Anyone familiar with Stage 3 Kidney Disease?

[NorthernBeth]

My dad has just been diagnosed and I am just trying to get an idea of what to expect going forward.  He is having surgery today for a kidney stone that has been causing problems as well.  His kidney may recover somewhat, but they will still be functioning poorly.  I am very far away and not the one talking to the doctors.  My brothers are.... one is wildly optimistic, and one is so concise, it is hard to get details. 

 

[WildflowerMom]

Eta: incorrect info deleted.  Thanks @Pawz4me!  
 

My dad's gp is trying to get him off some of his meds because he thinks they're speeding up the kidney disease.     

Edited April 7, 2023 by WildflowerMom

[Pawz4me]

13 minutes ago, WildflowerMom said:

I believe my dad has stage 3, but it's confusing because the scale goes backward I think.  4 down to 1.   Stage 1 is dialysis, I believe.   Stage 3 is better, so I haven't really worried as much as I would be if dialysis were involved.    My dad's gp is trying to get him off some of his meds because he thinks they're speeding up the kidney disease.     

That isn't correct.

Here's a chart explaining the stages.

[NorthernBeth]

hmm... might be they use a different scale in different countries?  I was told stage 4 is dialysis, so that would definitely be worse than where he is now.   His potassium is extremely high.  His creatinine is above 400 when normal is below 100 so I am told this means his kidneys aren't really filtering anything.   They seem to be pinning a lot of hope that getting the kidney stone out will improve things.   I am concerned that my brothers seem to be under the impression that he will then be back to "normal"  , but I don't think that is the case.  He is 85. He seems to have declined dramatically from when I saw him last year, and I don't really know how much is old age and how much is the kidney issue.  

 

Edited April 7, 2023 by NorthernBeth

[NorthernBeth]

2 minutes ago, Pawz4me said:

That isn't correct.

Here's a chart explaining the stages.

thank-you that is extremely helpful.   I know his hemoglobbin was down to like 63, when it is supposed to be at least 125.  He did some routine blood work and got a call from his doctor to get over to emergency right away to get a blood transfusion.   They have been doing blood transfusions for 3 days.   His hemoglobin is only up to 85.  They have been putting around 4 units of blood  a day into him.  

[WildflowerMom]

28 minutes ago, Pawz4me said:

That isn't correct.

Here's a chart explaining the stages.

Huh, my dad's is worse than I thought.   He may actually be a 4 or right at it, I think.    Thank you for that link, @Pawz4me.   
Eta: He's 3b.  
 

Edited April 7, 2023 by WildflowerMom

[prairiewindmomma]

Expect recommendations of diet change, a review and possible change of medications, and close monitoring via blood work and visits. 
 

Mediterranean diet (low meat, low sugar, low sodium, lots of veggies), regular exercise, lots of water/no alcohol, and other general healthy lifestyle things are pretty typical recommendations….whether that is enough change is dependent on what is triggering the damage.

[Pawz4me]

I'd think there should also be a review of any/all current medications, as well as guidance on OTC medications to avoid. Any medication that clears through the kidneys can add to the burden of struggling kidneys or potentially cause further damage. Link #1 and Link #2

[NorthernBeth]

1 hour ago, Pawz4me said:

I'd think there should also be a review of any/all current medications, as well as guidance on OTC medications to avoid. Any medication that clears through the kidneys can add to the burden of struggling kidneys or potentially cause further damage. Link #1 and Link #2

Really helpful links thank-you.   This just came out of nowhere for us, so just trying to get up to speed on what it all means.

 

[prairiewindmomma]

On the hyperkalemia thing—if this doesn’t resolve with the stone removal and medication change—there is a whole list of foods he will be told to limit or avoid until his labs improve: bananas, lentils, tomatoes, potatoes, apricots, milk, some squashes, chicken breasts, etc. 

Not every doctor is great about advising on this point. Some people will react more with some foods than others. But, there should be some awareness here. A lot of elderly will think, “eat healthier—ah, chicken and potatoes and bananas” and the answer is: “uh, not like that”. If his stone is oxalic based, spinach will go too. (Kale is ok.) Eating can get complicated quickly, so meal planning support may be welcome. 

 

[Pawz4me]

There is at least one medication, Lokelma, that can be used to reduce potassium levels. I don't know anything about it other than it exists.

[prairiewindmomma]

40 minutes ago, Pawz4me said:

There is at least one medication, Lokelma, that can be used to reduce potassium levels. I don't know anything about it other than it exists.

It binds potassium through sodium, among other things. 400mg of sodium per 5 mg of Lokelma. Lokelma = sodium zirconium cyclosilicate.

There are 4-5 potassium binding medications I know of… Veltassa, Kalexate, some low dose insulins, and some calcium based drug. 
 

 

 

[NorthernBeth]

I don't know the exact name, but yes, he is on a binding drug for the potassium.  

[City Mouse]

My mom is now stage 5 just shy of needing dialysis. She was at earlier stages for several years. My mom’s CKD is probably a direct result of poorly controlled diabetes and blood pressure. 

My understanding is that once the damage is done it can’t be undone. So current kidney function is a good as it will get. All the dietary changes and medication stuff is to keep the kidneys functioning at current levels as long as possible. Many medications used to treat other issues can have negative effects on the kidneys. Any time my mom needs a new medication, all the other doctors have the medication approved by the kidney doctor. 

[prairiewindmomma]

Acute kidney issues, particularly where the damage is mild, can be reversible. It’s not uncommon for people taking chemo drugs to have some kidney issues during treatment. It is why they do labs so very often.

Chronic disease is generally irreversible, and, City Mouse is correct on those points. 

[NorthernBeth]

My dad definitely has diabetes and does not control it well.  I imagine this may be part of the cause ( in addition to the kidney stone)  They explained it has : " he has an acute issue on top of a chronic issue".    Except no one seemed to be aware he was having chronic kidney issues.    They will do testing tomorrow and see how things look in terms of creatinine and hemoglobin.  At this point it has become clear that my dad is not doing well on his own   ( for other reasons not mentioned here)  and we are arranging for care at a nursing home/ assisted living place.  I am hopeful they will be helpful on the dietary front as they will be doing the cooking.  

I would feel better if I could actually see him.   I am hoping to be able to get down in a week or two when we usually have a break for spring hunting up here.  

[NorthernBeth]

apparently now updated to Stage 4 Kidney Disease with the possibility that he might have Myelodysplastic syndrome, which can  be treated with chemo.  He would need to get all the testing done for that, which would include bone marrow biopsy.  Does not need dialysis right now but apparently will in the future. 

Frustrating part is the doctor he saw this morning was reassuring my brother everything was fine, and his body just needs time to recover, and then the second doctor tells us all this.  

[prairiewindmomma]

Take some time for all of you to wrap your head around this news, but I will share, for me, that if I were of old age and at the point of needing nursing home care, I would not choose chemo and dialysis. The quality of life tradeoff would not be worth it. 
 

Everyone has a different cut off point, but dialysis is very hard on the body, and even beyond that, there is often only an average 2-3 years of life with dialysis once you hit certain criteria. I completely respect others who choose differently for themselves, but I urge everyone to really explore what end of life looks like, iykwim. 
 

I am sorry there wasn’t better news. Hugs! 

[sassenach]

1 hour ago, prairiewindmomma said:

Take some time for all of you to wrap your head around this news, but I will share, for me, that if I were of old age and at the point of needing nursing home care, I would not choose chemo and dialysis. The quality of life tradeoff would not be worth it. 
 

Everyone has a different cut off point, but dialysis is very hard on the body, and even beyond that, there is often only an average 2-3 years of life with dialysis once you hit certain criteria. I completely respect others who choose differently for themselves, but I urge everyone to really explore what end of life looks like, iykwim. 
 

I am sorry there wasn’t better news. Hugs! 

Yes, I think it's important to really consider the quality of life implications of chemo and dialysis. This might be a good time to meet with a palliative care doctor. They are helpful at guiding patients and families through these decisions. FIL chose not to pursue dialysis. He lived for about a year and a half after his stage 4 diagnosis, mostly focusing on blood pressure and blood sugar control. He was very happy with his quality of life up until maybe the last 2 months, after he had a stroke. 

OP, I'm really sorry that you are getting such mixed messages from the doctors. That's really frustrating and makes everything harder.

[NorthernBeth]

Yeah, I kind of wish the doctors seemed to talk more amongst themselves?  I know it is a big hospital though, and it is a holiday weekend, so people are taking different days off and thus not the same doctor handling things each day.   It now sounds like they are going to give him a drug that raises red blood cells but can take up to 6 weeks to take effect.  If they don't begin to see significant improvements, then they will begin looking at other possibilities such as Myelodysplastic syndrome.  But only if he indicates that he is willing to do chemo as otherwise there is not point in even pursuing a diagnosis.  He was well enough to have a conversation with last night though.  It was a relief to hear his voice and he sounded in good spirits. His voice sounds a little slurred though.  Apparently he had taken a walk around the hospital ward he was on ( with support) , and was quite pleased with himself.  He sounds like he is fine with going to the nursing home though, which is great as I thought he would have a bigger problem with that. 

My brothers are getting clothes and furniture set up for him at the nursing home and have extended their stay as they want to be there when he transfers from the hospital to the nursing home.  I am so incredibly grateful this all occurred when they happened to be in town.  My one brother lives way down in Charleston and only gets up once a year for a few days.   The fact the doctors found this out on the last day he was planning to be in town is just amazing to me!!