Transplants, ESRD and African Americans

[LarryG]

 
I am 12 weeks post transplant. It has been the best thing that has happened to me since I was diagnosed with ESRD and the 3 and a half years I spent on dialysis. Though grateful for the time I was on dialysis I still hated it. I was very unhappy and angry,and at no ones fault but my own. I have had this discussion with this group before and there was many views positive and negative on how I should had felt. I was told originally that I had to wait 5 to 7 years to get a kidney and I found that unacceptable. I could go into a long dissertation but the bottom line is I started employing all my options in finding the quickest way to find a donor and get off of dialysis as soon as possible.Not everyone can get a kidney and not everyone tries, but if you can you should and it does not take ten years if you are willing to put the effort into it and do the research. I am an African American and statistics show we are the most to be affected by kidney disease and the last to get transplanted. I have learned that a lot of us are not educated in the facts of how to go about achieving a transplant and educating our selves and others. I was recently invited by the Illinois Kidney Foundation to speak at an event about the myths surrounding donor awareness and transplants in the African American community. I am so happy to help others if I can.
Larry
 

[tyefly]

Larry..... I am so glad to hear that you are doing well..... and helping others in education and hope.... I look up to people like you who tackle the odds... your journey has been special and I hope the best for you and look forward to hearing more on how you are helping not only us but others....

Great Joy   

[MooseMom]

LarryG, I think it is absolutely true that the African American community does not get enough pre-dialysis education and care, and it really angers me.  I am going through Rush as my transplant center.  When I went for my pre-transplant evaluation, I was chatting with the surgeon, and he told me that Rush's catchment area is mainly comprised of African Americans, and more often than not, their first contact with their renal disease is when it has reached ESRD and it lands them in the hospital.

You are right...African Americans do seem to be hit especially hard by CKD, but I honestly feel that the true underlying problem is the lack of good pre-dialysis care available within your community.  Dialysis CAN be avoided if good renal treatment is available, but we all know that too many people in our country, no matter their color, find preventative treatment to be too costly.  So, more people end up on dialysis as a last resort.

Good for you for educating as many people as you can.  I would just like to say, though, that you are the beneficiary of rare good luck, the "human interest" story so beloved by the media.  There are many people out there who want just as badly as you did to have a new kidney and are trying their hardest to get one.  Just because you were successful and they are not doesn't mean they don't want it as much or are not working hard enough.  While putting in the effort and doing the research is great, you still need to be lucky enough to find someone who is compassionate and merciful.

I am so glad you are so willing to help others in this regard.  Who knows how many lives you might change just by promoting self-advocacy?  I wish you all the very best.

[LarryG]

MooseMom
I agree with you that I did have some incredible luck and having the donor I found and her willingness and determination to follow through with the work up was amazing. Even though she is originally from Haiti and she has lived in this country for a decade or more she is an African American. I her response to my need was truly a blessing. I knew another Black gentleman at the in clinic I was at who made efforts through his Church and received a transplant from an altruistic donor. But I also know too many who won't even try because that isn't what you do because of myths and taboos and in my opinion that is based on the lack of being educated to the needs of people who are going through ESRD, to put it nicely.

[okarol]

Maybe organize something for this day? http://ihatedialysis.com/forum/index.php?topic=19698.0

[MooseMom]

LarryG, which do you think are the biggest taboos and myths within the black community that pose the greatest obstacles to transplantation?  What do you say to your audience to help dispel those myths?  What kind of feedback are you getting?  This is a really important issue.

[okarol]

Here's are some articles that touch on the issues:

Health professionals urge blacks to consider becoming donors
http://ihatedialysis.com/forum/index.php?topic=7128.0

The transplant gap keeps more blacks waiting for kidneys
http://ihatedialysis.com/forum/index.php?topic=8978.0

[kyshiag]

I don't know much about myths and taboos but, for good reason, many African-American (particularly older ones) stray away from the healthcare industry because of their history of mistreatment of the race as a whole.  Like the poor and overlooked in many other societies, African-Americans have been unknowingly tested, alllowed to die and just plain denied services.  This is a distrust that took long decades to build and, unfortunately, will take decades to dispel.  My mother actually told me that she would never be a donor because she felt that if your organs were more valuble to the hospital than your life, they would let you die.  She also felt like the organs would go to non-minorites in a disproportionates number.  Was she right?  Who knows.  Does this accurately reflect her experiences as a child of segregation, Jim Crow, etc?  It sure does.

As far as the community, kidney disease, treatment and the host of other diseases that can cause kidney disease are the direct result of a cycle of influencers that will need a long-term, multi-facted attack if there is ever any hope of seeing it broken.

It is my hope that all of society get a better understanding of kidney disease.  In fact, if any one else asks me how many treatments my husband will need, I'll scream.  These are educated people but they just don't know.

K.

[MooseMom]

You are right; history has not been kind to the African-American community when it comes to medical experimentation, to put it mildly.  What happened in the past, say, re Tuskegee was immoral and sinful, and I can certainly understand the latent mistrust of all things medical.

If you were going to try to break this "cycle of influencers" as you so eloquently put it, where would you begin? 

[kyshiag]

It has to be multi-faceted and simultaneous.  One could start by addressing the mistrust, access to information about nutrition and information about disease with education and addressing the  lack of local qualified doctors and stores that offer more whole food options with a coordinated effort to place good medical centers/hospitals and higher standard grocery stores in minority communities (many of which have been designated food deserts).

The information component would need to address all ages that exist in the community and meet them where they are not just when the person has been given a dire diagnosis and is trying to digest a bunch of new information.

[MooseMom]

Kyshiag, are you by any remote chance posting from the Chicago area?  I've heard this exact complaint/remedy in the press here in Chicagoland, particularly the complaint that there are not enough decent grocery stores selling fresh foods in minority neighborhoods.  I've also read stories where barber shops are being utilized as places where information can be more readily disseminated, which seems to me to be a clever idea.

Re: mistrust, this might sound stupid, but I'd love to get your feedback.  Some years ago, I read about a new blood pressure medication that seemed to work particularly well for African-Americans.  There was resistance to the idea that a particular medication works better for one population than for another because it all smacked of racism, and the spectre of mistrust was raised.  Here comes the stupid part...not long after I read about this, there was an episode on "House" where a black physician prescribed this medication to a black patient who refused to take it because of this mistrust.  It was really interesting because I suspected that this was not entirely fiction.

I am pre-D and get my labs done many times a year.  I've always been intrigued by the fact that on my lab report, when the egfr is calculated, there is one value ascribed for an African-American patient and another for a non-African-American patient.  Do you have any idea what would explain that?  Is there a genetic component behind that? 

For 5 years, I took cyclosporine to dampen down my immune system so that it would slow down its attack on my kidneys (I have fsgs).  I'm one of those who reads all of those patient information pamplets, and the one for cyclosporine said that a lesser dose might be more appropriate for patients of Asian descent.  Again, I was intrigued by the possibility of inherent genetic differences between ethnicities/races and wondered how a doctor could act upon these differences that wouldn't engender mistrust.  What do you think?  How would you "address the mistrust"?

(OK, I know I'm blathering a bit, but I'm really interested in this. )

[rsudock]

At my previous D unit many of the members were African American and where not very educated about transplants and different modalities of dialysis. I don't believe it was b/c of a racism thing but a lack of info to all the general population about our options. Dialysis nephs, nurses,techs, and units are not advocating, educating, or supporting patients enough...no matter what your race.

On a side note my friend Pat told me once at dialysis " Us black folks do better on dialysis, then with transplants. I would never get a transplant again. I had a heart attack." Where did she hear that from? 

[MooseMom]

rusdock, I do agree that too many renal patients don't get enough information early enough to be able to stave of dialysis or to choose a modality that suits them.  My own neph has never spoken to me about dialysis, and I've been seeing him for 7 years.

I don't believe that African-Americans are specifically being denied education because of racism, but I do suspect that they, along with other populations that may not have access to good pre-dialysis care due to lower incomes, are victims of a general neglect.  To some, that in and of itself may be racist.

[LarryG]

I think almost everything that relates to the lack of education can be traced to racism and just mistrust of the system in the African American community. I think there needs to be more advocates teaching Renal disease prevention. I had no idea about the effects of my life st lye and what I might had done to help prevent my ESRD until it was too late. As I said before there are so many myths and misconceptions among the African American community we have to find a way to turn the numbers around.

[MooseMom]

Sadly, I suspect that people of all colors need more education about how their lifestyle influences their renal health.  CKD is reaching epidemic proportions; most of us realize that obesity can lead to diabetes, but I don't know how many people realize that diabetes can cause kidney failure, and I don't think many people at all know much about dialysis.  If they did, maybe they wouldn't eat that extra portion of fries or drink that million ounce soft drink.  But yes, I can see where lack of education directly stems from the neglect that comes from racism.

[jbeany]

I think preventative care is a huge part of it. 

The last issue of "Mental Floss" did a series about Cuba.  When the embargoes started, the Cuban government realized there would be no access to the life saving drugs being developed abroad.  The entire medical profession switched to a focus on preventative care, all provided free.  The life expectancy in Cuba right now is 77.  US life expectancy, with all the meds and treatsments available, is still only 78.  (This little stat ignores the fact that obesity is partially controlled in Cuba by government food rationing and a culture that involves walking or biking everywhere out of necessity, but it's still an important point.)

Of course, a lack of available nephs is an issue as well, regardless of race.  My GP told me the worst problem he had in my rural area was having more patients with ESRD than he had nephs to send them too.  He thought anyone with a function below 50% should start seeing a neph immediately, to get preventative care that could delay the need for D for years.  With a lack of nephs in the area, patients weren't being seen by one until their function was already under 20%.

[kyshiag]

MooseMom, I do indeed live in Chicago and have worked places in the City's Northern and Southern suburbs.  There is a great disparity among the food options available but I believe this is probably the case in any urban area similar to Chicago.  The barbershop idea is unique but African-Americans can also be met in libraries, parks and the such.

Do I believe there are some inherent differences in races; not necessarily.  It may be more of difference in the lifestyles/living conditions.  If you live in a mostly white community near a plant that is pumping chemicals in the air 24 hours a day, might your response to any medication be different than that of a African-American living in a community where that is not a concern?  There are medications that have added suggestion about foods you should not while taking the med.  If a person comes from a household where that food is a staple in the diet, it may take some time before the medication's maker realize that its more the person's lifestyle than genetic makeup that's causing the difference in the med's effectiveness.

I think anyone would be a bit skeptical about ingesting anything that had been formulated "especially for them" by an entity that had been so hostile and deceptive in the past.  A society or doctor trying to engender trust has a hard, hard job but, like many things, sometimes the pendulum has to swing in the opposite (equally erroneous) direction before it can settle in the middle.

I really think the efgr thing is more based on calculating differences in body types.  A more muscular person will have some differences in heart strength than a non-muscular person.  Its stands to reason that this would effect other organs but that's just my opinion.  In any case, even that breaks down to African-Americans getting medical attention further along in the disease.

Kyshiag, are you by any remote chance posting from the Chicago area?  I've heard this exact complaint/remedy in the press here in Chicagoland, particularly the complaint that there are not enough decent grocery stores selling fresh foods in minority neighborhoods.  I've also read stories where barber shops are being utilized as places where information can be more readily disseminated, which seems to me to be a clever idea.

Re: mistrust, this might sound stupid, but I'd love to get your feedback.  Some years ago, I read about a new blood pressure medication that seemed to work particularly well for African-Americans.  There was resistance to the idea that a particular medication works better for one population than for another because it all smacked of racism, and the spectre of mistrust was raised.  Here comes the stupid part...not long after I read about this, there was an episode on "House" where a black physician prescribed this medication to a black patient who refused to take it because of this mistrust.  It was really interesting because I suspected that this was not entirely fiction.

I am pre-D and get my labs done many times a year.  I've always been intrigued by the fact that on my lab report, when the egfr is calculated, there is one value ascribed for an African-American patient and another for a non-African-American patient.  Do you have any idea what would explain that?  Is there a genetic component behind that? 

For 5 years, I took cyclosporine to dampen down my immune system so that it would slow down its attack on my kidneys (I have fsgs).  I'm one of those who reads all of those patient information pamplets, and the one for cyclosporine said that a lesser dose might be more appropriate for patients of Asian descent.  Again, I was intrigued by the possibility of inherent genetic differences between ethnicities/races and wondered how a doctor could act upon these differences that wouldn't engender mistrust.  What do you think?  How would you "address the mistrust"?

(OK, I know I'm blathering a bit, but I'm really interested in this. )

[MooseMom]

kyshiag, yes, I agree that differences in disease vectors and treatment options/efficiency is more influenced by lifestyle/environment than in genetics, but I've always been interested in the genetic differences in populations as these people march through the vastness of time, sort of genetic anthropology.  And I agree that sometimes the pendulum has to swing way to the other side before it can find equilibrium.

You can explain the genesis of mistrust, and I can nod my head in understanding.  But while people like us are discussing this issue, more and more people are becoming ill and are finding themselves on dialysis.  I hope that pendulum ends up in the right place, and soon, because people are suffering and dying while the damn pendulum is faffing about!

[bette1]

I don't think anyone is talking about the lack of access to good healthcare in the the black community.  People don't encounter renal doctors until they have kidney failure if they don't get good regular healthcare.  Kidney disease is a silent disease and you often don't know you have it until you have symptoms, and them it's too late. 

This is a question of resources. Not only is there a disparity among food options, in black inner city areas, there is also a disparity among healthcare options.  I used to live in Chicago and the I had to take two buses across town to see my nephrologist.  I now I have so many choices within a short drive of my suburban home. 

It takes resources to be able to maintain a transplant as well.  You have to have good insurance to be able to get on the list and to maintain you meds post transplant.  It takes resources to be multi-listed in other states to get a transplant more quickly. 

I think there is mistrust - but it is most often seen in older people.  I don't think that explains the entire problem.  I think it is complacency. 

There are genetic factors.  Diseases like FSGS are more common in the black community as are high blood pressure.