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 1 
 on: Yesterday at 07:39:22 PM 
Started by PrincessLeila - Last post by PrincessLeila
Just my 2 cents worth Max & Obsidianom. I was also lead to believe that those patients that retain the ability to produce urine are in a much better position than those who don't. Not sure of the exact reason though but it seems like commonsense to me.

As for praying for a miracle - yes, that is needed. But alongside that, just as importantly, is activism towards medical research to actually realise the miracle. An interpretation of the saying that "God helps those who help themselves" in a way. In terms of activism (or whatever you want to call it) - one person is useless to make a dent. There is only strength in numbers & very vocal numbers at that, that will start making a difference.

 2 
 on: Yesterday at 07:31:55 PM 
Started by PrincessLeila - Last post by PrincessLeila
Thanks BJ. It will lift, as long as I don't have to do labs anytime soon (my mood is good in between labs each 3 months or so - we could call it the Lab Depression Phenomenon!). My Neph just said in passing over the phone that significant blood loss can lead to dehydration in the body - he thinks I was a "bit dry" when tests were done last night in ER.


 3 
 on: Yesterday at 03:26:47 PM 
Started by PrincessLeila - Last post by BJ275
BJ, that's precisely how it feels like to me unfortunately. Today I carry the burden of those numbers & can feel the depression just rising. I might use that dedcription with my Nephs to illustrate how this feels like to me!

I know you do feel that way.  I wish the burden could be lifted. 


 4 
 on: Yesterday at 01:45:02 PM 
Started by PrincessLeila - Last post by PrincessLeila
BJ, that's precisely how it feels like to me unfortunately. Today I carry the burden of those numbers & can feel the depression just rising. I might use that dedcription with my Nephs to illustrate how this feels like to me!

 5 
 on: Yesterday at 11:39:34 AM 
Started by PrincessLeila - Last post by obsidianom
Max,
The following is from an article on renal recovery from AKI.  

"Accumulated evidence, mostly derived from observational studies, suggests initial therapy in critically ill patients with AKI with continuous RRT, compared with intermittent modalities, improves the probability of recovery to dialysis independence. Evidence from high-quality randomized trials failed to show any association between delivered dose intensity of RRT and recovery.'

It basically states that dialysis does not reduce the chances of recovery and the amount of dialysis also doesnt reduce recovery.  (RRT is renal replacement therapy, or dialysis).  So there is really no evidence that dialysis will reduce your chances of recovery. it makes sense to me. Dialysis makes the body healthier than going without it and will give the best chance to heal anything. Going without it only increases stresses in the tissue and reduces the ability to heal. The kidney isnt a muscle. You cant use that analogy. It is however very sensitive to inflammation , toxins and other issues that occur from lack of kidney function. In effect it is a snowball effect. As the kidney fails , it allows build up of chemicals and inflammation that further kills the kidney nephrons. So dialysis is the one chance to reduce this in AKI.


obsidianom,

Thanks for the post.  I have read these studies and agree. But most of the studies, I believe, are over a short duration of time.  Most AKI that is resolved is done so within days to a week or two.  My situation is different.  It has been nine months.  Of course, I now have an ESRD DX (but some kidney function continues to exist).  I have been told by two nephro docs to be sure I do not take off too much fluid as it may dry out the kidneys and negatively impact any potential improvement.  There must be a reason they do not want that to occur.  The other issue is that in most cases if urine was made initially it is greatly reduced or even stops after a year or so on dialysis.  What causes that?  I don't know, but I go back to my theory of "use it or lose it."  

Finally, while I would agree with most all of your points you still have not addressed the fact that there has been improvement in daily creatinine accumulation over the last 90 days (since stopping chemo treatment).  As noted in a previous post, my rate of creatinine accumulation in a 24 hour period was previously about 1.5 per period.  It is now down to .8 (as we discussed).  I see other signs (albeit, small) of improvement, but this is the most significant along with no major accumulation of potassium and phosphorous.  I realize I am grasping for straws, but there is hard evidence of improvement and the nephro system is not geared up to move in that direction with me to do what can be done for improvements.  It is only watch and wait and I am not convinced that waiting is helping my kidneys.

Thanks.
Two flaws in your argument. Number one, urination proves nothing. There are numerous patients on dialysis who continue to urinate for years. My wife does and has for almost 3 years and so do MANY more.  i do agree with not taking off too much fluid as it does damage organs in general.
You stated that the change in creatinine came AFTER going off chemo.  Well, ----that kind of sums it up . The chemo was probably toxic (which we know it can be) to the kidneys and when off it there was less stress to the kidneys , thus they are working better. that is the nephrons that are still working. But it doesnt prove any change in the overall condition of the system. it is just not being assaulted the same way. You still have a very high creatinine number at 7.6. It is way above even my wife who is at 4.5 and is in ESRD. That is after 9 months in your case. i just dont think it is going to change. Sorry . I wish I could tell you differently. Hang in there, and pray for a miricle.

 6 
 on: Yesterday at 10:03:32 AM 
Started by PrincessLeila - Last post by BJ275
I'm glad you got some care - hope you are feeling better!

Sure hope your ultrasound goes well!

I'm sure dehydration plays some part in your creatinine and BUN. 

I'm just shocked by your use of "death stats"

 7 
 on: Yesterday at 03:49:35 AM 
Started by PrincessLeila - Last post by maxwood
Max,
The following is from an article on renal recovery from AKI.  

"Accumulated evidence, mostly derived from observational studies, suggests initial therapy in critically ill patients with AKI with continuous RRT, compared with intermittent modalities, improves the probability of recovery to dialysis independence. Evidence from high-quality randomized trials failed to show any association between delivered dose intensity of RRT and recovery.'

It basically states that dialysis does not reduce the chances of recovery and the amount of dialysis also doesnt reduce recovery.  (RRT is renal replacement therapy, or dialysis).  So there is really no evidence that dialysis will reduce your chances of recovery. it makes sense to me. Dialysis makes the body healthier than going without it and will give the best chance to heal anything. Going without it only increases stresses in the tissue and reduces the ability to heal. The kidney isnt a muscle. You cant use that analogy. It is however very sensitive to inflammation , toxins and other issues that occur from lack of kidney function. In effect it is a snowball effect. As the kidney fails , it allows build up of chemicals and inflammation that further kills the kidney nephrons. So dialysis is the one chance to reduce this in AKI.


obsidianom,

Thanks for the post.  I have read these studies and agree. But most of the studies, I believe, are over a short duration of time.  Most AKI that is resolved is done so within days to a week or two.  My situation is different.  It has been nine months.  Of course, I now have an ESRD DX (but some kidney function continues to exist).  I have been told by two nephro docs to be sure I do not take off too much fluid as it may dry out the kidneys and negatively impact any potential improvement.  There must be a reason they do not want that to occur.  The other issue is that in most cases if urine was made initially it is greatly reduced or even stops after a year or so on dialysis.  What causes that?  I don't know, but I go back to my theory of "use it or lose it."  

Finally, while I would agree with most all of your points you still have not addressed the fact that there has been improvement in daily creatinine accumulation over the last 90 days (since stopping chemo treatment).  As noted in a previous post, my rate of creatinine accumulation in a 24 hour period was previously about 1.5 per period.  It is now down to .8 (as we discussed).  I see other signs (albeit, small) of improvement, but this is the most significant along with no major accumulation of potassium and phosphorous.  I realize I am grasping for straws, but there is hard evidence of improvement and the nephro system is not geared up to move in that direction with me to do what can be done for improvements.  It is only watch and wait and I am not convinced that waiting is helping my kidneys.

Thanks.

 8 
 on: November 25, 2014, 11:31:51 PM PST  
Started by PrincessLeila - Last post by PrincessLeila
My Hg is at 99 which is miraculous considering how much blood I've lost over last 12 days.

Some type of registrar Ob/Gyn saw me tonight but there was no ultrasound done as everyone had gone home for that type of thing! (I thought ER operated 24hours a day). She has ordered an ultrasound to be done & to get me into their outpatient Gyno clinic at the hospital  (which means free public hospital consultation & treatment).

There was a drug that can be given to stop bleeding but it's contraindicated for CKD patients. They can give me a progesterone hormone pill which can also stop the bleeding (& is often used in conjunction with the drug).

Unfortunately my "death stats" (sr creatinine & BUN) were slightly raised, suggesting either dehydration or my moving closer to death. I'm wondering whether systemic blood loss like I've sustained might be the explanation of these rises? The emergency doc didn't quite know for sure.

But the good news is that I'm not about to bleed to death.

 9 
 on: November 25, 2014, 09:10:06 PM PST  
Started by PrincessLeila - Last post by BJ275
Please let us know how it goes! 

 10 
 on: November 25, 2014, 08:59:27 PM PST  
Started by PrincessLeila - Last post by PrincessLeila
Okay I'm finally here in ER after getting a good night's sleep. They've listed me as a code 3 (1-5). So it means they are somewhat concerned.

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