I've been diagnosed with CKD stage 3A and 3B, it goes back and fourth, now for 35 years. My question is I've really started to feel the effects of the disease lately. I've not seen my nephorologist in five years, but I have been seeing my PCP who knows I have CKD. I just became too much of an expense to continue seeing both doctors.
I've noticed lately that I'm tired more than usual, always short of breath, and have severe swelling in the mornings in my face around my eyes and swelling in my feet and hands that hurts. I'm thinking it may be time to start seeing my nephorologist again. Any opinions? I work full-time and find it hard to get from the parking lot to the office without being winded. I'm also exhausted at the end of the day.
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Lucylou2020
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I would contact the nephrologist and set up an appointment soon. It may be something simple like needing a diuretic if you are retaining water but it's wise to see a specialist. Best of luck.
Lucy, have you had investigations other than with nephrology? This could be something unrelated to your CKD, especially as you are in the range of 3a/3b which seldom throws up too many problems. The swelling and breathlessness you are experiencing could perhaps point to fluid retention, perhaps via a heart/lung problem? Do get yourself checked out and good luck.
Thank you all for getting back so fast! I'm sorry I should have told you I am currently on blood pressure medicine and diuretic. I also take medicine for high cholesterol. I've had checks done on my heart before. Below I've copied part of my records for you to look over and let me know what they mean. The doctors here don't act like it's that big of a problem.
Kidneys and ureters: Areas of cortical thinning in the right kidney are fairly prominent the right kidney has a very lobulated contour. The overall cortical volume is significantly diminished. No hydronephrosis. The left hip kidney displays marked cortical thinning very little renal tissue.
Cardiac notes: The cardiac silhouette is at the upper limits of normal in size. Minimal streaky opacities are noted in the left lung base. There is minimal multilevel thoracic spine degenerative endplate spurring.
Minimal steaky left basilar opacities suggest atelectasis.
These were done last year in 2019. I'm worried things may have gotten worse since I'm noticing more symptoms. I see my PCP next week and i'm going to ask to be referred back to a nephrologist. The one I had never really talked to me about anything. He just came in and looked over my blood work and wrote out rx's.
Lucy, I’m sorry, as I’m not a Dr, I’m unable to comment on your records. What I would say is ask to see a different nephrologist if you weren’t happy with the previous one.
That's what I plan on doing on the 27th of this month. Thank you all again. Now I don't feel as alone as I did. Finding this site has truly helped me. I see that I'm not crazy and there are a lot of others just like me.
I'm currently 54 years old. I'll be 55 in July. I was put in the hospital right after I got married at 18 years old. We had been married for four months and I came down with a terrible kidney infection. I was put in the hospital then, and again the next year I was put back in the hospital for the same thing. The doctors started looking at my kidneys then and discovered the infections had scarred my kidneys. Apparently i had had high blood pressure for a long time too and didn't know it. My medical records show my left kidney doesn't function and the right is severely scarred and works, but not real good.
I am 79 and have been diagnosed 4 years ago at sage 3b CKD. I too have experienced fatigue and lack of energy. It may be best you see your PCP and get blood work. I have read that the kidneys do provide many body functions. So much is interconnected.
Hi Lucylou2020! It is sad to hear that u are not feeling good. But I think it's an achievement that u managed CKD 3 for almost 3 decades. My husband diagnosed CKD two years back and he turned 40. I really want to know that what u did to stop the progression.
Any diet and exercise routine u follow in these 35 years?
Hopefully u will get the answers from ur doctor. Best wishes
I think it's just that they caught it when i was so young. I have never really eat a lot of salt or meat. I love vegetables. They also started me on blood pressure medicine at 19 years of age.
Make the appointment. I was 3 b for a long time. I was tired, but then... it was really obvious that something else had happened because I was crazy tired. And short of breath. I think the shortness of breath was the scariest thing. And my GFR had slipped down but more important, I was anemic..... very anemic. It was an easy fix for me to take OTC iron and about four months later, my blood levels were back to normal and I was not short of breath anymore. I also changed up my diet, just back on the protein and went much more with plant based foods. Things improved. Wish I had done it sooner. Get checked by the nephrologist. If they are like most, it will take time to get into see them. Meanwhile, get some labs done.
Oh I am so jealous. I had hounds for over 30 years. Started with a beagle who lived until she was 16. Then I got my first basset. Toots was a 5yo rescue who was placed with me because she had seizures and needed special needs. Her seizures were brought on from a TBI from being kicked in the head repeatedly. Can you imagine? She lived with me for 6 more years and the seizures actually stopped for a while. Because of her, I got involved with our local Basset rescue group. We did things like Waddles and Basset Blasts. While at a festival for our local humane society, I found Bishop. He was a Bassador ( basset-lab). He was so sad looking and only 40 pounds. He ended up around 115 pounds at his most healthy. He was a big smooch and he is my heart dog. When he collapsed when he was so sick, it was so awful trying to get him down the stairs to the car to the vet. I said I would never do that again. So now, we have two little mixes that were also abused. The kids are now around11 or so. Their history is very sketchy. I love them completely. But truth to be told, I will have another basset after they go to the bridge. Good luck with Lucy and you can pm me if you have questions or just want to chat Basset. They are the best....
Thank you. Lucy has a story too. My dad was outside mowing the lawn and looked up and seen her in the middle of the street. She was so tiny and starving. She wouldn't come to him till he turned off the lawn mower. When he did she came running. Mom and dad are in their 70's so they called me to come and get her. I took her to the vet and she was not chipped. I put out posts on facebook to see if anyone had lost a basset hound, and mom and dad went house to house in their neighborhood. No one claimed her. The vet said she was probably dumped because they couldn't pay for the shots. All I know is she was starving and had tummy bugs real bad. We're just so glad to have her. She is a hoot! She loves our other two rescues too. I have a maltis toy poodle who is 6 yrs old, and a cocker spainel beagle mix who is 17yrs old. All of them are girls. I just lost a carrian terrier who was 16yrs. He was a rescue too. My husband and I couldn't have children so these are our babies.
hope you will be better after seeing your nephrolohist, it might be thing like Vit deficiency, are you on water consumption restriction if not your neph might put you on, and BTW your story with CKD is inspiration for maintaining the same stage for 3 decades, hope you all the best.
Thank you. God has truly always blessed me. He knows my limits. That and I believe I've just always had to worry about other people and let my own health go by the wayside.
You said that you had not seen your nephrologist for five years, and that your PCP knows that you have CKD. Have you been having regular blood draws to check the progress of the kidney disease? Five years is a long time.
No I haven't and that's what is bothering me too. I'm worried my luck has run out. I dread every morning having to get out of bed with my feet swollen and my body aching all over. It's hard but I know after I get up and move around it will be better, not 100% but better.
I was diagnosed in Nov. of 2017. I started working on improving my egfr and the results were: Nov. 17, 2017--34.3 Feb. 26, 2018 --54.0 July 9, 2018-- 54.7
Dec. 5, 2018--54.7 Apr. 2, 2019-- 48.4 May 6, 2019--54.3
Aug. 12, 2019--61.2
Because of the improvement, my appointments went from every three to every four months, then every six months and finally to every twelve months. Because I was not happy with having my blood work done so infrequently, I have asked my Primary to schedule blood work every three months, which she has been happy to do. This way I can keep better track what is happening and make changes as needed.
That's good advice. I'll have to see if my PCP will do that till I can hopefully get back in with a different nephrologist. My last one didn't really take time to talk to me about what my body was going through.
You're a true inspiration to others. Keep up the good work.
My first nephrologist did not either, so I changed nephrologists. The second one does not either, so I see her as scheduled and follow groups like this and have done much research on what I need to do. In the long run, we know ourselves best and with the right information and support, we can make great improvements, in spite of doctors who say we can eat whatever, as mine did.
First of all, no question is a stupid question. We all have things we do not know and want to find answers to:
No, I do not believe that my kidney is healthy again, just that I am doing what I can to help make it function better.
It is, in my opinion, like having a "bad" back. I have spinal stenosis and often have back pain. In light of the pandemic, I am doing all that I can to avoid having to have another spine block. I use pain patches, take tramadol, avoid doing things that might make my back feel worse. My back is not cured, I am just doing what I can to help make it feel better.
The same with ckd. I am avoiding things that prevent my kidney from not functioning better.
Second, it is not so much eating certain food that has helped, but not eating certain food. I avoid sodium, and limit potassium, phosphorous and protein. The following sites have been most helpful:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
Your PCP can do labs for you - either in their office or through a local lab. He/she can then let you know within a few days if they see anything out of the norm and help guide you.
Without labs it would all be guesswork, and your Nephrologist will also require labs before he/she can determine anything (and it usually takes longer to see a Nephrologist than your family doctor).
Once you have your labs you can then set a path forward. In the meantime, how has your diet been? Based on the symptoms you described, you may be feeling the affects of anemia (your blood test will show if this is the case). Most people can treat and manage anemia through diet by ensuring they are getting enough Iron, the B vitamins and C. I have found my dietitians (I have several of them on my health care team due to my high level of being proactive in my treatment) have been the key to me going from Stage 5 kidney failure (and told I had "Zero chance" of improving) to the high energy, healthly, stage 3 person I am today with no symptoms.
Wow!! That is amazing! Looking more and more like I'm going to have to stop spreading myself so thin and start taking better care of me so I can continue to take care of my loved ones.
Hello there, Lucylou2020! I’m sorry that you’re feeling so poorly. I can certainly relate to all of the things you’ve described, as I’m sure everybody in this forum can also.
My advice to you would be, yes, definitely try to get in to see a nephrologist. But also, ask your PCP to refer you to a renal dietician. I’m not sure what your diet and exercise regimen is but, if you haven’t already made changes such as eating foods that are low in sodium, potassium and phosphorus, then definitely try to. Go to DaVita.com, they offer tips, recipes and lists of kidney-friendly foods for people in all stages of CKD. Lowering your protein intake might also help, if you’ve been on a high protein diet.
If you are taking any medications either by prescription or over-the-counter pain relievers, try to steer clear of anti-inflammatory varieties such as Advil, Motrin, Aleve and such. Ask your doctor to conduct a review of any prescription meds you may be taking, (anything containing steroids, certainly, as they tend to accelerate the deterioration of chronic illnesses), because, often times, what was good for us at one time, is no longer the case as CKD progresses.
Exercise whenever you have a chance to. Try to get in at least 30 minutes or so, of activity in a day. This can be helpful as well. Plus, it may also help with the breathing problems you’re experiencing. Try to remain hydrated, even though the swelling you’re experiencing seems to go against that logic. Keeping yourself hydrated properly is very important as it continues to flush out toxins.
And once again, I can’t emphasize this enough, get in to see your doctor. This point is the most important one. You need to know where you stand with your levels.
I’ll keep you in my thoughts and prayers. Please do keep us posted on your progress. We’re always here for you, dear. God bless. 😊👍
Thank you Sammi_n_Munk. I can't wait till I see my PCP next week. It is truly a blessing to have found this site. I had no idea the symptoms I'm having are common to those with CKD. It may sound funny, but it does help to know you are not alone in your suffering.
Do you have a Health Fair or Clinic that can draw your blood without Doctor Order where you live...We do in our Town ..$35.00...includes a Kidney Function Panel...that may help you decide which type of Doctor you need in order to get started...
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