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,
Hello Rick,
This is often caused through the potassium getting too high and it can cause a heart attack.
Mine has gone too high before (6,8) and I had to spend a night in hospital.
Hope that helps somewhat
Regards
Thanks Runedog. I just found this "interesting". And to read that not just SOME deaths of CKD patients occur due to cardio, but that the MAJORITY do.
Due to high blood pressure. Google heart failure and CKD. My dad had SEVERAL during stage 4 and stage 5 CKD, the last one took him. That is why I already have made arrangements for my 13 year old should I depart without notice. I've made funeral arrangements as well as other loose ends I needed to tie up and deal with, no sense in leaving so much to deal with for my sons. Yes, heart failure with or without dialysis. I have spoken with my kids, they know I could exit ANY day. We know it and enjoy any time we have together and when we say our good byes or good nights, we know that could be the last time. Knowledge about our diseases is very important, not only how to best deal with them but how to prepare for what is inevitable. Every one will die someday, my mom, siblings, husband, and kids. How we LIVE is what matters, making awesome memories for those we leave behind and our quality of life while we are here. Ever wonder how dialysis center chairs get empty and available for a new patient? There is a lot to CKD.
For anyone interested:
Hundreds of Interlaced Fingers by Vanessa Grubbs, MD. A Kidney doctors search for a perfect match. Author is aNephrologist who donated a kidney to her now husband and then went from being a Dr to a Nephrologists.
Being Mortal by Atul Gawande. Medicine and what matters in the end. Author is a surgeon and professor at Harvard medical school, etc., etc., etc. Just don't have the time to give list all his awards, etc. (All of this typing is killing my hands as it is)
AWESOME books!! I would also suggest medical papers as opposed to "articles". And medical "studies".
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!!!!!
Fran,
Thanks for making this post! I, too, have been very focused on "preparing for death" while trying to enjoy the things I can still do. Most of my friends are unable to understand why I'm so driven to do this. But it's exactly as you say; I could pass away at any moment in time OR I could experience a debilitating, but not fatal, cardiac event. The later would likely force me to stop working. I need to be as prepared as possible for either situation while doing my best to enjoy what I can still do right now.
My father had chronic kidney disease for over 40 years. His was hypertension related. He was ultimately placed on in-home hemodialysis. But he didn't pass away from CKD. And although he had three relatively minor heart attacks, he didn't pass away from a major cardiac event. Instead, his heart just stopped beating one day. His nephrologist said that that is fairly common for persons receiving dialysis because dialysis is such a strain on the heart.
Anyway, from attending most of my dad's nephrologist appointments, I have known that most people with CKD do not die from CKD. Most die from cardiac problems. And some die from serious illnesses like pneumonia.
Growing up with a father with CKD, I was always aware of the fact that he could pass away suddenly. We, as a family, really enjoyed the time we had--lots of good memories. And what a precious gift; my father taught me how to live well with serious chronic conditions. It would be impossible for me to overstate how much I think about him and the way he lived his life. I'm sure your children will have similar wonderful memories from their childhood with you.
Marj
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
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.
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.
How high does the potassium
Sorry, my finger slipped! I wanted to ask if you know how high the potassium can go before you are at risk?
MrsO, I struggle with elevated potassium. My nephrologist doesn't get too alarmed until it elevates to 6.0 or higher.
Fortunately, my treatment plan has been keeping it well in check for me. I eat a low potassium diet (2000 mg potassium daily) and I take a potassium binder daily. Now my potassium typically comes in at 4.1-4.2, well within the normal range.
Marj
Morning,
Marg is correct, potassium that reaches over 6 is considered dangerous ; mine has reached 6.8 and I was rushed into hospital and placed on a drip but I felt fine. Stupid thing was, when I came out of hospital I was ill for several days due to the patients I shared the ward with who were constantly coughing and sputtering. What a life aye 😜😜😜
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.
Stage 4 and stage 5.
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?
Thank you, Fran. I’m in the UK and always check any medication out with a good pharmacist / they know more about drugs than most GPs.
Thank you, Runedog. My potassium has recently been slightly raised but a renal consultant told me last week that he isn’t worried about it. I take Losartan Potassium,as ARB and this clsss of drugs is said to possibly raise potassium levels. It has also increased my creatinine levels but, again, Dr is’t concerned although does monitor it. I’m due to have another blood test in the next day or two to check my kidney function following 10 days on Hydralazine so will ask what the present potassium level is.
Thank you, marj - please see my reply to Runedog.
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