Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Dear UnitedHealthCare

on August 7, 2013

I appreciate that you have a program in place to reach out to your insureds after a hospitalization, and that you have a special program for transplant patients. It’s really probably a good idea.

I realize 99% or more of your transplant recipients are adults. And I realize that adults are MUCH different from kids. One thing you need to understand is that by the time a child receives a transplant, that child’s parent has generally grown very comfortable with calling up her child’s doctors with questions or concerns. That parent, in fact, probably has the phone number memorized, even if she can’t for the life of her remember her own sister’s phone number – or her best friend’s, for that matter. That parent probably also knows how to reach her child’s doctors via text or email, as well. And has probably talked to them in the middle of the night at least once. And has grown comfortable with the idea of waking up whoever needs to be woken up.

Because I realize that you’re trying to do a good thing, I will do my best to be cheerful and not grumpy when you call me every month for the next year to ask if I have any questions about my child’s discharge instructions, or to school me on wound care (no, I’m not washing with soap and water, but I am following the surgeon’s instructions, thankyouverymuch). Or to grill me on medications or ask if I think he’s drinking enough and maintaining an adequate activity level. I won’t respond, “no, but if I did, I’d just call the DOCTOR.”

Because you’ve never been a transplant mom, you don’t know that the second I thought something was off, I’d be on the phone. You don’t know that, when I wasn’t 100% certain on the new dose of Prograf, I called our doctor at 9:00 pm at home to ask, and I didn’t feel one tad bit of self-conscious about it. You don’t know that, if I couldn’t remember or wasn’t sure about something, I’d call.

I know adults aren’t like that.

But transplant moms, at least the ones I know, absolutely are.

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10 responses to “Dear UnitedHealthCare

  1. CHADEN says:

    I’d be thankful that the Insurance company is reaching out to me and not forgetting the situation and making me feel like they’re moving on…As the insurance provider I’d think they’d have every right to follow up, even though some of the questions are annoying…I’d simply say everything is under control, I keep in close contact with the Drs. but thank you for calling. Maybe think about how you’d feel if you never heard from them…would you think they don’t care, that they forgot about you? Me personally, I’d prefer to hear from them…

    • sarahtar says:

      and that’s pretty much what I was saying. They do have every right to follow up, and I do think they’re doing a good thing. I do not have the option of saying simply that I am keeping in close contact with the doctors, thanks – they have forms to fill out with my answers, and they have to ask me all of the questions and I have to answer all of them. But, yeah, I’d kind of like them to just pay the claims and leave us alone.

      They’re not calling because they care so much about us. They’re trying to protect their bottom line – patients who understand their discharge instructions are less likely to be readmitted, and it saves them money. Patients who understand their medications are less likely to run into problems requiring readmission, and it saves them money. It’s still a good thing – both saving them money AND avoiding readmissions – but I’m still not looking forward to monthly grillings from our insurance company about whether I’m providing the appropriate care to my child, when I’ve done a damn good job of keeping him alive so far.

    • sarahtar says:

      Actually, I’d encourage you to imagine whether you’d relish getting follow up calls from your health insurance company after you receive medical care. Imagine you’ve been away from home for 3 weeks. You’re trying to get the backlog of laundry completed so you can repack your hospital suitcase for tomorrow’s clinic appointment, just in case. You’re trying to wash the bin of used syringes and jars that hold your child’s food and medicine so they’re ready to go again. You’re trying to get everyone fed lunch. You’re trying to give the older kids some attention to make up in some small way for all the attention they lacked while you were gone. You’re trying to get receipts organized for insurance and keep the log of temperatures, weights, and blood pressures in a place where you can find it. While you’re cooking lunch and listening to your 4 year old tell you about the fun things she wants to do next week – while reminding her that this is for next week, not this afternoon – and your 9 year old waits patiently to tell you about a new game he’s discovered, and you’re trying to keep their excited voices quiet enough to let the 1 year old actually take a nap, which is what enables you to actually cook lunch, in the middle of all that, you have to take a phone call from your insurance company telling you to wash your son’s wound with soap and water (which the surgeons specifically said NOT TO DO), and explaining to you that your child is on antirejection medication, which helps to keep the body from damaging the transplanted organ (oh, really? gosh, nobody thought to explain that to me before).

      Even in the absence of all that – the being gone, the caring for a medically fragile toddler, the piles of stuff to do, the children in need of some attention – even lacking ALL of that, would you really relish receiving lengthy followup phone calls from your insurance company, grilling you on your medical care, asking you to repeat conversations youv’e had with your doctors, etc.?

  2. We are not (yet) transplant patients, but let’s just go ahead and send this to BCBS. I just had the same conversation when they called to let me know of resources that are available to us after our recent hospitalizations. They talked about equipment rental (we don’t even use any right now). They wanted to know if I had any questions, and I DID respond, “If I do, I will call my son’s specialist.” I know there are families that need this support, and I truly am grateful that it’s there for them. However, for me, it’s one more phone call and one more thing that I don’t have time to be doing! If they would just believe me, they would have more time to spend with the families who could benefit from their program.

    • sarahtar says:

      Yes – maybe have a wavier that you have to have your doctor tell them that they think you’ve got it under control.

      They also call after every discharge, and for a while there we had such frequent admissions that we’d get their call for a stay that was a few admissions earlier, and then I’d be completely unable to answer their questions, which were no longer relevant, anyway. I think I actually once got a little bit yelled at for not returning their call promptly – we were back in the hospital for a few weeks when they called and I was totally unaware they’d even called.

      • I did a roll eyes/laugh at the phone calls after discharge comment. We’ve gotten phone calls about a discharge but we’d been admitted again, so when this was all new to me, I’d be confused because I’d say we hadn’t been discharged, and then the person on the phone would get confused… I just sort of mmm hmmm through them all now.

        Thought of all of you this week when we were in the hospital again. Have been catching up on the blogs, but I need to remember next time I get behind to scroll way down instead of getting eager and starting at the top. It’s a little like starting at the end of the book and then reading each chapter in reverse order. I’ve read them all twice now, because I had to go back and do it chronologically to get things sorted out. šŸ™‚

    • sarahtar says:

      that said, I totally don’t mind them calling to explain benefits. They called right after T was approved for transplant and went over everything with me and I really really appreciated that.

      • We got a letter in the mail today – you will appreciate this, I’m sure. Insurance was denying paying for one of his prescriptions – the one that he will need to take five times a day for the rest of his life (dose will change, but the Rx won’t). After only two letters to insurance from the doctor, we received the letter today saying that they will cover his prescriptions until the year 2039. That was a HUGE relief! I am not even going to think about the year 2039 for a looooong time, so I am feeling like my shoulders are as weightless as possible right now!

  3. heidimarie says:

    Well, as a former NICU nurse, I can tell you that there are PLENTY of families out there with medically needy kids who are not aware of the care their child requires. It sounds like it must be a hassle for you, but I would rather see some families called more frequently than necessary than to see kids fall through the cracks of the medical system because nobody is following up and their parents won’t or can’t get them all the care they need.

    • sarahtar says:

      I agree, definitely. Then again, UHC certified UIHC as a transplant Center of Excellence. I would think that would have included checking on the patient/parent education they do. Maybe not…

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