« Incentives of Death: The CMS Payment Systems | Main | Should Nephrologists Earn More Money? »

Monday, January 30, 2012

Comments

Feed You can follow this conversation by subscribing to the comment feed for this post.

MooseMom

It is very rare to see any stories in the mainstream media about home hemo, and the stories that DO appear give the impression that home hemo is just amazing in its rarity. The media could do so much more!

It must be hard for the renal community to relate any message about RRT that strikes just the right tone. One basic truth is that for most people, thought not all, transplant is the best therapy. It is not without its risks, but a kidney from a living donor is clinically the best treatment. At the other end of the spectrum, another basic truth is that while SHD is not painful, per se, it IS grueling in that it IS debilitating and it IS enfeebling. It's the messaging in the middle of the RRT spectrum that can be confusing and unfocused.

For people who are not eligible for transplant yet know that dialysis is in their future, it must be devastating to read articles like the one in Parade.

I feel a letter to Dr. Oz or Dr. Sanjay Gupta coming on...

Peter Laird, MD

Dear Moosemom,

I do believe that the media is blatantly pro-renal transplant since NKF, AAKP,RPA and just about any renal organization devotes the majority of their resources towards renal transplant and ignores the plight of dialysis patients.

Most of us in the dialysis advocacy world devote a great deal of time in correcting the misperceptions about dialysis. The side effects that the majority of the patients experience are almost entirely preventable. In such, it truly is incorrect to call dialysis grueling and debilitating and enfeebling. That is not the outlook I have on a procedure that as of tomorrow has kept me alive for 5 years. I have NEVER once experienced grueling, debilitating and enfeebling symptoms in this entire time. Yes, fatigue and occasional headaches especially when I was in-center, but that is the result of the renal disease itself mainly.

With optimal dialysis, people can and should live perfectly normal lives. That is the uniform testimony of any one fortunate enough to have optimal home hemodialysis when compared to the conventional in-center option.

For those that do proceed to renal transplant, the difficulty is that the majority of patients truly do not understand the potential side effects, nor are they informed of optimal dialysis choices as well. However, there are many who are able to speak well of both choices without resorting to rose colored glasses when describing renal transplant. It is not a cure since you now have a new set of symptoms and issues to deal with. The right tone that you speak about is in reality truthful, frank and honest informed consent. That is truly quite rare.

MooseMom

And the media could help in providing "truthful, frank and honest informed consent" instead of tarting up each and every article with horror stories of grueling dialysis.

I don't know if this will lead to anything...probably not, but when has that stopped me?...but I sent an email to Dr. Sanjay
Gupta via his contact info on CNN's website asking him to do a story on the new technology like NxStage (and like what might be on the horizon) that enables patients to get optimal dialysis at home. Wouldn't that be cool if he did one of his specials on the subject? His latest special on CNN is about high school football and concussions, and with the explosion in CKD, a story about dialysis with a focus on home dialysis could affect a lot of viewers. You never know...someone in the popular media may hear us.

Peter Laird, MD

I heard somewhere, some point in time that the squeaky wheel gets the grease. Can't hurt to put it before them for sure. He is a medical man, so you never know.

The comments to this entry are closed.

My Photo

October 2020

Sun Mon Tue Wed Thu Fri Sat
        1 2 3
4 5 6 7 8 9 10
11 12 13 14 15 16 17
18 19 20 21 22 23 24
25 26 27 28 29 30 31