Posted , 7 users are following.
I came across a couple of articles on the internet. they discussed that the leading cause of death for people with CKD and of those on dialysis is caused by Cardio problems, rather than actual total kidney failure. Perhaps this is well known to everyone but it was news to me. However neither article discussed why this was. Why CKD causes cardio problems and the majority of deaths because of it,
1 like, 60 replies
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fran32391 rick39522
Posted
My egfr is 22, high blood pressure, diabetes, Lupus, Abdominal Aortic Aneurysm and several other connective tissue diseases. Now dealing with bone disease, shortness of breath, swelling and anemia due to CKD. (Shortness of breath not due to my weight, I'm a size 8/10) Won't even go into the symptoms for everything. If it wasn't for my research and reading I would go nuts! People tell me they don't understand how I can be so calm about everthing, I think it's my acceptance of life. I enjoy what I can and deal with e rest. Have to be your own biggest advocate but you need to know what you're dealing with first.
A short story called : The Spoon Theory , might help many of you able to explain your silent illness to family and friends when you are told, "but you don't look sick". Until and if you use a cane like I do since I have started falling often.
Have a great Mother's Day!!!!!
marj01201 rick39522
Posted
Yes, Rick, most persons with CKD pass away from cardiac events. As others have said the potassium imbalances along with other electrolyte imbalances are hard on our cardiac systems. Those who are placed on dialysis experience higher strain on their cardiovascular system; dialysis strains our cardiovascular systems. And we are at higher risk for peripheral artery disease which further complicates our cardiovascular system.
BUT my father lived with CKD for over40 years. His was hypertension related. He had heart disease and severe hypertension. And yet he lived with all of this for over 40 years. So, rather than focusing on how and when I'm going to pass away, I've tried to plan appropriately for the inevitable while enjoying and appreciating what I can still do. I try to hope for the best while planning for the worst.
I really stressed out about all the concomitant medical complications that go with CKD over the first few years after I was diagnosed. I don't do that anymore. When it's time for dialysis I'll try PD dialysis and hope for the best. I long ago gave up thinking about how much this will likely shorten my life. Instead I find that I've become very thankful for the life I've had and am thrilled that my medical team has me feeling and functioning well enough that I can still do a job that I love.
My father's life was relatively short; he passed away at 62 years of age. However, his life was a good life; he really lived life. I've come to focus more on how well I'm living rather than obsessing about how short my life may be. It's taken me a few years to reach this point though🐶
Marj
rick39522 marj01201
Posted
Good words. I am trying also to have the same line of thinking as you do. I find myself mentally more accepting each day. A way to go, but as you said it too you years to reach the point. Sometimes I find myself having stupid thoughts that prevent my own happiness. Such as something simple as a larger than average purchase of something. While I can afford such things, I think what is the sense. I may not get my enjoyment out of the purchase as I may not live that long. Thoughts of this nature. But then my brain comes around and after a day or two says if I want it, buy it. Bring yourself happiness and make whatever time is left the best it can be for yourself. I'm getting there.
MrsO-UK_Surrey rick39522
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A very close friend died of a heart attack whilst undergoing dialysis some years ago so I always knew of the risk. I didn’t know that the risk was there with CKD though - did it mention a particular stage? If it’s high BP-related then I’m at major risk as my BP is frighteningly high and my body is so intolerant of medication. They’ve just added another pill but don’t think it’s doing much yet....apart from making me feel a bit nauseous. Ended up in A&E on a drip this week due to diarrhoea & vomiting, hopefully not due to the new meds! Doc on duty said that my BP freaked her. Did anyone read the article in today’s Daily Mail about the vast number of people dying from medication itself.
fran32391 MrsO-UK_Surrey
Posted
Mrs O, I've been on medications all of my adult life so very early I learned to check my medicines with a Nurses PDR. I think they are like $15 now, worth every cent. You can look up your meds and make sure they can be taken together. I would strongly suggest EVERY house has one. Yes, many seniors die every year due to their meds. I get a new one like every 5 years although I guess I should start getting one every year, update my pdr. Several years ago my sister gave me the stats, I don't remember what they were, didn't matter, I had been using a per for years at that time. I suggested she buy one and she did. TWICE I have saved myself, so yea, they come in handy. I have several specialist and keep an eye on all of them.
fran32391 MrsO-UK_Surrey
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MrsO-UK_Surrey fran32391
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marj01201 MrsO-UK_Surrey
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Absolutely!! I, too, rely on my pharmacist to help me stay on top of potential drug interactions and so forth. I actually consider my pharmacist as part of my medical team🐶
Marj
MrsO-UK_Surrey marj01201
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marj01201 MrsO-UK_Surrey
Posted
Marj
Megan3031 rick39522
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I guess i should not have read this post but i was reading it since it popped up in my email with the notification of this post. But now i am scared since i read this since you all are talking about death with chronic kidney disease. And if i do end up having kidney disease like I think then this post is going to make me even more worried because I don't want to die early. I am only 30 now. So if I do end up having it then I am going to be very depressed since I will probably end up dying an early death. I mean i can try my best to be healthy but I don't want to have heart problems though. Are there medicines to help peoples risk for heart problems to go down some?
marj01201 Megan3031
Posted
Megan, you are so much younger than many of us posting in this forum. There is different, and more promising data, for younger people with chronic kidney disease. In general they live much longer than older people. And, because they tend to be healthier in general, they don't have as many complications, again, in general. But your case, if you have CKD, will be unique to you. Do you'll want yo have candid conversations with your doctors.
I know I shared in earlier posts with you that my father lived with CKD for over 40 years. He did do exactly as his foctors told him to do though. So, even if you don't have CKD I have no doubt that your doctor will recommend lifestyle changes. The better job you do following your treatment plan, the better your body will function.
I've spent time making preparations to die--getting my affairs in order. BUT I really don't expect to pass away for another 10-15 years. However, I live alone and have no immediate family left alive. So it's critical that I take care of advanced planning before I become too sick. That's fairly normal. But again, I expect to live for another 10-15 years. I also expect I'll be put on dialysis in the not too distant future. I'm planning to try PD dialysis first. I'm expecting that will work well for me. But if not I'll try in-center hemodialysis. Again, I expect I'll adjust and feel and function fairly well while receiving dialysis.
But that's my story, not yours. At this point you just need to prepare for your doctor's appointment. Write down your questions so you can make good use of your appointment time. Consider taking a friend or family member with you to the appointment. That way you'll have another person's perspective on what you are told in the appointment. You're battling some pretty severe anxiety. That will distort your memory of what you're told in the appointment so it would be really good to take a friend or family member with you.
I would think you'd get most of the labs they are likely to run on you back in 2 business days. You can set up a portal with the group that runs your labs. You'll then be able to check your lab results as soon as they are available. I do that. I also have a patient portal with each of my doctors through their practice web site. My lab results and so forth are available for my review anytime through my patient portal. And, I can upload blood pressure tables in my patient portal. That helps my doctors and their staff monitor how well I'm doing. So when you check in at the doctors office you'll have to fill out some paperwork. But you might ask the receptionist or the nurse if your doctor has patient portals. If so, I'd strongly encourage you to set your portal up. You'd be able to access it on your phone as well as s computer. The bottom line is that you're going to have a lot to learn and you'll need to rely on your doctor and his or her staff to help educate you. There's a lot of inaccurate stuff on the internet. So it's best to get information specifically from your doctors office.
And then let us know how the appointment hoes.
Marj
Megan3031 marj01201
Posted
Oh yes that's true. But see my problem is that i'm overweight as well. So i may have a few different problems in addition to high blood pressure. I could have diabetes that I don't know about and maybe even heart problems already as well. I'm not sure exactly how much I weigh. but I would say that i need to lose about 300 pounds to be honest. And yes i know i can do that if i work hard enough. But it may take awhile to do if i need to lose that much. It could take 3 or 4 years unless I can get weight loss surgery. But if i have alot of health problems already they may just tell me that i need to try to lose the weight on my own which would take some time. I'm not sure if they do weight loss surgery for people who have kidney problems or heart problems. I guess i could ask after they tell me what type of problems that I have. But maybe I could live longer with kidney disease if I do lose the weight because then that would make me a lot healthier than I am now. Unless i have some sort of heart problems already as well. If i do have heart problems then that could shorten my life some depending on how bad the heart problems are. And i saw you all saying dialysis is hard on peoples hearts as well. So if i did have heart problems then dialysis could make my heart even worse. And i know if I did have heart problems i can see a cardiologist a few times a year so they can make sure that my heart isn't getting any worse or something. I know i worry a lot though about all the problems I might have. So i just should wait to see what the doctor says. And yes you are right i do have pretty bad anxiety. I should probably see about getting some medicine for anxiety or depression as well. And thank you for the advice about the patient portal. I will ask my doctor if they use that or not. If not then i will ask them if there is another way for me to view my lab results online or if I need to come back to see them and have them discuss the results with me. My fear is just that if i do have kidney disease it might be in stage 4 by now since i haven't been to the doctor in so long. if it is then I may have to start dialysis in one year or something. Unless i am able to remain stable with my kidney function for a few years. If i'm in stage 3 then i could probably do well and not need dialysis for along time. Thanks so much for all of the advice though and i will let you all know how it goes. I am guessing i will get the blood test results by the end of next week or maybe the week after. I will ask the doctor how long it takes to get the results though just to see what they say.
marj01201 Megan3031
Posted
A lab technician will draw your blood and take a urine sample (if your doctor orders the urine sample). You can ask the technician when your lab results will be available and also ask to have a copy of the results sent directly to you. The technician will be able to tell you when to expect your results. The techniyion will also tell you if there is a way you can access them via the computer or your phone. My lab has patient portals. I set mine up so I get an email and a text message when I have new lab results in my patient portal. So I have a patient portal with my doctor and another with the company that does my lab tests.
Your doctor will probably be able to help you develop s strategy for weight loss. And, the good news is that even losing 10% of your weight is extremely helpful. Do while it will take some time to reach the target weight that is set for you, every 1015 pounds lost will be very helpful; your body will work better. Just be ready to work with your doctor. And you may be referred to s nurse practitioner for ongoing help with various medical issues (e.g., weight loss).
Your job is to learn what your labs say, figure out what your lab results mean, be sure you understand your treatment plan, follow your treatment plan, and let your doctor know how your treatment plan is working (e.g., hoe are you feeling with any medications you're taking, how are you doing with an exercise program on a daily and weekly basis, and his are you doing following any dietary requirements that are a part of your treatment plan.
Let your medical team worry about your overall health for awhile. You'll likely have your hands full with the lifestyle changes you'll need to make.
Marj
Janinec87 Megan3031
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rick39522 Megan3031
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Megan, Megan, Megan, what are we going to do with you?
) Sure we talk of death. As has been said a lot of us are older and it is something you think about even if you are without CKD. And certainly some people will pass because of the effects of CKD (cardio, or renal failure, or whatever), but also some will live to a normal life expectancy or close to it. But you my friend really, seriously, need to talk to someone professional about your anxiety. I mean this seriously not as an insult. You again jump to the conclusion you have something serious as a late stage CKD, or some other serious condition (besides your weight) without even something as simple as a urine or blood test. Not to be insulting but you are really being ridiculous. Why are you not obsessing you may have cancer, or leukemia, or dementia, or liver failure, etc. You may have these, or CKD, or the more likely case may have absolutely nothing. Every healthy person on this earth is the same as you and has the possibility of having one of these diseases or others, but they do not spend useless time, energy, worrying what MIGHT be. They just live normally. If one of these diseases attacks them they will know it when it happens. If they have some anxiety that overwhelms them they get a simple test. My dear, you really do need assistance. Sure a primary care doctor for the blood work just for reassurance. But much more importantly a professional who can help you with your terrible anxiety condition. Get help. It's out there.
?Or even more important why are you not just considering there isn't a single thing wrong with you other than an anxiety disorder.
marj01201 rick39522
Posted
Rick,
I couldn't agree more with your advice for Megan. Severe anxiety can cause all sorts of physical symptoms. These can, over time, cause serious medical problems. So I, too, agree that it is critical for Megan to seek professional help for her anxiety. As you point out, what she's experiencing as far as anxiety goes is not typical.
My hope is that the primary care physician she is seeing within a week will refer her to a specialist who can help her with the anxiety while the primary care doctor runs various tests to see how she is doing physically.
The bottom line; there is help out there. Megan doesn't have to be so anxious. She just needs to seek out help and work with the correct professionals. She will be feeling better!
Marj
fran32391 Megan3031
Posted
I agree with Marj and rick, I suggest you speak to your Dr about getting some help with your anxiety. I am no Dr but I think that is the most serious issue you are dealing with at this time, it seems it's keeping you from moving forward in your life. I've never suffered from anxiety or depression myself but I have known some people who have, got treatment and it made a huge difference in their lives. It comes down to you. We can talk till we are blue in the face but you are the only one that can help yourself by seeking help from professionals.
Megan3031 fran32391
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Megan3031 marj01201
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Yes i do go to a psychiatrist already and i have medicine for anxiety. But maybe it's just not helping anymore. I will talk to my psychiatrist though and tell her that I am feeling anxious about my health. Maybe she just needs to give me a different kind of anxiety medicine. or medicine for depression. I want to see what the doctor says first though. Because if i do end up getting bad news from the doctor then I will be very depressed. if I do get any bad news I will talk to my psychiatrist about it though and ask her to prescribe me medicine for depression.
Megan3031 rick39522
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I just think I do have chronic kidney disease because like i said in a few other posts i am very over weight. And I know that not everyone who is overweight gets chronic kidney disease. But I read that people who are over weight have a much higher risk of getting it. I did think about the fact that I could have something else instead of chronic kidney disease. I have considered that i could have some type of cancer like leukemia or liver failure too. Because i did notice that a few of my symptoms also occur in people with liver failure. And i know overweight people can get fatty liver disease. i think is what it's called. So yes i have considered the fact that it may be some other sort of disease. And i considered that it could be diabetes too since I am over weight. And i know i do feel fine like i don't feel sick or tired or anything. But that doesn't mean anything either. I have read a few posts on this forum where people said that they didn't start feeling sick or tired until they got to stage 5 of chronic kidney disease. So i guess its possible that I could be in either stage 3 or stage 4. But yes you are right. It's possible that it could be something else or nothing at all. yes maybe it could just be my anxiety. Maybe i just started panicking after my dentist told me that my blood pressure is really high. I will get a blood test and urine test though just to see if there is anything wrong. And I do have medicine for my anxiety already. It did used to help. But it has just started not to help me any longer because of me being worried about my health. I know i should probably talk to my psychiatrist that i go to and ask her to switch me to some different type of anxiety medicine or maybe medicine for depression. I try my best not to worry until I hear what the doctor says though. It's just hard to stop worrying.
Megan3031 Janinec87
Posted
I don't know why i can't post here just because I didn't get diagnosed with anything yet. I stopped commenting on my post already anyways so that other people can make sure to get their posts seen. I don't know why i can't comment on other peoples posts as long as I don't comment on my post anymore. And i haven't even been commenting on every single post on here either. I only commented on my post, this post, and one other post that someone made here and that's it. I mean i am going to the doctor soon anyways. And yes I know that most people probably wait until they get diagnosed to comment here. But i have seen a few other people comment on this forum and saying that they are worried about having chronic kidney disease too. I saw someone post something like that the other day. And they don't get attacked for it. Only i do.
Megan3031 marj01201
Posted
Yes i am going to this doctor that specializes in internal medicine. So i am sure they have a lab technician there who will draw blood. And yes that's a good idea. I will ask them to send me the copy of the lab results in the mail too even if they are able to upload it online for me to see. And I am sure that if I can even lose 50 pounds this year then that will help me out a lot. Also hopefully they will refer me to someone who could help me with the weight loss. That could be helpful too. If i do end up having kidney disease I guess they would refer me to a kidney doctor then? Maybe I also need to get a dietitian even if I don't have kidney disease. Because i'm sure the dietitian can help me to come up with a diet plan. I know i need to start going on a diet even if I don't end up having kidney disease. Hopefully the doctor will be able to refer me to a dietitian though if they feel like I need one. And if I do have kidney disease then hopefully losing weight could help my kidneys to remain stable for awhile. I will just wait and see what the doctor says though. And i'm sure the doctor can probably tell me what kind of exercises are alright for me to do and stuff like that. I am sure i will get some sort of treatment plan from the doctor even if I don't end up having kidney disease. Like they will say i need to lose weight and exercise and stuff like that. So i will do my best to follow their treatment plan.
Janinec87 Megan3031
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BECAUSE U HAVENT BEEN DIAGNOOOOOOSED .... FFS
My kidneys at at 9% i have one kidney that is completely dead and the other on its own 9% and my week isnt dark.... i shouldn't have to explain that to you because u havent been diagnosed with ckd........
maybe its your diet that your wee is dark it doesnt mean u have ckd...... its so frustrating talking to u!!! If i had anxiety like u id be ringing drs everyday for a cancellation
Janinec87 Megan3031
Posted
lol I think i have ckd... could be liver or diabetes...
dont assume u know whats wrong... it could be just a urine infection, it could be liver problems but YOU are adamant u have ckd... and are saying "maybe stage 3 or 4" MY WEE WAS TEA COLOURED AND I HAVE BEEN DIAGNOSED 8 YEARS AGO
Do u work?? do you not keep yourself busy to help your anxiety?
Runedog Janinec87
Posted
Good for you Janine 👍 My eGFR is now at 4 but still enjoy every day and don't moan. I have even started playing the drums again and I'm 70 but have a young head 😜😜
Some folk enjoy being ill and create their own drama so I salute you for telling it like it is
Janinec87 Runedog
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rick39522 Janinec87
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Runedog Janinec87
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Megan3031 Janinec87
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Yes that's true I know i could have liver disease or diabetes instead since I am overweight. I know being over weight can cause many different types of illnesses. But i am having these muscle twitches that won't go away. I read online that people with chronic kidney disease can get muscle twitches because of low calcium levels in the blood. And it said online that sometimes people can get muscle twitches because of the low calcium levels in the blood as well. And plus my tooth broke last month which can also happen with low calcium levels. I read the low calcium levels can effect peoples bones and teeth. Another thing I noticed was that I started getting a few grey hairs on my head a few months ago. I didn't think anything of it then. But after i started reading about chronic kidney disease recently i found out that people can get grey hairs from vitamin b 12 deficiency. And chronic kidney disease can cause someone to have a vitamin b 12 deficiency too. So i just am putting two and two together based on what i was reading online. So i do think that i most likely have low blood calcium levels as well and vitamin b 12 deficiency. If i do have those things then i'm sure that will probably show up on my blood tests. I don't know if diabetes can cause vitamin b 12 deficiency or low blood calcium levels. Probably not. But maybe liver disease could cause those problems too. So i could have either liver disease or kidney disease. I would bet it's one or the other. And you had tea colored urine too? that's what i get sometimes in the morning. And by the way yes i do work 5 days a week.
Megan3031 Janinec87
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I know i didn't get diagnosed yet. But still i saw a few other people posting on here who didn't get diagnosed. I read a few posts where they said they were worried about having chronic kidney disease because their urine was foamy or had bubbles in it. I know i read something like that here the other day. and they to were not diagnosed yet. I know those people didn't post as much as me. but they still posted here. And i'm sorry about your kidney being at 9 percent. I know that i don't understand how you feel now. But if i do end up having chronic kidney disease then I eventually will understand. And i guess you meant to say that your urine isn't dark? Well everyone has different symptoms though according to what I read online. And alot of websites do say that people with chronic kidney disease can have tea colored urine because it means that there is blood in their urine. According to alot of those websites the blood can't always be seen in the urine but it can make the urine tea colored. I'm not sure if my diet would be the reason why i have the tea colored urine either. because i have never really eaten healthy at all for my whole life and i never had the tea colored urine at all in the past. But yes i know its possible that i could only have a urinary tract infection.