Hi guys. I just got my blood results.😣 Since January my gfr has gone from 53 to 47. My husband doesn't seem to care. My son's don't seem to care. My husband says he won't give up salt or fat. I am all alone with this and I just want to cry. I asked him if he looked at my blood results and only said yeah. No support. Nothing. No one in my family wants to hear about it. I don't understand what I'm doing wrong. I cut out salt and most beef and processed foods. I talked to my other docs about my other meds. I may have to get off a couple and that's scary. My future feels so bleak. This burden feels so heavy.
I'm sorry for going on so long, but here is the only place I can share my fears and feelings of failure. You are all so great.
Hugatree737
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Hugatree737
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It's easy to get down but let me offer several points that may help you get through this time.
I'm going to have to make some assumptions, so if I make one that is incorrect, let me apologize in advance.
I assume you do the food prep and cooking in your family. It that's the case cook what you need to in order to stay healthy. Leave out the salt and don't cook anything with excessive fats, especially trans fats. Your husband and kids can always pick up the salt shaker and add what they want. If they complain, let them do the meal prep and cook what they want. You can then prepare your own meals and be happier and healthier. If you choose to make a special meal for them for a special occasion, fine. But don't allow them to expect it or for you to eat it when it goes against your meal plan choices.
Unless told otherwise by a renal dietitian, cut out all beef and all processed food. If your husband and kids want anything like that, you can buy it but fixing it for them is up to you. They'll continue to take advantage of you for as long as you let them. Remember, your actions will teach them how to treat you.
The reason you don't understand what you are doing wrong is simple. You aren't doing anything wrong. You are doing what you have to do in order to be healthy for as long as possible.
With some medications, you will have to withdraw slowly from them as opposed to stopping cold. Ask each prescribing physician what the replacement med is and check out the new med on drugs.com before you fill it. To save some time and trouble, remind each physician you see that you have CKD and ask about interactions with your kidneys and other meds before they pick up their script pad. Always bring a complete list of all medications, including over the counter meds and any supplements to every appointment. If you do begin a new script, and after a week or two you aren't seeing any appreciable difference, contact the prescribing physician and check on an increased/decreased dosage or a switch to something else. You are in charge of your health, so be as proactive as you can be and eventually the doctors will know you well enough to speak to you about each new medication before they write out the script.
You've only mentioned the immediate family. Do you have extended family nearby or close friends that you can share this with? In a perfect world, your family would be jumping through hoops to support you. Since your family isn't, find other family members or close friends and get the support you need there. Remember, you can always come here and there is always someone here who will lend an ear and share some thoughts and ideas. Hang in there. You can and will get through this.
As far as your family being insensitive to your needs, remember that you can't control the actions and feelings of other people only your own and how you respond to them.
Give it time and let them settle into the shock of your diagnosis.
In the meantime, see if there is a friend who will be willing to be your local support system.
If your husband doesn't want to give up salt, let him eat it; it's his choice, that doesn't mean that you have use salt or eat foods that are not kidney friendly.
Ask your doctor to refer you to renal dietician who will help you design a meal plan and make food suggestions based on your labs.
Also, see if there is a Davita in your area. They offer a great Smart Class with books and suggestions at no charge. They also have an on line component with a food tracker.
Most importantly, put yourself first; avoid the processed foods such as cold cuts, bacon, etc. and add in more fresh or fresh frozen vegetables and fresh fruits.
Cream of Wheat is not only kidney friendly, it is high in iron. Egg whites and hummus can serve as great sources of protein.
Below are two links; one on foods and the other is on dining out.
I highly recommend that you sign up for a peer mentor. It is easy to do. A person who has similar situation with CKD will be assigned to you. You can set up times to talk as often as you need. They will listen and may provide insight from their own journey to help you in yours.
We do not replace your medical team, but are patients who are trained to listen and be supportive....because we walk the walk.
It is free. It is really a nice thing to do and know someone is in your corner. Everyone has a hard time from now and then. Don't beat yourself up because you have a lot going on.
Hi Hugatree don't give up now that is not the end of your life. Please join Natural Kidney Journey group in Facebook, it guide, support, help, teaches etc, everything abt CKD. Focus on your health...
of people just like you here.. it can be hard for people without the condition to understand .. on the outside.. people look at me and don’t see much visible symptoms but my blood work is lighting up like a Xmas tree... this community is very supportive .. learn more about your condition and we are here for you..
Come on stop crying and watch your sodium, potassium, and protein. You have to worry about yourself- My Gfr ids down to 5 and my kidney doctor says I should have gone on dialysis at 8. But I'm not down ,I am fighting just as if I had cancer. So come on feeling sorry for yourself is giving up . Charge forward- don't worry about what others say, it's your life ,make the most of it.
My path is not the same as your path so I will not be presumptuous or judgemental or critical. Please don't do that to me. Support, information and understanding are what most need. Comments like yours are not helpful when, at times, one needs somewhere to go when there is no one and nowhere else to go. I hope you can begin to understand that concept a little bit.
raybacci….are you now on dialysis? I'm asking because my husband's GFR was 10 a year ago and 6 months later it was 8. He just had blood work again and he's still at 8 after another 6 months. He told the doctor he doesn't want dialysis until he can't go any more. He's doing pretty good considering his kidney numbers. He went to the beach this morning to spend the week with his friends. I'm just wondering how long a person can go without treatment.
I am new to CKD ,still learning so I have no advice.about diet etc. I am so sorry you feel all alone in this. I will be praying for you , that you find support and can stop the progression!❤️
So sorry that your family has not given you the support you need. A good way to cook for everyone is to cook veggies for you and serve with the meat for them. (NO meat for you) A plant based diet is good for you. Also you didnt mention water make sure you drink plenty especially for blood work. The numbers will fluctuate. Hang in there and keep getting support here. Most of us would be happy with a 47. So keep doing the best you can.
Hi Hugatree737, I am new here and my husband doesn't even REMEMBER that I have CKD that's how interested in my well being HE is. Your post made me feel very sad for you - I have no 2 legged kids just dogs, which are everything to me, no family or friends so I feel your loneliness but certainly you aren't a failure. Good for you for changing up your diet and all of the good things you do - have your doctors given you more tools to use, ideas on what to do next? All I will ever have is my ability to change for myself (which I haven't done yet and I only have 1 kidney to start with) so I wish you the very best. I'm not educated enough from being new to make suggestions but you can change the way you feel about the neglect from your husband/family and just focus on you - that's the only thing you can do and it's scary to feel lonely, lost and totally powerless. Take care of yourself - you sound just like me!
Hi Hugatree, i am new to this forum and joined because i have a genetic kidney disease that is progressing. My GFR dipped below 50 about five years ago and has stayed in the 40s but is down to 41. I have noticed, and it sounds like you too are noticing, that because outwardly we dont look any different than before, that people dont think ckd is serious and they dont want to hear about it. Some spouses feel a bit freaked out to learn that their spouse could have a serious health issue so they block it out to minimize it not because they dont care but because they cant handle the sadness and stress of it. Try your best to be proactive for your own health. I am not a doctor but you might want to talk to yours about taking an ACE inhibitor. I am taking it to lower the stress on my kidneys to try to make them last longer. Plus low protein diet. I am glad to learn there are support forums and peer groups. One thing that helped me was to show family members the chart of the five stages of kidney disease and show them where i am on the chart and explain the goal of postponing or avoiding stages 4 and 5 with dialysis, etc. sometimes people understand it more when they can see you possibly needing dialysis in the future because that can impact the family’s lifestyle, schedule etc. so they might be more supportive of helping you to stay healthy. Best of luck and hang in there.
Hi Hugatree. I am not a doctor and dont want to say anything that could be wrong. But my understanding is that ACE inhibitor is used to lower blood pressure but it also has the “ side effect” of lowering stress on kidneys, which many other kinds of blood pressure meds don’t do. I take Ramipril. If you Google Ramipril and kidneys you will probably find info that explains it better than i can. It is a pretty common prescription for people with ckd so after you Google it you could ask your doctor about it at your next appointment. Both my PCP and my nephrologist prescribed it for me. Everyone is different but its worth asking about!
I'm sorry to hear that you're not getting any support from home. I can't blame you for feeling alone and down. Please reach out to your doctor's office for advice. I also would suggest the NKF at kidney.org. They may be able to offer information on support groups in your area. I do understand about the fears and feelings of abandonment. When my husband was on dialysis for three years and I was able to give him a kidney my sister refused to return my calls the entire time and actually had the audacity to accuse me of making up the entire story. I don't know why some people will choose to react the way they do, but I am glad you reached out to this community because you will find support. I wish you the best in getting what you need to feel your best.
You know there is no reason or excuse for ignorance and insensitivity; those behaviors are a reflection on the folks generating them.
Unfortunately, not everyone has compassion for others and the skills to display it.
I too feel badly when a family is unable or chooses not to support a member with a specific illness.
As stated prior, putting yourself first and cooking healthy meals without salt and having others add or eat what they choose is key. Kidney friendly diets are making lifestyle changes.
Finding a friend who is willing to support you by listening when needed and even accompanying you to medical appointments is more valuable than a lot of gold. It is not the blood that makes you famiky, it is the love and support.
A Peer Mentor may be helpful if you choose or support groups in your area.
The most important thing is to take care of yourself and pride yourself in not allowing your CKD to progress..
Please know that we are all here for you at any time- reach out and someone will always be there to reach back.
I get it. It's tough when numbers fluctuate and you feel all alone. No one can understand your disease as well as a patient who has walked the path before you. And, no one will care more about your health than you, yourself and you! Often times numbers decline because we are dehydrated. So, for starters, make that a priority every day. I used to line up bottles of water and number them to ensure I was drinking enough. I also didn't eat canned or prepared foods and when going out, I asked the server to ask the chef to prepare without salt. I also became a vegetarian, pretty much, with the exception of fish and some chicken. It's time to become your own best advocate. Your family will eventually learn to admire your brave new disciplined self. Make three parts of each day all about pampering you and being more loving and supportive. By doing so, you'll be able to be the best version of yourself with others. Look into NKF's mentoring program. Talking on the phone to other patients who have experienced what you are experienced can give you tremendous peace-of-mind. I thought my world was coming to an end until I spoke to other, more experience and wiser patients. I blessed to say I'm living my best life ever, as a motivational speaker and author who owes the world to mentoring. Find a mentor here: kidney.org/patients/peers
How wonderful to hear those words. Thank you so much. I will be doing the things you mentioned. One person here told me to quit crying and get it together, but everyone else has been so supportive. Bless you.
Hugatree737: Saddened by learning your family’s indifference to you. But, this’s how I think. At present your just don’t look sick, you consider that a positive for yourself. In due course they will realize the seriousness and come around. I am sure. Jerem
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While what you say is true, we shouldn't have to do that with our own family. If I remember correctly families are the unconditional love and support backbone for us when we have issues, especially health issues. What you suggest, to my understanding, is that we have to wait until we look sick, to receive that support.
Having a chronic illness and finding out early enough to make the changes necessary to avoid the later stages and looking and feeling sick(er).
But, that's just my opinion.
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Mr_Kidney: You are so right, I agree with you. Hugatree737 states "Since January my gfr(sic) has gone from 53 to 47" in a span of about 5 months. That's why I made the assumption and reminded her her current status, and as you know from her, she is taking steps to treat the situation, she can do a lot and has some time to do it. In addition, we don't know her family, except that it is wanting as "support backbone". I know there are 2 kinds of diseases in this respect( ie. socially). A high BP and a heart attack is a category I call an individual disease, and diabetes and CKD are a family disease. The latter requires all members of the immediate family and others who live under the same roof to work out diet regimen which may be radically different from before. This may includes family member(s) to be (a) buddy or buddies in daily physical exercise too. I took such measures from the get-go with my spouse a few decades ago. I just wonder if we can expect all family to do so willingly and when. Thank you for "right stuff" view of what a family should be. Jerem
I'm so sorry that your immediate family isn't much help. It can be challenging to keep yourself healthy when others in your life aren't on board. I'm just curious, but have you called a family meeting about this issue? I only ask, because I've personally have had to call family meetings to explain the situation and my feelings regarding the changes in my health while battling CKD. Unfortunately, some people cope by ignoring the issue in hopes that you'll magically get better and everything is hunky dory- when we all know as patients that this isn't so. I'd hope that your husband would come around after talking to him and maybe also bringing him to an appointment or two. I've had to do this with my boyfriend in order for him to truly understand what the condition was and what needed to be done. My nephrologist was very frank that this was lifelong and that my lifestyle was not an option for my health.
Please don't feel that you are doing anything wrong, because you are doing what you have to. Also, don't be afraid to be frank and refuse to appease your loved ones if it means compromisintg yourself. If it means that you do all of the food prep and let them figure out something else if they want something different, then they are more than able to do so. Personally, everyone knows in advance that I don't salt my food and use whole foods, so I just put the salt and pepper shaker on the table and let everyone season accordingly. I sincerely hope that you can find support elsewhere in your life through friends and other family members in the mean time. It's a tough road to walk on, but you are doing a wonderful job. Good luck!
Thank you for your help. I've talked to my husband over and over but he just doesn't get it. Last night he suggested we have bacon sandwiches for dinner or hamburgers. I need to learn to make the meals because he refuses to change and says he won't eat the things I have to eat. I'm trying to learn. It seems like there is so much to figure out, but I am learning and beginning to sense a change in new healthy ways to eat. The support here is vital to me and I am so grateful for you all.💞
What a wonderful outpouring from most of community. I want you to understand that what you are going through is a form of grief. Not everyone experiences grief the same way. You are grieving the loss of what your life was. You have a new "normal", and it is different than what it was before. Only you know how that feels and so your family may not be at to understand what you are feeling. I bet they do not know all that you are feeling because words are hard to describe the sensation of receiving a Chronic illness diagnosis. It is also frightening to know that there MAY be some pretty scary things to face in your future. Its absolutely ok to fall apart and feel the way you do. I have a feeling though that you will soldier on soon and take charge. We are here for you when ever you need.
That's a great perspective, Thank-you. This site is a rock for me. Sorry to take so long getting back. I started on Atorvastatin and I'm in a lot of pain and sleepy all the time.
You sound just like my husband. He is a young 74, but the kidney thing is dragging him down. He tires easily but he does keep the grass mowed and he drives somewhere at least every other day I think just to get out of the house...and to get a cheeseburger or fried chicken. I wish he would listen to me about changing his diet but he doesn't.
Surprisingly, he did go to one class after the kidney doctor told him his options last year. I have begged him to go ahead and get the fistula so that he will be prepared for dialysis when the time comes, but he doesn't want to go through "all that". They told him the same week last year that he has carotid artery stenosis and needed an angiogram to find the blockage to fix it, but that the contrast dye would cause him to immediately go on dialysis. He is choosing to drift along. After listening to him on the phone with his friends the past year I sort of just chuckle the way he does. When they call to check on him he tells them he's just sitting around waiting for something to happen. His attitude in general is good...I just don't want him to end up an invalid.
You have put your health first. Salt is a big factor and if you can reduce it that's great. I have recently joined this group as I felt I was alone, my friends and family are supportive but I found myself still feeling alone and crying alot (mainly due to the tiredness I feel) that is why I joined this group it helps to talk about it with people going through the same thing. Everyone on here are very supportive and have helpful information and tips. We're are always to listen .
He will show you the way. When you speak to God , he listens and hears all of our prayers. He knows how you are feeling right now.
The "pity party" remark is extreme, the discussion is not about you; leave it. Replying to each post is not required here.
Concentrate on your needs and what you want to talk about when you post or respond.
You are a good man; I can tell , and a man who made differences and still can and does here.
I hear what you are saying and can understand the feeling of wanting to feel alive, be fulfilled beyond your family at this time as well as be
productive and have a purpose each day.
Every person finds their own " nitch" or plan after retiring from their main career as life does change. Change is not easy or immediate to accept when health issues arise.
Bingo and bunco are not for everyone. There are many things that you can do to make each day purposeful. Mentoring is one of them. A younger person in your former field or even a young person. Doing something at your church and helping there is another thought.
Absolutely speak to your nephrologist about working part-time; Wal-Mart or another place. See what is the overall best activity level for you is.
Let the decision be discussed and decided between you, your nephrologist and your PCP as to what is feasible, safe and dooable with your health conditions and yet challenging your mind.
I have faith that it will all work out the way it is intended to. I promise.
I'll do my best! Usually I'm too tired to cook, but I'm doing a lot of research so that I don't have to think so hard when it comes time to figure out that icky question, "What's for dinner?"!!
raybacci...Thank you so much for your encouraging words. You are a wise man to know what the real problem is. I am going to print our conversation and show it to my husband since he doesn't like to talk to me about it. Maybe it will make him think.
I will keep in touch. Thanks again for being so open and honest.
Trust me, I am not an exotic cook. I do a lot of cooking and freezing.
My favorites, steam veggies in the microwave and store them in the fridge. I do this all of the time and warm them up as needed.
You can add flavorings etc. Crushed red pepper beats salt any day of the week.
My husband loves my vegetarian pasta. I boil a box of wheat ziti.
I microwave fresh onions, peppers and sometimes zucchini then drain the water. I then brown them in a pan with olive oil PAM addding garlic and onion powder, black pepper.
I drain the pasta and add the veggies to it.
I eat it as is..heated.
I add Prego low sodium spaghetti sauce to it for my husband.
It keeps well in a Tupperware in the fridge and re - heats well.
That's just one example. Of fast and good.
If you are broiling chicken, leave the salt off yours and put it on the others.
David's.com has great recipes. Check it out!
I find cooking and freezing on one or two days works well as you have choices to go with and don't have to stand for hours at night.
I will think of more ideas and let you know..
Lots of good cooks on the site, sure this will motivate ideas.
These ideas sound great and yummy. I had a long crying session last night and then found your message and am inspired. Thank you. It's beginning to sink in that this isn't going to go away and I'm not sure how to deal with that, but finding your note helps so much. I will screenshot and print and start a new recipe file!
Hi hugatree....Im new here...but you sound like I feel too....just wanted to say Hello and introduce myself....Im gardengirl1004...Im 49...in a month Ill be 50....I fell pretty alone too...youll see if you read my post titled "Are you my people?" my GFR is somewhere between 12 and 15....Im at that tipping point and its all to real....so you are NOT alone...please feel free to write to me...Keep your chin up ;}
Hi there and welcome. This is an a-m -z-I-n-g place full of caring people with answers, suggestions and ideas. I take a lot of screenshots and put them in an album so I can read and reread them. I'll go read your other post now. I don't have the knowledge most here have, but I'm here if you ever need to talk.
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So confused...
New Here, Stage 3b Kidney Disease with T1D, feeling down
GFR dropping 
Please help me!
