When my level was in the low 30s and high 20s my sweat smelled awful. Like ammonia or cat pee. I don’t know if it’s because my level has fallen below 20 or diet or meds but now it doesn’t have a smell. Now it’s just excessive like Ive been out in the rain, just soaks thru all my clothes. Have to change 3 to 4 times a day. And it’s gotten hard to catch my breath, feels like I’m 5 or 6 miles up on a mountain top. Plus if I sleep more than 6hrs it becomes too much to wake up so then I’ll sleep for 5 sometimes 10 days . So I take 5 or 6 two hour naps so my body doesn’t get a chance to go into a week long rest mode. My joints crack and pop constantly and hurt all the time. Getting up from a sitting position is painful and tiring. The tired feeling overwhelms me and breaks my spirits and takes away any desire to want to live Another day because it isn’t living when your to exhausted to too have joy in anything. I’m sure it’s getting toward the end. I’ve already turned down using dialysis when kidney failure starts because that to me isn’t the quality of life that I would enjoy. So unless a breakthrough happens to cure it I just have to prepare for the day when my body will finally have had to much to keep going. Some days that scares me other days it soothes me.
Ckd and ammonia smell : When my level was in... - Kidney Disease
Ckd and ammonia smell
I’m so sorry you are going through this!
Have you tried the natural kidney diet? Perhaps it will prolong your function and help you feel better. Praying for you.
Good thought The prescribed CKD diet has helped . Davita has many recipes also.
Yea the diet change helped for a year but there was just too much damage to my liver and heart from being over stressed by my kidneys declining. If your kidneys don’t completely shut down the strain on your heart is usually too much anyway once your GFR gets to around 16. But it’s no way to live before that because the oxygen loss to your brain causing hours of confusion, not knowing what your supposed to be doing or what day and time it is and wandering your house aimlessly just makes you sad and depressed because you miss who you used to be.
I am 79 years old and my Doctor put me on a CKD diet at age 75. . It has helped my quality of life. I am at CKD 3b. Please check with your Doctor for help and inquire about a diet and/or get a referral to a renal dietitian. A good source for recipes is Davita. Please keep us posted.
I certainly struggled in much the same way you describe before they began treating my severe anemia, a side effect of my chronic kidney disease. If you’ve got anemia effective treatment would likely have you feeling and functioning much better.
I’m glad I didn’t give up at that point. I talked with my PCP and my nephrologist. They devised a treatment plan to address my anemia. I’m still working today over 11 years later.
Jayhawker
Diets and medications can only work for so long. I tried them and they did help. The devil uses our love for life against us. Do not love this world or anything in the world. If anyone loves the world, you do not have love for thy father in you. John2:15 A believers eyes lift up and only see heaven and world is cast behind them. So I’ll enjoy what time I’ve been given but not going to fight for more of it with surgeries or meds that dull my mind and body. And I’ll pass on from this life like we must all do but I’ll do it willingly and not fight beg or pray for more of it But be thankful for what I was given because it was more than I deserved.
Keeping you in my thoughts and prayers. Keep on talking to your doctors asking for help. Talking to someone could also help. Wishing you all the best.
Hello there Mcsnacks. I am sincerely sorry that you are suffering through so much distress, and believe me, I do understand. It’s good that you seem to believe in a higher power, but perhaps you can go further with that belief and allow Him in to offer you strength to keep going forward with living.
I do realize that as CKD advances, living day-to-day becomes more difficult, but perhaps you could think about doing all you can through a change in diet (and possibly iron supplements to improve your energy levels), along with a suitable exercise regimen to hopefully, improve your blood levels. You must do all you can to not give up on the wonderful chance at life that our good Lord has given you.
The advice that you have received from the others here so far, is very wise and sound advice. Please speak to your PCP and ask for a referral to a renal dietician who will likely compose a more suitable diet plan for you using your most recent blood results. If you are currently taking any non-prescription or even prescription medications for any other health issues you’re currently dealing with, you may ask your doctor for a drug review. It may be that these meds are creating some issues that are causing you to feel so poorly. If you are taking any anti-inflammatory medications, even over-the-counter types such as Advil, Motrin, Aleve or Aspirin, you should know that any of these can cause further damage to the kidneys, and you should steer away from them.
Also, I too, often have the “ammonia smell” and with me, my doctor said it was the fact that my blood urea level was high. And high creatinine levels can cause pain in the joints and bones as well. You may want to check in with your doctor and / or nephrologist on that. This is something that may improve with the proper steps taken. You do deserve better than what you are going through right now. I say, try to lend your God some further faith and respect by also respecting yourself enough to give your life a fighting chance. Remember that there is nothing that would make your Father prouder than to see you honouring yourself by giving the precious life that he has given you another chance.
Also, always remember that you are never alone, especially here. We are always here for you. I wish you all of my best, and I will keep you in my thoughts and prayers, dear. Please keep us posted as to how you come along. I look forward to reading more of your posts. Do take good care of yourself Mcsnacks. Many blessings. 🙏🙏🙂✌️
Here are a couple of websites that may help you.
You seem to have already decided on a plan on moving forward to this end. I never had the fatigue and dragging along as you've described. Even when hemoglobin levels were below 6 I still has plenty of coherent moments. That being said after 18+ years on dialysis and all the surgeries, medications, treatments it has been an extraordinary journey for me. Tough, yes and also so enjoyable in many ways. I've traveled to MN, IA, IL, GA, NC, DC, FL, TX, AL. I've been involved in ambassadorships, on committees, advisory boards volunteering and advocating. Much is done via computer and phone, much in person. I adapt and change how and where possible. I won't kid you I've had some dark moments but I've also welcomed a daughter in law and 12 grandkids into our family. I've not felt the constant pain, suffering and damage to my liver, heart and brain as you feel you have. I've had plenty of bone loss and other issues that I've accepted, adapted to or adapted my mindset to the changes. I don't feel my journey is over here. It is different for everyone. I've contemplated stopping dialysis. I think most do. You are the only one who can choose for you.
Are you wanting someone to talk you out of this choice? I hope the end is smooth and simple and just how you envision. Blessings
Hi there KidneyCoach! Wow! I think that’s pretty awesome having travelled around to so many different states and working the ambassadorships! I admire that. And I’m with you on how difficult it can be, and the “dark moments” that arise, but then I suppose that we all go through those days from time to time. It’s hard sometimes, to try to find the strength to get over the humps especially when, at times, these humps can be seemingly insurmountable! Lol! But we go on, as they say. Just want to say that I appreciate your wisdom and I admire your strength! Your words are very comforting. Thank you so much! God bless. 😊👍✌️🙏
The last blood test I took came back saying my red blood cells had come out (crushed). I will be taking another and unless the blood was taken thru the syringe wrong then it means that I’m in stage 5 liver disease and that’s the cause of my ckd and heart disease. So they will want a bone marrow biopsy to make sure the diagnosis Is right. Then I’ll have to take a physical to see if my body is strong enough for surgery, which I severely doubt. The only thing getting me out of bed for the short time that I do is tripling down on my medication but that raises my blood pressure so much that I can’t get enough oxygen and I wear down in about an hours time and have to sleep for 4 or 5 hrs. So my goal is too just make it Christmas and enjoy one last birthday with my kids during the holidays. Tired of being tired now.
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