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Living Donation Forum / Re: Kidneyversary - 13 years
« Last post by Michael on November 17, 2020, 06:47:28 PM »
Congratulations to you, too, AdrianFR!
Living Donation Forum / Re: Kidneyversary - 13 years
« Last post by AdrianFR on November 17, 2020, 06:37:19 PM »
Congrats on your kidneyversary!
I just celebrated a 5-year kidneyversary myself two weeks ago.

I have also been low in Vitamin D my last two annual check ups. I am currently taking a daily supplement,  hoping this helps.
Living Donation Forum / Re: Denial of supplemental insurance coverage
« Last post by Michael on November 17, 2020, 02:33:30 PM »
Here is one of Dr. William Freeman's posts (from 2011) on GFR for living kidney donors: http://livingdonorsonline.org/ldosmf/index.php?topic=141.0

The most relevant part is the second and third paragraph after the heading "Significance for us LKDs":

More importantly, please realize what the classification of GFR of 30-60 by itself really means to us LKDs.  By itself, it means to LKDs:  no-one knows!   :)

That group, "Chronic Kidney Disease Stage 3," is defined by the value of GFR alone; the definition does not require having chronic kidney disease or another disease known to be life-shortening and also adversely affecting GFR -- namely diabetes, high blood pressure, or heart disease -- in people with 2 kidneys.  (CKD 4 and CKD 5 require having chronic kidney disease.)  Most people with 2 kidneys and GFR 30-60 have one or more of those diseases, and thus are at high risk to die prematurely from them.  That definition, however, was not developed in LKDs otherwise healthy, that is, LKDs without chronic kidney disease (shown by abnormal results of urine or blood or other tests) or diabetes or high blood pressure (especially not well controlled) or heart disease -- but simply "GFR 30-60."  That definition also did not account for person's age; because most people's GFR decreases slowly as they get older, even if they remain healthy.
Living Donation Forum / Re: Kidneyversary - 13 years
« Last post by Michael on November 14, 2020, 08:12:54 AM »
Congratulations! Great news all around!
Living Donation Forum / Re: Kidneyversary - 13 years
« Last post by Fr Pat on November 14, 2020, 05:52:28 AM »
Happy Anniversary! Great! I have read that we kidney donors tend toward deficiency in Vitamin D and Vitamin B-12, even with good nutrition and sunshine. So I take a small supplement of each daily just in case, but I have never had my levels actually checked. What you wrote certainly makes sense: getting vitamin D is one thing, but converting it to a usable form is another thing. Thanks for the info.
Living Donation Forum / Re: Denial of supplemental insurance coverage
« Last post by Michael on November 13, 2020, 12:32:36 PM »
I replied to your email on this topic, but for the sake of those who visit the message board, I want to post my response to you here as well so others can see.

First, generally health insurance in the U.S. is subject to the protections of the Patient Protection and Affordable Care Act (aka "Obamacare"). One provision of that law is that health insurance cannot deny coverage due to pre-existing conditions. However, there are exceptions. The supplemental Medicare coverage you applied for is one example. "Guaranteed acceptance," where you are provided coverage regardless of your age and health, occurs at your initial Medicare enrollment (generally at age 65). After that, if you add or change coverage, you're subject to underwriting (i.e., the insurance company can deny you coverage or charge you higher rates based on your health).

There are two other types of health insurance that can have pre-existing condition exclusions. One is supplemental medical insurance, sometimes called "indemnity" coverage or voluntary insurance coverage. This is coverage provided by companies like AFLAC that pay a set amount of money to the insured (not the provider) in the event of an illness or injury. The other type is "short term" or "temporary" insurance, which is intended to provide limited (and inexpensive) coverage as a bridge between more complete coverage.

Note that there is no protection from pre-existing condition exclusions for life and disability insurance.

Second is the issue of what constitutes "normal" biometrics (creatinine, BUN, GFR, etc.) for someone who is a living kidney donor. Everyone knows our kidney capacity is diminished by virtue of donating a kidney to someone else. The result can be numbers that make it appear we have kidney disease. But what if that remaining kidney is perfectly fine and we are otherwise in excellent health? Are we really at risk? Are we really uninsurable?

Unfortunately, there isn't an answer right now. There have been "discussions" in the medical community but no action, and I'm not aware of any comprehensive, definitive study that shows LKDs can be considered healthy even if their kidney biometrics are "abnormal."

Your experience of having health insurance denied is a prime example of the consequences of not having an answer to the question. That kind of consequence is also something that is rarely mentioned in detail in educational information used for "informed consent" of potential donors. It seems reasonable to insist on getting an answer in order for future donors to be considered truly informed of the longer term consequences of donation.

So what to do? As we discussed, I'll work on seeing what research is out there that might provide an answer, even if just a partial answer. I'll dig into the message threads we've had on this message board in the past on this topic to see what we can learn. I'll reach out to other LKDs to see what their experiences have been, specifically whether they have been denied coverage because of "abnormal" kidney biometrics while otherwise being healthy. And I'll contact other LKD advocates to get their perspectives and suggestions.

Stay tuned!
Living Donation Forum / Re: Share your experiences about LKD evaluation process
« Last post by Michael on November 13, 2020, 11:41:51 AM »
Kelly, great news! We look forward to hearing about the results. Of course, we are also interested in knowing if there's anything in your findings that suggest LDO could be doing something more or differently.

Thanks for doing the study.
Living Donation Forum / Re: Share your experiences about LKD evaluation process
« Last post by kelnot on November 13, 2020, 11:20:16 AM »
Thank you to all of the potential donors who agreed to be interviewed and sharing their stories.  I have been able to meet my recruitment goal and have had to close my study. Upon finalizing my results, I will share with the living donor community.  Thank you!
Living Donation Forum / Re: Denial of supplemental insurance coverage
« Last post by Fr Pat on November 13, 2020, 06:46:24 AM »
Dear Jim,
     HI. Thanks so much for mentioning that. Indeed over the years I have sent info and advice to so many nice people that I can hardly remember now who-is-who. I do hope that your insurance problems get taken care of. I'm still doing fine now at age 74 (75 next month) almost 19 years after kidney donation. I even still manage to do 5k and 10k runs, and once a year a slow half marathon. Always great to be in touch with others I have "met" over the years.
Living Donation Forum / Re: Has anyone donated at Hospital of Philadelphia?
« Last post by dwbr on November 12, 2020, 08:41:06 PM »
I applied to the FB group a little earlier this evening. Thank you!
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