Return of Kidney Function From AKI?

Ask Our Experts Dr. John Agar, Nephrologist
1

I am in the U.S. and in February of this year I was diagnosed with Acute Kidney Failure which sent me to dialysis. There were two causes. First, I experienced several falls over a four hour period while walking on ice, which apparently caused a massive release of creatinine that overwhelmed the kidneys. That’s what the nephrologist believe. Creatinine release from muscles is normal, but this apparently was an extraordinary amount – at least for my age (69). The second issue was lymphocytes in the kidney that resulted from Mantle Cell Lymphoma which was discovered at the same time. That is an extremely rare presentation for this type of lymphoma. I was on chemo treatment from March until the first week in July and am in remission. Chemo treatment, I’m sure, didn’t do anything to further the cause of my kidneys – except eliminate the lymphocytes.

According to my onc and nephrologist the lymphocytes are no longer clogging the kidneys which means one less issue the kidneys have to deal with. I continue to make a normal amount of urine but my kidneys do not clean. My nephrologist says there is still a possibility my kidneys will recover but in my opinion the longer it goes the less likely that will happen.

I dialyze in a clinic (3 days a week) and have been since February. My lab reports are steadily improving but still way out of range for normal. My recent creatinine measured one day after dialysis was 4.9, BUN 29 and GFR 12. This is sure no sign the kidneys are working as they should. But it is a big improvement from where I started on dialysis months ago. The trend over the weeks and months has been steadily improving with each lab report (monthly).

By the way, I plan on moving to home/hemo dialysis if things do not improve.

Finally, I am coming to the conclusion that dialysis may be working against the return of my kidneys from my own research and want to find a nephrologist for a second opinion. Maybe even coming off of dialysis with very close monitoring might be an option. The doctor I am looking for should be in a teaching/research facility. I did that with my lymphoma and it worked out incredibly well.

Do you have a suggestion regarding the effect of dialysis on return of kidney function as I have described here? Also, any suggestion for a the type of nephrologist I should look for would be greatly appreciated.

Thank you.

2

Dear Maxwellsmart

You certainly have had a tough time, and your kidney function has likely taken a concurrent ‘hit’ from several directions at once. The issue is a complex one and has far too many possibilities to really be able to give you any meaningful Internet-based help. That said, I will try to make some sense of it all for you.

Central to your problem, I think, is the mantle cell lymphoma. This is a relatively rare presentation of non-Hodgkins lymphoma, and it can affect the kidneys in a variety of ways, but mainly either through direct lymphomatous cell infiltration, by causing an interstitial nephritis, or by inducing membranoproliferative glomerulonephritis.

The first of these – interstitial nephritis - tends to swell the kidneys and jam them full of lymphocytes . This structurally and functionally damages the kidneys and can cause intra-renal (within the kidney) tubular obstruction … swamping the normal kidney architecture with an ‘imported’ cell population of lymphoma cells.

The second, an acute inflammatory change in the interstitium of the kidney – the supportive tissues of the kidney that lie in between and around the nephrons – and this leads to an acute inflammatory response and acute kidney injury.

The third major possible effect is a mantle cell lymphoma-related glomerulonephritis with the typical features on biopsy of membranoproliferative (or mesangiocapillary) glomerulonephritis – a specific appearance on kidney biopsy where the glomerular basement membrane thickens and reduplicates with major disruption of the normal filtration capacity of the glomeruli.

All this sounds (and is) very complex and technical but, in the final analysis, all cause major structural and functional disturbance to normal kidney architecture and function … changes that can be very difficult (and slow) to reverse – if indeed any structural or functional (the two are bound together) is possible at all.

A renal biopsy is the best way to sort these three possible (and also possibly co-existing) causes out. Indeed, there can be elements of all three in play. I am sure you will have had a biopsy, and your nephrologist will be able to tell you which of these three main histological (cellular) changes were present. To a significant extent, the biopsy changes can guide appropriate therapy and give a better idea of prognosis.

However, as if that isn’t enough to cope with, you have taken a further complicating ‘hit’ against your kidney function as, superimposed on the background mantle cell lymphoma and its three main renal manifestations (as above), you have had four falls on ice with what clearly sounds like rhabdomyolysis. This is a not-uncommon cause of acute kidney injury that results from anything that causes major muscle damage and the consequent release from that damaged muscle of large amounts of a muscle protein – myoglobin. This myoglobin can be detected in the urine or assessed by a parallel rise in the blood level of a muscle enzyme creatine kinase (total CK) . Myoglobin is a toxic substance to the kidneys and causes significant injury to the renal tubular cells and/or blocks up the renal tubules.

Then, you unfortunately had to add on top of this rather potent mix of problems the issues around chemotherapy. Chemotherapy is not a one-plan-fits-all treatment, either. There are a multitude of chemotherapeutic drugs, drug combinations, and ways in which the many and varied chemotherapy drugs work, combine, and interact. Some chemotherapy agents are, of themselves, directly toxic to the kidneys, some are not. In addition, some chemotherapy drugs can lead to – and this is especially in lymphoma treatments – a rapid lysis (or destruction) of the cancer cells such that there is the sudden release of a range of cellular toxins (like uric acid) from the destroyed cancer cells into the circulation. Inevitably, these toxins are carried through to the kidneys by the blood and can cause a further ‘hit’ on kidney function. This can result in superimposed conditions like acute urate nephropathy, though oncologists are now pretty good at anticipating this and pre-treating the chemotherapy with agents like allopurinol - or one of the stronger and more effective urate-protecting drugs.

So, you see, this is a very complicated set of circumstances. It is impossible for me to know which of these – or, indeed, if possible all are in play, here. And, I am sorry to be sounding a bit grim, but it seems that a rather grim (and uncommon) set of circumstances has co-hit your kidneys.

I also have to say that the long period of time you have required dialysis – and the fact that you still appear to need dialysis – are not very encouraging signs for a meaningful recovery of renal function. I hear what you say about your fear that “dialysis may be working against the return of my kidneys” … and that’s a hard call for me to comment on from here … but the post dialysis numbers you quote do suggest to me that you are likely still dialysis-dependent. However, only those who care for you can make that call and advise you on that. For people who appear to have ‘potentially’ recovering function, we often try to slowly wind back the dialysis hours and/or frequency, and assess their post to pre dialysis rate of climb in easily measured wastes like urea and creatinine … but this is a very individual thing, and can only be judged, day by day, treatment by treatment, and is beyond my capacity to make any judgment on.

To be honest, I think it sounds as if you have been remarkably well advised and managed to date. Your circumstances have not been common, nor likely easy, and will have posed significant challenges, not only for you and your family, but for your team, too.

I do fear that the hope of regaining renal function to dialysis independence might be a step too far, in your case … though hang in there a while longer. Try not to be too shattered, though, if you remain dependent on dialysis – as I suspect you might.

You are being wise, at this point, by also considering your maintenance dialysis options, going forward, and I don’t need to say here that my own biases are clearly and strongly towards self-management at home, whenever and wherever that is possible. I note you are already considering this – and I would encourage you along this path.

3

Dr. Agar,

Thank you so much for your reply! You don’t know how much I appreciate it. I have a few comments from your reply as noted below (>>>>):

1. “Central to your problem, I think, is the mantle cell lymphoma. This is a relatively rare presentation of non-Hodgkins lymphoma, and it can affect the kidneys in a variety of ways, but mainly either through direct lymphomatous cell infiltration, by causing an interstitial nephritis, or by inducing membranoproliferative glomerulonephritis.”

>>>>I had a biopsy performed at my diagnosis in February of this year. The biopsy showed a direct lymphomatous cell infiltration as you noted. Here is a link to that report: http://bit.ly/1lTsTf3. From my understanding the lymphoma infiltration no longer exists as I have been in remission since May. I was seen by an ONC doctor at the MD Anderson Cancer clinic, which is one of the top cancer centers in the world. He treated me for lymphoma and he also referred me to a nephrologist in their lymphoma section. That doctor seemed to think the direct effect of the lymphoma no longer existed when I saw him in June. That DX was from lab work, a PET scan and an MRI scan. He indicated that there was no atrophy of the kidney that he could determine from the scans. He did not perform another biopsy or ultrasound.

[I]2. “The first of these – interstitial nephritis - tends to swell the kidneys and jam them full of lymphocytes . This structurally and functionally damages the kidneys and can cause intra-renal (within the kidney) tubular obstruction … swamping the normal kidney architecture with an ‘imported’ cell population of lymphoma cells.

The second, an acute inflammatory change in the interstitium of the kidney – the supportive tissues of the kidney that lie in between and around the nephrons – and this leads to an acute inflammatory response and acute kidney injury.”[/I]

>>>Yes, I agree 100%. That is what my local doctors have told me and that is what is reflected in the biopsy report. As noted above, I believe the lymphocytes no longer exist and that leaves only the initial damage (inflammation and swelling), which begs the big question; can the kidneys recover from this damage? Your thoughts?

3. “The third major possible effect is a mantle cell lymphoma-related glomerulonephritis with the typical features on biopsy of membranoproliferative (or mesangiocapillary) glomerulonephritis – a specific appearance on kidney biopsy where the glomerular basement membrane thickens and reduplicates with major disruption of the normal filtration capacity of the glomeruli.”

>>> From my review of the biopsy report, I do not think the condition you describe exists.

4. “Then, you unfortunately had to add on top of this rather potent mix of problems the issues around chemotherapy. Chemotherapy is not a one-plan-fits-all treatment, either. There are a multitude of chemotherapeutic drugs, drug combinations, and ways in which the many and varied chemotherapy drugs work, combine, and interact. Some chemotherapy agents are, of themselves, directly toxic to the kidneys, some are not. In addition, some chemotherapy drugs can lead to – and this is especially in lymphoma treatments – a rapid lysis (or destruction) of the cancer cells such that there is the sudden release of a range of cellular toxins (like uric acid) from the destroyed cancer cells into the circulation. Inevitably, these toxins are carried through to the kidneys by the blood and can cause a further ‘hit’ on kidney function. This can result in superimposed conditions like acute urate nephropathy, though oncologists are now pretty good at anticipating this and pre-treating the chemotherapy with agents like allopurinol - or one of the stronger and more effective urate-protecting drugs.”

>>I am unsure of the impact you describe here. For the most part the chemo treatment drugs were: Rituxan, Vincristine, Adriamycin, Cytoxan and Prednisone. There were six treatments/infusions that began in March and ended in early July. The treatment was effective for the lymphoma (in remission since May). I certainly understand there would be a significant impact to the cells and by other toxins released into the system as a result of these drugs – both directly from the drugs and indirectly as you describe. Clearly, during treatment and for some period of time afterward (many weeks) this would be the case. I am now two months beyond the last treatment and assume that the direct impact at this point might be greatly reduced. That is my view – I have no medical opinion to confirm this. So, the big question is would the action you describe cause permanent damage? If not, then there is one less issue effecting recovery. Your thoughts?

5. “I also have to say that the long period of time you have required dialysis – and the fact that you still appear to need dialysis – are not very encouraging signs for a meaningful recovery of renal function. I hear what you say about your fear that “dialysis may be working against the return of my kidneys” … and that’s a hard call for me to comment on from here … but the post dialysis numbers you quote do suggest to me that you are likely still dialysis-dependent. However, only those who care for you can make that call and advise you on that. For people who appear to have ‘potentially’ recovering function, we often try to slowly wind back the dialysis hours and/or frequency, and assess their post to pre dialysis rate of climb in easily measured wastes like urea and creatinine … but this is a very individual thing, and can only be judged, day by day, treatment by treatment, and is beyond my capacity to make any judgment on.”

>>>I would agree with your first sentence. However, my early condition and diagnosis (from the biopsy) certainly indicated there was a possible return of kidney function at the time of the biopsy. Subsequent to that biopsy I was in chemo for six months which would have impacted the return as you describe. I guess the big question is did that treatment simply delay the repair process or did it cause further permanent damage from which there can be no recovery. If the first (slow recovery), then now is the time to see progress since I am no longer on chemo and have not been for 60 days.

I believe there are signs (baby steps). Although my current numbers call for dialysis, these numbers have been steadily improving since my diagnosis. My first GFR result in the clinic was 7. It has slowly increased to the current 12. While this is not a major move, it does show a trend. Also, over the last three or four weeks I have noticed a return of yellow color in my urine. It is not back to normal but from February until this recent change it was as clear as water. And, I continue to make a normal amount of urine.

A second important question is this; is dialysis helping or hurting the possible recovery (if recovery is possible)? I believe the answer to that question is – it is not helping and it may be hindering the process (this is an opinion from my own research and not from a medical professional).

A final and critically important question is assuming that all is not lost for a recovery as described above, is there any treatment that may help. From my own research, I’m afraid the answer to that question is a resounding NO – other than some adjustment of dialysis. This, of course, is a double edge sword. From all that I can tell any potential recovery treatment consists of removing the underlying cause. There is no proactive treatment that exists. Am I correct?

Again, thank you for taking the time to reply to my question. I am scheduled to see a nehrologist at UAB (http://bit.ly/1yKerqm) which is a teaching and research hospital that is ranked fairly high in nephrology at the end of the month to discuss these issues. They are local and if there is any hope and they are not able to come up with a possible solution I will plan on reaching out to one of the top one or two facilities in the nation. Otherwise, it is on to home dialysis.

Thank you!

4

I have copied my original replies (black) to your 1st post, your second lot of questions (blue), and my replies (in red and bold) to those 2nd set of questions below:

Thank you so much for your reply! You don’t know how much I appreciate it. I have a few comments from your reply as noted below (>>>>):

  1. “Central to your problem, I think, is the mantle cell lymphoma. This is a relatively rare presentation of non-Hodgkins lymphoma, and it can affect the kidneys in a variety of ways, but mainly either through direct lymphomatous cell infiltration, by causing an interstitial nephritis, or by inducing membranoproliferative glomerulonephritis.”

>>>>I had a biopsy performed at my diagnosis in February of this year. The biopsy showed a direct lymphomatous cell infiltration as you noted. Here is a link to that report: http://bit.ly/1lTsTf3. From my understanding the lymphoma infiltration no longer exists as I have been in remission since May. I was seen by an ONC doctor at the MD Anderson Cancer clinic, which is one of the top cancer centers in the world. He treated me for lymphoma and he also referred me to a nephrologist in their lymphoma section. That doctor seemed to think the direct effect of the lymphoma no longer existed when I saw him in June. That DX was from lab work, a PET scan and an MRI scan. He indicated that there was no atrophy of the kidney that he could determine from the scans. He did not perform another biopsy or ultrasound.

  1. “The first of these – interstitial nephritis - tends to swell the kidneys and jam them full of lymphocytes . This structurally and functionally damages the kidneys and can cause intra-renal (within the kidney) tubular obstruction … swamping the normal kidney architecture with an ‘imported’ cell population of lymphoma cells.

[B]Oops … there is a typo of mine there … it should have read “The first of these – infiltrative disease… ” and not “The first of these – interstital nephritis… ”

[/B]
The second, an acute inflammatory change in the interstitium of the kidney – the supportive tissues of the kidney that lie in between and around the nephrons – and this leads to an acute inflammatory response and acute kidney injury.”

>>>Yes, I agree 100%. That is what my local doctors have told me and that is what is reflected in the biopsy report. As noted above, I believe the lymphocytes no longer exist and that leaves only the initial damage (inflammation and swelling), which begs the big question; can the kidneys recover from this damage? Your thoughts?

My thoughts here are tending to another biopsy. This might quantify and document the degree of residual damage, the amount of remaining interstitial disease and the state of the glomeruli (ie: any newly developed changes) … etc. It might help with prognosis – especially re any late recovery of renal function. I guess we tend to be a little ‘freer’ with biopsies here than is usual in the US.

  1. “The third major possible effect is a mantle cell lymphoma-related glomerulonephritis with the typical features on biopsy of membranoproliferative (or mesangiocapillary) glomerulonephritis – a specific appearance on kidney biopsy where the glomerular basement membrane thickens and reduplicates with major disruption of the normal filtration capacity of the glomeruli.”

>>> From my review of the biopsy report, I do not think the condition you describe exists.

True … though this can develop over time and hence my comment re a repeat biopsy.

  1. “Then, you unfortunately had to add on top of this rather potent mix of problems the issues around chemotherapy. Chemotherapy is not a one-plan-fits-all treatment, either. There are a multitude of chemotherapeutic drugs, drug combinations, and ways in which the many and varied chemotherapy drugs work, combine, and interact. Some chemotherapy agents are, of themselves, directly toxic to the kidneys, some are not. In addition, some chemotherapy drugs can lead to – and this is especially in lymphoma treatments – a rapid lysis (or destruction) of the cancer cells such that there is the sudden release of a range of cellular toxins (like uric acid) from the destroyed cancer cells into the circulation. Inevitably, these toxins are carried through to the kidneys by the blood and can cause a further ‘hit’ on kidney function. This can result in superimposed conditions like acute urate nephropathy, though oncologists are now pretty good at anticipating this and pre-treating the chemotherapy with agents like allopurinol - or one of the stronger and more effective urate-protecting drugs.”

>>I am unsure of the impact you describe here. For the most part the chemo treatment drugs were: Rituxan, Vincristine, Adriamycin, Cytoxan and Prednisone. There were six treatments/infusions that began in March and ended in early July. The treatment was effective for the lymphoma (in remission since May). I certainly understand there would be a significant impact to the cells and by other toxins released into the system as a result of these drugs – both directly from the drugs and indirectly as you describe. Clearly, during treatment and for some period of time afterward (many weeks) this would be the case. I am now two months beyond the last treatment and assume that the direct impact at this point might be greatly reduced. That is my view – I have no medical opinion to confirm this. So, the big question is would the action you describe cause permanent damage? If not, then there is one less issue effecting recovery. Your thoughts?

[B][COLOR="#FF0000"][B]Of all of those on your list, the one that sticks out is Adriamycin, a drug that has been used as a model for chronic progressive glomerular disease (Kidney International (1986) 29, 502–510). There are a number of studies around the actual toxicity of Adriamycin - the main expressions of which are - primarily - its cardiac toxicity, but also its nephrotoxicity. It causes a primary glomerular lesion with capsular adhesions and subsequent scarring with a rather odd but recurring lesion at the glomerulo-tubular interface … that no-mans land where the glomerular urinary space blends into the first part of the proximal tubule. Whether the lesion is a primary glomerular one secondary tubular effects, or whether tubular injury per se is a part of the process, seems yet unresolved. However, and this is where I am coming from re a repeat biopsy, the lesion does lead to subsequent scarring that might be substantiated by another look at a new specimen for microscopy. That is not at all to say that Adriamycin was a bad choice for the treatment of your mantle cell lymphoma … not at all - and it may very well have been a life-saving drug for you… but there are always two sides to every coin, and the down side of Adriamycin is its potential to cause tissue toxicity … both for the heart and the kidneys - and this can express itself more in one organ than the other. While some of the other agents have been reported (sporadically) to have (sometimes debatable) nephrotoxic effects, it is the Adriamycin that is waving the red flag to me.

Again, a repeat biopsy might just give some prognostic clues.

I have to say I am feeling a little pessimistic re any meaningful recovery from, at the best, advanced dialysis-independent CKD4-5, but, while stranger things have happened, I would be getting ready for fixed, deep CKD5 and likely ongoing dialysis independence. Remember, I do NOT have any knowledge of your case, other than what you have told me, and even though that information has helped me get a sense of the problem, it is NOT the same as knowing the detail. As for recovery of renal function, while it can take a number of months to claw back to a stable level of recovered function, you are beginning to stretch that envelope at your current eGFR of ‘12’ … and even that ‘12’ is, as best I read it, a post dialysis or near-recent-dialysis ‘12’ and, in the context of your ongoing dialysis dependence, an eGFR says very, very little – if anything – about the true grunt left in your kidneys. In this context, any eGFR ‘number’ is not a number to put too much store by.[/B][/B][/COLOR]

  1. “I also have to say that the long period of time you have required dialysis – and the fact that you still appear to need dialysis – are not very encouraging signs for a meaningful recovery of renal function. I hear what you say about your fear that “dialysis may be working against the return of my kidneys” … and that’s a hard call for me to comment on from here … but the post dialysis numbers you quote do suggest to me that you are likely still dialysis-dependent. However, only those who care for you can make that call and advise you on that. For people who appear to have ‘potentially’ recovering function, we often try to slowly wind back the dialysis hours and/or frequency, and assess their post to pre dialysis rate of climb in easily measured wastes like urea and creatinine … but this is a very individual thing, and can only be judged, day by day, treatment by treatment, and is beyond my capacity to make any judgment on.”

>>>I would agree with your first sentence. However, my early condition and diagnosis (from the biopsy) certainly indicated there was a possible return of kidney function at the time of the biopsy. Subsequent to that biopsy I was in chemo for six months which would have impacted the return as you describe. I guess the big question is did that treatment simply delay the repair process or did it cause further permanent damage from which there can be no recovery. If the first (slow recovery), then now is the time to see progress since I am no longer on chemo and have not been for 60 days.

I am afraid I strongly suspect the second (further damage), not the first (slow recovery) … see all above.

I believe there are signs (baby steps). Although my current numbers call for dialysis, these numbers have been steadily improving since my diagnosis. My first GFR result in the clinic was 7. It has slowly increased to the current 12. While this is not a major move, it does show a trend. Also, over the last three or four weeks I have noticed a return of yellow color in my urine. It is not back to normal but from February until this recent change it was as clear as water. And, I continue to make a normal amount of urine.

The amount of urine you make - or its’ colour - is not always (even, not often) a useful sign. Urine volume and urine colour do NOT equate to glomerular or tubular function, and many patients who are utterly and long-term dependent on maintenance dialysis will still pass urine. The main advantage of a urine output in a dialysis-dependent patient is the freer fluid intake that is accorded by a useful urine volume, but solute clearance can still be totally inadequate … ‘colour’ notwithstanding. I am sorry to disappoint, here, but the fact you are passing urine is not necessarily something to place great hope in.

A second important question is this; is dialysis helping or hurting the possible recovery (if recovery is possible)? I believe the answer to that question is – it is not helping and it may be hindering the process (this is an opinion from my own research and not from a medical professional).

I doubt very much that dialysis is ‘hurting’ the recovery of renal function … though dialysis can delay (or mask) the small signs of functional recovery, I have to say that I doubt that ‘hurting’ or diminishing the chance of recovery is likely to be the case. Certainly, it will not be negatively impacting on any eventual recovery that might occur, though it may (as said) ‘delay’ or ‘mask’ – at least for a period.

A final and critically important question is assuming that all is not lost for a recovery as described above, is there any treatment that may help. From my own research, I’m afraid the answer to that question is a resounding NO – other than some adjustment of dialysis. This, of course, is a double edge sword. From all that I can tell any potential recovery treatment consists of removing the underlying cause. There is no proactive treatment that exists. Am I correct?

Sadly, no … I do not know of any treatment that can reverse any damage done or increase the chances of a recovery. As for the answer your research has returned … I have to say I agree with you. I am afraid that proactive treatment is not a likely option and that there simply isn’t anything out there to change your renal outcome, whatever that will be … and I would be preparing myself, if I were you, for dialysis dependence. While I maybe wrong - and I hope I am - I suspect I am not.

Again, thank you for taking the time to reply to my question. I am scheduled to see a nephrologist at UAB (http://bit.ly/1yKerqm) which is a teaching and research hospital that is ranked fairly high in nephrology at the end of the month to discuss these issues. They are local and if there is any hope and they are not able to come up with a possible solution I will plan on reaching out to one of the top one or two facilities in the nation. Otherwise, it is on to home dialysis.

Yes, your team is clearly a fine one. Trust in them.

5

Dr. Agar,

Again, thank you for your very thorough and helpful reply. I’m afraid I agree with almost all that you say. I do have one question. And, it is one I have given thoughts to previously – another biopsy. While a new biopsy might help with knowledge of the current state of affairs, I’m not sure what the benefit might be. Irregardless of the results of a biopsy, I am still dialysis dependent and there is no proactive treatment that is likely to change that. So, is it just a wasted procedure?

Thanks again!

  • Max
6

The only purpose of a re-biopsy would be as a prognostic exercise … is there recoverability, or is there (more likely) evidence of progressive damage, scarring, fibrosis, and irrecoverable damage.

As regards a ‘wasted’ procedure … and one not without (albeit small) risk … well, that is a decision you need to weigh up with your team, and will be much driven by your ‘need to know’ vs. your preparedness to accept the more likely outcome of irreversibility.

Will a biopsy lead to therapeutics? … no … only to further hope or closure.

But … whatever the case … I cannot make that choice for you.

Enough said.

7

Hi Dr Agar,

I’m back :-). Thank you for all of your comments on my situation several months ago. Since our last discussion not much has changed. I am still in the clinic three days a week. When we last spoke I had not started my permanent access. I was using a catheter that was installed back in February of last year. I was operated on for my fistula in early October and then again in early December (translocation). They have just begun to use my new fistula (about 2 weeks ago) and it seems to be going quite well. I want to use button holes and am told that it may be another month before they will be ready for self-cannulation. Once ready and I can stick myself I will begin the move to home-hemo. I will have a caregiver/partner, but I want to do as much as I can do myself.

As in my last comment, I am still hopeful of some return of kidney function. In fact, since coming off of chemo (as noted in our prior discussion), I have seen some improvement. But, I have not had a 24 hour urine test yet.

Over the last few months I have experimented with skipping dialysis to better assess my situation. My clinic does not endorse this, of course. I am doing this on my own. I am normally in the clinic on Monday, Wednesday and Friday and have only skipped a couple of Fridays to give me a four day stretch without dialysis ahead of lab reports. I wanted to see what the impact was. The first thing I noticed was that my critical labs (potassium and phosphorus) do not budge over several days without dialysis. They stay well within range. My BUN and creatinine do budge. BUT, if you look at the trend since May they are budging less and less. Attached is a report I put together to show how much each increased on a daily basis .

A couple of points I should make. One, after 4 days and with high BUN and Creatinine numbers I feel no different. Two, it seems the trend shows some improvement in kidney function. Time will tell if the trend will continue.

I have a few questions. Is there any medical reason my BUN and creatinine would level off at some high level if I had longer periods off of dialysis? Maybe, let’s say, BUN 60 and creatinine 10 or so. And is there any reason to believe that the kidneys might take on more function with the increased need and bring those numbers down on their own? The other question relates to home-hemo. Would it perhaps improve what little kidney function I do have? By the way, I believe that to be in the GFR 8 TO 12 range. That is from about GFR 3 when I was first diagnosed with AKI in 2/14. I will get that confirmed soon with a 24 hour urine test.

As a note of caution, I do not plan to experiment on my own for longer periods without the support and oversight of a nephrologist.

Your response would be greatly appreciated.

Thank you.

  • Max Wood
8

Let me add that I am a 70 year old male, in remission from Mantle Cell Lymphoma (MCL) and otherwise in good condition. I walk 20 to 30 miles a week. I continue to make urine at about 1500 cc per day which is about where I was when first diagnosed with AKI in 2/14.

9

I have one more bit of information to add. I visited our local home dialysis unit yesterday and showed the doc the chart I mentioned in my previous post here. I was there to evaluate home hemo and get advice on creating buttonholes for my new AV Fistula. He strongly recommended PD dialysis after looking at the numbers. He said if a 24 hour urine test confirmed the numbers that the amount of time I would spend on dialysis with manual exchange could be greatly reduced. He want on to agree that in unit dialysis could have a detrimental impact on kidneys. Namely, from excess fluid removal and the associated yo-yo effect of three days per week loss of that fluid.

In any event, after learning more about PD I am now seriously considering that form of dialysis. The hope is my current level of kidney function is sufficient to greatly reduce the amount of time I spend on dialysis. Perhaps (with a capital “P”) the more gentle cleaning may improve my existing kidney function – which has improved over the last 5 months according to the chart.

10

[B]Dear Max

I apologise for my late response but I have been in the US at the ADC in New Orleans and only flew home yesterday. My time was pretty full while at the meeting and I didn’t get a chance to reply.

My answers are in red/bold, below[/B]

Hi Dr Agar,

I’m back :-). Thank you for all of your comments on my situation several months ago. Since our last discussion not much has changed. I am still in the clinic three days a week. When we last spoke I had not started my permanent access. I was using a catheter that was installed back in February of last year. I was operated on for my fistula in early October and then again in early December (translocation).

I think that was a wise step … well done.

They have just begun to use my new fistula (about 2 weeks ago) and it seems to be going quite well. I want to use buttonholes and am told that it may be another month before they will be ready for self-cannulation. Once ready and I can stick myself I will begin the move to home-hemo. I will have a caregiver/partner, but I want to do as much as I can do myself.

All those intents and steps seem absolutely spot-on. It seems that you have a wise set of advisers over there, wherever you are.

As in my last comment, I am still hopeful of some return of kidney function. In fact, since coming off of chemo (as noted in our prior discussion), I have seen some improvement. But, I have not had a 24-hour urine test yet.

I think it is good to be hopeful, but I have to say that I am not too sure your best hopes will materialize. It seems your team, too, have that in mind as they have taken the (wise) step of inserting your AVF and proceeding with preparations for home training and home transfer. Your choice, there, is a good one … but then, I would say that, wouldn’t I, as I am a home dialysis ‘nut’.

Over the last few months I have experimented with skipping dialysis to better assess my situation. My clinic does not endorse this, of course. I am doing this on my own. I am normally in the clinic on Monday, Wednesday and Friday and have only skipped a couple of Fridays to give me a four-day stretch without dialysis ahead of lab reports.

While I can understand your clinic not wishing to endorse this, it seems you clearly have enough residual function to allow you the leeway to run your own ‘experiment’ and for this to occur – short term, mind you – until such time as you can come to terms with the shock of what has happened to you and can accept dialysis as your long term existence … for, sadly, that is what I think has to happen here. I would like to be optimistic on your behalf for a return of renal function, but, to be utterly honest, I cant see that happening. Once you can accept that – and that may take some time – then you need to knuckle down and get on with accessing the BEST dialysis you can … and that is the path of home and self-care you have already had laid out for you.

I wanted to see what the impact was. The first thing I noticed was that my critical labs (potassium and phosphorus) do not budge over several days without dialysis. They stay well within range. My BUN and creatinine do budge. BUT, if you look at the trend since May they are budging less and less. Attached is report I put together to show how much each increased on a daily basis.

[B]Your residual renal function … such as it is … is likely sufficient enough to take care of potassium balance … so it is of no surprise that this doesn’t alter in your 4-day experiments. I wouldn’t expect it to.

Phosphate accumulates more slowly and this, also, wouldn’t be likely to ‘budge’ … as you say.

So … both of these non-changing ‘labs’ are not at all unexpected, nor surprising to me.

As you say, your urea and creatinine do change, upwards, during your off-dialysis breaks though your impression has been that the overall trend suggests they are rising to a lesser degree – over time – than they did earlier on.

Urea load and urea concentrations are complex: they are never ‘the same’, in what might otherwise seem a comparable inter-dialytic time-break: the urea load will depend on your dietary protein intake, your anabolic to catabolic metabolic balance (for that particular inter-dialytic period), your volume status (for that particular inter-dialytic period) … etc.

The same might be said for creatinine … though, here, throw in muscle activity and a few other variables as well.

No two inter-dialytic periods are even the same.

Looking at your data, I wonder if the higher urea and creatinine levels early on represented more a period where you were catabolic and were recovering from chemotherapy … and now you have settled into a more stable period of your maintenance therapy.
[/B]

A couple of points I should make. One, after 4 days and with high BUN and Creatinine numbers I feel no different.

[B]Nor would you be expected to note any. These levels of urea and creatinine, though of themselves they signify your ESRD, would NOT be expected to induce any discernable symptoms. Urea is remarkably non-toxic, and you would have to have levels that were screamingly higher before you noted any clinical effects. Ditto creatinine.

While your ‘labs’ suggest you are dialysis dependent, they also tell me you appear to be dialyzing well. This means you are feeling well, because your biochemistry is being well cared for through a combination of your dialysis and your residual renal function (RRF). But, your RRF, in my view, is likely to wane, over time … though this ‘waning period’ is going to be measured in months - even to more than a year or two = to your benefit. But, it also would appear that while your RRF is sufficient (for now) to allow your ‘numbers’ to look good, the risk of persisting too long with your ‘experiment’ of ‘missed dialysis days’ is that this while ‘safe’ to do so now, there will come a point where that safety turns to additive risk.[/B]

Two, it seems the trend shows some improvement in kidney function. Time will tell if the trend will continue.

As I have said, I rather doubt this trend, to be honest. I think the ‘trend’ is more likely a stablization ‘trend. I think you should celebrate the fact that you have sufficient RRF to remain well, and well controlled with dialysis, but that you would be wise to come to realize that, for all your wishing it were not so, dialysis is likely here and here to stay, and that you have a unique chance to transition into the best form of dialysis possible … home care and self care HD through an AVF … and that your RRF is the bridge to permit that to occur with the least problems along the way.

I have a few questions. Is there any medical reason my BUN and creatinine would level off at some high level if I had longer periods off of dialysis? Maybe, let’s say, BUN 60 and creatinine 10 or so.

[B]There is a risk, in dialysis, that people fixate too much on ‘labs levels’ and not enough on the whole person, on wellness, and on finding the best dialysis possible to fit lifestyle. ‘Labs’, as you call them over there, are numbers, and just that. Don’t fall into the trap of fixing all your attention on numbers. They simply are markers of level of metabolic waste clearance = a combination of your dialysis + your RRF.

You are, sadly, in that twilight between sufficient RRF to make utter dialysis dependence uncertain, and no RRFF where utter dialysis dependence is unavoidable. And, yes, that is a difficult place to be …

At this point, it boils down to a judgment call to decide which way to jump … to RRF (but deep CKD5 and, likely, as time passes, the onset of increasingly symptomatic non-dialytic CKD5) or dialysis + RRF (and the preservation of health and well-being). I suspect your advisers have recommended the later. They are best placed to continue to give your advice – I am NOT. Their step-by-step plans for you have, in my view, been right on the mark. I would suggest you learn to trust them, and to follow their advice. Seeking further wiggle-room from a net-based adviser is, in my view, unwise.
[/B]

And is there any reason to believe that the kidneys might take on more function with the increased need and bring those numbers down on their own?

I have answered this, again and again … and, I believe the answer in a ‘no’ … and I can’t say it more clearly by repeating it yet again.

The other question relates to home-hemo. Would it perhaps improve what little kidney function I do have?

No, but it will give you the best possible combination of good dialysis + the preservation of whatever RRF you still have, for as long as you have it.

By the way, I believe that to be in the GFR 8 to 12 range. That is from about GFR 3 when I was first diagnosed with AKI in 2/14. I will get that confirmed soon with a 24-hour urine test.

I am sorry, but this test is unlikely to resolve any of this. It is not going to be in any way reliable, or contributory.

As a note of caution, I do not plan to experiment on my own for longer periods without the support and oversight of a nephrologist.

To be frank, this is the wisest statement in your post.

Let me add that I am a 70 year old male, in remission from Mantle Cell Lymphoma (MCL) and otherwise in good condition. I walk 20 to 30 miles a week. I continue to make urine at about 1500 cc per day which is about where I was when first diagnosed with AKI in 2/14.

Both of these are to your benefit.

I have one more bit of information to add. I visited our local home dialysis unit yesterday and showed the doc the chart I mentioned in my previous post here. I was there to evaluate home hemo and get advice on creating buttonholes for my new AV Fistula. He strongly recommended PD dialysis after looking at the numbers.

I agree with that … PD is an excellent dialysis choice … particularly while you have residual renal function … and he is right, though it seemed that from all that has gone before, you had chosen home HD. Either is better than any form of centre-based dialysis. Which, comes down to a lifestyle decision. For this, I suggest you log into and self assess your decision-making at the http://mydialysischoice.org/ program.

He said if a 24-hour urine test confirmed the numbers that the amount of time I would spend on dialysis with manual exchange could be greatly reduced.

I doubt that a 24-hour urine test, whatever the result, would likely be reliable, or particularly useful … and this is the only (tiny) part of the advice and/or management you have received from your team where I might (possibly) differ … and that difference is arguable, too.

He want me to agree that in unit dialysis could have a detrimental impact on kidneys. Namely, from excess fluid removal and the associated yo-yo effect of three days per week loss of that fluid.

[B]He is ABSOLUTELY right. For heavens sake, Max, learn to trust the man. He is on your side. He is on the right wavelength in all he is saying. He is giving you faultless advice. It is time you stopped twisting and turning for more and more advice on the net, and gave your team the trust they appear to well deserve, and work with them.

I said earlier that you should not fixate on the ‘labs’ so much. But … fixate about fluid as much as you can.

Volume is what matters in dialysis, not small perturbations in blood urea, creatinine (both are only markers), potassium (except where widely outside the normal range), and phosphate (except in the longer term).
[/B]

In any event, after learning more about PD I am now seriously considering that form of dialysis.

Good … though the benefits of PD wane over time (again, that time is measured in months or years) … and it is wise to have your back-up AVF ready and ‘there’ … as it is … even should you choose PD as your first modality.

The hope is my current level of kidney function is sufficient to greatly reduce the amount of time I spend on dialysis.

I have answered this, but take your team’s advice. Trust them. They seem to have been giving you all the correct choices, giving you the correct answers, and taking the correct steps … every step of the way.

Perhaps (with a capital “P”), the more gentle cleaning may improve my existing kidney function (nope) – which has improved over the last 5 months according to the chart. (as above).


Enough said. I cant provide you more.

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Dear Max … I have col-located all my answers below

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Dear Max … I have co-located all my answers below

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Dear Max … I have co-located all my responses in a post, below.

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Dr. Agar,

I hope that your visit to the states was productive and pleasant! Actually, the New Orleans venue would sure help with the latter :-).

You are an incredible person to take the time to reply to my situation and it is greatly appreciated. Here are a few comments:

1) My team consist of several nephrologist that I have seen and in most cases sought out. In other words, the system for me would keep me, for the most part, with one physician in my clinic. I’m not sure I would be where I am today if I listened only to that one doctor. I want input from as many experts as I can find – including you. My decisions are not based solely on what one doctor that the system keeps me with. While most of the physicians I have seen are related in some way to the clinic I have seen one other nephrologist outside of the group for a second opinion at UAB, which is a teaching/research hospital here that has a decent reputation for kidney work (http://bit.ly/1yKerqm). I want to visit a top facility in the country. Maybe Mayo or Sloan Kettering. My experience has been the newest and most innovative treatments (and hopefully, most effective) will come from a top teaching/research facility. I have a great team and I listen to them – but not blindly. Frankly, if I had had a team like this in February of 2014 and had not relied so much on my onc doctor, I might have kidney function today. It was only after I visited one of the top cancer facilities in the country (MD Anderson) that I was placed on the path for the most effective treatment with strong consideration given to my kidney situation. So far that decision has resulted in remission of my Mantle Cell Lymphoma. And if and when it returns (which is highly possible) I will have established a relationship with the best in the country for treatment for that condition.

2) I want to learn as much as I can about my condition. I spend a good deal of time reading and trying to understand my situation. In the end, it is my life. I fully understand that is the doctor’s job but I want that to be a partnership and I want to take a very active role while I am able.

3) The use of GFR as a measurement of dialysis function and in particular PD time. I agree, although I have only learned that. GFR, in my mind, should give me some data point for any progress I have made. I now understand that my time on PD (per session) is not necessarily related to GFR but will be measured as I go onto PD. I also agree that PD may not last for a long period of time. When I get to that point I will have my permanent access and be ready to go on home hemo. That is, if there is no further improvement or a transplant in my future.

4) Accept dialysis as a way of life. I’m not sure I can ever do that. I’m not one to give up easily. I can sure appreciate the marvel of dialysis and what it has done for me so far. I can accept and appreciate it as the only choice I have at this moment. But, until the day I die, I will be working for a way off of dialysis that is medically sound and safe. In the meantime, I will make the absolute best of it and be thankful it is available.

Dr. Agar, I don’t know you personally, but I read about you and believe you are a real expert and a caring and motivated person in your field. I trust what you say and agree with almost 100% of what you say. I hope one day I can write you here that I am no longer on dialysis. I’m sure you would like that as well – but I understand you are quite doubtful that will ever happen (short of a transplant).

Thank you again for your thoughts and suggestions. They have made a difference for me and they are so greatly appreciated!

  • Max
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By the Dr. Agar, please don’t reply just yet (if you plan a reply). A significant thought just struck me. I will add it tomorrow.

Thanks.

  • Max
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Dr Agar,

Here is the significant thought that struck me after reflecting more on your post. That is, there does not seem to be one single source that provides the most pertinent information about my situation. That is the primary reason I want to visit a top research facility in this country and why I research the internet. By the way, the internet research is primarily visiting forums (like this one and others) where you hear real-life experiences. I have found that you can usually determine which post are “sane” and worth considering. While the team and experts that I have are great there is still information that has not been communicated by them.

Your post is a perfect example. Let me note below the information that I heard for the first time after a year on dialysis and discussions with at lease five other nephroligist about my condition. I will quote and pull from you reply.

1. “Phosphate accumulates more slowly and this, also, wouldn’t be likely to ‘budge’ … as you say” That is excellent information and certainly helps me in my self evaluation. I have never heard that before after many discussions with other nephrologist and clinic nurses.

  1. [B]Urea load and urea concentrations are complex: they are never ‘the same’, in what might otherwise seem a comparable inter-dialytic time-break: the urea load will depend on your dietary protein intake, your anabolic to catabolic metabolic balance (for that particular inter-dialytic period), your volume status (for that particular inter-dialytic period) … etc.

The same might be said for creatinine … though, here, throw in muscle activity and a few other variables as well.

No two inter-dialytic periods are even the same.

Looking at your data, I wonder if the higher urea and creatinine levels early on represented more a period where you were catabolic and were recovering from chemotherapy … and now you have settled into a more stable period of your maintenance therapy.

[/B]Again, that is excellent information. While I fully understand the concept, I would take a small exception to the idea that over a long enough period (10 or so measurements for two or three months) if there is a trend it should show and be a valid indicator of change. I fully realize the “gold standard” for a return of function is normal measurements of BUN & creatinine – which I am now far from. Your comment above regarding “higher urea and creatinine…represented more a period where you were catabolic…” You know what, none of my “experts” ever mentioned that as a possibility. After I first heard that from you in your post many months ago, my further research confirmed just what you stated. And, I believe it is confirmed by my completion of chemotherapy, which I now wonder whether I should have received advise to first fix my kidney problem before beginning treatment for lymphoma (we call that Monday Morning Quarterbacking here in the states).

  1. While your ‘labs’ suggest you are dialysis dependent, they also tell me you appear to be dialyzing well. This means you are feeling well, because your biochemistry is being well cared for through a combination of your dialysis and your residual renal function (RRF). But, your RRF, in my view, is likely to wane, over time … though this ‘waning period’ is going to be measured in months - even to more than a year or two = to your benefit. But, it also would appear that while your RRF is sufficient (for now) to allow your ‘numbers’ to look good, the risk of persisting too long with your ‘experiment’ of ‘missed dialysis days’ is that this while ‘safe’ to do so now, there will come a point where that safety turns to additive risk.

Again, that is excellent information. My own research and input from my team certainly confirms expected reduced RRF over time, but the comment regarding “feeling well” due to a “combination of dialysis and …RRF” is not something that has been explained. I fully agree. By the way, the “feeling well comment” does not apply to the time immediately following dialysis. In fact, during the first 90 days on dialysis I noticed no change after dialysis. That changed after about 90 days. I now feel terrible and totally exhausted within 30 minutes to an our after dialysis. I typically come off of dialysis in the clinic around 6:30 PM. As mentioned, I am fully exhausted and sleep like a baby that night. I normally feel fine the next AM.

  1. At this point, it boils down to a judgment call to decide which way to jump … to RRF (but deep CKD5 and, likely, as time passes, the onset of increasingly symptomatic non-dialytic CKD5) or dialysis + RRF (and the preservation of health and well-being). I suspect your advisers have recommended the later. They are best placed to continue to give your advice – I am NOT. Their step-by-step plans for you have, in my view, been right on the mark. I would suggest you learn to trust them, and to follow their advice. Seeking further wiggle-room from a net-based adviser is, in my view, unwise.

I must say that I do trust them, but they are not infallible. Plus, I am a big proponent of “The Wisdom of Crowds” which is a book I read a few years back that proposes a concept that I have found to be quite valid in all areas of my life. Here is a link to the book: http://amzn.to/1yWCP8A. The other aspect is my belief that generally the top centers in the country will have the most up to date information – which can possibly relate to better treatment.

  1. He is ABSOLUTELY right. For heavens sake, Max, learn to trust the man. He is on your side. He is on the right wavelength in all he is saying. He is giving you faultless advice. It is time you stopped twisting and turning for more and more advice on the net, and gave your team the trust they appear to well deserve, and work with them.

This comment was made in connection with my comment regarding fluid removal. I have never been told by the physician in the clinic that I should be overly concerned about fluid removal – actually, just the opposite, they want to remove more. That suggestion was only recently made by the doctor I saw in the home dialysis section. Those home dialysis people have to be smart. Right :-)? I was also told that by one other nephroligist who I saw at MD Anderson that was connected with the lymphoma clinic. The local clinic wants to pull more fluid – not less. I now pull .8 liters per session and may move to zero. This is totally at my direction since I continue to make normal urine and have no signs of fluid retention. The unit wants to use the crit-line which they say should increase my pull to at least 2L or more.

Dr. Agar, thank you again. I can’t express enough how greatly I appreciate and respect your opinion. Have you ever thought of opening an office here in the states :-)? When technology brings us the new “scram jets” you could end up with an hour or two commute. Of course, by then stem cell or artificial kidneys may be all the rage.

  • Max