Please help me!: Please help me, my 54 year... - Kidney Disease

Kidney Disease

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Please help me!

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Please help me, my 54 year old husband has just been diagnosed with CKD stage 4, his eGFR was 22. We found out by accident, he had no symptoms and has always been well. We think he has had this for a while and is currently on steroids to try to reduce the inflammation in his kidneys. Last blood test we had showed no improvement in his eGFR (9 days after starting the steroids)

We have changed our diet, low potassium and low salt and to do everything we can to show this disease down.

I am so depressed, I can’t think of any positives about the future. I think our lives have finished.

I worry about our family, money, quality of life.

Please could anyone advise me how their cases, if they are well on dialysis (don’t think we are at that stage yet, thankfully)

I would appreciate any advice on coping

Thanks

41 Replies

Hi and welcome to the community. Your lives are certainly not over. Sadly, it is not uncommon to be told in the later stages that you have CKD. While there is no cure, there are many things you can do to slow the progression. Obtain a referral to meet with a nephrologist. Then ask for a referral to meet with a renal dietitian. Bring hard copies of your labs and you can help develop a specific kidney-friendly meal plan specifically for him.The two leading causes of CKD are diabetes and hypertension. Bring a list of all medications, especially OTC, and supplements when you meet with the nephrologist. Also, be prepared to fill out a detailed medical history. The nephrologist may order diagnostic tests to determine the cause. Getting under control of any underlying condition is a major step. Stay hydrated with water, no NSAIDs like ibuprofen, Advil, and Aleve. For minor pain, you can use Tylenol.

No red meat, no cured foods, no smoking, very limited alcohol, and stick to poultry and seafood until you meet with an RD.

You can go to davita.com and register for a virtual, free 90-minute Kidney Smart class. You'll be provided with a lot of information and resources. In the meantime, you can go to kidneyschool.org and view the learning modules. Any questions you have can be directed to the nephrologist.

Relax, as the more you learn the more power and control over your health you obtain the better you'll be able able to handle living with a chronic illness.

Best of luck.

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Hidden in reply to Mr_Kidney

Thank you, we are in the UK and have already seen a Nephrologist. We have an appointment with the Dietitian in June. Nephrologist told my husband just to eat chicken, eggs and fish, which we have been doing. Husband doesn’t smoke and has only had one alcoholic drink in 2 months and that was to celebrate my daughters birthday.My husband has been diagnosed with Tubulointerstitial nephritis caused by a painkiller apparently, he is on steroids to try to reduce this but after 9 days showed no improvement. Also was found to have high blood pressure which is now under control.

Thank you for your reply

Hi Hammer,

I am also a 54 year old male who has lived with stage 4 CKD since 1996 or just 15 days after my 29th. birthday. My creatinine runs from 3-4.5 and eGFR from 12 (stage 5 levels!) to 21. In fact, in December 2020 eGFR was 13 and in both March and April it was 20/21 respectively. Only within the last year has the CKD become an issue and that is only because I have 3/4 other co-morbid conditions that go with the CKD. I have been forced to leave my profession of 20 years simply because I can no longer sit at a desk and service clients for 9/10 hours a day. Truthfully the only issue I have with the CKD and this has only been an issue in the last couple of years due to the osteoarthritis in every joint prohibiting my consistent work out regimen. When I was forced to stop 20 minutes of light weight training and 45 minutes of aerobic training, I noticed the tremendous fatigue that goes with CKD as severe as mine and your husbands.

So please don’t feel as if this is the end of the world and goodness knows I understand how and why you ((and he)cause you know we males don’t do well with facing both constant doctors visits and our own mortality no matter what our age)) would feel as if this drastically alters the plans you two may have had for the autumn season of your lives. However, it doesn’t have to be that way. As I said, no problems for me for 23 years until the OA, HBP, High Cholesterol/Triglycerides and Peripheral Neuropathy became so bad that all of those conditions finally started me down a hole to where I was no longer able to drive or walk. So if only CKD and stage 4 it took him 54 years to get here, it most likely will not lead to dialysis or a transplant in a year. He can stabilize by being proactive and actively working everyday to take care of his condition and hisself.

My program of success was really simple. First do all that you have been told to do all your life. Eat the right foods to nourish your body but not to add weight or chemicals killer to the kidneys, workout daily both strength at least 20 minutes and aerobic for 40 minutes, never, ever, ever take another NSAID nor another drink of alcohol the rest of your life, find a great nephrologist who will take the time to provide all the necessary guidance, resources, tests and listens to both of your concerns, educate yourself with all the tools Mr. Kidney gave you, go to the NIIH website and all the Kidney organizations out there on the internet. You will find that while there is no cure and no way to stop the slow downward movement to stage 5, dialysis and transplant those issues are not near the ordeal they were 10 years ago. You can do Dialysis in home now, the transplant operation is much easier and safer now and the prognosis is way better now. In fact, I learned just a couple of months ago that some docs and maybe the NIIH or an agency recommended a proactive transplant procedure at stage 4 to save the wear and tear on the body of going through years of dialysis. Be proactive and be your own advocate because no one else in the long run will. If your husband is ever in the hospital ask what is being put into your IV all the time every time. My last major orthopedic surgery I had was in 2014, my second knee replacement, and the nurse had a huge syringe of a NSAID ready to help my pain 8 hours after the surgery. Could that have been the blow that shut the kidneys down for good, maybe, but I am glad I didn’t have to find out. If you and the nephrologist don’t click or they don’t do what they should as in taking time with you both to explain all things CKD, address your concerns and the do the necessary tests at certain specific intervals, then find another nephrologist. Don’t be satisfied with mediocre care when you yourself can have great care it just takes much more work than our politicians or Steve Jobs as they just fork over large sums of cash to get their tremendous care. Finally, don’t be fooled by claims on the internet or from good friends who have found the cure because there is no such thing yet. All of us with CKD know we face the dialysis/transplant situation is we live long enough and something else doesn’t get us. Don’t go to either symptoms based websites or non-research based websites to find information. The best Information comes from your nephrologist and the care team they put together. However, websites like NIIH, Harvard Med School, and the Mayo Clinic can be trusted. Organizations like NKF and AAKP have tremendous resources for us as do some of the posters on here. However, no one is a nephrologist on this board (at least I don’t believe anyone is so credentialed) or even a GP so don’t take medical advice from us...lol!

I related my specific issues so you could understand it is not the end of your and your husbands world, as well as, what has worked for me. I am a big believer in Walt Whitman’s motto all things in moderation so I don’t have a dietitian nor do I limit specific stuff. However, since February 16, 1996 the only things I drink are water and coffee, no salt ever and nothing goes into my body as far as either prescribed/OTC meds or supplements unless I have a face to face conversation with my nephrologist. Even GP’s can forget or just don’t know sometimes and prescribe Motrin or whatever is the NSAID flavor of the decade is now for bone pain/joint injury and move your husband from stage 4 to stage 5 in a week or so. Thus, be proactive. I believe that you will, after this initial shock period we all go through, find out that life will (HOPEFULLY) go pretty much like you and your husband have planned with only minor modifications. I wish you Godspeed!

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Hidden in reply to Blackknight1989

Thank you for your reply, we only eat fish, chicken and eggs and vegetables.We have been told so many different things about our diet, we are seeing a dietitian in June so hopefully find out more.

Let’s hope we can keep the CKD stable for quite a few years to come

I was on dialysis for 3 and a half years. I am a single mum of two boys. My life carried on as normal. I did the early shift which was 7am to 11am then went home and did everything I had to do ie. shopping, housework etc. There were days I was more tired but that’s to be expected. I never felt poorly or bad through all my treatment I was still passing urine which surprised everyone.

Luckily after that time I received the phone call that I was so blessed to get about a transplant and here I am still doing what I need to. Dialysis seems scary but it really is not. I made a lot of friends and the staff are still like family. Please don’t feel everything is over because it’s really not I promise you. Keep living and sharing memories your doing great 😉

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Hidden in reply to Cazzy41

Thanks for the reply, were you offered dialysis at home?

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Cazzy41 in reply to Hidden

Because i lived with just my sons there was nobody to help put me on the machine. So it would have been too risky. But if it comes to that you can request home dialysis and you and your husband will be trained in the dialysis unit to do everything that’s necessary. Just remember it’s not the end of your story or life x

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Hidden in reply to Cazzy41

Just feels like it.it’s like now, I’m with my family, it’s pouring down in London, and I just want to cry. how long was you diagnosed before you started dialysis?

Cazzy41 profile image
Cazzy41 in reply to Hidden

I had a kidney removed at 19 as I was born with a singular polycystic kidney. It was only when I was pregnant that they found the problem. So after the right nephrectomy I was monitored ever 6 months. It wasn’t till I turned 38 that my function or my GFR turned dangerously low. I dropped from 29 to 8 and it never recovered. So roughly about 4 years from seeing the reduction to starting dialysis but I was told my damage was a severe case and never been seen before by my nephrologist. So because everyone is different you cannot go off my time scale or anyone else’s coz no two of us are the same. There are many different factors like medication, health style to take into account. As long as you are being closely monitored that’s all that matters. Xxx

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Hidden in reply to Cazzy41

Yeah I know everyone is different but I just need a rough time for my insanity. Thank you so much for all your support, it means so much to me, thank you xx

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Cazzy41 in reply to Hidden

Unfortunately sweetheart it’s not something you can put a time on. You need to try get on with normality or you will become so fixated the rest of your life flies by and you haven’t made any memories or laughed and loved. That’s no life to lead. So please please try carry on living. How old are you if you don’t mind me asking? CKD can take years to decline to where you need dialysis and your doctors will be keeping you informed every step of the way trust me!! Maybe asking to see a counsellor or someone who understands exactly what you are going through may help putting your situation into perspective. Depression is common and there is so much help out there. Please don’t live like you are already dead. You have a life enjoy it 😊

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Hidden in reply to Cazzy41

I’m 55, husband is 54.I have spoken to a counsellor, I work in a GP Surgery, but didn’t find it useful cos no one can give me answers and I understand that.

All I want to do is to stop feeling so bad every day.

I know what you are saying, I do try but I guess today is a bad day xx

Cazzy41 profile image
Cazzy41 in reply to Hidden

Sweetheart we all have those days that I can promise you. When the weather is wet, miserable and your stuck inside we tend to dwell on everything that is not right in life. That’s absolutely fine and it is normal but like the weather your mood will lift and days will seem a lot better. We thrive in the sunshine and it tends to ease mental pain and stress. But I can assure you that better days are coming. If you like I could send you my email address and you can always keep in touch. You’re not alone through this I promise you 🙂

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Hidden in reply to Cazzy41

If you wouldn’t mind doing that, that would be great. I don’t want to be a burden to you. xx

Cazzy41 profile image
Cazzy41 in reply to Hidden

Sweetheart you are no burden whatsoever.

ice_roses_uk@hotmail.com. My name is Carol but please call me Caz x

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Hidden in reply to Cazzy41

Thank you Caz, I am Sue xx

Cazzy41 profile image
Cazzy41 in reply to Hidden

You’re so welcome Sue hunny xx

madonbrew profile image
madonbrew in reply to Cazzy41

Hi Caz...just be careful sharing your email on a public thread in case anyone dodgy gets hold of it! That’s a very kind thing to do though. Also you can PM people here. I’m just looking out for your safety! 😊

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Hidden in reply to madonbrew

I am not dodgy, I promise you, just would like some advice and information

madonbrew profile image
madonbrew in reply to Hidden

😉

Cazzy41 profile image
Cazzy41 in reply to madonbrew

I fully understand sweetheart and thank you so much. Sometimes it takes that personal touch unfortunately and I’m sure it won’t take me long to filter out the idiots. But again thank you so much for caring xx

madonbrew profile image
madonbrew in reply to Cazzy41

😉

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Hidden in reply to Cazzy41

And I really, really appreciate that personal touch Caz xxx

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Cazzy41 in reply to Hidden

Sweetheart like I said anything you want to talk about just send me an email and we can try work it out together 😉

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Hidden

I was diagnosed with Polycystic kidney disease at age 21 and went on to marriage, college, 5 children and started dialysis at age 44. Ive been on home dialysis for over 19 years now. Work, school, volunteering and 10 grandkids, traveling has continued my living. Blessings

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Hidden in reply to KidneyCoach

Thank you so much for your positive reply, please may I ask your CKD stage when you were diagnosed when you were 21?Thank you

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KidneyCoachNKF Ambassador in reply to Hidden

CKD stage 2A

Hi, my husband has had stage 3CKD for the last 12years and although it hasn't changed for the better more importantly it hasn't got any worse in all this time. Try and remain positive. There are things you can do to stop it getting worse. Life ain't over till the fat lady sings. Good luck to you both.

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Hidden in reply to JaneCorn

Hi Jane, Please could I just ask about your diet?

Thanks for your reply

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Sammi_n_Munk in reply to Hidden

Hello there Hammerblow! Welcome to the forum! I completely understand how scared and lost you both must feel right now. It’s always a little frightening and depressing to receive news like this. But everything you’ve read so far on here is true.

CKD is not curable, but also, it’s not the end of the world either. All that’s required now is a change in your husband’s diet and exercise regimen. Firstly though, if your husband takes any medications that are anti-inflammatories, either prescription, or over-the-counter types such as Advil, Motrin, Aleve, or even Aspirin, he really should stop that immediately and switch to Tylenol (unless he has liver issues or any allergies to acetaminophen).

The CKD diet is low in protein, sodium, potassium and phosphorus. It is said that your protein portions of chicken, eggs and fish, should be no bigger than a deck of cards per meal. Most of our meals should consist of low potassium veggies like cucumbers, lettuce, cabbage, cauliflower, and red bell peppers, and green beans. If you visit Davita.com, you will find CKD-friendly food lists and recipes that you may find helpful.

You will do good if you steer away from: chocolate, dark sodas, alcoholic beverages, any red meat, processed foods, dairy (high in potassium), whole grains (whole grain oats, wheat, barley, etc., as well as nuts, seeds and beans such as kidney beans, Romano beans, and chick peas), as all of these are higher in protein, plus these types of beans are high in potassium and phosphorus. Green beans are fine though.

Dehydration is one of our worst enemies. Drink plenty of water daily, unless your doctor has stated otherwise. Always consult with your medical team before making any drastic changes to your diet. Also, keep away from protein bars and powders, drinks etc. These are high in creatine which can raise creatinine levels in the blood.

Try to limit or omit completely, any heavy weight-lifting. Lifting weights is often said to be bad for those of us with CKD as it can raise creatinine levels also. About 30 - 40 minutes of walking, jogging, swimming daily is good for cardio. Always ask your doctor first about this as everyone is different.

I do hope you will find these tips helpful until you see your Renal Dietician. You should know that although there is no cure yet for CKD, we still have power over it by disallowing it to defeat us through the lifestyle changes we follow in order to slow down any progression. Before you know it, these changes will become the norm, it’ll be just a normal, healthy lifestyle.

I wish you both all my best! And always remember, you’ve reached an amazing site that is full of wise, kind, and very knowledgeable, helpful people who understand you and are always here for you when you need us! Once again, welcome to our community! Please do keep us posted as to how you and your husband are coming along. I look forward to hearing from you! God bless. 😊👍🙏

Hi there! I’m also in the U.K. Welcome to the forum. I found this great place six months ago when first diagnosed at stage 3 . No idea of the cause of mine as GP isn’t interested ! Told me to drink more water. Sometime on here recommended Lee Hull’s book “ Stopping Kidney Disease “ it’sa big book but ( as an ex nurse) fascinating. He’s lived with CKD for 20 + years and increased his eGFR and shares in huge detail how he’s improved his chances. Basically it comes down to a vegan diet, dairy and shell fish being especially bad. No added salt, no processed foods. If his potassium or phosphorous levels are high then actively reduce those in his diet ( not yours, you could do damage to your heart if your kidneys function properly) . No charred foods - bbq or pizza.

Like I say it’sa big book but contains MASSES of research which is totally up to date rather than advice from the 60’s!

Personally my eGFR went from 51 in Nov 2020 to 73 in April! I’m amazed.

Your lives are definitely NOT over.

Hope your meeting with the dietician goes well.

Hi - I am now reading the same book. I agree, so much info, almost too much! I have polycystic kidney disease and stage 3 CKD, my last GFR was 43. My nephrologist has told me to watch my sodium intake and keep my protein low. After reading this book, I was stunned as to how much protein is in a breast of chicken! All along I was avoiding beef and eating more chicken! I am now trying to eat mostly plant based foods. Now that I have eliminated chicken from my diet, my protein is under 30, is that okay?

Sounds better than ok - well done. It’s quite a transition isn’t it, but once you get the hang of it’s actually really tasty and I felt so much better ! Slipped up a bit last week as we went away for a few days and ate out. I stuck to vegan, but sure some was processed and not home made !

Hi there SkiingSailor! I hope all is well with you! I’m just curious, why not charred foods? I must admit, I ask because I love to eat my chicken done on the BBQ most of the time. I don’t use salt though, is that still bad? I didn’t know charred was bad for ya. Oops! Lol! 😊👍

That’s just what Mr Lee Hull advocates. I understood it at the time, but seem to have a goldfish brain these days lol !

Lol! Don’t feel bad! Me too! 👏🏻👏🏻👏🏻😂😂🙏👍

Hi, I am in UK too. South East Coast. I found out I was at stage 4 with 17% remaining kidney function when I was 48 years old in 2015. It was a big shock I can tell you! To be honest once you get below 30% for a long period of time then it is very difficult not to get worse. But certainly your husband can do a lot to slow the decline. At time of being diagnosed I was given 3 to 6 months before needing to start dialysis but with diet and lifestyle changes I kept going until November 2019 when I finally started dialysis.

I can honestly say that I am so much happier and healthier now that I am on dialysis. I do it at home and have even been away on holiday and done it in the hotel room. I actually see the doctor less than I did before I was on it!

It sounds like you are doing all you can to slow the progression in your husband. Eating more fruit and veg, reducing red meat and junk food as much as you can and avoiding salt is all reducing the load on his kidneys. Make sure he keeps well hydrated with water. Do your best to keep his blood pressure down.

I am not a doctor but I have read that steroids would have an adverse effect on kidneys.Are you working with a nephrologist? If you are maybe it’s a good idea to find a reccomendations for another doctor.

I know that a medicine that was prescribed to my son with the advice” it will protect his kidneys” is the sole factor that caused the damage.

Don’t mean to scare you but change the doctor, it’s worth getting a second opinion rather than regretting. I don’t mean to scare you sorry

Good luck , look up the side effects of those steroids . Do a lot of reading .

There are some great advices here! It’s not the end of the world. Your nephrologist will be your best resource. Disclose all your current medications, and dietary habits. Building a trend of your husband’s blood work will help your nephrologist better understand the health of your husband’s kidneys.

The kidneys won’t recover, unfortunately, so your goal is to reduce their stress. Your husband will have some dietary changes, at the end of the day, they will be healthy ones (ex for me: Eliminate as much salt/sodium/dairy as possible, eat TONS more veggies, drastically reduce red meat consumption, etc). monitor the animal protein intake. Note though, that dietary requirements/restrictions will vary based on the state of the kidneys.

I wish you and your husband the best of luck. Hang in there.

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Hidden in reply to tonyng42

Thank you so much for your advice, we only eat chicken, eggs and fish (as we were by our Nephrologist) speaking to a dietician in June.My husband doesn’t have dairy, only a small amount of skimmed milk per day for his cups of tea. We have also reduced potassium and salt. We occasionally have a treat if we have a family members birthday.

We have more blood tests next week and I am so scared of receiving the results, is this normal to feel like this?

One day, I’m ok with it all and the next I am so anxious. It’s just the not knowing

Kind regards

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