Does anyone have experience of kidney problems and APS please?

[stillwaiting]

I have had blood and protein in my urine and high blood pressure for ages. Little was done as a blood test showed kidney function ok.

However overnight I lost quite a lot of blood. Saw GP he said there is still blood in my water this morning but it is not caused by an infection.

He has referred me to the urology department and says I will be seen within two weeks.

He said to try not to worry (so you worry then don't you - lol!) It might just be a kidney stone.

I am on warfarin but had this happen before I started it some 8 months ago.

Has any of this happened to you?

Lynn.x.

[Manofmendip]

I've had blood in my urine several times while on Warfarin and had three cystoscopies, which didn't find any problems and kidney scans too, all negative.

My urologist told me that he feels that it is caused by small blood vessel bleeds in the wall of the bladder, which can be caused even by leaning on a kitchen worktop and putting pressure on the bladder.

Since transferring from Warfarin to Heparin I have not had any such bleeds.

I hope this helps.

Best wishes.

Dave

[stillwaiting in reply to Manofmendip]

Thanks Dave - I keep telling myself it's the warfarin

[Manofmendip in reply to stillwaiting]

It certainly was for me. x

[jetjetjet]

Lynn - they test me with a metabolic and a lipid panel every 6 months even if I am not having troubles just because of the APS and all the meds I am on.and also the chance of CAPS. they have addressed CAPS with me a couple of times and fortunately I just had 2 surface vein clotting but they wanted to check. lets hope it works out well for you. keep in touch --- jet from across the pond .

[stillwaiting in reply to jetjetjet]

Thanks Jet - I'll be glad to be sorted - the back pain is bad today.

L.x.

[jetjetjet in reply to stillwaiting]

are you on anything for that pain ????

[stillwaiting in reply to jetjetjet]

paracetamol

[TJSTICKYBLOOD]

Hi there, I clotted off a kidney unnoticed by doctors before I was diagnosed. My blood pressure was extremely high which can be an indication of kidney problems. When I was diagnosed one of the first things they did was get the blood pressure under control, this took 3 agents. I've had blood permanently in my urine for the last two years. I recently saw a urologist they did a cystoscope to rule out bladder cancer and any damage in the bladder itself. The cystoscope was clear and they explained although it's not normal it was normal for me to have blood in my urine due to my kidney problems/failure. I'm sorry that's a bit vague . It is a possibility it's a stone or something else, go to your appointment and let us know how you get on. Good luck.

[stillwaiting in reply to TJSTICKYBLOOD]

Thank you TJ for sharing.

If all is fine I think the docs are sticking to their original idea that it is normal for me to have some blood and protein in my urine but they will check if the levels get too high. As the levels are high at mo that is why I am being checked out. My GP said, "I'm not saying this is cancer but you do meet the criteria to be seen within 2 weeks" Crikey - no pressure then - lol!

L.x.

[Holley]

I was diagnosed with high blood pressure in 2001 and put on two medications to treat it. In 2006, I was diagnosed with APS due to strange bleeding. I started Coumadin in 2007 to deal with the APS and my mechanical heart valve. For the past few years, I've tested positive for protein in my urine. Although my BP is good these days, they keep me on Altace to manage the protein issue. Then, in 2010 I was diagnosed with renal cell carcinoma in my right kidney. I've also had a cystoscopy done and it was negative. I've tested positive for blood in my urine several times over the years but it usually coincides when my INR is really high. The docs aren't sure if my kidney problems are related to my APS or if the cancer is causing the protein issue. Go figure. If it doesn't kill you, it makes you stronger, right??? I keep a good sense of humor.

[stillwaiting in reply to Holley]

Thank you for replying - you have had so much to deal with.

My nurse said it is a good job I can see the funny side of things!

L.x.

[MaryF Administrator]

Hi there, you seem to have had a lot of good and detailed responses here, so I will just add, keep an eye on it, and do always report it to the GP, if you do have a stone, it will cause pain, and that can cause back pain. I am glad your GP is keeping an eye on it. Do come back to us if you need any further detail. MaryF x

[stillwaiting]

An update:

Hello everyone Thanks for your replies.

I (finally) got results today, some two months later - CT scans and camera show that bladder and kidneys are fine but a small swelling was found on the adrenal gland. As this is thought to be benign no further action is needed and I have been discharged from urology. Not entirely reassured by this.

I am a bit depressed right now - not because of the above as such, but I know I am getting worse. I have little or no energy and I feel terribly weak. My speech is deteriorating and my memory is embarrassingly poor. I was asked yesterday did I know about a distant relative becoming engaged and no I didn't remember - oh dear.

God, this is one awful thing to have Thanks for your support.

L.x.

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I had that problem. Kidney stones. Still under treatment. On Xarelto.