Altruistic donor concerns

[Estherdreams]

Seeking input from altruistic donors about your experiences during the donation process and postoperative. I'm just starting the screening process and am scheduled for scans and lab work in a couple of weeks. Are there any administrative, legal or insurance pitfalls I should be aware of? Has anyone had bad experiences dealing with getting their insurance company to cover complications, maybe several years down the road, that may be a direct or indirect result of donating?

[Philly57]

Since the Affordable Care Act, pre-existing medical problems are not considered when applying for health insurance. Coverage should never be a problem. Life and disability insurance could be different.

I donated 1 year ago to my brother. I am of course glad for him, but I wouldn’t be honest, if I said I had no regrets. As I look at my lab data (higher creatinine, lower filtration rate) I have some sense of loss of health. Hopefully, my longevity won’t be affected, but I am a little nervous about that.

[Estherdreams in reply to Philly57]

Thank you for your candid insight.

[bisley]

I had a transplant February of this year. My sister-in-law was my donor. If in the future it turns out that an organ donor needs a transplant they immediately go to the top of the list. Also, any kidney illness that should come up will be covered by Medicare, for life, regardless of their age.

This iscwhat was explained to both me and my donor. If anyone knows differently please post.

[Philly57]

If a donor were to develop ESRD, they would get coverage from Medicare, but not for early renal disease to my knowledge. Supposedly as donors, we are moved up on the list for cadaver kidneys assuming our health (and age?) is good enough for transplantation.

[Estherdreams in reply to Philly57]

Thanks for your input. There are so many variables to this decision. Getting health insurance is one thing, and getting your health insurance provider to actually pay for care is another thing. After reading some of the posts elsewhere on this forum from transplant recipients, it occurs to me that, although I may "go to the top of the list" to receive a kidney should my remaining kidney have problems in the future, if I become a recipient myself, I could be entering what appears to be an overwhelming process of applying for, strategizing and juggling the insurance tools that our U.S. health system is based on. I'm reading people talk about navigating highly detailed rules and managing critical time windows for applying for and then prioritizing both Medicare and employer-based insurance, making adjustments to which ones are designated Primary vs Secondary, being knowledgeable and proactive about which "Part" of Medicare Prescription Plan offerings to enroll in at just the right stage of care to ensure post-transplant medications are covered....

I realize all of these considerations are worst-case scenario for me as a donor, because hopefully the screening process aims to ensure the healthiest results for both the donor and recipient. Reading recipient posts impresses on me that getting an available kidney is only a part of the challenge for them.

[STLtoCLT]

Hello, I’m also pursuing non-directed donation and have my lab scans in two weeks. Wishing you the best through the process.

I have a financial planning background so I’ve given your question a lot of thought. One thing I do plan to do is secure life insurance pretty far into the future. I’m not sure your age or if this is important to you in your life stage, but I personally wanted to be covered before donation in case I run into challenges finding an insurer to cover a donor (though I’ve heard this is very rare).

If you haven’t already, I also encourage you to look into the Donor Shield program through the National Kidney Registry!

[Dcowboysfan in reply to STLtoCLT]

Hi, I read your reply to Estherdreams, what is “Donor Shield”? My name is Mike and I donated six years ago. Thx

[STLtoCLT in reply to Dcowboysfan]

Hi Dcowboysfan — Google “Donor Shield” and an informative website will come up outlining services like wage reimbursement, legal services, and more. I’m not knowledgeable on all the requirements, but I do believe there are some conditions that need to be met in order to receive these services (such as donating through NKR, working with specific transplant centers, or participating in a paired exchange). As I’m currently in the donation evaluation process, I’m not exactly sure how it works for prior donors.

With all that said, thank you for being a hero to someone through living donation!

[Dcowboysfan in reply to STLtoCLT]

Hi Stl to Clt, thank you for the reply. Good luck to you moving forward.

[Estherdreams in reply to STLtoCLT]

Thanks for everyone's replies. I am 54 years old and am not a financial wiz. My income is modest and I have no reason to anticipate it will improve between now and 70 when I retire. I have no dependents, so have never invested myself in life insurance, only having the minimal policy provided through my employer. On initial research about the Donor Shield program, it appears that this program is only for donations done through transplant centers that are participants in the NKR system? I've been in talks and scheduled initial scans through Duke, but see that they don't participate with the NKR. I'm beginning to wonder why that is. Duke is very highly ranked as a transplant provider, but is that because they are a private institution and may prioritize recipients that are more affluent? Alternately, there are a couple of still-local-to-me, but a few more miles away transplant programs (UNC, Wake Forest) that are NKR participants. How did you decide which transplant center to work with?

[STLtoCLT in reply to Estherdreams]

Estherdreams it seems we perhaps live in the same area! I also researched Duke but ultimately landed on initiating the evaluation through UNC given some of the additional donor support options they seemed to offer through NKR. It couldn’t hurt to ask Duke about donor protections to see if they may be able to “match” these offerings or at least shed some light on why they don’t participate. For UNC I have appointments with a “financial coordinator” who I’d probably discuss these matters with — if Duke has someone similar.