering on Stage 3, which I took to be not the worst news you could get from a Hepatologist. He then proceeded to disabuse me of this “okay-ish” feeling by informing me that the scale runs from Stage 0 through to Stage 3 and that my poorly liver was a poorly organ indeed! He then (un)helpfully told me that there is a treatment that he would like me to have but that I was neither old enough, nor poorly enough, to receive it. He then compounded this by telling me that in his opinion by the time I was old enough I’d be too unwell for the treatment to be effective. If I may quote the late great Togmeister himself, Sir Terry Wogan, “is it me?” I can’t help but think that being younger and not so ill gives you a better chance of tolerating, and making a good recovery from, any treatment options.
I know that my Myeloproliferative neoplasms (MPN) consultants are all concerned about the effects of the treatment, as well as the Essential thrombocythemia (ET) itself, is having on my poorly liver. I wouldn’t mind if I had been a drinker along the lines of George Best or Oliver Reed, but I have always been closer to George Reed or Oliver Best in that department. Such is life.
Take care and stay safe please @Erica, be kind to yourself and smiling keep on!
Best wishes,
Jimbo165
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Hi @Jimbo165 a few months ago my cardiologist told me I was too fit and had too good a quality of like to have an op, then another specialist in another department said he would not operate on another bit of me because of my heart???
No wonder I keep smiling
Good afternoon @Erica, do you ever get the feeling that just maybe and occasionally the consultants/doctors/specialists might not know what they are talking about? 
I hope that your ticker will continue in its functionality for a good while yet.
Enjoy the rest of the weekend, as well as the sun if it is shining where you are.
TTFN
Jimbo165
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Hi Erica. That’s interesting, as I am curious to see if the link to kidney disease is attributed to the blood cancers or the treatment or both. Not a scientific study you understand, but pure interest to see how many people are affected by it. Lovely sunshine here today too. It certainly brightens up the daylight hours. Hope everyone is enjoying their day. Best wishes from Chris
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eh @Jimbo165
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@Erica likewise
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Hello @Chris1 - I am an Essential thrombocythemia (ET) patient too - and been on various treatment over the 18 years since diagnosis - and yes kidney function is always part of regular checks as any of the treatments can have an effect on some - and 99% of the time always normal so I guess treatment can effect but doesn’t for everyone even over long term use. I don’t know that kidney issues are from Essential thrombocythemia (ET) itself though, it’s certainly not one of the usuals listed for it. I do often think it’s the handy thing having regular blood screens for our condition means all our general health has an eye kept on it too as it may not be from Essential thrombocythemia (ET) but gives a flag to be checked out elsewhere. Hope it gets sorted for you
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Hi @Erica . I have just started a vegetarian diet. Apparently it’s better for the kidneys and helps to prevent any further kidney deterioration. Time will tell if it works. My next blood test will be in three months, so I’ll be interested to see the results. I cook everything from scratch, as some ready made options are high in salt and phosphates. I’m getting quite creative with inventing recipes.
Hi @Chris1 perhaps do tell your medical team about your new diet when you are next there in 3 mths.
I am impressed by your creativity inventing recipes.
Look after yourself.
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