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 1 
 on: Today at 12:40:30 PM 
Started by NoelTheNole - Last post by NoelTheNole
Hello,
I have been diagnosed and treated for fungal meningitis post transplant. Has anyone else had this happen?

Noel
Kidney Tx 2009

 2 
 on: Today at 09:41:22 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.

 3 
 on: Today at 08:24:59 AM 
Started by PrincessLeila - Last post by maxwood
It all comes down to one simple fact. Cancer kills .Period. Always . There are virtually no cancers that left untreated that wont kill fairly quickly. Kidney disease at least has some options to deal with it . Yes they are imperfect , but they do keep patients alive.
Having had cancer and a wife with renal disease , I have seen both up close. My cancer would have killed me in a few more years definatly. My wifes mother died of breast cancer.  Yet my wife has been alive with renal disease for years.
Cancer scares people more . It is so unpredicatable. It can hit anyone anywhere anytime. I should not have gotten it as there was no family history, no medical issues, I work out daily for over 1.5 hours and have for 45 years now, I eat well, dont smoke or drink etc. Yet I got a severe cancer at age 52. That is why cancer is scary. That bullet can hit anytime. It doesnt matter who you are or what you do. 

Obsidianom,

I'm with PrincessLeila on most of what was said, with the exception of even the world class staying up to date (and conferences are a part of that).  Even if they are world class, they need to stay that way.  But, don't forget there are many causes and types of kidney failure -- AKI is a big one.  it will kill you if not treated in much less time than most cancers.  And, the medical profession (docs, pharma, teaching and research) for the most part don't have a clue regarding the specifics of the cause and, more important, they are at a total loss of how to treat it (other than remove any potential cause they may have identified).  There is no treatment if it progresses to ESRD other than dialysis and transplant.

PrincessLeila is 100% correct about the lack of serious innovation in nephrology.

- Max

- Max

 4 
 on: Today at 08:06:41 AM 
Started by PrincessLeila - Last post by maxwood
Stage 1   Increase in SCr=26.4Ámol/L in 48 h
Or increase =1.5 x baseline
Stage 2   Increase in SCr =2 x baseline
Stage 3   Increase in SCr =3 x baseline
Or increase in SCr to =354Ámol/L
Or initiation of RRT irrespective of SCr
Or in patients<18 years, decrease in eGFR to<35 ml/min per 1.73 m2

These are the 3 stages in acute kidney injury. Stage 3 is the worst and if over 3 months is considered ESRD. Notice SCR serum crestinine over 3 times baseline is the first criteris of stage 3 . In your case Max at 7.6 you are probably 7 times baseline . So it doesnt look good. sorry.


'Also, by the way, the .8 is per 24 hours. It would be .4 per 48 hours if your numbers are correct.  So I am slightly (not significantly) outside the range'

  YOUR MATH IS BACKWARDS. If it is .8 at 24 hours increase then one would assume it would likely be double that at 48 hours as creatinine increases fairly steadily in these cases. It would be likely 1.6 or double in 48 hours.    


obsidianom,

I stand corrected on the math.  Yes, it is 1.6, which according to your chart is stage 2 if I understand the chart correctly.  Also, according to your chart, "initiation of RRT irrespective of SCr" automatically puts me into ESRD.  I assume RRT is Renal Replacement Therapy which in my case would be dialysis that began in February of this year.

The 7.6 creatinine number is clearly problematic. But, I have known people who were not on dialysis at a creatinine of over 10 and they stayed that way for several years and they are still alive today after a transplant.  The one number that I see as a larger issue is my BUN.  After four days it was up to 65. My post dialysis treatment BUN is about 16.  So, that number is increasing at a pretty high rate -- 12.5 per day and looking back the increase per day has not improved significantly like creatinine and other numbers.  

All of this belies the point that 60 days ago my creatinine 24 hour rate was 1.5 and not .8, which is over a 40% improvement.  I surely do not disagree that I need to be on dialysis.  It is my point that I have seen quantitative improvement in my numbers as well as subjective improvement.  And further, it is my belief that dialysis may not have a positive impact on any potential improvement in kidney function (and perhaps is having a negative impact).  If that assumption is correct, I need to find a way to balance between dialysis and not dialysis as soon as I can.  It is not an easy problem to solve.  In fact, it may not be solvable -- but I will not give it up until I have exhausted all possible medical options.

I liken this to physical training.  If I wanted to increase my running distance, as an example, I would gradually increase my distance per run over a period of weeks or months.  The parrallel to the kidney issue is that if my kidneys are on dialysis for less time it might force the nephrons to grow and/or improve (which has already happened to a limited extent since my AKI diagnosis).  This idea is not unlike increasing muscle mass or endurance.  For someone with another form of ESRD and whose kidneys are hoplessly gone (no urine and no function) this obviously would not be valid.  That is not me.

If it requires thinking outside of the box, I am prepared to do that -- just as you did with your cancer treatment (which worked in your case, thank goodness).

I will continue to work on it.  As PrincessLeila commented, I need to find someone who specializes in treating AKI that can be a cooperative medical partner in solving the problem and not one who is so ready to accept and enforce the status quo (inside the box).

Thanks.

- Max

 5 
 on: Today at 05:40:10 AM 
Started by PrincessLeila - Last post by obsidianom
It all comes down to one simple fact. Cancer kills .Period. Always . There are virtually no cancers that left untreated that wont kill fairly quickly. Kidney disease at least has some options to deal with it . Yes they are imperfect , but they do keep patients alive.
Having had cancer and a wife with renal disease , I have seen both up close. My cancer would have killed me in a few more years definatly. My wifes mother died of breast cancer.  Yet my wife has been alive with renal disease for years.
Cancer scares people more . It is so unpredicatable. It can hit anyone anywhere anytime. I should not have gotten it as there was no family history, no medical issues, I work out daily for over 1.5 hours and have for 45 years now, I eat well, dont smoke or drink etc. Yet I got a severe cancer at age 52. That is why cancer is scary. That bullet can hit anytime. It doesnt matter who you are or what you do. 

 6 
 on: Today at 05:02:33 AM 
Started by PrincessLeila - Last post by PrincessLeila
http://drsircus.com/medicine/sodium-bicarbonate-baking-soda/healing-the-kidneys-with-sodium-bicarbonate

Found this article that discusses the original scientific study on this topic. Not sure of the veracity of all the claims in this article but the original study is persuasive about the benefits of this supplement.

Always discuss with your Neph before anything else!

 7 
 on: Today at 03:53:22 AM 
Started by PrincessLeila - Last post by PrincessLeila
Yes, that's right BJ. I forgot to add, that everyone on ACEis or ARBS should raise this question with their Nephs.

 8 
 on: Today at 03:50:34 AM 
Started by PrincessLeila - Last post by PrincessLeila
I listened to the ASN podcast talking about the research and the sessions, and it sounds like they made an extra effort to integrate with other disciplines to learn from them what is happening and how it can help with kidney research.  As a registered dietitian myself, I find that when I attend continuing education events, I learn a lot that is important.  So I think your doctors attending is a good thing.  They are stretching their mental comfort zone.  

But I don't see a lot of early detection here in the US.  Many people find out late and we are not proactive to help and encourage people to control their diabetes and high blood pressure (causes of ESRD).


Yes my nephrologists really are world-class nephs, otherwise I wouldn't be seeing them. And to remain at the top of their field they do need exposure to continuing professional development.

But it's no secret that I think that the best of what nephrology has to offer is very lacking. As long as people's kidneys are allowed to progress to failure when the disease has been identified early enough remains in my opinion one of the greatest medical tragedies & unmet clinical needs of our times. If CKD wasn't a common disease, one could perhaps understand the lack of research & progress. But CKD is in fact quite common & the cause of most cardiovascular deaths & well as deaths directly attributed to kidney failure. It claims a lot of lives, far more than what cancer does. But renal research continues to be largely non-existent! I can't help but remain a strident critic of the current state of play with Nephrology.

 9 
 on: Today at 03:35:06 AM 
Started by PrincessLeila - Last post by PrincessLeila
Obsidianom, I would have liked to attend as well. There were a lot of good talks that we held (eg stem cell research, the need for more kidney research, etc) but overall I don't see much evidence of a medical profession overwhelmed with any great sense of urgency or even a sense of crisis about the growing numbers of ESRD patients that are coming their way & the growing cost of dialysis. I compare this to the energy, buzz and money that is being poured into the cancer research industry (where the word 'cure' is not a dirty word at all) and always end up feeling like someone needs to come along & give Nephrologists a big kick up the arse. The only people to do it are the patient advocacy groups.

Have you ever heard of anyone in medicine saying 'we need to find a cure for CKD?". I only see looks of dumbfounded amazement when I utter these words to anyone.

 10 
 on: Yesterday at 06:16:55 PM 
Started by PrincessLeila - Last post by matheaford
I listened to the ASN podcast talking about the research and the sessions, and it sounds like they made an extra effort to integrate with other disciplines to learn from them what is happening and how it can help with kidney research.  As a registered dietitian myself, I find that when I attend continuing education events, I learn a lot that is important.  So I think your doctors attending is a good thing.  They are stretching their mental comfort zone. 

But I don't see a lot of early detection here in the US.  Many people find out late and we are not proactive to help and encourage people to control their diabetes and high blood pressure (causes of ESRD).

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