By Peter Laird, MD
Renal replacement options include transplant but many patients who suffer from anemia while on dialysis have had blood transfusions that produce antibodies that reduce the possibility of ever having a successful transplant. However, a serendipitous insight by a Cedar Sinai doctor led to the current treatment protocol with IVIG. I came across an interesting video detailing one patient's story of how IVIG has helped her and the laymen account of IVIG that is actually quite informative by her mother even if she does get a few details not quite right. It is also quite informative about in-center dialysis and what happens to an other wise healthy young woman who only recieved 3 hours, thrice weekly dialysis. No wonder people have such a negative view of dialysis:
The story of saving the government billions of dollars and the fact that they only pay for meds for three years after a transplant I am sure are part of the reason for such a push towards renal transplant by the government. Thankfully, IVIG now offers patients with high PRA the chance to go forward with "the gift of life" for a transplant. Medscape had a recent review on how IVIG works in this situation.
Intravenous Gammaglobulin (IVIG): Clinical Use of IVIG in Kidney Transplantation
Data from our group and others suggest that IVIG therapy given to highly sensitized patients results in reduced allosensitization, reduced ischemia-reperfusion injuries, fewer acute rejection episodes and higher successful long-term allograft outcomes for cardiac and renal allograft recipients. We and others have confirmed that pre-treatment with IVIG results in reductions of anti-HLA antibodies, and is effective in treatment of allograft rejection episodes.
Unfortunately, the manner in which the patient in the video above heard about plasmapharesis was from a concerned nurse and she then did an internet search finally finding a doctor who stated, I have something better than plasmapharesis, I have IVIG. It is not simply optimal dialysis that patients do not hear about in dialysis units as apparently neither the mother or the patient were ever aware in this video, but also the different transplant options as well. This patient had only 3 hours thrice weekly dialysis which by many studies does place her at high risk of complications and death as was rightly stated. The issue of informed consent for dialysis patients is well documented for the lack thereof as this case all to well demonstrates.
Learning by "osmosis" about the type of treatment that ultimately gave this patient hope is an all too common story in the dialysis industry. (InformedConsentRLockridge.pdf) IVIG is one of the true wonder drugs of medicine used for many autoimmune diseases that is now one reason more patients are now candidates for this renal replacement option, but it is a quite sad commentary that patients have to luck upon information of this type on their own in many cases. Sadly, the patient in this video has an undo impression of dialysis from her individual undertreatment. I would hope patients in the future will not go through her poor treatment, but sadly we have not yet addressed optimal dialysis issues in-center in this country. We still have much work ahead of us.
Great Post Peter... It is very unfortunate that many centers/nephrologists do not practice informed consent. I have known several doctors who feel threatened when a patient wants to be involved and starts asking questions.
Many docs feel they are above you and feel they will be the ones to make any decision as we are just lowely patients who know nothing. I have seen this all too often in my personal experience.
I am very blessed that Dr. Lockridge is my nephrologist. He puts everything on the table and discusses in detail everything you need to know in order to make a decision. He puts his patients first and truly cares for each of his patients.
Posted by: Brian Riddle - Lynchburg, VA | Thursday, January 06, 2011 at 08:13 PM
Thanks Brian, you are indeed fortunate to have a doctor as sensitive and informed as Dr. Lockridge. He took the data from the Toronto experience and instituted his own nocturnal dialysis program in VA. Would it be that all nephrologists would follow suit. It is all about respect and patient autonomy, something clearly lacking the dialysis centers in general.
Posted by: Peter Laird, MD | Thursday, January 06, 2011 at 11:37 PM
One thing I worry about is how different my experience with my neph will be once I actually start dialysis. I do believe that I have received very good pre-dialysis care, but I also believe that one area in which my neph fails is patient education. Most of what I have learned about my condition and future renal replacement therapy options has been through online resources. I am more comfortable doing my own research in my own time than I am asking questions of my neph when I sense he doesn't have a lot of time because he has lots of patients to see. This arrangement has worked fine for me so far.
But this won't be so great once I start dialysis because that's when a team approach becomes vital. I'll need to be more assertive in my queries. It's up to me to set the tone for all question and answer periods regarding dialysis. I am fortunate in that I don't think I've ever met a doctor who has ever made me feel "lowly". I don't think it would ever occur to me to feel "lowly".
Posted by: MooseMom | Thursday, January 06, 2011 at 11:57 PM
Wait a minute. I've just viewed the video, and gee...they make it sound so very easy. Also, they said that IVIG is used in the treatment of autoimmune disorders like those that attack the kidneys. Well, that's pretty much the definition of fsgs which is what I have. Is it true that IVIG is used to treat this disease? Is this yet another thing we have to learn by osmosis, or do these two women just have the wrong end of the stick?
Posted by: MooseMom | Friday, January 07, 2011 at 12:34 AM
Brian, OH WOW< you are so very, very right.... The threat of an educated, informed patient.. WOW.. one who might point out preventable errors. I am reminded of some surveys I recently reviewed that had left out very VERY pertinent information about consent for reprocessed dialyzers.... just another example of not providing sufficient information that will result in patients making informed choices and decisions. If a patient is unaware of the side effects that can happen with reuse,, they might not agree to such.
Roberta Mikles - Dialysis Patient Safety Advocate
www.qualitysafepatientcare.com
Posted by: roberta mikles | Friday, January 07, 2011 at 05:18 PM
Dear Moosemom,
IVIG has been used in combination with steroids, Rituximab and plasmapharesis for both primary FSGS and recurrent in transplants. Not much is written on this subject but in a couple of studies it looked promising.
Unfortunately, as Bill Peckham pointed out to me a couple of weeks ago, nephrology has the lowest number of completed studies in the last 30 years of any of the medical subspecialties. FSGS is no different with much more study needed.
Posted by: Peter Laird, MD | Friday, January 07, 2011 at 07:30 PM
The concept of participatory medicine is one that seems to be talked much about on one hand: how well it is actually lived in patient experience is another.
Even in this day and age I can imagine that many providers do not like or encourage patient limitations, nor having to comply with regulatory requirements that dictate specific elements must be included in all consenting forms. Add to that the building social momentum for actual engagement with a patient who wants to talk and may actually have found more information on the internet by looking through unconventional routes, and you have the building pressures that unseat entrenched ideas that a patients job is to follow what they are told.
True medical infomed consenting is a dialogue, joint decision-making that only occurs when the patient and provider are on equal terms: otherwise, patients will recognize the power dynamics and may not actually feel comfortable in expressing their needs, concerns, and most likely, FEARS.
Posted by: Martin Ethridgehill, MBA, CHCQM, FAIHQ | Saturday, September 10, 2011 at 12:39 PM