Insurance, what a PITA

[horsie63]

I have Aetna as my primary insurance through work, and UMR as secondary. The closest transplant center is out of network for Aetna and doesn't take it. I can only use UMR as primary if I drop Aetna and I can't really afford that. Insurance in the US is a pain in the a$$. The center that does take Aetna is 3 + hours away versus 1.5 hours.

[S_dillow]

Do you qualify for Medicaid/medicare?

[horsie63 in reply to S_dillow]

No, I'm only 58.

[Jayhawker in reply to horsie63]

My transplant center required me to apply fir Medicare Part A once I was approved for the transplant. It addresses in hospital expenses and essentially supplements my work insurance. The financial coordinator at my transplant center walked me through all of this stuff. She was excellent!

Jayhawker

[barbara55109 in reply to Jayhawker]

Are you 65 or older or on dialysis? Otherwise you can't get Medicare.

[Jayhawker in reply to barbara55109]

Yes, I do fall within those parameters. The point I was trying to make is that the financial coordinator at the transplant center (at least at the center I’m listed with) will help each patient create a viable financial plan to get the transplant and follow-up care covered to try he greatest extent possible. My transplant center seems to be very committed to assuring equal access to transplants …

Jayhawker

[RoxanneKidney]

Yeah Atena is good at taking money. Do you have high option? These are different levels. With the high option you can go most anywhere.

[horsie63 in reply to RoxanneKidney]

For my work I have the higher $2500 deductible. At least KU takes it with no problem and even at a 3 hour drive they are the closest besides Tulsa. And they are very highly rated and say they have a short wait list so there's that. We have a Casino in KC so if I have to I can combine some work with waiting around, maybe. I can at least take my laptop.

[Aloha49 in reply to horsie63]

Thanks for the conversation on getting on transplant wait list. What is KU that you keep talking about has a short wait list? Kansas University? I am searching for short wait lists and whether I have people close by who can help me recover. How long will they hold a kidney while I fly to them? I heard that you can join Angel Flights with an annual cost so you have that ready. Keep talking as we support each other. I live in Northern California. THanks, BB

[horsie63 in reply to Aloha49]

I’m looking at the University of Kansas in Kansas City Kansas mainly cause they take my insurance. I’ve been told Saint Luke’s in Kansas has a shorter list. I’m just now being referred so not sure how long or Angel Flights. Unless it was private I wouldn’t trust commercial airlines at this point. KU is within 3 hours drive for me.

[jodaer]

Totally agree about health care and insurance. I guess the question that really needs an answer what do you have more of? Time or money? It does suck.

[horsie63 in reply to jodaer]

Lol...neither? I sure can't afford the cost of a transplant without insurance and even though I'm 58 I feel time slipping away. Lately it seems as if all my thoughts are consumed with kidney disease and what will happen next. A lot of it comes down to do I have to retire, I want to keep working but under what circumstances? How is this going to affect my every day life? I had to give up doing ultramarathons so what else? I have 2 horses I don't ride anymore, what about them, do I find new homes? It's endless speculation and all I can do is wait.

[Hello67 in reply to horsie63]

I’m so sorry that you’re going through this ckd journey and having insurance issues on top of it. If you are in end stage ckd you may be eligible for Medicare regardless of age. Check out Medicare.gov. There are some stipulations but maybe speaking with a live person could give you the right answers. Are you on dialysis or getting ready to have a transplant? Please let us know how you are doing. We care. 🙏🏻

[horsie63 in reply to Hello67]

I'm at 17% and working towards a transplant. Not on dialysis. I don't quite qualify for Medicare just yet but will keep that in mind. Thank you.

[Hello67 in reply to horsie63]

I’m sorry you don’t qualify at this time. I’m glad that you’ve already done your research. 🙏🏻

[Darlenia]

Speaking for myself (my hubby now has a transplant), I would head to KU and start the process of getting on the list. I know some will drive 5 hours or so to get to their centers, some even fly out to those even further away. (If interested, check out Angel Flights.) Once you're on a list, you can probably easily transfer or add another center when your insurance situation improves. My husband was on two lists - at a center only a few minutes away but with a long waiting list and another that was two hours away with a much shorter wait time. The two centers were happy to share labs. Interestingly, some of the larger and busier centers have inexpensive onsite lodging for their patients. Time is important. I basically took charge of our situation when I discovered the lengthy waits at some and recognized my hubby didn't have the energy (due to hospitalizations and dialysis changes) to make it happen - taking care of the research (important), making the calls, keeping tabs on appointments, serving as chauffeur, etc. Maybe, if you feel overwhelmed, you can find someone to manage this for you as well. As I knew would happen, the center further away came through for us quickly, particularly since we agreed to consider a kidney with conditions. Now most appointments are conducted virtually and most labs are done locally. By the way, my hubby managed to run his business throughout everything and still does so today at age 71, albeit delegating some of the work to others. So think positive and always keep your eyes on the prize.

[horsie63]

My nephrologist has referred me to KU. I know they accept both my insurances as I was at our KC Casino in Mar 2021 and passed out. They took me there and ran a crap load of tests. They are are on MyChart so I can share my PCP's info with them and since that's where all my labs are done...more time saved. Now I'm waiting to hear from them but with the holiday weekend don't expect any til next week.

[barbara55109]

What is UMR?

[horsie63 in reply to barbara55109]

It's my husband's insurance. He works at a small power co-op in NE OK and that's the medical insurance they use. I'm not 65, only 58 and not on dialysis. I'd prefer to get a preemptive transplant and skip the dialysis. I'm very small and not sure what it'd do to me.

[barbara55109 in reply to horsie63]

I wonder if his company is self insured. UMR specifically says they aren't an insurance company, but just manage benefits. As a state employee I'm self-insured. Dr. bills are paid by the state, not that I have to pay 100%. The state decides the benefits, not any insurance company. Luckily there are 4 transplant programs in Minnesota and all are covered since there are state workers all over the state. I'm just 59 and not yet on dialysis either. While it is best to have a transplant before dialysis it is very difficult to time that out. I don't have a donor, so there is a six year wait. Luckily my eGRF has been stable around 20 for two years. It had dropped to 7 July 4, 2020 so I was able to do the transplant review process. So I have a little more than a year on the wait list. Most folks don't even get referred to transplant programs until they are already on dialysis and Medicare. As long as you keep working then work insurance will always be primary and Medicare secondary - except for dialysis. Non-Medicare insurance only covers short term dialysis.

[TopazForests]

Hi Horsie, I was recently diagnosed with ckd and it is a lot of thinking and researching as you find out what is going on. I'm lucky enough to be in Omaha and that makes things all close by, however, there are many people here who have to travel several hours from here where the resources are.

Check with your insurance and see if they might pay for the place in KC since there is nothing closer. I also have a friend in Maine who has breast cancer and she has to travel to Boston for her treatment. The hospital has a house for people who have to travel for treatment and she often stayed there when undergoing testing or treatment. Between rounds of treatment, her primary doc was able to draw the blood and order the tests the cancer center needed and then send them to the cancer center. I guess this is a long story saying that for large urban centers with many rural areas nearby are often set up to help patients who have to travel.

If you are at the point where you need dialysis, you also have the option for at home dialysis. From my research, you do the at home dialysis every night while you sleep. Which sounds pretty good to me. It seems like there are a lot of options for treatment and you can find what you need.

[allene7]

You should talk to someone in charge if you have been approved for transplant they should go over all of the financial information with you. Most people are put on Medicare for the transplant and also qualify for some other things as well. I'm not in the financial aspect and cannot say for sure but most seem to have Medicare for transplant. Best advice talk to people who are in charge of financial with the transplant center.