Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

Posted by anet @anet, Oct 21, 2019

My husband who is 75 is in stage 4 kidney disease according to his gfr. His last Gfr was 27. That sounds terrible to me, but his nephrologist says he is stable. He is not diabetic. His creatinine is 3.2, albumin 4.1. Phosphorus, sodium, calcium, potassium are all normal. His blood pressure is controlled by medication. He exercises by walking one and a half miles every day. He has two heart stents and takes cholesterol medicine. He has shortness of breath on occasion, but still does all of his normal activities like light yard work, fishing, dining out, going to church activities. I do think he sits too much, but try not to nag. He is not good about eating healthy, but is getting better. Maybe I am just worrying too much. Would like to hear from others in this stage of kidney disease.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

@gingerw

@kamama94 I am heartbroken to learn of your turn of health. Will your son be able to help out at all? Wasn't he the one to come in and modify your apartment for you, and help you out? Can the County assist you for home care, or your senior services?
Ginger

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Son lives 800 miles away. Housing Authority/HUD modified apt. Cannot meet Medicaid spenddown for home help due to Service Dog expenses, only temp help after hospital and hospital goofed up ordering help so I have had no one since home from hosp. No county help avail or senior services.

Thank you for your support and friendship.
________________________________

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I have been diagnosed with a growth in my kidney 3cm. They are waiting for 2 months before next sonar. Am already in stage 4 . Can anyone advise why they wait?

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@goibib

I have been diagnosed with a growth in my kidney 3cm. They are waiting for 2 months before next sonar. Am already in stage 4 . Can anyone advise why they wait?

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@gobib Welcome to Mayo Clinic Connect. I can only imagine how nerve-wracking this must be for you!

Your best move is to frankly ask your medical team why the two month recheck, what differences would they see to go ahead and do something. Don't wait until the two months go by to ask!

I had a growth/possible tumor show up unannounced in a scan April 2020, on my right kidney. The location was awkward, in the upper poles. I went with scan every 6 months [smaller size than yours] for a couple of reasons. The doctor felt that due to my kidney disease stage of 4 at that time, plus my active blood cancer involving chemo, he did not want to put me under additional risk with surgery. Since them, it has been determined that rather than a tumor, it is a complicated cyst.

While this discussion about Complex Cysts shows in both the the "transplant" and "kidney and bladder" groups. there is a lot of good information here:
https://connect.mayoclinic.org/discussion/renal-complex-cyst/

Do you think your doctors may determine the same as mine?
Ginger

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@goibib

I have been diagnosed with a growth in my kidney 3cm. They are waiting for 2 months before next sonar. Am already in stage 4 . Can anyone advise why they wait?

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Hello @goibib. I'd like to add my welcome alongside that of @gingerw.

You will notice that I have moved your post into an existing discussion on Stage 4 Chronic Kidney Disease (CKD), which you can find here:
- Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD) https://connect.mayoclinic.org/discussion/stage-4-ckd/

Feel free to click "View and Reply" to see the full discussion and read back through the other posts if you would like.

I think @gingerw has given you some good information to consider, so will let you reply to her next.

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@gingerw

@gobib Welcome to Mayo Clinic Connect. I can only imagine how nerve-wracking this must be for you!

Your best move is to frankly ask your medical team why the two month recheck, what differences would they see to go ahead and do something. Don't wait until the two months go by to ask!

I had a growth/possible tumor show up unannounced in a scan April 2020, on my right kidney. The location was awkward, in the upper poles. I went with scan every 6 months [smaller size than yours] for a couple of reasons. The doctor felt that due to my kidney disease stage of 4 at that time, plus my active blood cancer involving chemo, he did not want to put me under additional risk with surgery. Since them, it has been determined that rather than a tumor, it is a complicated cyst.

While this discussion about Complex Cysts shows in both the the "transplant" and "kidney and bladder" groups. there is a lot of good information here:
https://connect.mayoclinic.org/discussion/renal-complex-cyst/

Do you think your doctors may determine the same as mine?
Ginger

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@gingerw
Hi Ginger
Thank you for your helpful response. I think the reason may be that I also have Angina and the urologist wants to see if there is any growth. He says it is in a cyst. I am going to check that link you sent. Thank you .

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@goibib

@gingerw
Hi Ginger
Thank you for your helpful response. I think the reason may be that I also have Angina and the urologist wants to see if there is any growth. He says it is in a cyst. I am going to check that link you sent. Thank you .

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@goibib Ah, yes, the addition of other health issues will often have our medical team hesitate to proceed full bore, definitely! I hope that the urologist's thoughts are correct. In my case, they had decided what was a probable renal cell tumor would result in removal of my kidney once I started dialysis. Then the determination of it being a complex cyst rather than tumor was a relief to everyone, including me!

Please let me know how I may support you, will you?
Ginger

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@amandajro

Hello @goibib. I'd like to add my welcome alongside that of @gingerw.

You will notice that I have moved your post into an existing discussion on Stage 4 Chronic Kidney Disease (CKD), which you can find here:
- Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD) https://connect.mayoclinic.org/discussion/stage-4-ckd/

Feel free to click "View and Reply" to see the full discussion and read back through the other posts if you would like.

I think @gingerw has given you some good information to consider, so will let you reply to her next.

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Thank you so much Amanda.

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@goibib

I have been diagnosed with a growth in my kidney 3cm. They are waiting for 2 months before next sonar. Am already in stage 4 . Can anyone advise why they wait?

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Good evening. I want to thank @ldrlaw for the "hug" but I cannot get my
keyboard to work where it says "reply above this line ". Could you please
tell me what I should do?. Thank you.

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@gingerw

@goibib Ah, yes, the addition of other health issues will often have our medical team hesitate to proceed full bore, definitely! I hope that the urologist's thoughts are correct. In my case, they had decided what was a probable renal cell tumor would result in removal of my kidney once I started dialysis. Then the determination of it being a complex cyst rather than tumor was a relief to everyone, including me!

Please let me know how I may support you, will you?
Ginger

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@gingerw
Thanks Ginger. I truly appreciate your offer and will definitely ask you if I am told things that don't make sense to me.
I forgot to mention that I am going for blood tests this coming Thursday. Maybe he will have more to tell me then. Will let you know. By the way I live in South Africa.
Oh and I wanted to ask you if you are on dialysis? He told me that if the cancer grows and they have to remove the kidney I will go straight onto dialysis.

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@goibib I have Stage 4 Chronic Kidney Disease (CKD) due to diabetes and hypertension. I don’t have any other kidney stuff that needs to be monitored or scanned like you do. The reason I’m responding here is that something turned up on a scan that my husband had. It was large and in the kidney. At first it was thought to be a kidney stone but then not. At this point he gets a scan once a year to see if it has changed in size or shape. It hasn’t. He has had it a long time. I don’t even remember what led to having the first scan but it was unrelated to kidneys at all. We now joke that he has something which is really nothing. The best thing for you to do is continue to learn about CKD stage 4 and to ask about the protocol for the scan as Ginger suggested.

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