Heart failure (HFpEF) and CKD with EGFR drop from 52 to 38 in 8 months - help!

[diasy]

Hi All,

Just looking for some advice as the GP is not much help. My father has had CKD for a good few fews ago stage 3A since we found out 15 years ago. However in June last year he went in for open heart valve surgery. He had complications after surgery and was put back on a ventilator for a week because I was told 'he stopped producing urine' and had a lot of fluid around his body. He came out of hospital with 'heart failure with preserved ejection fraction' which he never had before. When he came out of hospital his egfr was 52 and now 8 months later it is 38, it has decreased by 1 point every month in the last three months. GP just said they need to test again next month. Do I need to get him referred to a nephrologist urgently? I think a drop from 52 to 38 in such a short period of time is quite a lot?

Also, any advice on diet and exercise? He drinks a lot of tea with milk (2.5L per day) and general healthy diet with maybe too much protein? He swims 5 days a week, but I think this has been a bit too much for him, The only change in medication over the last eight months is that he takes bisoprolol for his heart which keeps his blood pressure quite low, he was on furosemide and lansoperole for two months after his surgery .....im at a loss as to why he has this massive drop. I wonder did they give him dialysis in ICU without me knowing hence why his egfr was good when he came out? Thank you all!

[orangecity41 NKF Ambassador]

Here is a link to National Kidney Foundation on eGFR. It gives some information that may be helpful when discussing with your father's Doctor. It also show relationship of age to eGFR.

My Doctor put me on a CKD diet based on bloodwork results of potassium, phosphorus, sodium and protein. I was diagnosed at level 3b.

kidney.org/atoz/content/gfr

[diasy in reply to orangecity41]

Thank you so much, I am phoning the doctor tmw, he has been tested for three months now and no advice whatsoever! His egfr is falling 1 point every month which concerns me. I will ask about his potassium/sodium and protein tmw. Have you been referred to a nephrologist? Are you NHS?

[orangecity41 NKF Ambassador in reply to diasy]

I have not been referred to a nephrologist, but do have a NP monitoring my CKD. I am on Medicare. Keep us posted on Doctor visit results.

[Badger2024]

absolutely he should see a nephrologist so that you both have an understanding of how to manage his health now and in the future. For now he should follow a low sodium diet. Not just added salt. Look for hidden salt too. Less than 2000mg a day I think. Someone will correct me if that amount is wrong. Usually you need to drink two to three litres of water every day but in your father’s case he probably needs to restrict fluid so you should be told how much fluid to drink per day by his cardiologist. If he hasn’t already stopped eating red meat he should. A little fish or chicken is okay but mainly plant based. I saw my nephrologist yesterday for the first time. She’s more interested in creatinine than eGFR

[diasy in reply to Badger2024]

Are you based in the UK? We are NHS so probably no hope of a referral.....what was your EGFR when you were referred and how long did you have to wait? I am phoning his doctor tmw as they have not even asked for a urine test, so I will ask for his creatine levels too. I would also like a scan done to make sure there is nothing sinister, he drinks 2-3 litres of tea with milk.....which is about 700ml of milk per day.....I'm trying to cut him down as I have read diary is bad for kidneys too. He has very swollen feet and fingers.....do you get this at all?

Regarding salt and meat, he does not add salt to food , but will make sure to look for it added to foods, thankfully he does not eat processed food and his red meat is once a week, but ill make that twice a week.

Thanks so much for the advice, its hard to deal with when you have no support from a GP.

[Badger2024 in reply to diasy]

I’m so sorry that you have no support. Not even from your doctor. I need to clear something up. It would be good if your Dad doesn’t eat any red meat at all. At least until he gets advice from a nephrologist. His body is very overloaded with fluid. This is very bad for his heart. Actually dangerous. 2 litres should be the maximum per day. Possibly less. Including soups and of course tea. The milk is the least of his problems now. Excess fluid can cause high blood pressure. Very bad for the kidneys. You say his hands and feet are very swollen. This can happen if damaged kidneys leak protein into the urine. He has also started in a new beta blocker that slows down and regulates his heart. It is not a magic pill. It can’t fix everything. It also can have side effects that include swelling of limbs and worsening of heart failure. I live in Australia now but did my nurse training in London in the NHS. I know that the NHS is suffering from lack of funds now. I also know that those who demand care get better care in the hospital situation. Even if it isn’t in your nature I think that you need to take your Dad into Accident and Emergency tomorrow before the weekend and earlish in the morning as they will be better staffed. Just tell them he is not well and you’re worried about his kidneys and heart and his swollen limbs. They can’t turn him away without examining him and taking blood and urine tests and will most likely get a cardiologist to see him at the very least. You shouldn’t have to be burdened with making health decisions. He needs you to just be the caring daughter that you are. Take care xx

[diasy in reply to Badger2024]

You are very good, I was actually thinking of just going to A&E , I will phone the doctor tmw and if im getting fobbed off again I will just go to A&E, I do think it is the beta blocker, he was referred to his cardiologist urgently in Dec, but we have heard nothing, he had had AF his entire life and could never tolerate beta blockers, they only give it to him since he left hospital last summer. Thanks so much once again. I will reply to this thread when I get some answers.

[Badger2024 in reply to diasy]

I’m so glad that you agree. Even if you get an appointment with your GP you will have to wait to get blood and urine tests then to get an actual appointment with both a cardiologist and a nephrologist. His kidney problems and heart problems are connected. He really does need to be seen more urgently than the referral system allows. Your Dad deserves better. Do not be fobbed off

[Badger2024 in reply to diasy]

also remember to ask for a print out of his blood and urine tests

[diasy in reply to Badger2024]

Yes I will do thank you for your help, greatly appreciated!

[renegade70 in reply to Badger2024]

most nephrologists are more interested in creatinine than egfr.

[Badger2024 in reply to renegade70]

Yes that’s what my nephrologist told me too

[Bobcragg]

I am sorry to hear about your father. I went from 75 efgr to 45 efgr in 6 months. I quit taking lisinopril and am back to 68 now after 5 months . I have read that such a drastic drop in efgr can be attributed to acute kidney injury. In my case it was caused by the lisonapril. Maybe your dad’s doctor can check it out. I hope he gets better soon.

[renegade70 in reply to Bobcragg]

i take 5 mg. 1 x per day to control urine protein and it works very well. this disease is so anxiety producing. regular testing, fluctuating egfr and other labs. sometimes it all seems too much.

[diasy in reply to renegade70]

I think if we are told earlier then we can be much better at stopping its progression, but the NHS does not even tell patients they have the disease!

[renegade70 in reply to diasy]

I think you are right. If there are five stages of ckd, why was I not told in stage 1. I know they were testing me back then since I have had high blood pressure since i was 19, now 70. I was told I had stage 3 at 65. I wish we had access to electronic records in those days.

[diasy in reply to renegade70]

Just to reassure you, my Dad has remained stage 3 for a good ten years now, it seems his EGFR goes up and down, he was never told I just got his records and found it there! Awful. He is being very proactive how with his diet and I will let you all know if it helps his EGFR. Take care x

[diasy]

Thats exactly what I thought.....I just wonder if the beta blocker he is taking is doing it.....he is on bisoprolol and its giving him terrible raynauds too. What heart medicine are you taking now? He has heart failure, atrial fibrillation and CKD?

[Darlenia]

We can't really diagnose on this site, none of us are doctors. Your father apparently does have multiple issues. I suggest taking a look at hismost recent labs - the numbers should give you important information as to what is "in range" and what is "out of range" regarding electrolytes (sodium, potassium, calcium, etc.) They will be flagged. It will definitely give you talking points when discussion your father's situation and his diet when you meet with doctors. Like Badger stated, the ER is available for medical care with situations like your dad is facing. You wondered if your father was on dialysis when he was hospitalized. To do dialysis, a patient will have a catheter placed either in their neck or chest if its on an emergency basis. The caths are noticeable. And there's a lot of hustle and bustle with labs being drawn, doctors closely watching the numbers, arranging for the port and a chair or bed often in other areas and floors of the hospital and so on. So I sense you or your dad would have noticed or been informed then. If you have access to father's medical records, the procedure will be listed there too.

[diasy in reply to Darlenia]

Thank you for your reply, he did have a catheter in his neck for 10 days, we were only allowed to see him for 1 hr per day and he was on the ventilator most of that time. All his labs were done in Dec and the GP said they were all normal, she did not mention that his egfr dropped from 52 in June to 40 in dec.....that is what bothers me the most, the fact that they either withhold info or she did not even bother to look at his June GFR numbers. It was only after I asked the secretary whey they keep repeating his kidneys and asked for the numbers that I found out about this massive drop. Will hopefully get talking to the GP next week, its impossible to get an appointment where we are in the uk. I think since I've had a very bad experience dealing with doctors in the hospital my complete trust in the NHS has gone.

Thank you again, I do appreciate these replies.

[Darlenia in reply to diasy]

Your dad's eGFR is still pretty high, usually dialysis starts when it's really, really low - my husband was put on dialysis when his reached 6. It's quite likely the neck port in your dad's situation was used to administer medications, etc. In your situation, the falling eGFR may be traced to your father's heart condition. When the heart no longer pumps well, pressure builds up in the main blood vessels leading to, and inside, the kidneys affecting filtration and lowering eGFR, forcing electrolytes to go awry, and more. Fluid retention also appears, particularly around the ankles and feet. Our organs are intertwined. It's hard to see this happening. I truly hope your GP guides you well and leads you to a good cardiologist and nephrologist and others. You are a very loving and caring daughter. Some have no one. Your father is fortunate to have you in his life.

[diasy in reply to Darlenia]

I think you are exactly right, I am arranging a private Echocardiogram as I think his heart condition may have got worse and caused more damage to the kidneys. I took him in Dec for an urgent referral to his cardiologist, but nothing yet, so I'll get the scan done myself as I think he needs different meds asap before his kidneys get a lot worse. His feet, but not ankles are swollen, but I can sense there is something not right. I just don't want his kidneys to get worse as I don't think he could deal with dialysis. I hope your husband is OK, it sounds like you have also been through a lot. Thank you so much for your replies, I have calmed down since reading them all. xx

[caringkriket]

I know after my surgery mine dropped however after all these years I just found out in pre surgery I had CKD stage 3b. I have been on NSAIDS for a long time so had to stop them and I was told lisnopril drops your egfr as well. Me personally I would go to a nephrologist that is what I am trying to do. My eGFR started at 36 now 38 but I was told just wait and we'll do labs. NO! You have to advocate for yourself and the 30's are too low for me. I DO NOT WANT DIALYSIS! I would feel better if a nephrologist would tell me that. Mine started 2 years ago and was 55 and never told me. There are meds to keep it from progressing which I am sure you know that but I just found out. Anyway my opinion a nephrologist! Good luck and God bless!

[diasy in reply to caringkriket]

It's so disappointing that the NHS does not take a proactive approach to this disease, he too has been told to wait for three months now. I do not want my father's disease to progress and just want advice on how to stop it getting worse! If it drops again this month, we will have to go privately to a nephrologist. He also took a lot of pain killers (cocodamol) for twenty years for bad arthritis and I have finally got him off them too. He has also stopped the salt and the red meat. I have found a drug called SGLT-2 inhibitor Dapagliflozin which I will be enquiring about with his doctor as it also helps heart failure. I despair at the NHS. I hope you manage to increase your GFR, thank you so much for your reply.

[Badger2024]

How’s your father doing now?

[diasy]

I found out from his GP that his EGFR was actually worse two years ago (34) and we were never told.....so his EGFR went up to 52 after his surgery and then back to 38 in Feb. I was annoyed we were not told his egfr was so low a few years back as he could have been more proactive in managing the disease. So the GP said we just need to wait and see what this next result is. He has cut out all salt and red meat, processed food and sugar, he needs to drop 1.5stone. His next blood test is next week and I will post here what it is. But I'd like to tell people that the EGFR must fluctuate ALOT so dont panic like I did. I just wish the NHS would be more honest with patients.

[VitaminD3]

How much vitamin D3 with K2 is he on daily?

[diasy in reply to VitaminD3]

none? should he be?

[VitaminD3 in reply to diasy]

Yes!!! Get him on vitamin D3 5000iu with K2 90-100 mcg everyday and take it with a meal.

[renegade70 in reply to VitaminD3]

be careful with vitamin d. i have been on it since i was told i was in stage 3 and recently my labs showed i was at a toxic level. my neph quickly told me not to take it anymore. d3- 5000 is too much, should be no more than 1000.

[VitaminD3 in reply to renegade70]

what was your toxic level? Depending on where you live determines how much you will need

[renegade70 in reply to VitaminD3]

116

[diasy]

Just to update everyone who may visit this thread.....after six weeks on a very strict diet with no red meat, no processed food, low carb and no sugar or salt diet, and a his EGFR has jumped back up to 45 from 38 and his creatine is 134 from 155, which I believe is back to stage 3A.....so I just want to let people know that diet and lifestyle changes do work, I just want thank everyone who has helped as this was all you guys that made these suggestions (not his GP, who couldn't care less) THANK YOU ALL!

[CKDnomore3953]

Hi Diasy,

I just read this thread and am wondering how your Dad is doing now? I am also CKD Stage 3, with some heart problems. It is challenging to navigate treatment when the health system is so overwhelmed and it takes so long to get the needed appointments. I hope your Dad is doing well.

[diasy in reply to CKDnomore3953]

Hi there,

He is doing very well, he was put on a strict kidney diet and it improved his EGFR, he also swims (slowly), but I think the most important thing for him is keeping his weight down. He is due to see his heart consultant soon and his kidney tests will be done again (will update this thread), I am going to ask if he can be put on an sglt2 inhibitor, which I believe helps heart failure and kidney disease. I think the disease progresses very slowly so try not to worry and eat healthy and excercise if you can, and make sure you are getting all the right medication for your heart.

Wishing you all the best !

[CKDnomore3953]

I am happy to hear that your father is doing so well. I am also on a strict kidney diet which is also very low fat (10% or less of total daily calories) for my heart. So far I am feeling well and doing daily exercise. My weight has stabilized at a BMI of 22 so I am hoping to maintain or improve my overall health on this diet plan.

Best wishes to you and your Dad, he is blessed to have you helping him with his health challenges.