Some thoughts for the newly diagnosed

[tigtink]

IHD is such a wonderful resource, but there hasn't been much activity on the Pre-Dialysis board lately. As I wait not so patiently for a transplant and struggle to keep my spirits up and hold off dialysis while I wait, it occurred to me that maybe it might help me to share some of the things I've learned over the past few years with people who might come here when I did--late stage 3 and early stage 4. Veterans here remember how overwhelming that time period is and how helpful IHD can be during those desperate anxiety-filled early days of learning about what it means to face CKD.

For me, even though my search for information began when my GFR was about 28%, I did not break through my denial until I was below 20% and my nephrologist, without preparing me or discussing dialysis or transplant options, suddenly referred me to a vascular surgeon for evaluation for a fistula. Then it all became very real for me very quickly. The day of that surgery was an awful day for me and the larger-than-expected armpit to wrist scar on my arm and an overnight hospital stay after the surgery woke me up to the seriousness of my situation. Fortunately I had been reading IHD and following MooseMom's quest for a preemptive transplant. Her story and many others here inspired me to get on the transplant list, then multi-list, and my efforts to get listed led me to a number of lifestyle changes that I am convinced are responsible for my kidney function decline going from 1-2% per year to only about 1% over the past three years. In July it will be four years since my fistula surgery and thankfully I haven't had to use it yet. I haven't given up on hoping for a preemptive transplant even though the odds were much smaller than I initially realized when I first came here.

The thing that now makes me most angry and frustrated is that even though studies show the best treatment option in terms of long-term outcomes for ESRD is a preemptive transplant, the chances of getting one have always been small and now are getting even smaller because of the new transplant rules. Preemptive transplants are rare even with living donor transplants, and preemptive deceased donor transplants are even rarer. I fear that newly diagnosed CKD patients are not being given enough guidance early on to make good decisions about whether or not to try for a transplant and when to begin the process. Some are not even told a preemptive transplant is even a possibility.

If I could turn time back to when I was at 28% function, I would spend less time worrying about when I should get a fistula or what type of dialysis I was planning to choose and more time understanding the transplant process and deciding if a preemptive transplant is something I wanted to pursue. I still believe that even preemptive deceased donor transplants are possible for some of us, but the time to begin focusing on the transplant process is when your function is between 25% and 30%. That requires breaking through that early depression and denial, becoming your own advocate, and requesting early evaluation for the transplant list. Chances are your nephrologist will not even bring up the idea of transplant until much later, and by then you could have lost a couple of years on the waiting list making it that much more likely you will need dialysis before a transplant.

I'm not saying transplants are the best course for everyone. They are but one of many possible courses to follow with this disease and each of those choices has risks and benefits. I'm just saying consideration of a transplant should begin earlier in the process than it often is. I needed the fistula operation to kick me into gear, but if I had it to do over again, I would have started researching transplant centers and contacting them for evaluations much sooner knowing what I know now. I still believe preemptive transplants should be seen as a viable option, but don't count on the medical community to steer you in that direction.

Any thoughts on this from the veterans here at IHD?

[MooseMom]

Pre-dialysis patients certainly have their own unique concerns, so I am glad you posted this, tigtink.

I regret that your nephrology care team did not approach you with the topic of transplantation earlier.  My own experience was very different.  I won't repeat my whole story behind my fsgs diagnosis, but suffice it to say that when I was referred to the nephrologist in my PCP's practice, my egfr was in the mid 20s.  I remember very clearly him saying, "I don't have much hope for those kidneys."  He immediately referred me to one of Chicago's top transplant centers.  I guess he suspected that he had seen enough patients with fsgs to assume that my kidneys were going to crash sooner than later.

I went through the whole pre-tx process only to be told that my egfr was not yet low enough that they could justify listing me, which was fair enough.  However, they did keep my file and told me that when the time was right to come back to see them.

Once my egfr went below 20, my neph immediately sent me back to the tx center where I'd first interviewed.  He was very pro-active.  He also referred me to the tx center out of state where he thought I'd have a better chance to get a preemptive tx (UW-Madison); they told me that they had seen a fair number of his patients.

I spent 2 years on the wait list; I waited just like everyone else.  I was fully expecting to go on dialysis. 

I have absolutely no idea why any nephrologist wouldn't immediately broach the topic of transplantation with a patient who has a progressive renal disease.

I am not entirely clear why/how new UNOS protocols might make preemptive tx more difficult to achieve.  If someone could explain this, I'd be most grateful

[Simon Dog]

Do not give in - you can have a life on dialysis.

Do you own research.     It's amazing what the MDs don't bother to mention.

For example, they don't volunteer that all research in the area suggests that home dialysis patients have better outcomes that in-center .... probably because saying so would be tantamount to telling you that in-center patients get sub-optimal care.

What kept me going during my in-center time was knowing that the long-term plan (pre-transplant, if I get one) was home treatment.

Chances are your nephrologist will not even bring up the idea of transplant until much later, and by then you could have lost a couple of years on the waiting list making it that much more likely you will need dialysis before a transplant.

If you do start D, your waiting list time is retroactive to first dialysis date.

Another issue - your EPTS (Estimated Post Transplant Survival) goes down each year, it only due to age.  Once you hit 20% (age 53 with no co-morbities), you lose eligible for kidnesy with a KDPI (Kidney Donor Profile Index) scores of 20% or lower (ie, the prime meat).

[tigtink]

MooseMom, I am very glad you were referred early on for a transplant evaluation. That was not my experience. I was first sent to a nephrologist in January of 2010 when my GFR was in the range of 25-30%. No mention of a transplant was made in any of my visits until after my fistula surgery in July of 2013, even though I first dropped below 20% in September of 2011. Because I am type O, the wait for a kidney anywhere is long. In the fall of 2011, the chart provided by University of WI at Madison said the median time to transplant for type O was 894 days, or about 2 1/2 years. That same chart today at Madison shows a median wait time for type O at their center of 1,975 days, or about 5 1/2 years. That is the effect the new rules have had at Madison because anyone who started dialysis before I got on the list moves ahead of me even if they were approved for the list three years after I was approved. The list keeps getting longer and those not on dialysis get pushed lower on the list. There were 1000 people on the list when I joined three years ago and Madison has done close to 900 transplants in that time period, yet I am nowhere near the top of the list and can expect to wait another two years before I even hit the median time to transplant. So the new system works against preemptive transplants. Had I begun the transplant process in 2010 when I was at 25% it might have taken a year or so to actually make it on the list, but I would likely have had my transplant by now. Your nephrologist was proactive but many are not. My point in posting this was to encourage the newly diagnosed not to wait for a referral to a transplant center from their nephrologist. It is so easy in those early days to bounce between total panic and complete denial and not step up and take charge and self-refer to a transplant center. I spent a lot of time learning about fistulas and dialysis options when I would have better spent my time researching and talking with transplant centers and getting that whole process in motion. And even if I never get a transplant, the listing process forced me to face up to the seriousness of this disease and motivated me to make very important changes in my life that have extended the time before dialysis is required. I am lucky my nephrologist sent me for a fistula so early because it jolted me into action. In retrospect, the fistula could have waited a while but the transplant referral came way too late.

[MooseMom]

That is the effect the new rules have had at Madison because anyone who started dialysis before I got on the list moves ahead of me even if they were approved for the list three years after I was approved. The list keeps getting longer and those not on dialysis get pushed lower on the list.

This is the bit I don't understand.  When I say that, I don't mean that I am doubting you, rather, I don't understand the new rules well enough to understand why/how someone can move ahead of you on the list even though you were listed three years before they were.  Is it because of your blood type?  Do dialysis patients on the list get to "jump the queue" and move ahead of those not yet on dialysis but are listed?  Can anyone explain that?  My apologies for my ignorance on this topic.

I understand that my experience was much better than yours and that you were unlucky in that you didn't have a neph who was a better advocate for you, and I apologize if I came off as sounding like your feelings on the subject are somehow "less than".  I was rushed for time, and what I was thinking and should have made the time to post was that I was wondering if your experience is more common than mine was.  Are more nephs pro-active in discussing transplantation earlier with their patients with progressive disease, or are more nephs like yours?  What do you think?

I also understand that the point of your post was to educate and encourage newly diagnosed CKD patients to look at the possibility of transplant in case their neph does not, and I thank you so much for that.  Again, I regret perhaps sounding like your experience was irrelevant (that's how it sounded to me when I just now reread it!  I'm sorry!) because it is, of course, extremely relevant (and probably all too common, which is the real shame).

And of course you are correct that some people do panic and go into denial, wasting valuable time in getting listed.  These are the patients who would most benefit from having a more pro-active neph.

I think about you often, tigtink, and feel great frustration on your behalf.  I wish I could suggest something to help you.  I am hoping that your kidneys give you adequate function long enough to avoid dialysis altogether.  What I am really hoping for is the creation of new technology that would make dialysis and cadaveric transplantation redundant and archaic.

[iolaire]

That is the effect the new rules have had at Madison because anyone who started dialysis before I got on the list moves ahead of me even if they were approved for the list three years after I was approved. The list keeps getting longer and those not on dialysis get pushed lower on the list.

This is the bit I don't understand.  When I say that, I don't mean that I am doubting you, rather, I don't understand the new rules well enough to understand why/how someone can move ahead of you on the list even though you were listed three years before they were.  Is it because of your blood type?  Do dialysis patients on the list get to "jump the queue" and move ahead of those not yet on dialysis but are listed?  Can anyone explain that?  My apologies for my ignorance on this topic.

The late 2015 wait list change now counts time on dialysis as wait time. So say you are waiting three years (since approval for joining the wait list), but someone who was on dialysis for four years decides to join the transplant wait list, as soon as they are approved they have credit of four years on the wait list. 

I'm sure that had a fairly huge one time effect of adding people with a decent about of wait time to the list.  Going forward I don't think it will be as significant.  Some people will show up with time from dialysis but it would not be as large as any reset in 2015.  I'm sure there were people who were on the waitlist (started after dialysis) that had their waiting time increase a good amount to the dialysis start date.

[Simon Dog]

I don't understand the new rules well enough to understand why/how someone can move ahead of you on the list even though you were listed three years before they were.

First off, the list is not a FIFO queue but point system.   People commonly associate it with a queue since you gain a point for each year on the list.

One way to "jump ahead" (ie, start with extra points) is to be a long term dialysis patient who did not bother to get listed for the first few years of dialysis.   This person is given credit for time since their first dialysis.

Another way is to have a high PRA score of 99%.      This means you are sensitized to the antibodies of at least 99% of potential donors, so you get an offer when a match comes in.  You do not want to get ahead on the list this way .

Another way to get a boatload of bonus points is to have a history of a solid organ donation (Kidney, Liver lobe, etc. - bone marrow, blood and fecal donations don't count).   It is not good publicity for newspapers to do human interest stories on kidney donors waiting years for a transplant when their remaining one fails.   

And finally, there is the rule "Top 20% kidneys are reserved for those in the top 20% of estimated survival time", so if your EPTS is > top 20%, you will be skipped over when a kidney with a KDPI < 20% comes in.

[MooseMom]

One way to "jump ahead" (ie, start with extra points) is to be a long term dialysis patient who did not bother to get listed for the first few years of dialysis.   This person is given credit for time since their first dialysis.

OK, yes, I knew this theoretically but didn't really relate it to tigtink's situation.  Thanks for this, Simon Dog.

[tigtink]

No need to apologize MM. I did not take offense at all. The new rules are not that hard to understand. Someone can walk into Madison tomorrow and apply for their list. If they started dialysis before January 14, 2014 (the day I was approved for the list) they will have more points than I do and move ahead of me on the list even if they don't get approved until later this year. Partly it was bad timing on my part since the jump in these long-term dialysis patients joining the list will eventually level off but with the wait times getting longer someone early in stage four has no time to lose if they want a preemptive transplant. My guess is because they are getting so rare, especially for those who have to wait for a deceased donor, many nephrologist aren't in a hurry to refer. I've been reading IHD for years and it seems more common to me that those referrals are made later rather than sooner, but I can only go by my experience. I found a study in the late 1990's that showed only 2.5% of all transplants were preemptive even then. It has to be even lower now. That suggests to me that the system and the doctors are not very efficient in helping people get listed early enough to minimize time on dialysis.

[MooseMom]

Thanks for that, tigtink.  I understand better, now. 

[SooMK]

Thanks for this post tigtink. My nephs were very clear about expecting me to go out and find a living donor so I could have a pre-emptive transplant. In fact, my donor found me. As my eGFR approached 20% my friend asked if there was anything she could do and she ended up giving me a kidney. I moved from MA to NY as my kidney function dropped and my nephs in both places were all about encouraging a pre-emptive transplant. My sister is now facing declining kidney function and I would like to have her read your post. I have suggested IHD to her several times but she is in that scary place that I understand too well. I also feel guilty that I was, through little effort on my part, able to have this transplant. I don't know how to support her. It doesn't feel right to push her to try to be better informed when she prefers to hope it will all just go away. I do not think her neph (in Michigan) has talked about fistula, dialysis options or transplants with her.

[iolaire]

I found a study in the late 1990's that showed only 2.5% of all transplants were preemptive even then. It has to be even lower now. That suggests to me that the system and the doctors are not very efficient in helping people get listed early enough to minimize time on dialysis.

Plus you have the wait. So I'd guess that most people don't have a low enough eGRF to list early enough to make it through the multiyear wait list prior to dialysis. I'd guess the only people getting preemptive transplanted are those with donors.

[tigtink]

Iolaire, you have summed it up perfectly. The most recent statistic I found was from the NIH for 2013. Of all the kidney transplants done in 2013, only 2.6% were preemptive, and most of those were from living donors. That was before the rule changes in 2014. So on the one hand, a preemptive transplant is almost universally considered the preferred treatment for ESRD in terms of best long-term outcomes, yet for someone newly diagnosed the odds of getting one are pretty slim, especially without a living donor. Clearly if all nephrologists were as proactive as MooseMom's was there would be more preemptive transplants. I have learned during the transplant listing process never to depend on a nephrologist to lead the way in either getting me on or keeping me on the list. If I had known what I know now, I would have picked up the phone myself when I was at 25% function and called several transplant centers, done my research, and began working toward being on the list without waiting for a nephrologist to suggest it. It is so easy in the beginning to "wait and see" before taking action, and many nephrologists seem in no hurry to get things moving.

SooMK, I hope your sister can get past some of her fears and learn about her options. The problem with that early "hope it will just go away" phase is that valuable time is lost and options that would have been available start slipping away. No doctor, no matter how good, has as much invested in my life as I do. I did not even know I could initiate the listing process myself back then. I was waiting for a doctor to do it for me. I lost about two years by not taking charge of the process sooner, and the longer this goes on the more of a challenge it is for me to keep my motivation up to stay on top of everything and keep dialysis at bay. I can't go back and change the past, and I have no control over the allocation rules, but if even one person can learn from my experience and increase their odds of a preemptive transplant, then I am glad IHD is available for me to share my story.

[MooseMom]

Thank you, tigtink, for this discussion.  I am certain that you've saved many pre-D patients some valuable time.   

[SooMK]

One of the great values of IHD is that non registered users can read the forums and many do. I'm sure many newly diagnosed CKD patients increase their knowledge of what lies ahead because of posts like yours Tigtink. Thank you.