Anxiety: Hi there, I know I have been on here... - Kidney Disease

Kidney Disease

6,558 members2,657 posts

Anxiety

Hidden profile image
Hidden

Hi there,

I know I have been on here before for advice but I am really struggling. My husband was diagnosed with having CKD stage 4 in March, eGFR ranges from 20-22. We have changed our diet enormously since then, only eating chicken, eggs and fish. He has his next batch of blood tests on Friday and I’m so anxious about them. Do you all feel the same when your tests are pending? How do I cope?

37 Replies

If you are doing all you have control over like a kidney-friendly meal plan and he's following a physician approved exercise regimen, he's taking all of his prescribed meds, no OTC meds or supplements unless physician approved, that's all you can do. Worrying about the labs when you are doing all you can is counterproductive. Your stress will affect your husband and that may have an impact on his numbers. If you and he do all you can the rest is up to his kidneys. Don't stress out. GFR can and will fluctuate with each lab. Don't stress over either one or two numbers outside the range. After diagnosis, the GFR is best determined by a combined average of all of the GFR results since the beginning.Relax, do all you can and enjoy life.

Hidden profile image
Hidden in reply to Mr_Kidney

Thank you Mr Kidney,I wish I could enjoy life. I don’t share my worries with my husband or family, that’s the problem. I don’t want to upset them with my feelings but I’m so scared

Mr_Kidney profile image
Mr_Kidney in reply to Hidden

Do your best to relax, follow the directions of his nephrologist and renal dietitian. You can only harm yourself, emotionally, if you worry about things you can't control. The more you learn about CKD the more knowledge you obtain the more power you give yourself to overcome any fears of the unknown.When I received my diagnosis I was pretty upset. The more research I did, the more I learned about CKD, I came to realize how much control over my health I had. I'm still researching and learning but I've made the hard decisions and with that came the peace that comes from knowing I'm in control of my health and I plan on enjoying the many years I have in front of me.

Hidden profile image
Hidden in reply to Mr_Kidney

Thank you, I do hope so, we haven’t seen a dietician yet, not until mid June so we have a very basic diet.I just think that if his eGFR hasn’t improved after the dietary change then what’s the point? We exercise already so nothing changed there.

Mr_Kidney profile image
Mr_Kidney in reply to Hidden

You are setting yourself up for more heartache. He didn't develop CKD overnight and you can't expect a major change to happen overnight either. It takes time for the GFR to go up with a proper meal plan and a physician approved exercise regimen. If you are serious about learning about CKD why don't you go to davita.com and sign up for a virtual, free, 90-minute Kidney Smart Class and learn. You'll be provided with a lot of information and resources to help you both get started.Best of luck.

Hidden profile image
Hidden in reply to Mr_Kidney

Thank you, I didn’t mean to sound that we wouldn’t follow advice, it’s just getting me down

Bet117 profile image
Bet117NKF Ambassador in reply to Hidden

Hammerblow,

Your feelings of frustration are absolutely normal as we all want immediate change.

Mr._ Kidney gave you some great thoughts and advice.

This is all a process which takes time for the components to fall into place. Medication, diet and a bit of exercise are the keys.

Have you thought of making a few changes to your diet; say adding in more low potassium vegetables such as cabbage, onions, bell peppers and cauliflower? There are many things that you can do with them. If the numbers are good, try servings of beans rather than animal protein. I cook with them all of the time.

Use light wheat or white bread wraps; lettuce, onion, peppers, beans with some olive oil and red wine vinegar is delicious.

Pasta with vegetables, with a garlic and oil sauce is good.

It's a lifestyle rather than a diet- working out the kinks takes time.

Glad that you are seeing a dietician as they will suggest foods and products which are both appetizing and nutritious.

Here are a couple of links which should give you some ideas.

nephcure.org/livingwithkidn...

kidney.org/newsletter/choos...

kidneyfund.org/kidney-disea...

One breath and moment at a time. Please reach out again and share how things are going.

In your corner!

Bet

Hidden profile image
Hidden in reply to Bet117

Thank you so much for taking the time to reply..we do eat low potassium veg but your advice is great about roasting them.My husbands ACR urine result has improved, don’t know if that’s a good sign, hopefully as you say, things will stabilise over time.

Thank you again

Bet117 profile image
Bet117NKF Ambassador in reply to Hidden

Gosh, no thanks ever needed. Happy to share when I can and support. Delighted to hear that your husband's ACR has improved. Every move in the positive direction is one to be thankful for.

Hopefully with good amounts of water, importantly watching the amounts of protein ( no red meats or cured foods) and keeping sodium to 1500-2000mg a day, potassium and phosphorous according to labs, things will continue to stabilize.

Kidney disease is not curable, but it can be managed with the goal to stop progression.

Believe it or not, my husband loves my roasted vegetables and eats what I do. I also may sprinkle bits of a olive oil and red wine vinegar salad dressing over the vegetables before cooking. I just watch the sodium levels on the bottle.

They also re- heat very well.

Try the pasta as well. You can Google a low to no sodium oil and garlic sauce.

Remember that it's not a diet,, it's a lifestyle and a work in progress.

Please let me know how you are both doing.

Bet

Hidden profile image
Hidden in reply to Bet117

Do you have to limit your potassium as well? Could I ask you about your diagnosis?

Bet117 profile image
Bet117NKF Ambassador in reply to Mr_Kidney

Agreed! This is all a process which doesn't eradicate over night. Great advice!

I would amen the view that the more you know the more it settles you. I got a shock when my seemingly stable gfr (it wasn't actually stable but my nephrologist wasn't concerned with its gradual decline so neither was I!! ) went mid 40's to mid 30' from one annual reading to the next.

Quickly immersed myself and its taken the sting from the shock. Its like anything, immersing takes the mind off the worrying. And gives you tools too.

Is it a GP or a nephrologist you're seeing at the moment?

The question of plant vs animal protein is something to look into. But at the very least a low protein diet should be asked about. 6gr/kg (healthy) body weight appears standard issue.

So not just no red meat but limit the protein full stop. It's a pain in the face tracking stuff but it's the only way. You doing that? Look up cronometer. It's a free app that allows you to track all you eat.

Best..

Hidden profile image
Hidden in reply to Skeptix

We are just seeing a Nephrologist who just told us to eat chicken, fish, eggs and apples. We need a low potassium diet too so we are being very sensible

Skeptix profile image
Skeptix in reply to Hidden

Thats about all my nephrologist said, which was pretty useless advice.

Any word as to quantity of protein??

Like, helpings of chicken curry or a fish and chips from the takeaway isn't going to get you anywhere.

The point being that if your damaged kidneys cannot process the amount of protein or potassium or whatever you're diet throws at it, then you have to stop throwing large quantities of those things at your kidneys.

You'd be very surprised how quickly you get up to 6gr/kg of body weight in protein. Like you get it from things other than meat/dairy/eggs in addition. He could be loading up on protein still?

You could mail your husbands nephrologist and suggest he go on a low protein diet. Or do what folk inevitably seem to end up having to and shift away from animal protein.

I've just done so. You's think there's be a grieving but he'll no. I've to preserve my kidneys and if that means no meat then no meat.

Hidden profile image
Hidden in reply to Skeptix

We are seeing the Nephrologist on Tuesday, you can only go by what the experts tell you can’t you? What do you eat then? Just plain vegetables?

Skeptix profile image
Skeptix in reply to Hidden

I had an episode of colitis a few years back. Gastro put me on the same meds as another doctor had done 15 years prior, the first and only other time I had this flare up.

After it cleared, the gastro announced that he wanted to keep me on one of the meds for life. For life!

"One flare up and the only other 15 years before. Are you out of your mind?"

My GP was aghast when I told her. The drug he wanted me on life was, in her words, a dirty drug. One that causes all kinds of other issues.

Experts. You need to be expert enough to know they are experts. And I was expert enough to know the suggestion to take a drug for life was insane.

The latest science (and this on the US National Kidney Foudation site - i.e. mainstream) indicates very low plant protein + keto supplements (supplementing the low protein intake) is the best diet for ckd 3-5.

Better than low protein incl meat, better than low protein plant-only.

So yeah, non-animal diet. Doesn't have to be plain (as in boiled carrot and broccoli), just plant only.

Talk to your nephrologist but if you're not at least getting a 6gr/kg limit for all protein intake at this stage then run for the hills.

Read around here on a guy called Lee Hull. He was onto the very low plant protein science a few years back. I don't see why a nepbrologist ought to be up to speed, then not being dieticians and all

Bet117 profile image
Bet117NKF Ambassador in reply to Hidden

Just a thought, jot down what foods you are eating regularly and show it to your nephrologist. I have done this and it proved to be worthwhile.

You don't have to eat plain vegetables. I sure don't. I roast, grill or steam my vegetables. If I roast, I use non- stick cooking spray on the bottom of the cookie sheet. I will roast a partially steamed head of cauliflower, onions, peppers, zucchini, eggplant, carrots on occasion and even asparagus. I sprinkle onion, garlic powders, organic smoky paprika and a dash of pepper on them. I occasionally will also sprinkle my olive oil and red wine vinegar mix on it and roast at 425 degrees until tender.

Grilling is easier as it naturally takes on a smoky flavor. Even add some pineapple.

Give it a whirl!

JohnInTexas profile image
JohnInTexas in reply to Skeptix

You may want to consult with a Certified Renal Dietician who will review your labs and provide individual guidance on what may stabilize your condition via diet and exercise. The RD will cover portion sizes, what foods to avoid and provide educational material on how to identify salts, sugars, potassium, phosphorus and protein for a healthy kidney friendly diet. It takes discipline and followup labs to follow progress but is doable! Visit eatright.org and they have more diet info as well as RD's within you zip code range. An RD also works with Diabetic patients and the diets somewhat overlap. When in doubt, contact your PCP, Urologist or Nephrologist for a referral. Most RD's work with Physical Therapists who may help provide a specialized exercise plan based on you age, BMI and other factors. Good luck!

My creatinine was at that level 10 years ago. I was diagnosed 30 years ago. I started to "prevent, prepare, embrace" - that's all I can do for things I can control.I found a very good Nephrologist and together we planned and monitored my journey. Including options when the time comes. Now I have a new kidney without going to dialysis.

Point is, you can influence only as much as you can control. Don't lose sight of other important things and enjoying life.

Take care and be well.

Hidden profile image
Hidden in reply to Okiksaints1955

Are you in the US? So you got a kidney without even going on dialysis? I’m in the UK and I think you need to be on dialysis before a transplant.

Okiksaints1955 profile image
Okiksaints1955 in reply to Hidden

I am in Singapore.

4 options in order of better results and quality of health and life.

1. Living donor transplant

2. Cadaver donor transplant

3. PR (water) dialysis

4. Hemodialysis

Find the Nephrologist that you can plan your journey. He will be your partner in designing the right kidney management for you. Including change in lifestyle, diet, exercise, mixed and match of allowed meds, etc - all focus on protecting the kidney and prolonging the functionalities.

You can go directly to transplant - passing through dialysis increases the failure and rejections. Dialysis adversely affect your other organs and health.

Don't self analyze, a Nephrologist is the expert that can provide you all the guidance.

Skeptix profile image
Skeptix in reply to Hidden

Even if a relative wants to live donate you have to wait??

Hidden profile image
Hidden in reply to Skeptix

I don’t think it’s quick, I’m not sure as we hopefully aren’t at that stage yet

I had my transplant done in Singapore (I live here). My donor (daughter) flew from the Philippines. She arrived on 8th March and the surgery was done on 4th May. And she had to quarantine for 14 days. So the vetting, testing, Ethics committee interview, Ministry of Health approval, etc took about 6 weeks.We had to research and prepare for everything we can find (we were over-prepared) and my Nephrologist was fantastic (7 page report to Ethics Com and MOH). The Ethic Committee meeting took 5 minutes with the my Nephrologist, 10 minutes with my daughter and 20 minutes with me (I was very open and could have offered more). We were relaxed and candid - it helped a lot

Expensive but worth every penny.

I understand your anxiety as my dad and I are anxious when retesting is due for my mum (as it is very soon). Albeit not as anxious as when her annual MRI scan is due since she had a cancerous kidney removed ~4y ago!.

But, if the test results are not good, we view it as a challenge to further improve diet & well-being.

Anxiety is normal but remember only worry about what YOU can control not what is out of your control.

I really hate the hang up folks have with GFR on this site. That test is a snapshot of one day in your (in this case, your husband’s) life. I understand the fixation on the test as it is the number that classifies all of our stages of disease. However, if your husband is like the rest of us, it will fluctuate a lot. In my case since 1996 I have had readings as low as 14 and as high as 36. I believe for me personally it has much less to do with diet than controlling my blood pressure. For example, in 2020 for a myriad of reasons I did not see a doc until I switched my care to the VA in December. Therefore, I had been without my blood pressure meds for several months. My BP was 153/96 during my initial visit with the VA clinic in December 2020. My GFR was 14 at that visit and creatinine was 3.8. I saw my nephrologist in March of 2021 and creatinine was 3.0 and GFR was 19. BP at that appointment was 130/90 after 3 months back on meds. In April 2021 I had appointment with neurologist and creatinine was 2.8, GFR was 21. BP was 117/72 after four months on meds. Historically, for me, over the 25 years I have lived with stage 4 CKD, if my BP is not controlled my numbers are much worse.

I have issues with potassium and protein being consistently elevated and have found that diet controls those readings much more. I am not a diet fanatic and have never been on a formal renal diet. I cut salt and refined sugar from my diet before my kidney issues. I have always tried to eat lower fat, limit calories and workout at least 7 hours a week. I drink only water and 1 cup of coffee in the morning. I do mostly eat WHAT I want just not HOW MUCH I want to eat of it, especially my wife’s cooking. I use natural stuff like real butter, real cheese (as opposed to Velveeta), and lots of spices (NOT salt nor any “all spices” like season salt but stuff grown in a spice garden). I have done my best to adhere to what we have all heard most of our lives, eat right, exercise, get enough sleep, manage stress, and manage weight. I do eat red meat. I had 2 hamburgers 3 weeks ago and a couple of months before that I had my favorite a ribeye steak. Mostly I eat chicken or pork but I can’t stand fish except for deep fried catfish and there are no benefits from eating deep fried catfish. I can’t do plant based as I am not a huge fan of veggies of any kind so I try to eat a mediterranean based diet. I have not found, though, for me it makes much of a difference in the dreaded GFR reading. I do not have diabetes so maybe that is a reason or maybe that is just the way it is FOR ME.

For the above reasons and for all the other wonderful answers you have received DO NOT FRET OVER 1 GFR READING. In fact, I would expect it to go down. Why, I don’t know-Murphy’s Law maybe? Yet, even if his GFR is slightly lower it doesn’t mean he is losing kidney function on a monthly basis only that something is different with his body vis-a-vis the last test. What would be concerning is a trend of consistently lower GFR readings quarterly taken over a 2 year period for example. Finally, I would recommend as Mr. Kidney and others have to get any co-morbid conditions under control. The 2 biggest that kill kidneys are HBP and diabetes. Control those asap. Get in some exercise and work up to 45-60 minutes of low intensity aerobic exercise daily. Control those things you can and there is no use worrying about a test result that you can’t control. I applaud you for seeking support in this forum. I urge you to seek out sources to educate yourself because even the end of this we all face isn’t nearly the ordeal it was just 10 years ago. Be your husband’s advocate and he needs to be his greatest advocate, find a good nephrologist if you do not currently have one and create a care team for your husband that will be there for his entire journey. A vigilant, educated, and fully informed husband and wife team will create an atmosphere of confidence within you to meet and beat this head on without any significant alteration to your long term life plans. I wish you much luck and keep us informed.

Hidden profile image
Hidden in reply to Blackknight1989

Thank you for your reply, really appreciate it. My husbands BP was high, has been controlled for the last few months so hopefully this will help his kidneys.He used to get cramp in his legs but hasn’t had this for weeks so hoping this is a positive sign as well

Blackknight1989 profile image
Blackknight1989 in reply to Hidden

I know it has been a long weekend at least in the US. With that happy Memorial Day and thank you to all the vets that are members. All gave some, some gave all!

Hammerblow, I assume you have gone to the doc and your husband has had his labs. You care to update? Of course, that is a personal decision but lots of folks here for you no matter the outcome if you need us. Many of the replies from folks who have a wealth of knowledge and want to help! Regardless of your choice, I hope the news was good or at least not more bad. Keep educating yourself and your husband, be your best advocate and seek new care if unsatisfied with your current specialist. Come here when you need support and help and I am sure we will all be here for you both.

If you feel comfortable give us an update at your convenience. My best to you and your husband as you continue on your CKD journey!

Hidden profile image
Hidden in reply to Blackknight1989

Thank you so much for your kindness. My husband had his tests on Friday, eGFR is 23, so hasn't improved but hasn't got worse. He is on steroids for his kidney problem and obviously they aren't working but have made his blood sugars go up and his liver results have now out of range. Seeing our Nephrologist today and we are going to ask if my husband can be taken off them.I need to get into my head that my husband could be stable like this for years and not to worry every day, but its so hard. As I have said before, I would just love to wake up in the morning without a stinking feeling in my stomach.

Thank you again for taking the time to reach out to us.

Blackknight1989 profile image
Blackknight1989 in reply to Hidden

You are both still new to the diagnosis so it will take some time for the sinking feeling to go away. However, if you educate yourself you will see it is not the end of the world. There are some kidney foundation like and national Heath agencies that are starting to recommend transplant prior to ever starting dialysis. Especially is it is a live donor and family member. Dialysis is not near the ordeal it was 5 years ago and transplant isn’t either. I know a kidney patient who needed a transplant at age 7 and need another at age 27. He said the new transplant procedure and matching is so easy compared to 20 years ago, he left the hospital after 2 days!

AND that is the end of this journey not now. As I stated I have been relatively stable for 25 years with stage 4 CKD. Creatinine has been 2.6-7.7 and GFR 13-22. Averages are 3 and 17. If your husband eats correctly, manages and HBP and diabetes, does an average of 30 minutes of aerobic exercise, daily, maintains a healthy weight, gives up salt and other unhealthy spices, consumes no alcohol, consumes no NSAIDS, easy on all meats, educated himself, and is his own best advocate there is no reason he can’t maintain his stage for a while barring some underlying cause as of yet unknown. I truly believe the best medicine for the sinking feeling in the stomach is to educate yourself about all of the disease. Site like National Kidney Foundation, National Kidney Fund, NIIH.gov, NHS and AAKP are a great start and those will have other links you can use to further your education. Also, if you have an iOS device the apps from responsumhealth.com/about-us/ and from the NKF NKF KDOQI App Now Available! Which are the clinical guidelines to all nephrologist regards CKD. Many other apps available on NKF.org under the professionals tab if you have iOS or google device. Spend the time you feel that sinking feeling on these sites and other resources you find there and you will notice the more you know the more that sinking feeling sinks away! Best of luck to you both and please seek us out for any support you may need! Thanks for the update!

Careful with eggs....egg whites a couple times a week is ok. Try and cut down on meats as well. ..maybe aim for no meats every second day or so. It helped me greatly. I ate meat (chicken or fish..no pork or red meats) every day and it didn’t help.

Hidden profile image
Hidden in reply to Dllfb

What do you eat then?

Marvin8 profile image
Marvin8 in reply to Dllfb

Why careful with eggs?

Protein especially too much daily intake of protein can damage kidneys and can even cause keto acidosis. But please do your on research on sites like nation institute of health, Nation Kidney Foundation, AAKI, Mayo Clinic, Hartford Medical School and others. Try to stay away from “new” cures and even system diagnosis sites like webmd. At the National Kidney Foundation and AAKI they list resources and links that are awesome. Finally remember I am only a “Shad Tree” doctor (lol!) because I have spent about 5 of my 54 years in the hospital and 2/3rds of that for CKD. Please don’t count my information or that of others as medical advice or even medical expert info. Seek your doctors or on of the good websites represented for 100% verified info....and come here to get support and ideas. Best of luck!

I was simply asking about whole eggs vs. egg whites because much of the accepted wisdom over the past 5 decades regarding eggs and cholesterol has been called into question. Yes, I'm well aware of the need to decrease protein consumption, an egg containing about 6 grams. Thanks for your reply, though, and wishing you continued good health. :)

Oops my apologies! I don’t think the reply was specific to the cardiac issues with eggs but then what do I know as I completely misinterpreted your reply...lol. I agree eggs or more specifically the yolks continue to get bad press vis a vis cholesterol and cardiac issues. As Walt Whitman said...”All things in moderation.” Again I am sorry as I am still new to the forums and do not know all the posters. Thanks for you clarification and kind post! All my best!

No problemo, all's good. Welcome to forum. I hope you find it as helpful as I do. 👍

You may also like...