Anemia treatment, $, and quality of life

[fearless]

It seems that, in the U.S. at least, a hemoglobin of 10 is considered adequate to sustain dialysis patients.

I have been anemic for 20 years due to kidney failure.  Unlike many others, anemia was one of the first manifestations of my disease.  The cause was verified by a test to determine just how much erythropoeitin my kidneys were making in response to my falling RBC levels.   I've experienced hemoglobin as low as 4.2.  A couple of months ago I experienced a hemoglobin of 12.7 - the highest I've experienced in many years, since with treatment (8 years on dialysis) my hemoglobin was generally between 10-11.5.

I think it was a special gift, or curse, that I experienced that 12.7 Hg just before I switched from peritoneal dialysis (where I administered epogen to my self weekly) to hemodialysis (where my hemoglobin was allowed to drop to 9.8 before i was administered epo, whereupon it dropped to 9.2 before the dose was adjusted - then up to 9.5, then down to 9.4)  i know that eventually they will get me up to above 10, but then what?  Seems that they'll get me up to 11something, then let it go til it drops below 10 again?

I know there's growing controversy (somewhere above me) about what is an advisable hemoglobin for dialysis patients.  But friends, i tell you, having spent a month below 10, i can say that life is not liveable for me here.  I have no one to wash my dishes, clothes, buy my groceries, cook, drive me to and from dialysis, maintain my car, etc. 
When my Hg was up to 12.7 (I didn't know it was there until the next week's tests) I took a walk along a wooded path, where I had walked many times before.  But unlike those many times before, my lungs weren't tight from exertion, my steps weren't labored, and i didn't have to sit and catch my breath frequently.  I felt hope for life.  And for the first time in years i thought about the future with a little light in my heart.

Now my life has stopped and I'm simply waiting for the epogen and weekly readings to get me back up to at least 11 Hg, where my doctor has said he will help me to go.  But I also hear the rumblings:  it won't be long til 10 is the new 11.

If there are contraindications to keeping our hemoglobin up towards 12 (which is the lowest end of the normal, healthy range) ...what about not being able to exercise?  And what about missing out on a real life because you're just too damn tired to live it?  What is the point of extending a life of laying around feeling depressed because you're incapacitated to meet the physicality of life?

I know that Shad Ireland, a long-time dialysis patient and advocate of patients, has spoken eloquently about the wisdom of maintaining the sub-10 hemoglobin metric as part of the QIP:

http://www.shadirelandfoundation.org/news/official-position-public-statement-from-shad-ireland-athlete-and-advocate-living-with-kidney-disease/

anyone who has the ear of a person who might have a voice or some power in this matter should whisper this wisdom there!  Contact your legislators!  And we all need to advocate for the maintenance of good anemia control, for the benefit of our own lives and the lives of everyone who has anemia from kidney disease.

[Willis]

I have the same problem. I still work a full-time job and also exercise and play a competitive sport. Once, my unit accidentally let my hgb get up over 13 and it was the best I felt in years. But no, that exceeds Medicare guidelines so they cut me off and I crashed for the next three weeks until my next labs. Even earlier this year the guidelines were 10-12 but apparently they are going down to 9-11. So now I have to be "kept" below 11 and my  ability to compete is gone.

As far as I know, even if a doctor could justify MEDICALLY a higher level for a situation like mine where my oxygen requirements are demonstrably higher, there is no mechanism for Medicare to make exceptions. In my opinion it's not about health at all but rather is a simple cost decision since EPO is so expensive. All I get is the B.S. that it's "different" for ESRD patients and the normal limits of 13-18 printed on my lab reports don't apply. I'm alive and that apparently is the standard. Quality of life is not a factor. That's probably why my PD nurse says that only me and one other of her dozens of patients are able to work full-time and live an active life. But they are doing their best to drive me onto the disability rolls. If I could afford it I'd quit working and then maybe I'd have enough energy left-over to live my life.

 

[jeannea]

I know I'm exhausted all the time. Some of it must be the anemia.

[fearless]

We really really need to band together somehow and lobby this issue.  As a group, the vast majority of kidney patients are too damn tired and too tied to their therapy to lobby our government for this sort of standard.  Somehow we need to overcome this barrier.  I truly believe the cost of care for patients left at 10 Hg far outweighs the cost of maintaining a better status on anemia.   Some of the negatives are listed in Shad Ireland's statement.

[sullidog]

My hg has to get a 9 or below before I start to feel really bad but as of now my dr. doesn't let it go below 11.

[fearless]

Remaining at a lower Hg for an extended period is what will cause problems long-term and affect your stamina for daily living.

[Rain]

I spoke with my doctor about this last week since I wanted to change my epo shot frequency in hope of getting my hemoglobin numbers up.   He mentioned that 110 g/L is the new number dialysis patience because the epo drugs have been known to cause blog clotting for older patients.  But since I'm young and in shape he will allow my hemoglobin to go up to 115 g/L since I end up with more energy.  The longer we use these drugs we are starting to discover the long term side effects.

Talk to your doctors and see what number might be good for you.

[justme15]

geez, i wish my hgb was 9-10!! my hgb averages about 7.5. and it has been that way for almost 2 years. and I work a moderately physical job. although I do find myself turning down social events and opportunities to exercise so that I can sleep.
i get procrit shots weekly and an occasional blood transfusion as needed.  I wish I didn't need procrit as often, because it increases your stroke risk and is causing my BP to be elevated.

[fearless]

justme15,
where are you? are you on dialysis?
7.5 is not acceptable.  And no one should have to get blood transfusions for anemia if epo or procrit work for them (remember this is my opinion, not medical advice)
Blood transfusions increase the risk of various infections, and decrease the chance of better eligibility for transplant (you develop antibodies)

[amanda100wilson]

They are failing to meet Medicare guidelines if is that low.  Itis not good for your heart plus if you are a transplantcandidate, blood transfusions= antibodies which is not good.

[fearless]

There are studies out that dialysis providers are using to justify the lowered standard for anemia treatment.  But those studies may be flawed.  Although it will not be said, the motivation behind the drop is monetary.  Epogen is extremely expensive, and is not reimbursed by Medicare at rates which the "providers" find acceptable to their profit margin.

(this is my opinion, and it's shared by others with whom I've spoken)

[justme15]

i have a kidney transplant that is failing.  just recently, as in a few weeks ago, my hgb was 8.6. this was after a blood transfusion a week before.  the docs don't have any idea why i'm not responding well to the procrit, but they continue to give it to me weekly, otherwise my hgb will drop drastically.  and not only do I get it weekly, I get a pretty high dosage too, 50,000 units!

[Meinuk]

To save myself a lot of typing, I'll just post a link.

Recent changes in Anemia Management and Hgb is discussed here:

http://ihatedialysis.com/forum/index.php?topic=24560.msg396565#msg396565

[fearless]

Meinuk,

Thank you, thank you, thank you for directing me to that page.  I followed up by reading also Bill Peckham's statement on his blog.  I wish I had known last summer about what was coming down the pike.  Obviously I am woefully uniformed, and if I hope to help in these matters at all I need to become educated.  When I was on PD, I sort of blissfully kept myself separate from the world where decisions about my care were made.  I trusted my doctor (now retired) and I always found a way around limiting my epo - and kept my Hg in a good range, and below 12.  Now, with in-clinic hemo, I was left to languish, and told that although I would be taken up to 11-something, that once i reached 12 i would be allowed to drop again until I was below 10, and then would be brought up again.  WTF?  For me, that's like saying: for a few weeks you will be able to do some work, get your laundry and shopping done, take a walk, then for a few weeks you will want to sleep 10 hours and lay on the couch all day.  I don't know why it's so extreme for me, but it is.

God bless Bill Peckham (and yourself) for digesting the rules and regulations, and responsible parties here.  I totally support the goal of giving the docs the ability to set whatever anemia goals they have for individual patients, and Medicare basing reimbursement on the providers meeting those goals.  Why not?  I don't see this as a door for abuse. 

Thank you again so much for your reply here.  I am following the paths you've shown to try to help my cause (and the cause of all ESRD patients).

[Meinuk]

 

We were ALL in your shoes once Fearless, just beginning down the advocacy path.  Luckily, we found each other to help to advocate along the way. 

[RightSide]

Aranesp and Epogen are known to double or even triple your risk of stroke, even at a hemoglobin level of 10.0.  And you're already at a higher risk of cardiovascular disease anyway, due to ESRD.

The problem is worse than they originally realized--so acute that the new FDA guidelines are not even to target a specific hemoglobin level.  Rather, just to use the bare minimum of the medication to keep you from needing transfusions.

http://www.rxlist.com/script/main/art.asp?articlekey=146269

Believe me, I know how tough this is, from my own experience.   

[justme15]

Aranesp and Epogen are known to double or even triple your risk of stroke, even at a hemoglobin level of 10.0.  And you're already at a higher risk of cardiovascular disease anyway, due to ESRD.

The problem is worse than they originally realized--so acute that the new FDA guidelines are not even to target a specific hemoglobin level.  Rather, just to use the bare minimum of the medication to keep you from needing transfusions.

http://www.rxlist.com/script/main/art.asp?articlekey=146269

Believe me, I know how tough this is, from my own experience.

yes!!!! this was the point i was trying to get to.  i thought procrit and aranesp had side effects that docs were being cautioned to use it as less as possible.  in fact, my doc suggested that I take enough procrit to get my hgb to 8, and then significantly decrease the dosage or stop it at that point!

[fearless]

A hemoglobin of 8?   Have any of you lived with a hemoglobin of 8 for, let's say, 5 months or more?  What was your life like?  Did you do your own grocery shopping?  Cooking?  Laundry?  Were you able to engage in any mentally challenging activity? 

I hope to examine the studies done which threaten such an increased risk of stroke, heart attack, etc.  Who was examined?  There are so many concurrent problems for ESRD patients.  What about the risk of increased physical lethargy due to anemia?  The risk of these same problems is greatly increased by anemia itself, and especially with the sendentary lifestyle that anemia entails.  Aren't long-term patients (who are the ones who would need ongoing high level doses of the drugs) the ones who would have the highest risk for cardiovascular problems anyway?
Why did this information come to light as Medicare changed it's reimbursement policy?

Why can't my doctor and I decide whether or not I want to take the risk?  That is, whether a better quality of life in the now is worth the risk of stroke or heart attack in the future?  And if my risk for heart attack and stroke is increased by ESRD anyway, where is the trade-off?

If one patient feels fine with a Hg of 9, then that patient's doctor can keep them there, and, if it's really safer, so much the better.
But if another patient need's 11 to live their life, then that patient's doctor ought to be able to counsel her about the apparent risks, and prescribe accordingly. 
Why is this being taken out of the doctor's hands?  Why is a government agency able to dictate what's appropriate treatment for individual patients?  Let all the information be disseminated to the doctors, and let them decide.  They're the ones who know the patients.

A patient who engages in regular cardiovascular exercise will reduce his risk of heart attack, stroke, etc.  Has there been any study of this possibly balancing out the risk posed by the drugs which enable a person to engage in such exercise?

[KarenInWA]

I was on in-center HD from April thru November of this year. My hgb once got as high as 13.2 (and I must say, I felt great at that level!), and yes, they discontinued my epo for a while. But, they started it up again when it was 11.2.  My clinic (and my neph) never let my hgb go low again. When I started D, I was at 8.2 for the first couple of months, so the epo took a while to kick in. Before I started D, I would get Aranesp shots as an out patient at the hospital. I missed the last shot due to starting D, so it didn't take too long for my hgb to fall like it did. So, as long as I wasn't over 12, I received an epo shot at every D treatment.

I was private pay insurance, in case you're wondering.

KarenInWA

[justme15]

as I stated earlier, I have been living with a Hgb of 7-8 for almost 2 years now.  I am a full time physical therapist, which requires critical thinking, energy, and movement.  I get groceries and keep the house relatively tidy.   i'm not saying that everyone should/could live this way, but it can be done.

check out these articles by Dr. Ajay Singh, particularly the one named Dialysis Unplugged: Those Rabid Anemia protocols

http://www.thekidneydoctor.org/search/label/anemia

[fearless]

Holy crap.  I'm jealous.

I think there are other factors that come into play, of course.  If the Hg is low, the hematocrit may be low, and in kidney failure there may be loss of other blood proteins as well.  This causes swelling and I think can contribute to concomitant feelings of weakness.  Other things that affect weakness are things like myoglobin, which helps conduct oxygen in the muscles.  When iron is optimized throughout the body, a lower blood Hg may have a smaller effect on stamina.

however, having said that, it's also known that long-term anemia contributes to secondary organ dysfunction or damage, including heart arrhythmia and heart failure.

I'm all about the feeling baby!  If you're doing well at 7-8   I'd say you are unusual (healthy male=13-18), but lucky! 

Thanks for the link!

[justme15]

I am tired, don't get me wrong. but I am still able to function ok right now. if my hgb could get higher, safely, i'd go for it.  but i am hesitant to take more procrit because the consensus seems to be that it can be harmful at certain dosages and frequencies.

[Bill Peckham]

Aranesp and Epogen are known to double or even triple your risk of stroke, even at a hemoglobin level of 10.0.  And you're already at a higher risk of cardiovascular disease anyway, due to ESRD.

The problem is worse than they originally realized--so acute that the new FDA guidelines are not even to target a specific hemoglobin level.  Rather, just to use the bare minimum of the medication to keep you from needing transfusions.

http://www.rxlist.com/script/main/art.asp?articlekey=146269

Believe me, I know how tough this is, from my own experience.

yes!!!! this was the point i was trying to get to.  i thought procrit and aranesp had side effects that docs were being cautioned to use it as less as possible.  in fact, my doc suggested that I take enough procrit to get my hgb to 8, and then significantly decrease the dosage or stop it at that point!

Rightside the FDA guidelines clearly state that for people who are using dialysis:

• Begin ESA treatment when the hemoglobin level is less than 10 g/dL.
• If the hemoglobin level approaches or reaches 11 g/dL, reduce the ESA dose or suspend treatment.

The two primary studies that people point to to support their concerns about EPO are the CREATE and CHIOR studies, here is a link http://www.medscape.com/viewarticle/539039 but you can read a lot if you Google them.

The problem I have is that the studies specifically exclude people using dialysis - they are studies of people with a CKD3 and CKD4. When people look at the data for those using dialysis http://jama.ama-assn.org/content/303/9/857.short?home they find that there is a mortality risk for Hgb below 10.

I think you'll find the DCI comment on the proposed QIP interesting (PDF attached). Basically they're telling CMS that a target range form 10 to 12 makes sense and they're going to keep doing it and CMS can keep their QIP money. You can read all the public comments on the QIP here.

[fearless]

Sincere thanks Mr. Peckham.
Will you please let me know if I can be of any help to you in your "hobby"?
I'm curious, if you are willing: how is it that you haven't had an epo dose for four years?!  Were your kidneys still producing erythropoeitin all this time?

[Bill Peckham]

Early in my CKD I was very anemic. In 1987 and early 1988 before Epo I had a transfusion just to keep it above 7. When I started dialysis in 1990, I don't think EPO was wide use but by 1991 I was getting three times a week, but a pretty low dose ~2,000 mcu. That lasted to 2001 when I went home and started to dialyze more frequently.

Once I started to dialyze more frequently my Hgb stabilized arounbd 14 without EPO, particularly when I switched to a new home hemodialysis only machine, the Aksys PHD. I think a lot of anemia in people who use dialysis is due to red blood cells not living as long in fluid that is under dialyzed. I think when I started dialyzing more frequently (cleaner fluid in the blood compartment) and using ultra pure dialysate ( less compartment activation (inflammation) which can contribute to anemia). But you can also have too much of a good thing.

In 2008/2009 my hgb kept climbing. I had to dump blood about once or twice a month. And while my hgb said I should feel good my body felt like I was profoundly anemic. They did a lot of tests and even found a mass on one of kidneys which I ended up having out. The idea was then that the tumor was producing excessive erythropoietin but once the tumor was out my Hgb climbed back up after a initial decline post surgery.

I feel pretty good most of the time these days, my Hgb the last few months has been between 13.5 and 14.7  I chalk it up to luck, frequent/long dialysis, ultra pure dialysate and luck.

As far as advocacy I'm trying to take a break myself. But I still dabble. There are some good groups to connect with just depending on your interest. Mostly there is a lot of reading involved the way I did it.