Is kidney disease becoming an epidemic

Posted by codered032 @codered032, Jan 24 6:07pm

It appears that lately I have met quite a few people recently diagnosed with kidney disease. Many at stage 3a and above when diagnosed. Many people like myself are surprised by the diagnosis. Is CKD becoming an epidemic?

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@codered032 Excellent question posed. The operative word, perhaps, is not that it will be becoming, but that it already is an epidemic. The turnover in nephrologists and their PAs and NPs, from my experience only, is tremendously high. They are under a lot of pressure during the day treating those in Stage 4 to dialysis, and commonly work at night as well. If you are lucky, you may see a practioner every six months or so if you are stage 3 or earlier. Last year, I had a great nephrologist quit, and he was in his early 40s. Two years prior, another left to go into senior management at a local hospital. Stages 3 and earlier are vulnerable because frequently they are forced to make 6 month or longer appointments as there are so many in dialysis and Stage 4. The key to all of this is to have a team of docs to help support these kidney docs by having a dietitian. a PCP, and others to make sure blood work is done frequently to establish your eGFR trend. The Kidney patient today, in my opinion, must be proactive and become knowledgeable quickly.

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Proactive and knowledgeable quickly… I totally agree, and the older generation of which I am a member, are not always as skilled at obtaining information or standing up for their rights.

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@codered032 Sitting with this question overnight, I pondered what to say. I would like to think that members of the medical community are finally seeing how important it is to keep track of kidney issues. How much our kidneys do, and how our general health can be affected when they misbehave. How so many other conditions can have a trickle down effect on the kidney function, and the connection of co-morbidities. It is my opinion only, that nephrology is not stressed enough in the general medical education years.

We are developing a new type of patient, well-informed and self-advocating, willing to push for complete care. Willing to look at trends, and education in our kidney disease. And willing to share the solid information we discover, with others. It is a win-win for us patients, but may be a thorn in the side of medical practitioners who would rather focus on something else. We owe it to ourselves to be the best we can.
Ginger

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I am new to this forum but I have Bile Duct cancer and Liver cancer. My doctor is keeping me on a 2 quarts of water a day schedule to maintain good kidney function. My chemotherapy treatments had included Cisplatin but he took me off of it because it was "too hard" on my kidneys. I'm receiving the immunotherapy drug Imfinzi. My liver functions are good. When I look at my blood work report what biomarkers do I need look at? What about this eGFR "trend"? I will be watching this forum. Thanks for the posts and suggestions. John in Houston.

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If doctors would tell patients, probably yes!

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@gingerw

@codered032 Sitting with this question overnight, I pondered what to say. I would like to think that members of the medical community are finally seeing how important it is to keep track of kidney issues. How much our kidneys do, and how our general health can be affected when they misbehave. How so many other conditions can have a trickle down effect on the kidney function, and the connection of co-morbidities. It is my opinion only, that nephrology is not stressed enough in the general medical education years.

We are developing a new type of patient, well-informed and self-advocating, willing to push for complete care. Willing to look at trends, and education in our kidney disease. And willing to share the solid information we discover, with others. It is a win-win for us patients, but may be a thorn in the side of medical practitioners who would rather focus on something else. We owe it to ourselves to be the best we can.
Ginger

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Ginger I agree with your encouragement. I was on vacation and happen to over hear a frantic woman in tears because she was newly diagnosed and couldn’t get a follow up appointment with her nephrologist for six months. She was told that she was 3b and had no idea what that ment. She reminded me of myself when I was first diagnosed. I shared the Mayo Clinic peer website and what little information I knew. I encouraged her to educate herself and become her best advocate. I stumbled upon this site and I have learned so much from all who shared information. I literally have to request frequent lab work form my nephrologist and ask questions when necessary. Thankfully the doctors are now getting paid for telemedicine visits, which has helped me keep in contact with my doctor. Unfortunately I don’t have a medical team working together so I have to be my own advocate between all of my Dr. Including my pharmacist and my dentist. I am so thankful that I found this group.

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@collegeprof

@codered032 Excellent question posed. The operative word, perhaps, is not that it will be becoming, but that it already is an epidemic. The turnover in nephrologists and their PAs and NPs, from my experience only, is tremendously high. They are under a lot of pressure during the day treating those in Stage 4 to dialysis, and commonly work at night as well. If you are lucky, you may see a practioner every six months or so if you are stage 3 or earlier. Last year, I had a great nephrologist quit, and he was in his early 40s. Two years prior, another left to go into senior management at a local hospital. Stages 3 and earlier are vulnerable because frequently they are forced to make 6 month or longer appointments as there are so many in dialysis and Stage 4. The key to all of this is to have a team of docs to help support these kidney docs by having a dietitian. a PCP, and others to make sure blood work is done frequently to establish your eGFR trend. The Kidney patient today, in my opinion, must be proactive and become knowledgeable quickly.

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I strongly agree with your assessment of the medical team. They are under a lot of pressure to keep up with medical trends. I don’t have a treatment team so I am my own advocate between my doctors, dentist and pharmacist. My nephrologist never discuss diet changes with me and my one visit with a dietitian admitted that she knew very little about CKD. Thankful my insurance now pay for telemedicine visits so I can request more frequent lab work. Thankful that diet and other health issues specific for CKD are shared with this group. I have learned that self education is the key to my best medical outcome. Thank you for your support.

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@codered032

Ginger I agree with your encouragement. I was on vacation and happen to over hear a frantic woman in tears because she was newly diagnosed and couldn’t get a follow up appointment with her nephrologist for six months. She was told that she was 3b and had no idea what that ment. She reminded me of myself when I was first diagnosed. I shared the Mayo Clinic peer website and what little information I knew. I encouraged her to educate herself and become her best advocate. I stumbled upon this site and I have learned so much from all who shared information. I literally have to request frequent lab work form my nephrologist and ask questions when necessary. Thankfully the doctors are now getting paid for telemedicine visits, which has helped me keep in contact with my doctor. Unfortunately I don’t have a medical team working together so I have to be my own advocate between all of my Dr. Including my pharmacist and my dentist. I am so thankful that I found this group.

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@codered032 Thank you for sharing the Mayo Clinic connect site with that lady! I am sure she will feel more comfortable once she has the opportunity to read our posts. I recall when I was told about my kidney disease, back in 2005, and how it floored me. My friends at dinner that night, simply shrugged their shoulders.

Yes, being your own advocate and establishing a great team that works for you, is the best way to go. I forgot about my dentist. My hygienist Caroline is tops! Another spoke on the wheel.
Ginger

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…I have been criticized by medical personnel for checking Internet so often for multiple issues but I am happy to be able to and especially this site..what other choice do we have… as above is saying, waiting six months to see a specialist, what do we do in the meantime? Not dr fault….. but many things… covid, flu, people no longer wishing to train as doctors, and (I am in Canada) government's fault to an extent with we seniors , they knew longevity was on us.. warned for many years about the number of seniors living longer, but did nothing about it… now a scramble to get more sheltered housing for seniors etc. Yet when I applied for MAiD in Canada based on my illnesses was turned down… I am beyond my best before date and would rather the money spent on me and still suffering, be spent on the younger generation so they can live healthy lives til they become seniors; yet, please understand that if others want to live to 100 regardless of pain and suffering, they should receive the treatment they want and need…… we just dont have enough doctors and such any more as we used to and some tough decisions are going to have to be made …. sorry, its how I feel and I do understand those who disagree with my thinking…. J.

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@gingerw

@codered032 Sitting with this question overnight, I pondered what to say. I would like to think that members of the medical community are finally seeing how important it is to keep track of kidney issues. How much our kidneys do, and how our general health can be affected when they misbehave. How so many other conditions can have a trickle down effect on the kidney function, and the connection of co-morbidities. It is my opinion only, that nephrology is not stressed enough in the general medical education years.

We are developing a new type of patient, well-informed and self-advocating, willing to push for complete care. Willing to look at trends, and education in our kidney disease. And willing to share the solid information we discover, with others. It is a win-win for us patients, but may be a thorn in the side of medical practitioners who would rather focus on something else. We owe it to ourselves to be the best we can.
Ginger

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Thank you so much for your reply. I was informed I was a stone maker to you are in CKD stage 3a. Why wasn’t I informed sooner, like stage 1. I could have radically changed my diet and perhaps not advanced. Next week I have my 4th kidney stone removal surgery in 18 months, and there will be more.
I agree that some doctors don’t like patients that are well informed and advocate for themselves.

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