I'm a 37 year old female, 2 years ago at the Birth of daughter I developed severe preeclampsia, and went onto develop pregnancy related heart failure - post Partum cardiomyopathy. I nearly didn't live, but I'm lucky to have recovered full heart function and my heart is now considered normal.
I've known since having the preeclampsia of protein in Urine causing a foamy appearance, I still have this now, and had been testing my own urine with dipsticks over the last 2 years ranging from plus 1 to plus 4 throughout the day. Virtually all morning samples negative.
Last year I was tested at my GP office and an ACR which came back at 98mg. At the Time my GP said re test in 3 months and suggested it still might be my body settling down from the heart failure etc, I continued to test myself and never want back to the doctors because basically I wanted to forgot about illness and live life without worry bringing my daughter up. Now another year later my urine was getting even more foamy, I decided to go back to my GP, I've had the following tests and have been referred to a nephrologist which isn't until the end of September:
eGFR: over 90
Protein in blood: Normal
ANA: normal ( i have had previously positive ANA two years ago)
FBC: all normal
Liver function test: Normal (I also had trace Bilirubin in my urine)
Kidney & bladder ultrasound: Normal
24 hr urine: 0.3grams (300mg)
I know I have been spilling the protein since the preeclampsia, sometimes I have tested my urine all day and it has been Plus 4 for each one, so I'm guessing tallying this up must be well over 2000mg a day, when I did my 24 hr there was only one urination that showed a plus 3 on dipstick that day which correlates to the 300mg reported over 24hrs
I have low blood pressure naturally 100/60, I'm off all heart medications, I healed quickly and came off them after 6 months of heart failure. I'm not diabetic, it doesn't appear I have any autoimmune disease such as lupus, all my bloods are normal, so is my kidney function, yet I'm still passing quite high amounts of protein.
I know only a nephrologist can help determine what's going on, but my appointment is not until the end of September, I do a lot of googling (too much information i know can make things worse!) and know that protein can continue to make the kidneys worse, I'm concerned there is an underlying condition, and even if its primary how quickly can this progress with high levels of protein? Could I get acute kidney failure? My mother has stage 3 CKD for years and passing no protein, however she is on ACE inhibitors. My GP said I will probably go on these, I was on these for my cardiomyopathy and preeclampsia and once my blood pressure returned to normal I had to come off them as I was very dizzy and light headed. So although they may help kidneys, I'm concerned I won't be able to tolerate them.
Also what could be causing this? primary glomeruphitis? Could the preeclampsia heart failure have caused permanent damage and hopefully now my heart failure is better no more damage will develop?
I have no other Symptoms at all, all this came about because I noticed my urine was still foamy.
My biggest concern is that although my kidney function is still normal, is it possible it could decline rapidly because of the protein?
First of all, the protein in the urine does not cause damage. At all. In some people it is evidence of some damage. This could have been due to your preeclampsia or heart issues. Since your eGFR is so high, you are not in any danger. Keep in mind that I am not a doctor, but since most kidney issues take years and years to develop you've probably got a couple of decades before anything drastic happens. You don't mention what your creatinine is, but with a gfr like that, it is probably normal. The appointment with a neph is probably just for safety's sake. It's good that you gp knows that he/she doesn't know enough about kidneys.
A neph will probably prescribe an ace, but if your bp is too low, there is no point in falling down dizzy and you probably won't be able to take it. Don't worry too much. I know of several people online who have had proteinuria for a very long time and nothing ever came of it.
If you want to baby your kidneys, cut back on sodium and animal protein. Not cut out, just cut back. And hydrate well with non-caffeinated beverages.
It took me over 25 years to get from protein in the urine to dialysis and I had type 1 diabetes. Try not to worry so much. Your child will probably be married before you have any significant issues.
Thank you very much for you detailed reply, it has given me some comfort, admittedly I have health anxiety ever since i went into heart failure and ended up on life support.
I don't know what my creatine level is, however my doctor confirmed all kidney function tests were normal and my GFR was over 90. I have read on numerous websites that protein can continue to damage kidneys further. Maybe this is not true then. My doctor did say the neph may put me on low doze ACE to see how I get on, and possibly may do a biopsy. She also said she does have patients spilling high protein for years they are on the ACE and although it's not eliminated it, it's remained the same and never got worse
I do know cardiomyopathy can affect the kidneys. But mine was pregnancy related and there is no information anywhere to say that long term damage/minimal damage can be caused to the kidneys once recovered from the cardiomyopathy. I did ask my cardiologist, he said its a question for the nephrologist. It was so rare what I had that no one has probably ever gone back and checked the urine of women that had the pregnancy related heart failure. It's only because I knew foamy urine was a sign of protein I decided to get it checked.
You will get all sorts of info on the internet. I was told (by my neph) that protein in the urine is simply a sign. That it does not cause damage. Eating a lot of protein with a damaged kidney can cause further damage. But that is what I was told. So to get to the bottom of it I would talk to your neph and get it straight from the horse's mouth (so to speak).
The good news is that even if there is damage, you can still have an excellent life. I am living proof of that (early damage in the mid 1970s and I'm still here and recently married).
Many Congratulations! I am hoping to book a wedding soon...before I am 40 its my dream at the moment.
You are right only my neph will be able to answer everything, but its comforting to know that I probably need not to panic at the moment, to be honest I havent panicked about it for 2 years, i think its when I just mentioned it to my doctor and I did a urine dipstick she said why have you left it this long if you had protein before, protein in the urine needs to be looked into! so I kind of got a little panicky She did say after the blood tests shed be much more worried if my GFR was not what it should be for my age, but its fine so she was happy with that.
I am just baffled at what is causing it, something primary within the kidneys or its secondary to something else. I did ask my cardiologist could the heart failure have caused it, even thought i recovered quickly, he said that would be a question for a nephorlogist. So I will just have to wait and see.
Thank you for responding, hope you are enyjoying wedded bliss
P.S I have been vegetarian for 20 years, so dont eat animal protein, however I do eat cheese, tofu, and soya. I am not sure if that is as harsh as animal protein. Bizzarly when I had alot of tofu one week (and that is very high in protein) my urine was negative all week of protein.
It's good to be a veggie person. That is easy on your kidneys. You don't have to be vegan. Some animal proteins are ok, just not that 20 ounce steak. Just watch the salt in some of the tofu and soya stuff. Some of the brands are higher than others.