Fast 33pt drop in Gfr

[Hb19]

My father has liver cirrhosis and Kidney disease. His GFR just dropped from 44 to 11 since December 20th. He gets real lightheaded. Is this big of a drop normal? I assume this moves him to stage 4. Of course the weekend with no doc available is eating at my anxiety when I live 2hrs away.

[Sammi_n_Munk]

Hello Hb19. I must admit, although I suffer also from CKD, I actually don’t know much about GFR levels. However, kidney.org, is a website that I visit often, whenever I’m feeling symptoms that spark my curiosity, or that I find bothersome. I can well understand what your father is going through. I too, suffer from extreme exhaustion, and you sound very worried (understandably so.) I hope the above website is at least somewhat helpful to you and your father. I wish him all the best. God bless.

[Hb19 in reply to Sammi_n_Munk]

Thank you. Yes, I lost my Step Mom 2 years ago to pancreatic cancer and I just moved 2 hours away. He's been so lightheaded for a few weeks now it just scares me with him alone. I hate to google things but as slow as doctors are with telling updates and I get the results, it's hard not to. Sending you lots of healthy vibes!

[Jayhawker in reply to Hb19]

I, too, have experienced 3 sudden drops in my eGFR like what your father has recently experienced. Clearly he needs to see a nephrologist as soon as possible.

In my case, my severe and sudden drops in eGFR were related to dehydration. The dehydration also caused very low blood pressure. It was the low blood pressure that caused my dizziness.

But I also have very severe anemia as a side effect of my CKD. That, too, causes lightheadedness and dizziness. It’s not as severe as the dizziness I experience when I’m dehydrated.

So I monitor both my weight and my blood pressure daily at home. That way I can fairly accurately determine what is causing dizziness when I experience it. If I’m several pounds lighter than normal and my blood pressure is running low I realize that I’m dehydrated and that is most likely the cause of my dizziness. In that situation my nephrologist has told me to drink more water. So I drink an additional 8-10 oz of water for 1-2 days, until my blood pressure elevates back into the normal range.

While it’s rare for me to experience fluid retention, when I do it elevates both my weight and my blood pressure. When that happens I decrease my sodium intake from 1200 mg daily to 500-600 mg daily for a few days until my blood pressure moves back into the normal range.

My anemia is under effective treatment so I virtually never experience dizziness related to the anemia now. But at first that was another causal factor. It took a while to develop an effective treatment plan for the anemia...

But again, there are many issues that can cause dizziness. So the doctors visit is critical. However, if your father weighs himself daily and can check his blood pressure, that will be of some help. He can take that information to his doctor’s appointment.

In the meantime, I typically sit up slowly and then sit on the side of the bed for about a minute before I stand when I’m dizzy. That definitely helps. Then I hold on to a chair back when I first stand. I wait about 30 seconds before I begin walking. Both of these give my body a chance to adjust to the change in my body position. This may help your father too.

But, again, dizziness is something I no longer experience regularly because my doctors and I have figured out what was causing my dizziness and we’ve figured out how much fluid I should be drinking daily as well as how much sodium I should be eating daily.

Let us know how it goes with your father.

Jayhawker

[Sammi_n_Munk in reply to Jayhawker]

Hello Jayhawker! I just wanted to say thanks for your advice. I’m going to try to follow what you do with the closer monitoring of fluid intake. I must admit, even though I’ve suffered through this issue for about ten years now, I have not been as vigilant as I should be. My weight also seems to fluctuate up and down, and lately, I’ve been experiencing bouts of extreme irritability and sadness. I was once on blood pressure meds but had to stop them because they were taking quite a toll on my already weakened kidneys. So, I’m pretty sure it’s the kidneys causing the issue. Also, I’ve been a little forgetful lately whereas, I used to have quite a sharp memory. However, from what I’ve been hearing through this forum, it sounds like these symptoms all go with the territory I suppose.

Thanks for listening (or reading, that is.) All the best!

[Hb19 in reply to Jayhawker]

Thank you so, so much. I've asked him to monitor his BP and of course when I sent him your advice he says I'll start. He does have anemia as well and his BP has been lower, plus the new med he is taking for his liver can lower that! He has been stuck in a depression for awhile now. Lost his mother in law april 2018. Wife a month later and his Mom this last June. He drank to hide his sorrow so we ended up in liver cirrhosis and just had a paracentesis the middle of December. Now to see these new numbers scares me. He isn't spending much time out of bed. He is getting so thin, with just a round belly. It's like he aged 20 years in a month. He has read that drinking to much isn't great so it's possible he could be a little dehydrated, I have stocked his house when I go down with Water, Vitamin water for electrolytes and recently he requested propel but I guess those aren't a great option. His sodium has to stay below 2500 which I am sure since his nutrition is terrible he is not anywhere close. So hard. We just moved away last August so not being there to monitor him is killing me.

[Jayhawker in reply to Hb19]

That’s a lot of loss to have to adjust to in such a short period of time. It’s understandable that he may be grieving quite a lot right now.

I’m not sure how old he is but wonder whether he’d be interested in having meals delivered daily. If so that would both provide appropriate nutrition within his sodium limitations plus he’d have company drop by with the meals daily. Some older people like meal delivery and others don’t. Anything that would help him connect with other people regularly would probably be good for him.

Another option might be hiring someone to come for about an hour a day to prepare his lunch and dinner meals. This person could fix him lunch and then as he eats could prepare dinner leaving instructions for him regarding how to cook dinner. If someone does the planning and cooking he’ll probably meet his sodium requirements. I considered doing the later for myself for awhile when l was really sick and struggling to cook appropriate food for myself for about 2 years a few years ago. Ultimately I was able to devise another way to handle that. (I live alone and am the last person living in my family.)

I’ve been advised not to drink water with added electrolytes and stuff like Gatorade. This advice was given when I was still in Stage IIIb. It’s so easy to get our electrolytes out of whack when our kidneys aren’t working well. At that point my electrolytes were still all in the normal range. I had no dietary restrictions like lower potassium, etc. However, I was still advised not to drink those types of drinks.

When does heswehis doctor again? The good news is that he may see an improvement in his renal panel data as he gets under treatment with a nephrologist.

Jayhawker

[Hb19 in reply to Jayhawker]

I actually drove to his house since our last convo. Advice nurse said to go to the ER, cuz is BP is 91/60 & 94/61. He of course is being a stubborn brat and says he won't listen to anyone other than his doctor. He can't get warm, which I see is a symptom as well. Heis 66. I am not sure he would want delivery although I will set it up when the time is right. I will make sure to take those drinks away, he hasn't drank much water since I was here for Christmas either which worries me. I counted the bottles before I left to keep track. His stomach is starting to grow more again, so I am sure another paracentesis will be needed. His primary has known about his kidneys but just monitored them, clearly not close enough since his eGFR has been dropping significantly for a few months now, the last being the most dramatic.

[Jayhawker in reply to Hb19]

That’s where my BP was running when I had lots of dizziness. I also experienced sudden plummets in my BP to as low as 62/38. And, no, I never passed out amazingly! But it was pretty miserable.

I’m 66 right now too, I was 62 when I seriously considered getting meals on wheels delivered if they would qualify me. I also felt cold all the time when my anemia was untreated. At that point my hemoglobin was 5.6. 12.0 is the bottom of the average range. I really had difficulty even sitting up in bed when my anemia was that bad. I was literally winded just moving from lying to sitting in bed. I’d drag myself to the couch where I’d lie down again. Then I’d drag myself back to bed at about 9pm at night. It was pretty bad. And I definitely wasn’t hungry and so wasn’t eating much.

Once the anemia was under appropriate treatment I was no longer cold all the time. I was no longer winded. And I automatically began getting out of bed every day.

When my renal panel suddenly plummeted from the normal range to low Stage IV, ie, from eGFR of 95 to eGFR of 16. I also had severe anemia develop as a side effect of my renal function. I was definitely experiencing “foggy brain.” Since I live alone I’m not sure whether I was irritable or not. But I was definitely very lethargic. I honestly felt like I’d been run over by a semi truck.

I had had a severe gall bladder attack. It was 5 weeks before they decided to pull my gall bladder out. During that 5 week time period I was unable to eat or drink anything without vomiting. I lost a lot of weight and also became severely dehydrated. It was so bad that they ultimately put me in the hospital and started IVs. I was dangerously under weight and extremely dehydrated.

Finally they pulled my gall bladder and a host of gall stones out. I certainly felt much better. But my renal function had plummeted to eGFR of 16. I saw a nephrologist. He initially thought he would be able to rebound my renal function. But he only got it back to high Stage IV, eGFR 29. He then focused on trying to stabilize my renal function. It was stable for close to three years but then it plummeted again; this time into Stage V renal failure with an eGFR of 10. It rebounded to low Stage IV and then stabilized for another few years. Then the last plummet occurred. It plummeted to an eGFR of 8. It only rebounded to an eGFR of 12. It stayed at 12 for about a year. Then there was a modest improvement to 14. This past summer I shifted to a modified vegetarian diet. It has shown another modest improvement with my eGFR now coming in between 16 and 17, low Stage IV.

Every time my renal function has plummeted I have been severely dehydrated either due to the gall bladder attack or due to severe illness. Obviously I am extremely focused on staying hydrated, especially when I have a cold, now.

I share all of this to highlight the importance of your father staying hydrated and to underscore the importance of getting him to a nephrologist as soon as possible. It may be possible to salvage a fair amount of his renal function now but that may not be possible later. And he really may not be feeling well enough to advocate for himself. This is aside from what he may be experiencing due to all the losses he’s experienced recently.

It’s obvious that the severe dehydration I experienced during the gall bladder attack was a major problem for my kidneys. I’d likely have a lot more renal function today had I not experienced that for 5 continuous weeks. Had I seen a nephrologist while that was going on I suspicion the nephrologist would have gotten a treatment plan in place that would have addressed that severe dehydration. The continuous low BP related to the dehydration was clearly not good for my kidneys. My PCP just didn’t focus on my kidneys as all of that was unfolding, unfortunately.

So I’d strongly suggest that you get a referral to a nephrologist ASAP.

Jayhawker

[Sammi_n_Munk in reply to Hb19]

Hello again Hb19. Hope you don’t mind, but I did a little research online with regard to your father’s cirrhosis issue, and, you may already even know this, but one website actually suggested drinking more water, which is a given, I suppose, but also, lemon juice is apparently supposed to be helpful in damage restoration, should there be any damage at all. It also suggested stopping any alcoholic beverages altogether, as well as a healthy diet. It named 6 items to steer clear of, and these include: any red meat; white bread; fried foods; alcohol (already mentioned); any highly concentrated sugary products; and any fatty foods in general. It’s easy to read these little tidbits of advice, but putting them into action has always usually been my problem. I certainly hope your father can put it into action better than I ever have!

Nevertheless, I hope this helps you. I understand it can be frustrating when dealing with an ill parent. They do almost become a little bratty, don’t they? And perhaps even more so after suffering such great loss as your father has. I really am sorry for all of the distress too, that all of this has put upon you. Do continue to keep us posted on his progress. All the best to you.

[steve680 in reply to Jayhawker]

"I’ve been advised not to drink water with added electrolytes and stuff like Gatorade. " Gatorade is unhealthy and was only intended for young people to drink when (if) they become severely dehydrated. One of the things that makes it unhealthy is that it has THREE types of sugar in it. It seems it's especially bad for some with kidney problems:

google.com/url?sa=t&rct=j&q...

"In addition to this, Gatorade can also have adverse affects on the kidneys. There is sodium added to these sports drinks that has to pass through the kidneys before they are excreted with the rest of the fluids. When the body has excess sodium that the kidneys must absorb and process, the body expels calcium. This calcium, in turn, leads to kidney stones and damages the kidneys. Drinking excess sports drinks like Gatorade increases the likelihood of this happening."

...

"Gatorade was originally produced for a college football team made up of athletes working at an extremely intense level of physical fitness. This drink was not meant to be consumed regularly without work out. Even when performing physical activities, a supplemental drink such as Gatorade is not needed unless an athlete is doing a highly intense workout, in hot weather, for more than 60-90 minutes."

...

"During a normal workout your body is losing water so the best thing to replenish your body is to consume more water. It is as simple as that. As for food consumption before a workout, complex carbs such as a piece of whole wheat toast smeared with protein packed peanut butter is a perfect snack. After a game or workout, a banana can replace any lost potassium and salted pretzels provide sodium and carbs. It is important for parents to teach their children from a young age that they don't need these special sports drinks and supplements all the time. Plain old water and naturally occurring carbs protein, potassium, and sodium are the better choices."

[Jayhawker in reply to steve680]

Exactly

[Sammi_n_Munk in reply to Hb19]

Hello again! I thank you for your well wishes. It is much appreciated. Jay hawker has some really good advice. I too suffered from some anemia issues early on in my initial diagnosis. These days, it’s some fluid retention, dizziness / lightheadedness (and yes, Jayhawker is right, standing up slowly does help a lot), but there’s also muscle and joint pain as well. Don’t know if your father has experienced any of these, but certainly visiting with a nephrologist or even his family physician, will better help him to understand what’s behind the dizzy spells and hopefully bring it under control. Just as Jayhawker said, drinking water and maintaining good hydration levels is always beneficial. That’s actually good advice for anyone. You keep me posted, and I’ll keep my fingers crossed! God bless.

[WYOAnne NKF Ambassador in reply to Sammi_n_Munk]

Yes definitely monitor his fluid intake. eGFR is definitely effected by a person's hydration. GFR has to do with filtration rate in your kidneys.

Especially if he is light-headed that is a sure give away that he is NOT drinking enough water.

Dehydration effects your BP too, that is why he is experiencing the light-headedness.

I agree too that he should see his nephrologist. There could be some underlying cause for his not drinking enough fluids.

It has been my experience that it is all tied together.

[Sammi_n_Munk in reply to WYOAnne]

Hello WYOAnne! Yes, I too believe that it is all tied together. It’s all about attempting to balance hydration and maintaining electrolytes as evenly as one can with kidney issues. It’s never easy though, is it? Oh well. One thing we can bet on too is dehydration is the worst thing for the kidneys. I discovered that one the hard way also. All the best to everyone here.

[Jayhawker in reply to WYOAnne]

Definitely! It’s taken me some time to get a handle on the hydration issue for myself; it can be tricky. But it’s well worth figuring it out.

Jayhawker

[FlowerPreciousLover]

Hi, Hb19, Your dad is so fortunate to have your help. I know how difficult it can be caring "long distance" for an aging parent and sometimes how difficult it can be for an independent parent to listen or accept help from their adult children.

Diagnosed with orthostatic hypotension, which is a condition causing sudden, large drops in b.p., I learned these two tips which really help my lightheadedness when standing and a chair or seat isn't nearby: standing or sitting: simply make fists with each hand and squeeze; if standing, cross one leg over the other... like a closed scissor and squeeze the leg and hip muscles; then reverse the crossed leg and repeat. Doing these has gotten me to a sitting place more than once.

Please give yourself permission to carve out some "me" time for yourself as well because caregiving can be all consuming. You are a very valuable player on the team who needs to stay well and fit too.

[Lilly234]

I want to drop my GFR level but find it very hard to do. I go to dialysis 3 times a weeks and have always wondered if I really need it. I was Stage 3 for many years and then had to move to another county because of losing my job and not being able to afford housing anymore where I grew up. I went down to Stage 5, then up to Stage 4 then back down to Stage 5. I think lab tests fluctuate depending on the county and they are not always correct. I have tried to get into my dialysis account with no luck. I think people on dialysis should be told what their numbers are every time they go in. I have been sick, now, because of a cold/flu symptoms. I don't think dialysis is helping me. I don't think dialysis is the answer. I am so confused as to what I am going through. Good luck to you and your father. I hope for the best for both of you.