Should I be worried..?

[lizzziep]

I always take a photo of my blood results (so I have a copy) as I take them and my prescription to the hospital pharmacy. It's usually just one page but this time there were 2 and on the second page, which I have only just really looked at and I saw the info below. I didn't know what CKD was but apparently it is chronic kidney disease - and this says Stage 2!!

I had quite a bit of blood in my urine a couple of weeks ago - which lasted about 24 hours, for no particular reason. Tests didn't show any infection. I also had a scan on my kidneys a couple of months ago and was told they were normal.

The haematologist didn't say anything about this result - should I ignore it and consult my GP? I'd appreciate any advice.

[Mazcd Partner MPNVoice]

Hi Lizzie, speak to your GP first and get some advice. Maz

[Paul42]

Hi, As Maz says speak to your GP.

I do think its poor of them to just give you a piece of paper that mentions it, yet they havent discussed it with you verbally.

I had the same on some paperwork I had, it had written across it 'Chronic Liver Disease'. It turned out that was more of a 'question' than a statement, and it may well be the same for you. It turned out my liver was just fine, so hopefully your Kidneys will be too.

I would expect if they felt you had problems with your kidneys that you would be referred to someone who specialises in that area, I have to see a Hepatologist to keep an eye on my liver in addition to my haematologist.

Don't get fobbed off, make sure you get a definitive answer from someone, if your GP cant help go back to your haematologist. We have enough issues with our conditions without any undue stress or worry to bring us down even more.

All the best.

Paul

[lizzziep in reply to Paul42]

Thanks Paul. They don't actually give me a copy of the results I just take a photo of the copy that goes to the hospital pharmacy, if I didn't I'd never have known. Also I'm sure my GP gets a copy of the results and they've never said anything! (Mind you they're not very good!) I'm away from home at the moment but I'll go to the doctors next week when I get home. I'm wondering if it is a side effect of the medication. Of course if I knew that I'd be a doctor!

I've had an overactive bladder for a few years and tablets haven't really helped, so I was sent for a scan on my kidneys a few weeks ago and that came back clear or I'd be really worried, I've got an appointment with a urologist (not for a few weeks) so I may get answers there.

Thanks again for replying

Regards

Lizzie

[Cdseiter]

Ask your doctor about it. I have found that my GFR can fluctuate. Just because you had bad numbers at one draw does not mean that there is definitely a problem. Also, the docs do not consider it problematic until your gfr hits 60 or below. so you may've room to wiggle.

[lizzziep in reply to Cdseiter]

Thank you!

[lizzziep]

Thank you! I must admit I don't know anything about the eGFR, after over 5 years of ET I'm only just about understanding platelet numbers etc! 😳

Lizzie

[lizzziep]

Thank you ! I am trying to drink more, so hoping that will help.

Lizzie

[katiewalsh]

Hi Lizziep, I'm sorry you got scary news. I have been told all kinds of crazy (& inaccurate) things over the years, even by "supposedly" good doc's, so I would try not to worry yet. And like Paul 42, I've had lab results where a condition is written as a way to question if the result indicates something. I think you're in the UK, if so you may be met with resistance but I ask for & get copies of all my labs in the U.S. Some places maybe reluctant at first but they always end up agreeing. Sometimes you can them to give you a chart or graph showing the past 6-12 months results. For my ET I was told a particular lab result isn't as important as the trend over time. Good luck & please let us know what you learn. Katie

[lizzziep in reply to katiewalsh]

Thank you Katie! I always take a picture of the results before I hand them and the prescription over to the hospital pharmacy. I transfer the results onto a spreadsheet so I can keep a check on how things are going. It's usually one sheet but that day they had obviously done further tests which I hadn't really looked at until the other day. I'm not at home until next week so I'll go to the doctors and ask for more information then.

Yes I am in the UK in Yorkshire (Gods Own County as it's known!)

Best wishes

Lizzie 😘

[katiewalsh]

Hi. What a nice way to describe your geographic area. Sound as though it must be very pretty. Katie