I'M AT STAGE 4

[MSTAUF]

I'm at stage 4 of kidney disease

Three months ago my kidneys functioned at 20 per cent. Now at this appointment they are at 24 per cent .

The lab work showed that my hemoglobin was at only 6.0 .They put me in the hospital for two days and gave me 2 units of blood.Got it up to 7.4

They also took 10 pounds fluid from my chest that was causing shortness of breath .

Kidney Doctor sent me for another lab draw the hemoglobin is now 9.7 .

He ordered 2 infusions one week apart to get the iron and B12 up to normal.Also put me on 1000 mg of B12.

My hemoglobin had always been good. So they don't know where the blood was going. . They also ordered an colonscopy . Is this a normal thing to happen with kidney disease ?

[bbeba103]

Hi MSTAUF,

10 months ago I found out I have chronic kidney disease stage 3, but before majority of my symptoms were anemia in 2019 it's where it all started. When seen by my primary, Dr after doing some bloodwork my levels were 3.9 told to go start to the emergency room by then they were 2.9, and needed a blood transfusion asap. Was kept over night for observation was told kidney fiction was back to normal, my problems continued at that time, but I wasn't dagnosed with kidney decease. Kept having problems breathing, my blood pressure would be pretty high, but never told I had kidney decease. Found out last year my world was turned upside down I also suffer from kidney stones. My primary Dr failed to tell me in person on our visit to get a referral to a kidney specialist for my kidney stones I learned at home that I had stage 3 kidney disease. My first visit with my nephrologist was my egfr was 32 didn't understand what those numbers meant til seeing her, and also looking online. Around June on a follow-up because I ended getting admitted at a different hospital for the same symptoms, since that hospital was the closes at the moment I went there instead of my regular hospital. I had blood work the same day recieved a call to come back to the hospital, to get a admitted my sodium, b12, potassium, electrolytes were all a mess, and at risk at any moment of going into cardiac arrest. Also my blood level was 6.9 after a week in the hospital my numbers went up again, but they weren't sure why my blood levels were so low so they ordered a colonoscopy. Also my creatinine levels were high was taken off all my blood pressure medications 3 in total, because some can hurt my kidneys even more. In one of my pervious visit everything was back to normal. So instead of seeing my nephrologist everything 3 months now it was changed to every 5 months in my last visit my egfr was 47 all this time I was taking iron pills 2 times a day plus sodium bicarbonate 2 days a day as well, since I'm allergic to iron transfusion that nearly killed me a few years ago, so could only tskr iron pills. About two weeks I went for a urine sample at the sametime they requested blood work. My egfr went down to 44, my sodium went up a bit again, and so did my creatinine which needs to be lowered. From what I have been told all of complications are related to having chronic kidney disease stage 3. dialysis has been brought up a few times, but not as a treatment right this moment. Was told I need to DRINK LOTS OF WATER, like a lot. So alot of what you shared on your post I could relate to so that's why I decided to reply to your post.

Praying that we all can get a miracle, and bring our kidney function to better numbers, stay strong God bless you 🌹

[sam221 in reply to bbeba103]

Sounds interesting. I believe that fasting on water can help. Your kidneys need to rest.

[bbeba103 in reply to sam221]

Hi Sam221,

On every visit I'm reminded to drink lots of water which I have always liked wasn't an issue. I have read that fasting on water can be beneficial for your kidneys, although I yet haven't tried it. Just drinking lots and lots of water. 🙂

[orangecity41 in reply to bbeba103]

Yes confusing. I guess depends on health conditions also?

[bbeba103 in reply to orangecity41]

Yes that probably also plays a role, my nephrologist explained as we age it's normal for our kidney function to start to go down. In my case I'm in my 40's so it becomes an issue, and with that we know they're is only two options. I'm prayed yesterday that everyone in this group could a little miracle where our kidneys can heal. 🌹💕

[orangecity41 in reply to bbeba103]

Thanks for thoughts. I am 81 and diagnosed at age 75 and put on CKD diet.

[sam221 in reply to bbeba103]

There are people who say they've had a remarkable turn around by fasting.

[bbeba103 in reply to sam221]

I read a story this older gentleman did fasting with baking soda I was going to try it, but got scared on how the baking soda would harm my kidneys. 🌹

[Waise in reply to bbeba103]

Keep closed following your nephrologist advise, never listen to others as CKD is a case by case have different treatment protocols only your closed nephrologist knows the exact correct details. Fasting from water may be have benefit for some cases and dangeourous for other.

[MSTAUF in reply to bbeba103]

WOW Thanks good to know I'm not alone. I know I need to drink more water,but have never been a big water drinker.I'm going to read your reply a few more times. prayers to you that all goes well.

[bbeba103 in reply to MSTAUF]

Yes please start to consider drinking more water as I was told by my nephrologist and still get reminded when I see her. In January I have another follow up with my GI Dr for another colonoscopy. While in the hospital a few months I was ordered one to rule out I'm not bleeding, and to rule out that's not why I'm so anemic. It was a total fail at the hospital, because they didn't give me that liquid til 9 pm I was up til 4 am, but developed a fever pretty high I couldn't finish drinking that liquid for thr colonoscopy. ( fun ) lol

ps remember drink lots of water 🥰

[sam221 in reply to MSTAUF]

I heard a guy say that most of the water intake comes from fruits and veg. Not drinking glasses of water.

[Waise in reply to MSTAUF]

Never follow others advise. Plz keep follow your nephrologist advises only if he advise you to drink more water then do, but if he advise you to limit water drinking you do also, as he is the only one knows your case exactly. Drinking more water may have benefit in some CKD cases and dangeourous for other cases and your closed nephrologist is the only one who knows which case is yours.

[orangecity41]

I was diagnosed at CKD level 3b. I have anemia and low B12 and D3. I also take b12 and D3 supplements. So far not prescribed any infusion as not low enough level for it.

[RickHow in reply to orangecity41]

I too am 3b, anemic. My doctor has me taking iron supplement 2x per day at 325mg.

[RickHow]

The most common cause of low hemoglobin levels is not enough iron in the system. This leads to iron deficiency anemia. It is common for CKD patients. I wouldn't try to label it as normal or not. It happens.

Now about water I am not among the drink tons of water. In fact, my own kidney doctor and GP and urologist while they encourage me to drink water, they caution me to not overdo it. The key is to stay hydrated. Too much water can be harmful to the kidneys. It can get to the point that it is too much for the kidney to keep up with and you actually become over hydrated. Think of your kidney as a filter like one you put in your coffee machine for example. The kidney filters you blood trying to get rid of what is not needed in your body or what is in excess (toxins), keep a balanced amount of water in your system. The kidney can only remove a certain amount of fluid (water) from your system. The excess fluid (if you drink to much) will remain in your system and lead to other problems such as hypertention, weight gain, trouble in lungs (fluid), etc. It also depends on what stage of CKD the person is in. For example a stage 1 or stage 2 person can easily handle 64 to 70 ounces per day. Stage 3 my doctors tell me drink enough to stay hydrated and do not overdo it. Stage 4 level you should be drinking far less than normal not more. You can monitor your hydration level by simply looking at the color of your urine each time. It should be light yellow like the color of straw. If it gets to looking clear you are overhydrated. If it gets to be more and more yellow you are dehydrated.

So why do people drink and drink and drink? It pushes more water through the kidney (keep in mind the kidney has a limit of how much it can handle. what it can't handle remains in the system). This flushes out the kidney and thereby reduces their Creatinine level. This makes it appear that they have a better gfr level. But is it fictional. It masks the true function of your kidney. For example when you go for a cholesterol blood test they have you fast for 10 hours or so. This is to get a true measurement of your cholesterol level and not one influenced by what you just ate or drank.

To test true kidney function you want to be hydrated to test if your kidney is removing proper amounts of water. Not function that has been over diluted by abnormal fluid consumption.

You can not believe all that you read on searches on Google. But you can trust such reliable websites such as the Mayo Clinic for example, or others. Do a simple google on "how much water should a person with CKD consume daily", or "can you drink too much water if you have CKD", etc. Look at reliable websites. As I say my doctors all warn me to NOT drink water in excess.

[bbeba103 in reply to RickHow]

Interesting, but since I was diagnosed with chronic kidney disease stage 3 my nephrologist has told me to drink lots of water, which I have tried my best. It also helps if your creatinine levels are high which they have been, went down for like two months, but recently went up again. Great hearing from others, and there input

[RickHow in reply to bbeba103]

yes drinking water will increase the amount of fluids that pass from your body as urine. As such it will flush out more toxins (Creatinine for example). It is basic, like a filter, the more you pour into one end the more will come out the bottom of the filter. But it does not change the health of the filter in any measurable way. You will get better egfr results because you flushed out more creatinine. But your kidney function is not really any different. Think of it like this.... if you have for example a muscle pain and you take acetaminophen to feel better. The pill will "hide" the pain, but it really does nothing to fix the muscle (does cure inflammation, nor swelling). Drinking excess water (lots of water as the doctor said) will make your blood test results better, flush out more Creatinine which really even at high levels does no bodily harm.

[sam221 in reply to RickHow]

I believe being hydrated is important but water alone will not really change your creatine level. If that changes for the better, your egfr rating will go up. But I have found several things that may positively affect your kidneys. You can do your own research. First is fasting. Second is eating mostly veg and fruits in the percentage approx of 4/5 to 1/5. Third is STOP eating sugar. Forth is excertise. Fifth and crucial is: drink a glass of red wine and about 2 tablespoons of quality extra virgin olive oil. search.yahoo.com/search?fr=....

[horsie63 in reply to RickHow]

Not just the "filter" aspect of the kidneys but too much water will flood your cells leaching out the electrolytes you HAVE to have such as sodium and potassium. If you want to see this in action then attend an ultramarathon race or read the studies done on athletes over hydrating. It's as dangerous as being dehydrated.

[MSTAUF in reply to RickHow]

THANKS Aging sure can suck.

[Willowdene in reply to RickHow]

richHow you always talk common sense and reply with sensible answers I totally agree with all you said. Im a A registered nurse of 40 years

[RickHow in reply to Willowdene]

thanks

[horsie63 in reply to RickHow]

As a former ultramarathoner too much water was as dangerous as too little. Too much and your electrolytes become swamped. The advice to monitor the color of your urine is good advice.

[sam221]

Well, it's like this: when I don't eat my body feels, aside from hunger pangs which I resolve by drinking water...my body feels great. Its when I eat that I get tired because of the kidney disease. That is how fasting helps. Your kidneys are resting. Over time, they can repair themselves, somewhat (I'm told). I tend to believe that.

[RickHow in reply to sam221]

It is likely what you are eating that is causing tiredness after a meal. Foods high in sugar, protein, carbs, can cause this condition.

[sam221 in reply to RickHow]

Yes I'm changing. Instead of eating a regular American breakfast I'm eating a salad. Lunch is veggie and I am not experiencing tiredness.

[Hidden]

Hi MSTAUF

I, too, wonder if low iron levels are part of kidney disease.

All my life I have been iron deficient despite eating fresh vegies/salads along with almost raw meat.

Now, (after finding out this year that I've had ckd for years), I wonder if it has always been related to my kidneys.

I have to taken an iron tablet every day just to keep my iron levels from dropping.

[RickHow in reply to Hidden]

I have stage 3b CKD. I also receive cancer treatments (IV) every 3 weeks. At each treatment my blood is checked. Over time the blood tests showed a slow decline in the iron in my blood. The low iron led to constantly declining hemoglobin levels. Thus, IDA (Iron Anemia). The doctor started me on Iron supplement tablets (325mg) 2 times a day. Over the next 6 weeks my iron and hemoglobin levels continued to decline. My body was not absorbing the iron from the tables. This is not an unusual condition. So we started Iron Infusion (IV). The process is so easy. The actual infusion takes exactly 15 minutes. Then you are required to sit for an additional 30 minutes to be sure you have no adverse reaction (adverse reactions are very low in something like just 1 or 2 percent of patients. You have a first treatment, then the next week a second treatment. then future infusions, if any, are done if your iron level gets below normal. I have only had one treatment (2 infusions). On the literature it is stated that the infusion approach is recommended for patients with CKD. There is clearly a connection between kidney and iron. Here is a small explanation I saw:

In CKD, kidneys don't make enough of a hormone called erythropoietin (EPO), which your body needs to make red blood cells. Your body also needs iron to make red blood cells. When there is not enough EPO or iron, you make fewer red blood cells, and anemia develops

[Hidden in reply to RickHow]

I hope your recovery from cancer progresses, and also good to know the iron infusion is working.

Thank you for the details on ckd/iron.