Kidney disease progression

[SWhite74]

I've got IgA nephropothy/Bergers disease, diagnosed about 7+ years ago. For a number of years my creatinine was fairly stable 1.2-1.5. During the 2nd half of 2011 it rose to 1.9-2.2. We did another biopsy and spent this last summer trying both short term high dose prednisone and low dose long term prednisone with no real change in function. I've been stable at 1.9-2.2 for the last year during the prednisone regimen. My nephrologist, who I really like, has been wanting to get more aggressive with treatment, i.e. the prednisone, and in February he's sending me up the Mayo Clinic for more diagnostics. Through all of this I never really thought about where my overall kidney function is at currently.

This morning I happened to wonder what 'stage' or progression I was at. In the past I didn't really care because my function was pretty good and the stage was something I couldn't do anything about. So I find a CKD function calculator and it comes up with 38%. This was kind of a shock having spent years at what seems to be mid stage 2 and now at the bottom end of stage 3.

I should be talking to my neph today or tomorrow and I'll confirm this. But for the moment I'm sort of stuck with this speculation and no one I can "talk" to about it. I'll tell my wife tonight, but I can't/won't tell the rest of my family until after the holidays, as I don't want to spoil their holidays. Not exactly the type of information I want to put on Facebook 11 days before Christmas.

So this is really me just 'venting' safely with to my family finding out yet. Thanks.

[nanbridg]

Welcome to this site this is a BIG boat with all types of kidney stages and problems, I was interested to read you have Buergers disease my husband was diagnosed with this when he was 21 he is now 68 luckily no kidney problems his creation is always low . I on the other hand have severe kidney disease currently at 28 GFR I watch my diet and at this time my doc feels I'm stable . P.S. I hope you are not a smoker as that is a real danger to blood vessels especially the fine ones in the blood vessels. Hope your Holidays are peaceful.

[SWhite74]

That's the other thing that is kind of a drag is that I make most of the right choices. Pretty strict diet, don't drink or smoke. Diet has been hard at times because I have a predisposition to medication induced high potassium. So many foods and medications are potassium problems for me. I so crave french fries, LOL. Exercise is the only thing I don't really do much of, but until last year I've been in a very healthy weight range. The prednisone put on 20 lbs but I'm getting myself back towards my old normal diet because the pred left me starving constantly.

It was a real kick in the gonads this year as well because after staying home with the kids for 7 years I was supposed to go back to work this fall. But the side effects from the prednisone were bad enough that I couldn't see myself even managing an interview. And now, more than likely, I'll be going on another 4-6 month medication regimen. I won't start that until after I go to Mayo in Feb and I refuse to start it before mid June. My wife and I are taking a cruise to Alaska for our 10th anniversary in June, which will be our first vacation since our honeymoon. So basically it leaves me stuck at home for another year because, even aside from the potassium issue, I seem to be the poster child for less common side effects from medication. Have been in the ER 3 times this year because of side effects that looked like serious immediate health issues. Also it's pretty silly that most all of the staff at the hospital where I get my blood work done no me by name and I get confused looks from older people who have to wonder what's wrong with me such that I'm so well known but look young and healthy.

LOL more complaining, but it feels good to get it out.

[SWhite74]

Is it wrong to not want to end up dialysis? I've always stayed pretty informed about the 'right now' of my situation; diet, meds, side effects, etc. But not until yesterday did I start looking into my future. I really don't like what it looks like. I've got an amazing wife and 2 awesome daughters, but I don't want any of their lives turning becoming my caregiver. For them to sacrifice having a life just to keep me hanging on.

I don't want to live forever, afraid to die. I'm okay with having a pretty good run, and when my time is up, then so be it. And yes all these procedures can greatly extend life, but at what cost?

Don't get me wrong. I'm not depressed or suicidal. I just think quality of life is worth a lot more than quantity.

[DevonTexas]

SWhite74, Excellent question and one that I ask myself often. It's a good question that everyone has to answer for themselves because it helps justify the life style change we've encountered. I'm at an advanced age and had to measure the amount of time I'd typically have left against the time I have left now that I am in kidney failure. My decision was to stick with it. Forty years ago, we didn't have that choice but with modern technology, we can easily go for two or three decades where the only inconvenience is the three days a week we dialyze for three or four hours. That means spending 12-16 hours a week in dialysis gives us the other 150 hours a week to enjoy life. I focus on the benefits of dialysis rather than the downside.

If I get bad enough that I become a burden on my family, I will seek out assisted living or a nursing home so to avoid that.

Devon

[SWhite74]

Talked with my wife and my basic 'issue' is that, other than taking care of the kids until they are out of the house, I really don't have any long term life goals. My wife and I have an awesome relationship, we have everything we 'need', and I've done most things in life that I really wanted to accomplish. What's left?

Perhaps part of the problem is that several of my medications have destroyed my ability to make and retrieve new general memories. That combined with the antidepressant that keeps my migraines in check, I really don't have anything that I see is worth dragging myself through a future of needing a caregiver. I mean no matter how this turns out, I'll never be able to eat french fries when ever I want. And honestly, I really miss that. We haven't had a potato in my house for at least 5 years. LOL

And maybe part of the problem is that I'm in the middle of my life, nearly 40. My wife works full time, and I'm stuck at home. I have lots of time to think. Way too much time to think. I feel if I had a job then it would be different,. But until I get a new regimen, and my meds sorted out I feel I can't even think about trying to apply for a job. Limping, from gout related symptoms, in and out a job interview with a pounding headache doesn't sound like a good way to make a first impression. Granted, I feel as thought I'm wallowing in self pity a bit as I type this. But then again it's only this year I got my chronic daily migraines in check, only to be replaced with all if the 'fun' prednisone has given me. Guess this is somewhere between venting and maybe having a fresh set of eyes give me a perspective I haven't seen yet. At least I can be open here. I can tolerate/handle my life and how I feel about it, my mom/brother/etc has a little more trouble with that. If they read this stuff they would constantly want to know how they could make it better. And as nice as that sounds, it's not what I want or need. But it's a bit cathartic for me to express here.

It's ironic that 20+ years ago, before I was diagnosed, I always said that I never wanted to get so dependent on medications, that if I went camping and forgot them for the weekend, that I would be in life threatening danger. I have yet to cross that line. But with the recent actualization of where my GFR is currently that potential is much nearer that I ever thought it would be. Regardless I'm thankful for the opportunity the open space here on this page offers.

[BigPapi]

SWhite74,

I ask myself the same. I',m Stage 3; just diagnoised this summer, 54 years old, feel like 34 I don't expect to live another 54 years, but I'm not ready to go on dialysis and not ready to die either. I'm hoping to get another 25-30 years off dialysis and take these suckers to the grave with me, but nothing is promised.

Scared and confused.

[BigPapi]

how long did you have before dialysis?

[SWhite74]

LOL, I'm about to be 39 and I feel more like 69. But on the bright side I just saw my nephrologist and in his opinion my GFR is closer to upper sixties rather than the upper thirties the online calculator indicates. So for now, that's a bullet I've dodged. And the biggest weight off my back is that I don't have to tell my family I've gotten worse. Because as much as they want to help, it just makes me more stressed.

BigPapi, was the dialysis question aimed at me? I'm not on on dialysis, I was just concerned with what I thought was a dramatic drop in function that dialysis was a lot sooner than I might have expected.

[Matheaford]

@bigpapi - you have stage 3, so you have time. You can do a lot to change and slow the progression of your disease, and you don't have to just "wait" till you get to dialysis. You can start on a renal diet now, you can learn more about the medications you are taking and how they affect your kidneys, you can talk to the nephrologist about other options to slow your disease process. It's not a waiting game, you can be very active in this process and you can slow it down. If you are 54, you have a lot of life left!

@swhite74 - great news! it's great to have helpers but they don't always know the best way to help you.

All - have a Very Happy Holiday!

[M3Riddler]

I've got IgA nephropothy/Bergers disease, diagnosed about 7+ years ago. For a number of years my creatinine was fairly stable 1.2-1.5. During the 2nd half of 2011 it rose to 1.9-2.2. We did another biopsy and spent this last summer trying both short term high dose prednisone and low dose long term prednisone with no real change in function. I've been stable at 1.9-2.2 for the last year during the prednisone regimen. My nephrologist, who I really like, has been wanting to get more aggressive with treatment, i.e. the prednisone, and in February he's sending me up the Mayo Clinic for more diagnostics. Through all of this I never really thought about where my overall kidney function is at currently.

This morning I happened to wonder what 'stage' or progression I was at. In the past I didn't really care because my function was pretty good and the stage was something I couldn't do anything about. So I find a CKD function calculator and it comes up with 38%. This was kind of a shock having spent years at what seems to be mid stage 2 and now at the bottom end of stage 3.

I should be talking to my neph today or tomorrow and I'll confirm this. But for the moment I'm sort of stuck with this speculation and no one I can "talk" to about it. I'll tell my wife tonight, but I can't/won't tell the rest of my family until after the holidays, as I don't want to spoil their holidays. Not exactly the type of information I want to put on Facebook 11 days before Christmas.

So this is really me just 'venting' safely with to my family finding out yet. Thanks.

SWhite,

There are many factors that contribute to the progression of kidney diesease. The main factor would be the bergers disease for you. The progression can be controlled to a degree with medication. Some can stay in Stage 3 for many years. You will want to speak with your nephrologists to see if there is anything you can do medicine wise as well as diet wise to slow the progression. Some people can be in stage 3 for 10 years or more.. again it all depends on what else is going on....
the most important thing you can do is educate yourself about why your kidneys failed. And if it comes down to it, educate yourself about dialysis as well. There are many modalities that can be chosen from.... You dont want to go into it without knowing about them.... Its something that non of us want, but at some point it may become reality. Better to be prepared than not... I certainly wish you well and hope you never have to experience dialysis... but even if you do, its not the end... you can live a great life on dialysis... I have been doing so for over 20 years..

[DevonTexas]

Matheaford, excellent, excellent advice!

Devon

[dac0214]

I'm 51, and have hereditary polycystic kidneys, inherited from my mother. I've known for at least 20 years that my kidneys were going to eventually fail. As far as 'progression' is concerned, those stages that doctors put you into are really more for their benefit than yours. I'm somewhere in stage 4, although, just WHERE in that stage is a murky question. My blood samples suggested that I'm nearly in stage 5, yet a 24 hour urine output test suggested more like barely stage 4. Then, at my last nephrologist visit, my GFR had improved to a level better than it had been in more than a year (but potassium was a bit high), so it looks like I'm STILL at least 1 year away from dialysis. I know that it won't last forever, but I'm going to try to remain pre-dialysis for as long as possible.

[Matheaford]

@devontexas - thank you.

@dac0214 - it's not always in your control, but you can control as much of it as you can. Many people don't take into account the emotional toll that having kidney disease does to a person because of the way our system kind of "leaves" you alone unless you are proactive about it until you get to dialysis. Keep working at it, and I hope you can delay it as much as possible. But for some, there is a point of dialysis being the best option because of the way you feel, and that is ok as well. Dialysis has a lot of options too!

[MEL0810]

I also ask myself these questions. I am age 62, have CKD Stage 4 (21% GFR) and I am not sure I want to live my later life in Dialysis or trying to find a kidney donor (unlikely). I am not married and am childless and while I am employed FT at present, I am not sure how long that will last. I have to work at least five more years to get vested for retirement payments to apply.
I do have a man friend but since we are not married, he can not get FAMPERS leave to help me, if I should need care.
I am NOT suicidal but it hanging around on machines with no one to help me and probably only the possibility of a rotten low income assisted lving center as an alternative is not appealing, either. I was an only child and have no other close relations to call on.