1. < Kidney & Bladder

My Kidney numbers dropped 25 numbers in 10 months

Posted by sallylynn @sallylynn, Jun 2, 2023

Quite the scare here. I recently had blood work done in 04/2023.I was surprised to see my Kidney sGFR was 64. PREVIOUSLY, in 07/2022 my kidney eGFR was 78. That is 14 numbers down in 9 months! I then went back on 05/2023 and had more blood work done. My eGFR went down to 53. My Creatitine from on 04/25 was 99. Now it is 1.17. My BUN was 16 in 04/2022 and now my BUN is 27. Something is clearly wrong and I don't feel my Doctor is concerned enough, although my doctor said, yes, your kidneys are stressed. My Doctor did tell me to take 1/2 a dose of my Lisinopril,which I take normally 20 mg., thus the June appt. to check my kidneys again. My BP has been very good, my weight good. I exercise. Any advise would be highly appreciated. Thank you

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

sallylynn | @sallylynn | Jun 2, 2023
In reply to @gingerw "@sallylynn Definitely time to get in to see a nephrologist, based on your comments! You probably..." + (show)
@gingerw

@sallylynn Definitely time to get in to see a nephrologist, based on your comments! You probably are okay with the scan, but check with your team to be sure. For me, it was when I got to eGFR of 30 or so, that I had to go contrast-free. All signs point to you needing to see that kidney doctor! I bet you are keeping a journal of symptoms, right?! Kidneys often hurt in the lower back area, if they hurt, at least in my experience.
Ginger

Jump to this post

Yes, I am keeping track.All I really need to do is download all my conversations in my chart. Should I call the facility I am going to and tell them my Kidneys are having trouble? They are unaware, and I know my Primary did not discuss this with them. I am having my lungs imaged and my esophagus.When it was scheduled, I did not know as of yet of my declining eGRF. My appt. is on Monday. As you can see, my Doctors are not pro active. I do not want the CT scan IF it will damage my kidneys further, no way. I am not risking that. I monitor my BP at home every day, several times a day. Right now it is 131/72 pulse 80. I have a oximeter at home (You put your finger in it) and my oxygen is 100. My temp is 97.6, which is normal for me. I find it very important to monitor my vitals. Oh, I should mention I am a white 62 year old women and average in weight. I exercise every day, 1/2 hr. on the treadmill, then 20 minutes of squats, stretching, and then 20 min Irish dancing ( I am not trained, but do the steps for cardiovascular. All this working out and I feel like crap and worried if I have something terminal. How sad is that. I am a smoker, but have cut down and will be picking up my smoking cessation gum at the Pharmacy tomorrow. I am trying very hard.

REPLY
2 replies
windyshores | @windyshores | Jun 2, 2023
In reply to @sallylynn "Yes, I am keeping track.All I really need to do is download all my conversations in..." + (show)
@sallylynn

Yes, I am keeping track.All I really need to do is download all my conversations in my chart. Should I call the facility I am going to and tell them my Kidneys are having trouble? They are unaware, and I know my Primary did not discuss this with them. I am having my lungs imaged and my esophagus.When it was scheduled, I did not know as of yet of my declining eGRF. My appt. is on Monday. As you can see, my Doctors are not pro active. I do not want the CT scan IF it will damage my kidneys further, no way. I am not risking that. I monitor my BP at home every day, several times a day. Right now it is 131/72 pulse 80. I have a oximeter at home (You put your finger in it) and my oxygen is 100. My temp is 97.6, which is normal for me. I find it very important to monitor my vitals. Oh, I should mention I am a white 62 year old women and average in weight. I exercise every day, 1/2 hr. on the treadmill, then 20 minutes of squats, stretching, and then 20 min Irish dancing ( I am not trained, but do the steps for cardiovascular. All this working out and I feel like crap and worried if I have something terminal. How sad is that. I am a smoker, but have cut down and will be picking up my smoking cessation gum at the Pharmacy tomorrow. I am trying very hard.

Jump to this post

@sallylynn again your eGFR is not that bad yet so docs may not be recognizing that it has dropped. It is reasonable for you to wonder what is causing the drop and if it will continue. A nephrologist will make you feel better cared for.

CT scans and radiation won't hurt your kidneys but you can decline to have any contrast. Contrast is still okay for your eGFR technically but with what is going on I would probably deny it too.

REPLY
1 reply
sallylynn | @sallylynn | Jun 3, 2023
In reply to @windyshores "@sallylynn again your eGFR is not that bad yet so docs may not be recognizing that..." + (show)
@windyshores

@sallylynn again your eGFR is not that bad yet so docs may not be recognizing that it has dropped. It is reasonable for you to wonder what is causing the drop and if it will continue. A nephrologist will make you feel better cared for.

CT scans and radiation won't hurt your kidneys but you can decline to have any contrast. Contrast is still okay for your eGFR technically but with what is going on I would probably deny it too.

Jump to this post

Hi. I am apprehensive to have it done. I may call the hospital and ask them if it is wise.

REPLY
1 reply
windyshores | @windyshores | Jun 3, 2023
In reply to @sallylynn "Hi. I am apprehensive to have it done. I may call the hospital and ask them..." + (show)
@sallylynn

Hi. I am apprehensive to have it done. I may call the hospital and ask them if it is wise.

Jump to this post

Maybe ask if the CT scan is low dose radiation. That is the case at many hospitals. There isn't risk of kidney damage without contrast. Good luck!

REPLY
mrainne | @mrainne | Jun 3, 2023

Thank you for this discussion. I feel right in there. My GFR started deteriorating in 2014. I took lithium for 30 years, but that was not the cause according to my nephrologist. I have Polycystic Kidney Disease as well as Nephrogenic Diabetes Isipidus. This was not known until I saw a Nephrologist. My GFR continued to go down, slightly but was stable (GRF 32-35 range) over the next 9 years. Very recently my GFR dropped to 26. I drink plain water, watch my salt, eat a low-protein diet with very little meat am not overweight (133 lbs.), do not have high blood pressure, and am on 2 medications that do not affect the kidneys. I have an appointment at Mayo Clinic this month. All my other bloodwork is perfect. Nothing out of sorts, potassium, sodium, CO2, cholesterol..all normal, actually very good. I am not diabetic (sugar). I am putting this mystery in the hands of the specialists at Mayo since my Nephrologist is not concerned and keeps telling me I'll live to 100. I understand he's trying to be positive but I'm moving up the chain of specialists.

REPLY
1 reply
sammyloue | @sammyloue | Jun 3, 2023

How much water are all you guys drinking? No pops, alcohol, tea, coffee. I do drink 1 cup of coffee in AM. But no more. That Linispinol is very bad-read all about it on Duck -Duck -Go. 64 ounces of purified water every day.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 3, 2023
In reply to @sallylynn "Yes, I am keeping track.All I really need to do is download all my conversations in..." + (show)
@sallylynn

Yes, I am keeping track.All I really need to do is download all my conversations in my chart. Should I call the facility I am going to and tell them my Kidneys are having trouble? They are unaware, and I know my Primary did not discuss this with them. I am having my lungs imaged and my esophagus.When it was scheduled, I did not know as of yet of my declining eGRF. My appt. is on Monday. As you can see, my Doctors are not pro active. I do not want the CT scan IF it will damage my kidneys further, no way. I am not risking that. I monitor my BP at home every day, several times a day. Right now it is 131/72 pulse 80. I have a oximeter at home (You put your finger in it) and my oxygen is 100. My temp is 97.6, which is normal for me. I find it very important to monitor my vitals. Oh, I should mention I am a white 62 year old women and average in weight. I exercise every day, 1/2 hr. on the treadmill, then 20 minutes of squats, stretching, and then 20 min Irish dancing ( I am not trained, but do the steps for cardiovascular. All this working out and I feel like crap and worried if I have something terminal. How sad is that. I am a smoker, but have cut down and will be picking up my smoking cessation gum at the Pharmacy tomorrow. I am trying very hard.

Jump to this post

@sallylynn You are doing all you can from your seat in the house. Being aware of your situation is important, definitely. If I was in your shoes now [and I have been in that shoe store at least], I would ask the tech to confirm if this is a contrast scan, and what kind it is. Gadolinium contrast is hard on the kidneys; that is where it is cleared from the body. My oncologist ordered scans, and we discussed my eGFR levels at that time. We decided to skip the contrast because although it was above 30, he didn't want to take chances.

You have several people here offering support, so don't feel alone. Stand up for yourself, and advocate for your best health.

I am on peritoneal dialysis. i drink a cup of coffee in the morning, or split it half in the morning, half in afternoon [then it is iced!]. Plain water with True Orange crystals and crushed ice, about 36 oz a day. No sodas, no alcohol.
Ginger

REPLY
1 reply
sallylynn | @sallylynn | Jun 3, 2023
In reply to @gingerw "@sallylynn You are doing all you can from your seat in the house. Being aware of..." + (show)
@gingerw

@sallylynn You are doing all you can from your seat in the house. Being aware of your situation is important, definitely. If I was in your shoes now [and I have been in that shoe store at least], I would ask the tech to confirm if this is a contrast scan, and what kind it is. Gadolinium contrast is hard on the kidneys; that is where it is cleared from the body. My oncologist ordered scans, and we discussed my eGFR levels at that time. We decided to skip the contrast because although it was above 30, he didn't want to take chances.

You have several people here offering support, so don't feel alone. Stand up for yourself, and advocate for your best health.

I am on peritoneal dialysis. i drink a cup of coffee in the morning, or split it half in the morning, half in afternoon [then it is iced!]. Plain water with True Orange crystals and crushed ice, about 36 oz a day. No sodas, no alcohol.
Ginger

Jump to this post

Hi Ginger. Well, I ended up going to the ER this morning. Last night, I had severe pain in my upper left back, under my left breast and the center of my chest. I was getting very worried. I was tempted to go at 1:00 in the morning but had my husband take me at 7:30 in the morning to the ER. I had many tests done, lots of blood work, a EKG and I did have a CT with contrast. Let's talk about that. I was very apprehensive but on the fence as well. They were concerned possibly with my pancreas and other organs. My eGFR went up to 58 from 53 with Hospital blood work. My BUN was in normal range at 17 my Creatinine went down from 1.17 to 1.08. The Doctors in the ER were very confident my Kidney functions were ok to go ahead. Did I make a mistake? I felt like I was between a rock and a hard place. They found no problems with my organs after the CT scan. May I ask what you would have done. I am wondering now if I just seriously screwed up. The dye I got was iohexol Omnipaque 350MG

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 3, 2023
In reply to @sallylynn "Hi Ginger. Well, I ended up going to the ER this morning. Last night, I had..." + (show)
@sallylynn

Hi Ginger. Well, I ended up going to the ER this morning. Last night, I had severe pain in my upper left back, under my left breast and the center of my chest. I was getting very worried. I was tempted to go at 1:00 in the morning but had my husband take me at 7:30 in the morning to the ER. I had many tests done, lots of blood work, a EKG and I did have a CT with contrast. Let's talk about that. I was very apprehensive but on the fence as well. They were concerned possibly with my pancreas and other organs. My eGFR went up to 58 from 53 with Hospital blood work. My BUN was in normal range at 17 my Creatinine went down from 1.17 to 1.08. The Doctors in the ER were very confident my Kidney functions were ok to go ahead. Did I make a mistake? I felt like I was between a rock and a hard place. They found no problems with my organs after the CT scan. May I ask what you would have done. I am wondering now if I just seriously screwed up. The dye I got was iohexol Omnipaque 350MG

Jump to this post

@sallylynn I would have probably gone ahead with the testing like you did. Be sure you hydrate well, to flush your system. When you go to your regular doctor next, be sure you tell them what happened, and tke the results with you! What did the ER say was going on?
Ginger

REPLY
windyshores | @windyshores | Jun 4, 2023
In reply to @sallylynn "Hi Ginger. Well, I ended up going to the ER this morning. Last night, I had..." + (show)
@sallylynn

Hi Ginger. Well, I ended up going to the ER this morning. Last night, I had severe pain in my upper left back, under my left breast and the center of my chest. I was getting very worried. I was tempted to go at 1:00 in the morning but had my husband take me at 7:30 in the morning to the ER. I had many tests done, lots of blood work, a EKG and I did have a CT with contrast. Let's talk about that. I was very apprehensive but on the fence as well. They were concerned possibly with my pancreas and other organs. My eGFR went up to 58 from 53 with Hospital blood work. My BUN was in normal range at 17 my Creatinine went down from 1.17 to 1.08. The Doctors in the ER were very confident my Kidney functions were ok to go ahead. Did I make a mistake? I felt like I was between a rock and a hard place. They found no problems with my organs after the CT scan. May I ask what you would have done. I am wondering now if I just seriously screwed up. The dye I got was iohexol Omnipaque 350MG

Jump to this post

@sallylynn with that eGFR I would have gone ahead. That is close to the reference range of < 0. I was just in the ER and mine was 37 🙁

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.