New stage three CKD for husband need support

Thank you Rhonda for your kind response. I know that I have to calm down take a deep breath which I am trying to do, this is also new and a big change for my husband and I

His nephrologist was not very warm we went for our first appointment, she is from India and typically Indian doctors don't have the best bedside manner's My husband had two episodes of dehydration this year because he was working outside in the heat and evidently didn't get enough hydration . The last labs that the doctor looked at her from the hospital when he went in for dehydration. I am hoping that the labs he took last week after being three weeks on Limited protein limited water and watching the carbs he will at least maintain his level and saw indicated that it was possible to elevate his GFR, not back to normal standards that higher than they are now .

Although my husband and 77 and I am 73 I have always been in good health however my husband's GFR has been watched by our GP for a while we believe when he got dehydrated at lowered his number .

We are extremely active and involved in many things and making sure that he gets the nutritional needs and water ihas become my new full Time job. We went to the kidney health class provided by DavIta and it was an amazing class but I have made a callfor a local hospital dietitian to help me. I also found a wonderful iPhone app called "nutrition "which allows me to input his meals and it gives me the breakdown of all the nutrients. The great thing about this app it has every food with every nutritional value including brand names, restaurants, and the ability to import nutrients from other foods not on the current list.

I know this is a progressive disease and with proper nutrients and following the plans we can hopefully keep him where he is now. To say that I am stressed would be an understatement, thank God in our 23 years together this is our first challenge. I believe in The power of prayer and it's what keeps me somewhat sane. I want you to know how much I appreciate your response, it means a lot. Please keep in touch, I need that support from someone who understands .

Another thing you probably already know is to watch his potassium, phosphorus,.and salt.  I'm not sure the nutrition app. has all the potassium and phosphorus listed.  Your husband is lucky he has a wonderful wife to help him through this disease.  I am also stage 3 CKD.  I am lucky so far that I don't really have many symptoms as of yet.  I am also trying to keep my numbers steady.  I will keep you in my prayers. 

Yes, The doctor looked at his labs and her instructions were 74 g of protein, 50 ounces of water a day and a lower sodium diet. She didn't say anything about phosphate and potassium, they say at the Lopey kidney class not everyone has elevated phosphate or potassium in the labs. Because I've been Reading so much and studying like a crazy woman I found out on my own about those two things and although the app doesn't have potassium phosphate it does cover calories, fat, saturated fat, carbs, fiber, protein, sodium and you can track your water .

I looked up the suggested level of both items for stage III and the foods that are high in those nutrients. I am not preparing him a lot of high potassium phosphate items howeverIt's important to have enough necessary for your body . It's amazing how much is out there if you want to just explore, before three weeks ago I never even knew any of this stuff and quite frankly I am amazed and angry at the pharmaceutical companies that don't tell people how dangerous ibuprofen and other items like this are for kidneys.

You didn't put very much in your profile but it appears that many of the people here are in the UK, is that where you are.

My husband hasn't been having any symptoms, the doctor did a complete questionnaire to see if there was any physical effect that he was experiencing. If it weren't for the blood test he wouldn't know anything was wrong, that's the good news .

I think I will feel better once I meet with the dietitian, I have only been able to get him up to 1800 cal a day and he really should be at 2000. He is happy with his weight loss because he isn't a big guy and now he's where he was when he was in his 20s.

I read that in these cases of diabetes and kidney disease together keeping a low weight is imperative, I just want to make sure that he doesn't lose anymore.

PJ I am in the United States.  I have CKD from what they think might have been aspirin products.  I had migraines all my life.  No high blood pressure or diabetes.  I hope you get a good dietician.  Mine was terrible.  I knew more from what I read then what she told me.  Unfortunately I live in the country where there is not many choices in dieticians and doctors for that matter.  I found out about my kidney disease in a random blood test. Had no reason to think I would have kidney disease.  I think you are doing great with your husband and he is fortunate to have you.  Just don't get overwhelmed.  Your own health is also important.   

Hi Rhonda,

Ibuprofen such as Advil we believe was the culprit, my husband has taken them for years, I was too. Have a pain take a few Advil. Didn't know they were so

Bad. After the dehydrations, they mentioned decrease in kidney function but didn't make it sound important. Family dr read report from hospital and referred to specialist. My husband doesn't like her, no compassion or warmth. I am so anxious taking Xanax once a day..Rhonda I am pretty strong but I am scared, I feel like so bad for my husband, he is starting to become angry and even depressed alittle. I hate to sound like a wush but in a flash our life changed, I am doing my best but I am dealing with his emotions and mine, guess I am not as strong as I thought

Finding this forum and you is a God send

Bless you and thank you. BTW which area do you live in❤️

I live in Virginia.  I also used Advil for every pain.  I always said I was an Advilaholic.   I am sure you are scared.  And your husband probably is worriying about all kinds of things.  Men don't like to be weak.  They like to be in control.  With this awful Kidney disease he is not in control.  Sometimes people with kidney disease need some anti-depressants also.  Although if he is like most men he wouldn't even think of taking any.  You are a strong woman.  It is just hard. THings will get better as you find a new normal.  Anytime you want to vent just send me a message.  I understand I really do.  Sending good thoughts your way.

We are having a better day❤️ You are a blessing in my life, thank you❤️He takes Xanax but he isn't really scared, he takes things medically in his stride

Thank God it's not Cancer or something like that

Diet getting easier, he is eating healthier then ever

Today he went to the casino and I packed s nice tuna Sammy for him and an apple

Thank you again

Hugs

Your right helen nobody should alter what they do unless nessasary.  But everyone is not always told by there nephrologist what to do.  My nephrologist didn't tell me anything.  THe only thing he did was throw a low sodium diet at me on the way out and now I only see his nurse.  I have learned everything by reading and talking to people who have gone through the same thing.  So it never hurts to know what all the blood/urine tests mean and how they effect your health.  I know more about my own health now than I ever did.  I have kept bloodwork steady by being informed.  So while I believe everyone should definately listen to their doctor they should always be their own advocate also.  Also knowing your numbers  makes you feel like you are in control.  I am stage 3 and hope I will be like one of those people you know that don't end up on dialysis.  Here's to hoping.  I am glad you are also doing well. 

Thank you Helen, I am not eliminating those items, just being aware but thanks for the heads up. Like you I figured if the Dr wanted him to watch that she would have said so.

She only said protein, sodium and water restriction. Your words comfort me, thank you, The past three weeks have been stressful more on me I think, but today my husband had been upset, angry and achy. The weather here is cold and damp and he is used to taking Advil, the root of the problem. He has been feeling good eating healthier up until today, he woke up at 5 but just laid down again. My husband has been so active even 77 he acts like 20 so it's hard to see him like this. Helen he was great before he knew about his GFR do you think he is having some emotional stress over this? Typically he is the kind that doesn't stress over medical issues, he just deals with it.. I am the one who goes into full panic mode

I need to focus one day at a time... Sometimes I look too far ahead. Praying for strength... You and RhondaS have been truly wonderful

Thank you for hearing my venting ❤️

RhondaS I agree, this Dr did the same thing

Handed me a list if protein values. Never referred me to dietician and when I called about the diet her nurse told me this Dr only deals with kidney nit diabetes. What happened to the "whole" patient???

We see her in the 5th and then our GP on the 9th.. Hopefully he can answer some questions.

Like you I am reading and finding out information.

Feeling so overwhelmed today, since this started I have lost my appetite completely, barely eating. I can afford to lose 10 lbs but this is not the way. I am praying hard for strength and trying to keep positive. I don't show my feelings to anyone that's why this forum, you and Helen help so much, thank you both 🙏

Hi,

He could be trying to come to terms with things, you dont tend to get symptoms at stage 3 everyone is differernt though I can't strees this enough.  If you get colds etc it does take longer to get rid of than for example you would.  Avoid any ibuprofen products the only really safe thing is paracetamol this will help the kidneys, things like lemsips etc are no go they all have ingredents in that can harm the kidneys, it doesn't help matters that he is diabetic both this and the kidney thing can make him tired.  Like I explained there are lots of mature people I know on dialysis so don't worry if it get thats far (and it may not) he will be fine.  Like you say take each day as it comes if this is easier for you.  Your husband may pick up an infection if he was unwell, mine was always a chest infection then you have antibiotics which are nasty to our bodies.  He may have also tired himself out worrying about things.  Its not so bad just keep talking even if you want to have a good old rant thats fine too x

Thank you so much Helen❤️

He doesn't seem to have major symptoms, no swelling, headaches, back pain, dark urine etc so that's good.

We spoke about his diagnosis today and his attitude as always is , it's what it is, we will deal with it.. He is like that the biggest thing is the water restriction. He is doing well but occasionally he will have a few ounces over the 50. I am getting good at planning his meals and I plan on putting the daily menus into a spread sheet so I can just prepare the entire day without having to check qty, protein etc

That will make it easier.

He typically doesn't get colds, we just get allergies... My Dr is not big on antibiotics, I try to use natural things

Dr said to use Tylenol and he has only taken 4 in three weeks. I will look one what Ned's you said, is that Rx or over the counter .

How long have you had CKD, sounds like you know a lot , thank tou so much.

My husband and I like to go to the casinos and play slots, keeps hm busy and calm.

Usually we eat there and he will have a turkey burger on rye with salad. They don't add salt

But today I packed his lunch. A beautiful Tina salad Sammy with onions, peppers and mayo and then later he had apple slices with cinnamon. Cheaper and he enjoyed it.

I went and had my eyebrows re-tattooed , they look great

Do you have an email so we can communicate that way also, would love to send you some photos

Are you on FB

Hugs my new friend

Appreciate you more then you know❤️

Hi,

I have had kidney problems all my life (38 years) so like your husband I say it is what it is.  Im on FB under Helen Madaboutdents Tyrer (we have a paintless dent removal company) I would very much like to see your photographs I love looking pics, my friend who I car share to work with is 20 years older than me and I love hearing her childhood stories, people are very interesting. Look forward to your stories x

Hi,

Thats terrible everyone should have the same care (I know it isn't like that)  did your neph tell you to avoid low salt thats even worse than normal salt.  Ask if you can see a dietician. Mine keeps an eye on my bloods and if need be she lurks in the corridoor until I come out of my appointment and then I have to go with her for a chat.  I hope you stay where you are on the stages keep an eye on your blood pressure too, kidneys don't like high BP  

My doctor never mentioned a dietician at all.  I ask to be refered to one.  I had to pay out of pocket because insurance didn't pay for it.  Then it was a waste of time because she really didn't tell me anything.  No sample diet or anything.  The only thing I did get out of it was how much potassium and phosphorus I should actually have a day.  But those have been perfect so far anyway.  But good to know.  I have never had high blood pressure but lately it fluctuates a little so if I notice it creeping up I take blood pressure medicine.  I don't usually need it though.  I don't use salt at all and now am getting even better at eating low sodim items.  I found organic broths at our local Kroger and they are very low sodium. And all natural.  So that helps for Thankgiving.  Now if I could find a turkey that was not full of brine/sodium I might have a nice Thankgiving. By the way you must have guts to get your eyebrows tatooed.  I am such a wuss.  The idea of pain freaks me out.  Literally.  That's what kept me from the doctor for so many years and finding out about my kidney disease.  I don't know what the name of the phobia for pain is but that is me

.  Now remember each day that you spend worrying is a day wasted.  This is my new mantra. It seems to work most of the time.  LOL  Have a good day.

Hi Rhonda

I actually spoke with the dietitian today from Carson hospital, she gave me so much time and was lovely. Medicare and AARP will pay for it so when I get back from Texas on the 29th I'm going to set up a one-on-one. In the meanwhile she took the time to go over my memories and talk about my own allowances for carbs and fats as that relates more to this diabetes. She also went over the protein in the sodium with me. I told her I have been studying nonstop for three weeks and everything I could get my hands I just want to confirmation that this food plan

Is good. But I have started printing out his journals which has all of the nutrients and calories so I can have kind of a meal planner that I can pick up each day and know if I follow those will items he will be in line with his allowances. Tomorrow we go back to Look at the most recent bloodwork, the last blood work was taken at the hospital when he went in for dehydration. They were able to hydrate him to look at the most recent bloodwork, the last blood work was taken at the hospital when he went in for dehydration. They were able to hydrate him with two bottles bottles and raises blood pressure back to normal. I would think that there would be a certain amount of trauma surrounding the dehydration would result in his numbers lower. I am anxious about the appointment tomorrow with thinking positive, for the past three weeks I have tracked everything he put in his mouth and he is right in line with his proteins, carbs, sodium and water. In fact I think he is eating better than he has in years so I am hopeful for at least the numbers to stay the same or a little improvement. He dislikes this doctor because she has a very cold abrupt a meter. As we left she handed us one piece of paper that said 74 g of protein, low sodium but no values, and 50 ounces of water a day. She gave us a free printed sheet of paper that had low medium protein foods but that was it . Call back a day later and asked if they would refer me to a dietitian which they never did . I found a class from my vit I found a class from my Davita and was able to set up a kidney class within two days. I was surprised to see they were at least 45 people in the class, most in stage III but some we were getting ready for dialysis . The saddest part was seeing a 15-year-old boy who has severe kidney disease and diabetes and is not eligible for a transplant. We will be going out to dialysis soon and they are on Medicaid. Well his mother told me that they get their food from food stamps and the food bank. She said it was impossible to get fresh vegetables and food as you know most food basket in the proces and the food bank. She said it was impossible to get fresh vegetables and food as you know most foods our process and contrary to the kidney diet. When I saw him it made me realize that my husband is according to the doctor not critical, thank God and the best thing to do is control the diet and water.

I am working on my stress and thinking positive, my husband has a great attitude and says it is what it is and all we can do is our best To try and control to try and control this. Please keep us in your thoughts and prayers so that tomorrow we could have a good result

And if my husband still uncomfortable there's a great It even has their in-house dietitian

Helen and I have started communicating on Facebook which seems to be a lot easier as this program sometimes freezes on my iPhone. Do you have an email address or a Facebook account. Have a wonderful eagle feel good and thanks for your support and cannot imagine how much it means to me. Big hugs my friend

I am glad you have found so much info and things are looking up.  The diet gets easier.  It took me a while but I have it down more now than at the beginning.  I will send my email in your messages.  i am suprised you do all that typing on your phone.  When I use my phone I usually use the microphone and speak what I want to say because I mess up typing on it because of the size. Big Hugs back to you!