Hi, I am 50 years old, unmarried and living alone. I have no friends or relatives.
2 weeks ago I noticed swelling in both of my ankles. I thought it was due to wearing tight socks so ignored. I noticed then that it was like this even during weekends when I was not wearing socks.
I went to the GP and he ordered to take blood tests and ultrasound scan of the legs to check blockages. I did the blood and ultrasound yesterday. Ultrasound did not find any blocks.
So, now I scared like hell. Only thing I think that will happen next Friday when I meet my GP is he will give me CKD or even end-stage kidney failure diagnosis.
I don't know what to do. I have to wait for 5 more days and I am going crazy. I don't have anybody to talk to.
Will I get my death certificate on Friday???
What what I have read on the net is that swollen ankles definitely means kidney disease and ultimately failure in few months.
Do do I have only few months to live??? From what I know CKD is a death sentence.
Please help!!
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francis20520
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Hi and welcome to the community. If you die this week it will be because you are worrying too much.
There are so many things that can cause swollen ankles and most of the reasons aren't serious.
The two leading causes of CKD are diabetes and high blood pressure. I have both. I was diagnosed with T2D about twenty years ago. I've also had high blood pressure for a few years longer.
Just over three years ago I was diagnosed with CKD. My GFR was 32 and I was at Stage 3. There are five stages of CKD. Stage 5 is considered End-Stage Renal Failure (ESRD).
I calmly did my research and learned all I could. GUESS WHAT?
Over the last three years, I've had my GFR up as high as 65. My most recent labs, done last Monday showed my GFR at 58. Since my diagnosis, my GFR has averaged 53.
As we age our GFR does decline. I'm 69 and I have no intention of dying anytime soon. If I should get to Stage 5 I still plan to live a good life on my terms. I've done the research and know that with home- hemodialysis I can continue to live my life and enjoy myself. I can hike, ride my bike, travel, and do what I like to do so as I please.
Should you find out that you do have CKD you will have to make some lifestyle changes. I had to make those changes and I'm still happy and doing what I want.
As far as support goes, you found a great community to find support and help you deal with living well with a chronic illness.
Call your doctor's office on Monday and see if they can get you in sooner, maybe with a canceled appointment. If not, try to write down some questions about your ankles to ask your doctor.
Relax, watch a movie, read a book, go back and read all of my posts and replies here in the community. That should keep you busy through next month.
I had to laugh about the comment you made about possibly dying from worry. It so true. Anxiety can come on fast once CKD comes on board. We feel as if we've lost control. But, as you say, there are so many things we can and should do. We can maintain control. I really appreciate your comments.
That comment might give you some idea of what I was going through about 38 months ago when I found out I had CKD. It got worse a couple of weeks later when I collected hard copies of my previous lab results and discovered I had CKD for over a year before anyone told me. When I realized the shear number of doctors I had seen and all of them failed me, I went from worry to anger. That's when I set up my spreadsheet to record my lab results and begin to track any trends and be in control of my health. That was the end of my being reactive and the start of my being proactive. Never again will I go to a doctor's appointment without questions and never again will I leave their office without answers or a path to finding the answers.
One thing I'd like every doctor to do is provide every patient with a copy of the Patients Rights and Responsibilities. Anyway, thanks for the comments and kind words.
You know if one doesnt get on top of this, the worry can complicate the diagnosis. Im still struggling to get to the place where you are with your nedical team. I had been showing signs of of kidney problems for at least 4 years before my primary said: "you know, you have kidney problems." Like "duh." And, more recently i had to push both the primary and the specialist to find out why one lab item was getting increasingly higher and higher. It finally got attended to. It was serious Even though the bible says "the meek shall inherit the earth," that altitude just doesn't work when dealing with physicians. Keep up the good work.
What keeps me up at night is the realization that I may not always be able to advocate effectively for myself.
I live alone and have no family left. I do advocate for myself consistently now. However, there have been times when I’ve felt so poorly I wasn’t able to be totally on my game so to speak. When that happens I realize how quickly things can fall apart.
Yes, advanced directives and living wills help. I have my affairs in order. Nevertheless, the reality of all of this is suddenly front and center when I’m not feeling well. I’m certainly unable to be in charge then.
Meek does not mean not to assert yourself. Don't be afraid to start asserting yourself to your doctor. Start by setting down and writing a list of questions and ask your doctor for answers.
I guess you're right about asserting oneself with doctors. I went for so long with no new symptoms that it was a 10 minute visit of hello and goodbye. Now, with new symptoms i have lots of questions. Ive also faxed my kidney doctor my BP log with several concerns and i got answers within hours. Im not going to wait a month or more while I worry about side effects. I have an appt Monday and I alteady have a list of concerns and questions. Thanks for reminding me that its my health and i have to take care of myself.
Welcome to a great community of compassionate, knowledgeable people. You are never alone as friends are here.
Your feelings of fright are perfectly normal as you are dealing with the unknown.
Firstly, what is most important is that you have taken the initiative to see your GP so he/she can test get to the bottom of this; that took courage.
Sitting in the dark and worrying without having it looked into yields a huge degree of stress that you don't need.
You have one very positive note already that your ultra sound did not show any abnormalities or blood clots; that is a blessing.
My thoughts; until your doctor tells you that you have kidney issues, or anything else for that matter; don't go there.
The internet may have a vast amount of information; but it cannot replace testing, evaluation and diagnosis by qualified medical personnel.
Your swelling could be caused by any number of reasons and delt with expediently and efficiently.
As far as CKD, or any kidney issue is concerned, it is far from a death sentence. It will require a few lifestyle tweaks and monitoring. A low sodium, low protein diet where you monitor your potassium and phosphorous intakes, avoid red meats and processed foods, increase your intake of fresh fruits and vegetables, drink plenty of water and exercise -even just a walk. Kidney issue or not, it is a healthier lifestyle to adopt.
As far as kidney issues; they can't be cured but with diet, exercise, and medication it can be kept in line with the goal to prevent progression.
There are many folks in this community who have CKD, live and have lived normal lives for decades.
What you have read on the internet is the extreme case scenario; the exception not the rule. Every person is different.
My questions: Did you discuss with your doctor what his/ her suspicions were? What blood tests were ordered? How about a urine analysis?
Do you have diabetes? High blood pressure? Are you in menopause? Are you overweight? Do you smoke? These are all considerations.
A great suggestion to make your appointment go smoother would be to print out your labs results before the appointment and check off any areas which may flag high or low based on the ranges next to your results. Make a point of asking your doctor about them.
List questions and concerns and bring them with you. If you have someone to accompany you to the appointment and take notes in a small notebook for you, that would be wonderful. If not, call the office and ask for a chaperone to join you and take notes; this will allow you to more fully concentrate on the discussion. Your notes will serve as a baseline and something to review after leaving the office and prior to your next appointment.
In the meantime, breathe! Spend the days until your labs are available on your patient site relaxing and do things that you enjoy. It's not simple when fright is upon you, but you can do it!
I very much doubt that you will be given a death sentence next week. Again, until the doctor says that it is so, don't go there.
Please feel free to reach out to me or any of the members of our community at any time as we will always reach back.
As others have stated, your swelling can be caused by one of many different medical issue Your Doctors might run many tests to diagnose you. I am 79 years old and was diagnosed at age 75 with Chronic Kidney Disease. The progression has been slowed with diet and prescribed exercise (for me it is walking). Please keep us informed of your diagnosis. From my experiences, do not prejudge what it could be. Advice from a person who has experience on medical conditions.
There is not much more I can say that hasn't been said. It is a very common situation when you get older for swelling in the ankles and there can be many reasons including what you wear, as you mentioned, to too much salt in your food.
We are here for you and will help support you. You are not alone. So let us know what the doctor says. Do you know if you have done recent blood tests and do you understand what the values mean? This is a great step in understanding any health issues that might come up.
Hello francis20520! Welcome to the forum! You will do very well to heed the advice you’ve been given here so far. I’ve been a member of this community since later last year, and I am far better off now than I was before.
We don’t diagnose here, but I know you will find, as I have, that the members here are very kind, knowledgeable, and very supportive (as Bet has already mentioned). You should know that you are never truly alone, especially here. We all share a common bond in this forum; we all care about one another; and we always do our best to provide each other with sound suggestions based on our own experiences.
As Mr_Kidney has said, even if the diagnosis should be CKD, this is far from a death sentence. CKD is a chronic condition, much like diabetes, that requires lifestyle adjustments to our diet and exercise regimens. I too, get swollen feet, ankles, and sometimes going up my calves, so I completely understand your concerns. In fact, I’m suffering with that issue right now (my bad, I overdid my protein intake over the course of the past few months. It seems I’ve been celebrating Christmas since December of last year! Lol! 😃) But seriously, please don’t fret. As Mr_Kidney says, it’ll be the worrying that kills you, not CKD.
Remember that the information you get from the Internet is based on many different cases, not your own. Speak to your doctor about your situation and your concerns. Only she / he can steer you in the right direction. They can connect you with a renal dietician who will compose a suitable kidney-friendly diet plan (should you even need one), that will assist you in managing your levels better.
In the meantime, if you’re interested in knowing more about the kidneys and kidney-kind foods and habits, try searching sites such as kidneyschool.org or DaVita.com. There is helpful information there. And do always remember, we are here for you. You’ve found a great forum here, and once again, welcome! I look forward to reading more of your posts! Many blessings. Bye for now. 🙏😊👍✌️
I was diagnosed with CKD in 2015 I know that I have made it this far #1 my faith in Jesus Christ. #2 The support from others especially here at this website. As someone said you are definitely not alone. CKD is not a death sentence with all the educational resources and information available to you. There is light at the end of the tunnel.I believe that God will bring you through this tough time. You are not on this journey by yourself. Take care.
Thanks for your reply. I was a God fearing Catholic. Then I lost faith in God and became a Buddhist. After 15 years I lost faith in Buddhism also and so now I am irreligious. I kind of envy religious people. Faith in a religion gives you extra confidence to face problems. Unfortunately I don't have that since I am irreligious now.
Thank you all for your replies. Just reading them made my stress levels go down.
I lost my job due to COVID 3 months ago. So, I am jobless also. The only thing that was going for me was the hour I spend on the treadmill.
I was getting good at it. I was able to do 6km (in 90 minutes). But since last Thursday I stopped doing it.
Is it all right if I hop in to the treadmill for about an hour??? I normally average about 3.5 km/h. I thought that it will not be good to exercise due to swollen legs??
What is your opinion??? Should I exercise or not???
I would say to do what you can with exercise but perhaps not quite so strenuous as you did before.
I’m in Stage V but not yet on dialysis. I have been consistently encouraged to exercise daily. I’ve had to modify how I approach exercising as my CKD has progressed. For instance, I used to walk 2 miles straight, without stopping. Today I can and do still walk 2 miles but have to split it up into several separate walks throughout the day each 2/3 mile in length. I also walk a little slower today than I did 10 years ago when I was originally diagnosed.
I also do a low intensity workout on a recumbent elliptical machine 7 days a week. This workout is 12 minutes in length. I try to do three of these a day which adds up to 36 minutes daily.
My thinking has been to go for more time spent exercising daily but lower intensity. I definitely feel better when I exercise.
Hey Jayhawker! Yes, I agree 100%. I was actually advised to do it that way by both my physician and physiotherapist years ago. I just plain walk, for about an hour, once or twice a day. 😊👍✌️
Yes, walking is generally considered to be both safe and a good form of exercise. Of course we always want to stop exercising if we’re experiencing any discomfort. And it’s always best to check with our physicians first🐶
But my nephrologist’s have made it clear that exercise, moderate exercise, is good for my kidneys. They strongly encourage walking at a pace that is comfortable for me, etc. They also note that cycling, again moderate intensity, is another great form of exercise. They just advise against rigorous exercise...
Yes. Exactly. If I ever feel any discomfort at all, I just stop and rest. If exertion is causing any pain or difficulty of any kind, it is best just to rest. But truthfully, I don’t ever push myself that far anyway, because I know that it would really just defeat the purpose. I find that plain walking, is good enough to keep my heart rate just right. 🤗✌️
Yes. It is invigorating. I do admit though, there are days when I have to push myself to get walking, but once I do, I always feel so much more energized (especially after I’ve had my morning espresso fix! Lol!😃) But seriously, it really does help me to get things done better also. 😊👍
A workout on the treadmill is a great bit of exercise. However, I wouldn't do it until you meet with your doctor and get more information about the swollen ankles. Asking about a good exercise regimen is a sound idea whether or not you have CKD.
It should be said that never do anything too strenuous on the two days prior to your labs. Keep up your normal routine and after the labs take a longer walk or ride. Stay well hydrated every day.
Best to advise your Doctor on your exercise routine. Doctor should tell you if you need to cut back and give you pointers for exercise depending on diagnosis.
Thank you once again to everybody. I have learnt quite a lot. Earlier I thought CDK is like a heart attack. You get it and die. But now I know there are 5 stages. I am now better than I was yesterday. This forum and you guys are amazing!!!
Your question, "Will I get my death certificate on Friday???" gave me a flashback and made me smile. You remind me of myself. I thought the same thing...that my husband would be given his death certificate as his kidneys, in his case, did go on a downward spiral ending in dialysis. I couldn't eat, sleep, or drink for all the worrying. My body flared up. As others have said, don't go there. Even when kidneys are completely gone, I've discovered, it's pretty darn hard for a person to die with modern dialysis, drugs, surgeries, and transplants available today. I can truly report that my husband is doing well today, minus kidney function. While it's not perfect, he's truly living a meaningful life! So sleep well. Your time definitely isn't now. You have miles to go....and much to do!
Thank yo for your encouraging words. May I ask how long since 1st diagnosis of CKD?
Is CKD always discovered at Stage 1?? Or can somebody discover that he has CKD but in stage 3? Because stage 1 symptoms should lead you to see your doctor. That is why I am asking.
My husband (sitting next to me) says there was no mention of any of the stages until he hit Stage 3. So he doesn't know how long it took for him to move from Stage 1 to Stage 3. His diabetes doctor relied on his nurse for the exams who only said, "You should probably be evaluated by a nephrologist from time to time". So an appointment was set up to see a nephrologist. The nephrologist muttered about his numbers during appointments but he, too, said nothing until he hit Stage 3. Hubby says he felt perfectly fine and in good health at that point, perhaps only his urination changing a bit, and the news hit hard. In Stage 4, edging closer to Stage 5, he had more issues (fatigue, swelling, soaring blood pressure, etc). If my husband could have a rerun, he would have paid a lot more attention to eliminating his diabetes, as that's what crippled his kidneys. He's been treated for diabetes for a couple of decades, so to go from Stage 1 to Dialysis probably took 20 or so years. I'm glad you're proactive and asking questions here. Make sure you press your doctors for answers too. I suspect many health professionals assume you've read the tea leaves yourself or their nurse (or another specialist) filled you in. Information gets pushed off or falls between the cracks.
I got my test results yesterday. I have some good news and bad news.
Good news is that my kidneys are OK. GFR is over 90 and blood tests are OK. I don't have diabetes. But my cholesterol is high at 6.1.
However, here is the bad news.
Since my ankle swelling is still there GP order 2 more tests. One is scan of the abdomen to see blocks and it was this next one that made me really scared. He said that it could be due to heart issue and ordered an exercise ECG.
After some reading on the web what I read was ankle and feet swelling is a sign of alcoholic cardiomyopathy. And the prognosis for this is not good.
I am now convinced that I have this. Because I also suffer from OCPD, OCD and have suffered depression. Although I am not an alcoholic I do have abused alcohol for long time. I normally drink once a week but I have binged drunk on quite a number of occasions.
So, now I am scared again. I am more scared now. Alcoholic cardiomyopathy seems worse than CKD with life expectancy of just 4 years.
First, I’m truly glad to hear about your renal data; that is definitely good news.
Second, I say this all the time to my graduate students in my assessment class, “Wait to see where the data takes you. Don’t jump to conclusions—let the data show you what’s going on...”
Medicine is a complex field. There can be lots of factors at play here. Your physician is methodically running tests. These will rule out various potential issues, like chronic kidney disease, and ultimately identify the issue. Once identified, you and your doctors will discuss treatment options, etc.
Right now your job is to get in for testing. Do what your doctors tell you. Try not to worry (which is definitely hard). And hope for the best.
Hi All, I am writing this to help people like me. I.e people who suffer from severe anxiety disorder, OCD and OCPD.
I did my heart test and that came out OK. Then the GP ordered another abdominal ultrasound and that came out OK as well.
Finally the doctor ordered a CT of the abdomen and pelvis to check if there is anything pressing against the venous return to the heart and today the results came as negative.
So all my tests says OK and my swelling of the ankles also have almost disappeared.
My GP says it could be due to the way my veins are structured.
So I am OK now but it has been such an anxious month.
I suppose you are right when you say not to get anxious but for somebody like me who is on my own with nobody to talk to that is very difficult.
I’m 67, single, and live alone. I’m the last person living in my family. But I’ve “adopted” new people into my family. I’d encourage you to consider doing the same. And online support groups like this are also very helpful.
Hi I’m unsure if it has already been said but hot weather along with not enough fluids also contributes to swelling of the ankles & feet. If you use too much salt during cooking or on your food will add to this as well.
Francis: i hope i can help. Three days ago, i looked down and saw swollen feet and ankles and the areas were red. I never had this in my whole life and im in my 80's. I was very worried until I called my kidney doctor. He prescribed medication and the swelling is almost gone. Hes working with me to change my BP meds which he believes is contributing to my CKD.
Now, about your anxiety. You have to try to change your thinking. Somewhere you read swollen ankles means you are dying. Not sure where you read this, but its fake news. As others have said there are many causes for swollen ankles and almost all are not serious. It would be helpful to call your doctor, speak to his nurse, and get some reassurance that this situation can get resolved in time. Other actions you can take is to eat healthy, exercise a little, and drink lots of water. You may have to limit your salt, but thats up to your doctor to advise. You can also read proper things about kidney disease from the book that was suggested.
There is something about medical problems when they crop up suddenly that knock us out of our comfort zone. We feel as if we have no control. But, we do have control. There are things you can do. There are lots of us that want to hear from you and especially to hear what you are doing. Hopefully the more positive things you do, the more your fears can be reduced.
Today I discovered why my ankles were swollen. I discovered this on my own. It was because of excess salt intake. I was eating a lot of junk food and THAT is why it was swollen. Here is the article which said that:
Hello Francis welcome to healthunlock. First ckd or kidney failure is not a death sentence. Second you're not alone. I am a diabetic and was diagnosed with a kidney disease 2015. Check with the North West Kidney Foundation to find out if they are holding any classes on ckd also check with your doctor about ckd classes. It will take away a lot of fears. And continue to keep us informed on how your doing there is a lot of support here.
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