Confused, angry, sad

[zoro51]

I was diagnosed with CKD last week. My GFR is 45. I have no risk factors for it. The only thing I can come up with is the Phillips CPAP machine I have used for years which has been recalled. The machines filters break down giving off carcinogenic gases and particulates which can cause...SURPRISE kidney damage. I am so angry, sad and confused about what to do. I keep find renal diets which contradict each other in terms of what to eat and what to avoid. What is the best, reliable source of this type of information?

[Bassetmommer]

Wow, this is interesting. First of all, I would confirm that this is the cause of your CKD. No diabetes or high blood pressure? I did some reading on this and it said that you should have had other noticeable symptoms such as headaches, runny nose and maybe a cough. Did the machine have black particles in it? There is a hefty law suite being built and I would contact those people to participate.Next, have a medication review done also to make sure none of your prescriptions are affecting your kidneys. Stop all OTC until you verify them safe. NO ibuprofen at all. Make sure the supplements you take are ok.

See if you can get a referral for a renal dietician. Diets really need to be tailored to the individual. In the meanwhile, things to cut down on are salt and protein. Small amount of protein are things like eggs, chicken and legumes. Watch out for processed foods. Try to eat whole foods such as veggies and grains. Cutting out the garbage in the diet is just good practice for anyone with CKD. You are at a stage where you can really make an impact on saving kidney function.

Take a kidney class. Take a look at the National Kidney Foundation website for more information and a good place to start.

You have made me now want to go back and see if I can find out what CPAP machines I have been on through the years. Thanks for the information.

[zoro51 in reply to Bassetmommer]

Thanks— no I don’t have diabetes or high blood sugar. I used to wake up with headaches occasionally, at times my throat would swell up to the point I could barely swallow— then that would disappear within a few hours, runny noses I just chocked up to the humidifier. Several times I woke up to the acrid smell of melting plastic— but could never find any sign of that in the machine. One of the gasses released is toluene— highly toxic and is a known carcinogen. What really upsets me is that they KNEW about this for years and said nothing. Wonder how they sleep at night?

[Bassetmommer in reply to zoro51]

oh my, that's terrible. I hope you gain get something with the lawsuit. It's like ibuprofen. It's what destroyed my kidneys, and the doctors still prescribe it. Let us know if we can help with your kidney situation.

[mainecoon1 in reply to zoro51]

They sleep well.Pull up class action law suits and get your name added.This happened to me with breast implants.

[lowraind]

I would also review the many posts on this site referring to CKD in general and to diet in particular. Also, was this based on one test, or do you have at least three recent tests on which this diagnosis was based?

[WYOAnne]

Have you talked to your diagnosing doctor regarding your thoughts on your cause for CKD? They can do a kidney biopsy to determine the cause. Maybe he could help you rule out other causes.You could have a good lawsuit against the maker of your CPAP if that is the cause.

[zoro51 in reply to WYOAnne]

3 tests

[RickHow]

Hi. You have come to a good community to talk about not just your diagnosis but also your feelings about it. You did not give your age. I offer my opinion and advice. I'm not a doctor but here is what I think. First of all an egfr of 45 is not a death sentence. I have a egfr in the same range. Have been in that range for five years. I lost one kidney due to cancer. From that point on I was told I have CKD in the other kidney. You are thinking the cause of your kidney decline is ydue to your CPAP. Perhaps but just as likely are a million other things. Millions have CKD that do not use CPAP. But in the end the point is not to waste your time stressing over the cause, rather than what should you do about how you are now. MOST doctors will not even refer you to a kidney specialist with an egfr of 45. I also have stage 4 cancer (from the diseased kidney that was removed in 2017) that is in my bones. Because of that I WAS sent to a kidney doctor. It is a total waste of my time with an egfr of 45. She sees me every 6 months or lately just once a year. She monitors the decline of my kidney, NOT by paying attention to egfr. But rather by seeing my Creatinine level in my blood. There are no medications. There are no treatments. The dietary advice she gives me is sensible and easy. Keep hydrated, but there is no need to over hydrate. Just drink enough to keep your urine output lighter in color. About 50 to 60 ounces per day. Avoid excess protein and foods high in phosphorous and potassium. BUT not to eliminate them from the diet. Just try to keep them within daily recommended levels as show on all food labels. Monitor your blood pressure. Then "see you next year". And to be aware that going over these recommended levels (let's say having a steak occasionally) is NOT going to change your egfr. Just don't make it a habit.

While diet is sensible to control you also need to look at your medications. Some medications are harmful to the kidney.

Frequent blood testing is important to track your Creatinine level.

I assume your doctor did some kind of ultrasound or CT or xray to see if there is anything going on in your urinary tract/kidney's that is causing your efgr to be 45. Such as kidney stone, tumor, cysts, etc.

One thing I have learned having just one kidney, egfr like yours, plus stage 4 cancer is to NOT waste your time on anger, searching for answer on google, looking for miracle advice. You are obviously under medical care. Follow that advice of a trusted doctor.

[Darlenia in reply to RickHow]

Excellent information. Creatinine levels, BUN numbers, and more are far better factors in establishing kidney function than EGFR. Exercise, diet, medications, age, hidden diseases, and more also have direct influence on numbers. Certainly, more than one set of labs is needed to firm up a diagnosis. Appreciate your level-headed perspective.

[zoro51 in reply to Darlenia]

I’ve had 3 sets of labs. I don’t take a lot of medications— and being a nurse I’m vey aware of the side effects— that’s why I avoid taking them. If you have ever listened to tv commercials you would run screaming from most of the meds out there. The side effects aren’t worth the the risks in most instances. I’ve had some time to process this and all I can do is to watch my diet, hydrate, and I started going to the gym ( yeahhh me)! Life gives you lemons— make lemonade! No one can garauntee I will live 20 more years or drop dead 10 min from now. So I’ll just enjoy my time and stop stressing because that doesn’t change a thing and it just makes life miserable. I’m sorry to hear about your cancer— I wish only the best for you. If any of you have Amazon Prime take the time to watch the documentary “Heal” it’s uplifting and informative.

[RickHow in reply to zoro51]

You are correct that no one can predict the time of our deaths. But that is true no matter if you CKD or not, Cancer or not, etc. All 3 of your labs showed your CURRENT egfr is 45? Being a nurse or not you surely know medications more than an average person. BUT I find that while all medicines do list side effects, few, if any, are listed for those with CKD. There are unique and additional side effects of medicines on such a person with CKD. While I am NOT an advocate of going to "doctor google", take a moment and just take a medication (perhaps lisinopril) and ask "lisinopril and CKD" (Or whatever drug you take). Sometimes it is surprising what you find.

Being a nurse you know best that guessing is not an option. You should find a doctor who will at least do ultrasounds (or equivalent) of your kidneys and urinary tract. AND a thyroid test. Without those I would not be sitting here talking to you today. I would be dead. My Creatinine level started to decline. The doctor did NOT just say "oh you have CKD". He ran scans, found the cancerous tumor on my one kidney and we removed the kidney. GET TESTED.

You asked for the best source of information. I personally like the information found on website Kidney,.org, and on the Mayo Clinic website.

[Rkgaither1954 in reply to RickHow]

Wow Rick! That’s the most sensible advice I have ever heard about CKD. I’ve had CKD for years and my GFR is now at 40. I have severe itching, nausea, and fatigue so bad I stay in bed most of the time. I have been to several nephrologists who say my problems are NOT from my kidneys! I know it is! They just say the only thing that can be done is dialysis when my GFR gets down to 15! I say I don’t want to get to that point! They are no help at all! Thank you for you’re sensible advice!

[RickHow in reply to Rkgaither1954]

We all react to kidney problems differently. While your problems (nausea, etc.) may be easily caused by ckd as you intelligently think, there could be something else. Wouldn't that be great. BUT your kidney doctors are not helping matters. Search for a general practice doctor and see what they have to say. Don't put emphasis on your kidney problems with him. Just tell him your symptoms and see what he says is the cause. Keep us informed. Good luck.