Time for another update thread!

[Blackpaw]

Wakingdreams, gorgeous kitty!

Mif, did you look?

Kribbie, i so sorry about your diagnosis, my SO was diagnosed last year with CKD. He's holding steady at the moment (15% function) but will need a transplant at some point. What kind do you have (only if you dont mind me asking of course)? Good on you for making positive changes in your life, isnt it terrible that it takes this kind of thing to make us do that?

Sending lots of dust for your health

Thanks so much for the kind words and dust, ladies.

@Blackpaw: I'm so sorry to hear about your SO. 15% is pretty close to transplant stage. Is he on dialysis? It's a horrible disease. Mine is at stage 2, so I don't have to think about dialysis yet. However, they cannot pinpoint the cause. I have struggled with bilateral kidney stones for about 10 years, and pass at least 1 or 2 a month. Unfortunately none of the specialists I have visited during those 10 years have been able to figure out why I get these stones, so they haven't been able to prevent them. As a result, the disease progresses.

Hi Kribbie thats so terrible that they cant pinpoint what it is, have they done a biopsy? my SO had one basically to confirm their diagnosis (IgA Nephropathy). He's not on dialysis because they dont bother with it until you're symptomatic, which for him would probably be 10% and under (he's gone to 12 before and no major symptoms still). Its lucky that otherwise he's young and healthy so with diet we've been able to keep him steady at 15% since he was diagnosed a year ago. I really hope he's one of the lucky ones who'll stay there for ten years before he needs the transplant.

Its 'good' that you're at stage 2, there's so much they can do for you there, steroids and what not. I wish my SOs had been caught earlier (they found it at 12%)...

I hope they can work it out, it must be terribly painful having them so frequently.

Are you on any kind of restrictive diet? i obviously dont follow it like my SO does but can i tell you i miss potassium a WHOLE lot

 

[DuckLovingVegan]

Well I have been having a bad waiting time as of late. Maybe it's because his younger sister's wedding was last week. I don't know I'm truly happy for her I was one of her bridesmaids and my SO a groomsman. I told I just want to move on to the next chapter of our lives. He told me the reason why we haven't is because I don't have a job yet. I already knew this I finally graduate this December I just don't know how long it'll take me to find a job afterwards. We have continued to talk about our one day wedding and possibly increasing the budget for the the e-ring. I'm just getting ready for his birthday next month he turns the big 30! I want to go all out but on a limited budget lol. I just want to have fun and help him celebrate his birthday other than that nothing else to report. **********DUST******* for all the other LIW hope you get engaged soon!

 

[Nomsdeplume]

Wakingdreams, gorgeous kitty!

Mif, did you look?

Kribbie, i so sorry about your diagnosis, my SO was diagnosed last year with CKD. He's holding steady at the moment (15% function) but will need a transplant at some point. What kind do you have (only if you dont mind me asking of course)? Good on you for making positive changes in your life, isnt it terrible that it takes this kind of thing to make us do that?

Sending lots of dust for your health

Thanks so much for the kind words and dust, ladies.

@Blackpaw: I'm so sorry to hear about your SO. 15% is pretty close to transplant stage. Is he on dialysis? It's a horrible disease. Mine is at stage 2, so I don't have to think about dialysis yet. However, they cannot pinpoint the cause. I have struggled with bilateral kidney stones for about 10 years, and pass at least 1 or 2 a month. Unfortunately none of the specialists I have visited during those 10 years have been able to figure out why I get these stones, so they haven't been able to prevent them. As a result, the disease progresses.

Hi Kribbie thats so terrible that they cant pinpoint what it is, have they done a biopsy? my SO had one basically to confirm their diagnosis (IgA Nephropathy). He's not on dialysis because they dont bother with it until you're symptomatic, which for him would probably be 10% and under (he's gone to 12 before and no major symptoms still). Its lucky that otherwise he's young and healthy so with diet we've been able to keep him steady at 15% since he was diagnosed a year ago. I really hope he's one of the lucky ones who'll stay there for ten years before he needs the transplant.

Its 'good' that you're at stage 2, there's so much they can do for you there, steroids and what not. I wish my SOs had been caught earlier (they found it at 12%)...

I hope they can work it out, it must be terribly painful having them so frequently.

Are you on any kind of restrictive diet? i obviously dont follow it like my SO does but can i tell you i miss potassium a WHOLE lot

They haven't done a biopsy, and I refuse to allow it because I have seen a few botched ones and I am NOT going to risk that. Luckily my nephrologist doesn't think it's a good idea in my case either. It's good to hear that your SO is otherwise healthy, I suppose the positive side of this is that it can be managed better than many other chronic diseases to a certain degree. Plus with all the medical progress it's not a death sentence. Pretty soon we will be able to print organs for transplants. It's amazing.
The diet! It is HORRIBLE. I miss chocolate. And as someone who used to enjoy a high protein, low carb diet, it is a mission to only eat a small portion of protein a day. People often ask "so what can you eat?" because it just seems like I can't eat half of the stuff on the menu whenever we go out. My medication makes me so bloated too, and I feel really unattractive at the moment.

 

[Blackpaw]

Wakingdreams, gorgeous kitty!

Mif, did you look?

Kribbie, i so sorry about your diagnosis, my SO was diagnosed last year with CKD. He's holding steady at the moment (15% function) but will need a transplant at some point. What kind do you have (only if you dont mind me asking of course)? Good on you for making positive changes in your life, isnt it terrible that it takes this kind of thing to make us do that?

Sending lots of dust for your health

Thanks so much for the kind words and dust, ladies.

@Blackpaw: I'm so sorry to hear about your SO. 15% is pretty close to transplant stage. Is he on dialysis? It's a horrible disease. Mine is at stage 2, so I don't have to think about dialysis yet. However, they cannot pinpoint the cause. I have struggled with bilateral kidney stones for about 10 years, and pass at least 1 or 2 a month. Unfortunately none of the specialists I have visited during those 10 years have been able to figure out why I get these stones, so they haven't been able to prevent them. As a result, the disease progresses.

Hi Kribbie thats so terrible that they cant pinpoint what it is, have they done a biopsy? my SO had one basically to confirm their diagnosis (IgA Nephropathy). He's not on dialysis because they dont bother with it until you're symptomatic, which for him would probably be 10% and under (he's gone to 12 before and no major symptoms still). Its lucky that otherwise he's young and healthy so with diet we've been able to keep him steady at 15% since he was diagnosed a year ago. I really hope he's one of the lucky ones who'll stay there for ten years before he needs the transplant.

Its 'good' that you're at stage 2, there's so much they can do for you there, steroids and what not. I wish my SOs had been caught earlier (they found it at 12%)...

I hope they can work it out, it must be terribly painful having them so frequently.

Are you on any kind of restrictive diet? i obviously dont follow it like my SO does but can i tell you i miss potassium a WHOLE lot

They haven't done a biopsy, and I refuse to allow it because I have seen a few botched ones and I am NOT going to risk that. Luckily my nephrologist doesn't think it's a good idea in my case either. It's good to hear that your SO is otherwise healthy, I suppose the positive side of this is that it can be managed better than many other chronic diseases to a certain degree. Plus with all the medical progress it's not a death sentence. Pretty soon we will be able to print organs for transplants. It's amazing.
The diet! It is HORRIBLE. I miss chocolate. And as someone who used to enjoy a high protein, low carb diet, it is a mission to only eat a small portion of protein a day. People often ask "so what can you eat?" because it just seems like I can't eat half of the stuff on the menu whenever we go out. My medication makes me so bloated too, and I feel really unattractive at the moment.

Oh kribbie im sorry i know how hard it is for my SO sometimes with the diet thing. We've certainly gotten used to it but i know sometimes he just wants to get a pizza or chinese (especially chinese!) takeout and we cant do it.

It gets better though, as you learn what your kidneys 'like' and 'dont like'...what kind of diet are you on? low protein and im guessing low sodium and potassium (because you said chocolate, my SO misses it too, he downs skittles something shocking now)? He's on low sodium, potassium and phosphates...its just the potassium thats the bother really. I mean salt is bad, especially when you eat out, but its easier to make up for a high-salt meal than for a high-potassium one. Oh and do you know what i think is stupid about the diet - he needs to have carbs, yay that means he can eat pasta, but tell me what the feck do you put on pasta when dairy (cream) and tomatoes are too high in potassium so annoying!!!

 

[Nomsdeplume]

Wakingdreams, gorgeous kitty!

Mif, did you look?

Kribbie, i so sorry about your diagnosis, my SO was diagnosed last year with CKD. He's holding steady at the moment (15% function) but will need a transplant at some point. What kind do you have (only if you dont mind me asking of course)? Good on you for making positive changes in your life, isnt it terrible that it takes this kind of thing to make us do that?

Sending lots of dust for your health

Thanks so much for the kind words and dust, ladies.

@Blackpaw: I'm so sorry to hear about your SO. 15% is pretty close to transplant stage. Is he on dialysis? It's a horrible disease. Mine is at stage 2, so I don't have to think about dialysis yet. However, they cannot pinpoint the cause. I have struggled with bilateral kidney stones for about 10 years, and pass at least 1 or 2 a month. Unfortunately none of the specialists I have visited during those 10 years have been able to figure out why I get these stones, so they haven't been able to prevent them. As a result, the disease progresses.

Hi Kribbie thats so terrible that they cant pinpoint what it is, have they done a biopsy? my SO had one basically to confirm their diagnosis (IgA Nephropathy). He's not on dialysis because they dont bother with it until you're symptomatic, which for him would probably be 10% and under (he's gone to 12 before and no major symptoms still). Its lucky that otherwise he's young and healthy so with diet we've been able to keep him steady at 15% since he was diagnosed a year ago. I really hope he's one of the lucky ones who'll stay there for ten years before he needs the transplant.

Its 'good' that you're at stage 2, there's so much they can do for you there, steroids and what not. I wish my SOs had been caught earlier (they found it at 12%)...

I hope they can work it out, it must be terribly painful having them so frequently.

Are you on any kind of restrictive diet? i obviously dont follow it like my SO does but can i tell you i miss potassium a WHOLE lot

They haven't done a biopsy, and I refuse to allow it because I have seen a few botched ones and I am NOT going to risk that. Luckily my nephrologist doesn't think it's a good idea in my case either. It's good to hear that your SO is otherwise healthy, I suppose the positive side of this is that it can be managed better than many other chronic diseases to a certain degree. Plus with all the medical progress it's not a death sentence. Pretty soon we will be able to print organs for transplants. It's amazing.
The diet! It is HORRIBLE. I miss chocolate. And as someone who used to enjoy a high protein, low carb diet, it is a mission to only eat a small portion of protein a day. People often ask "so what can you eat?" because it just seems like I can't eat half of the stuff on the menu whenever we go out. My medication makes me so bloated too, and I feel really unattractive at the moment.

Oh kribbie im sorry i know how hard it is for my SO sometimes with the diet thing. We've certainly gotten used to it but i know sometimes he just wants to get a pizza or chinese (especially chinese!) takeout and we cant do it.

It gets better though, as you learn what your kidneys 'like' and 'dont like'...what kind of diet are you on? low protein and im guessing low sodium and potassium (because you said chocolate, my SO misses it too, he downs skittles something shocking now)? He's on low sodium, potassium and phosphates...its just the potassium thats the bother really. I mean salt is bad, especially when you eat out, but its easier to make up for a high-salt meal than for a high-potassium one. Oh and do you know what i think is stupid about the diet - he needs to have carbs, yay that means he can eat pasta, but tell me what the feck do you put on pasta when dairy (cream) and tomatoes are too high in potassium so annoying!!!

It is so annoying. My diet is low sugar, sodium, potassium, oxalate (thus: no chocolate ) and animal protein. I also take calcium supplements (strange but true) to help prevent the bone disease that is common with CKD. I have pasta with a tiny bit of pesto these days and I only eat pasta about once a month. I've started turning to a lot of vegan, organic foods. It seems to be a safer option in many cases.

 

[Blackpaw]

Oh kribbie ouch! what can you eat!?!! SO's isnt looking so bad now, he eats candy at least. No chocolate for him either, too high in potassium. But we've found we can manage with him having 'treats' i guess by balancing that in breakfast and lunch. Ideally his meals are 2 portions protein, 2 carbs and 1 veggies. Which i think accounts for me putting on weight since his diagnosis as i eat the same, and simple carbs at that!

do you have monthly tests? hopefully in time if you can see your numbers month over month (or even better bi-weekly) then you can see what effects it and what doesnt. SO eats more varied food now than when we first started because we know what he can handle...

 

[ZKS]

I have just joined and although I am new I sort of have an update.

My boyfriend has said I should stop worrying about it because it will happen and how to I know he isn't thinking about it cause he just might be.

So difficult to stop yourself from thinking about 'that' moment

Hope everyone here doesn't stay an LIW for too much longer