New Car Smell

Imagine you really need a new car. You save your money. You do all the research ahead of time, and find the best dealer. You pick out just the car you need and ask the dealer how much it costs. The dealer tells you that he can’t tell you a cost on the car until after you sign the deal. All the research you do turns up a huge range of prices that the car might cost you, rendering that information useless. Imagine, too, that your “savings” for the car was being held by a company. The company tells you that after you buy the car, they will let you know if they are going to let you have the money for the car. Would you still buy the car?

I’ve been a consumer for quite some time. I always do my research and get my costs upfront in the decision making process. Then I can negotiate and decide whether the cost is worth it. The above scenario sounds absurd, doesn’t it? Most of you would probably walk away from that deal, right? But that is how the scenario plays out in the medical field. There is no transparency in the pricing of medical services. First, patients get the services they need and then deal with the bills (and the insurance companies) after the fact.

Months before my surgery, I was back and forth on the phone between the hospital and my insurance company trying to ensure that this surgery would be covered. Surgery was even delayed while waiting for pre-authorization from the insurance company. I also wanted an estimated cost so I knew what I would be facing if I had to pay a portion of the costs out of my own pocket. I was mostly concerned about the lymph node transfer, which is still seen as “experimental” in the US.

The surgeon himself was confident that the breast reconstruction would be covered. He also told me that the lymph node transfer was most likely to be covered in conjunction with the reconstruction surgery, as opposed to if we did just Lymph Node Transfer. The Women’s Health and Cancer Rights Act of 1998 requires all group health plans that pay for mastectomy to also cover prostheses and reconstructive procedures. I never had any trouble getting coverage for my mastectomy or other reconstructive surgeries, so I was confident my insurance would cover this procedure. I had to trust that all would work out (which is why I pay that huge monthly health insurance premium) and I scheduled the surgery.

However, neither the hospital nor the insurance company would give me an estimated cost of the surgery and hospital stay. Neither would confirm whether the surgery was going to be covered by my insurance or not. I had the hospital tell me the billing codes, but the insurance company still wouldn’t tell me anything until after a claim is submitted. The insurance company pointed me to their online “cost calculator” so I could get an idea of the cost. The range was so large, it was not helpful. The hospital simply said that they would “go to bat for me” if the insurance company denied coverage (after the surgery). This was all the information anyone would give me on cost and coverage before I made the decision to proceed with the surgery.

Hundred Bill CornersBefore the hospital gown hit the bottom of the soiled linens hamper, the ink was dry on the letter from the insurance company. The ink was dry on lines stating “we have determined that the service is not medically necessary,” and “We did not receive any other medical information to make a decision about your admission. We do not have your test results. We do not have reports about your care. You were admitted 01/06/2017. Your admission is not covered.”

The letter was dated 01/09/2017. It was stamped before I was discharged from the hospital, and waiting at my house when I returned home from the hospital. I’ve never seen an insurance company work that fast. It certainly takes longer to process claims and PAY bills. Why would they subject someone to the anxiety and stress of facing medical bankruptcy before they even have all the information from the hospital? I bawled when I read this letter. Truthfully, though, I am not worried (yet.) Once they receive the information from the hospital (and my appeal to their decision to deny me coverage), I feel that they will have to cover this surgery. What frustrates me is the fact that I have to appeal and fight the insurance company. I’m upset that they didn’t wait until all the information was gather from the hospital before sending me a denial. “We do not have results,” “we do not have reports.” Well, GET the results and the reports and THEN tell me what is covered or not covered. I am trying to heal from major surgery. I do not need the added stress.

Thank goodness I’m starting a new career. I may need every penny to pay for this. Who’s buying and selling Real Estate? Call me.

I don’t even like that new car smell.

Waking Up is Hard to Do

Waking Up is Hard to Do

Everything went black as they wheeled me through the operating room double doors. The next thing I remember was faint sounds and confusion. A male nurse was introducing himself and telling me that it was time to move out of recovery and into my room. I gathered that he was in a rush, and everything seemed a bit disjointed. I faded in and out of sleep and don’t remember much.

What I do remember from the first night was extreme thirst. I’ve never been so thirsty in my life. I was not allowed to drink anything in case they needed to rush me back into surgery. Those first hours are critical for the blood vessels to connect to the flap (as boob #2 is now called.) I was too out of it to help myself, and am so grateful for Andy, who stayed awake by my side all night. He was able to use a little sponge on a stick to put water on my lips and inside my mouth. I think I begged for water all night. At some points, my mouth was so dry that my lips stuck to my teeth. The nurse finally slathered vaseline on my lips and that helped quite a bit.

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I also remember feeling my right arm puffing up like a balloon. Lymphedema does not like the trauma of surgery. I remember the nurses coming in every hour to check my vitals. I’d wake up enough to ask for water and push my pain med button. They used a doppler radar to listen to the blood flow to the flap. It sounded like a baby’s heartbeat. I couldn’t tell you much else about the night. I don’t know if I ever actually opened my eyes. I do remember once, when the nurse asked me if I needed anything else, I said, “a giant glass of water, please.” I did not get a giant glass of water. By morning, I was so parched I couldn’t talk. All I wanted was water, sleep and serenity.

Then, all of a sudden, there was a grating, raucous conversation that seemed all about sunshine and happiness but with a nasty undertone. It was the nurse’s shift change, and the raucous one would be my caregiver for the next twelve, long hours of my life. She was syrupy-sweet on the surface with an underlying toxic passive aggressive core. Let’s call her Nurse Saccharine. She managed to hold on to her tight smile as she insulted and criticized everyone around her, loudly. She crashed into the room, jolting me out of sleep every hour to check my vitals. She would be in charge of getting me to stand for the first time, which is never pleasant, even under the best of circumstances. She kept popping in telling me excuses and delays. In the meantime, the physical therapist came in to get me up for a walk, but I still had a catheter and was connected to drain suction on the wall. I told her the nurse was coming after lunch to get me up, so she arranged to come back around 1:00. Well, Nurse Saccharine did not like this at all. She thought it was ridiculous that the PT didn’t just do it herself and get me up.

I further inconvenienced her when I asked for additional pain pills before trying to get out of bed. This turned out to be a mistake, as she gave me something that made me very sick. Up until that point, I had a “magic button” that delivered dilaudid to me as frequently as every 10 minutes. It worked great on the pain, and didn’t cause nausea! A tough combination in my opinion. So now, nauseous and weak, it was time to let Nurse Saccharine pull my catheter and get me on my feet. Yippy!

The hospital bed did much of the work, but the final twist pulled hard on the fresh incision which spans from hip to hip. After the searing pain subsided, I put my feet on the floor and stood up. Next, three or four steps to the chair. I made it! I settled in and was finally able to sip on water. She told me that she would be back to get me walking to the bathroom in a couple hours. At this point, the water was too much for my stomach and just when the PT came to work with me, I started throwing up. I think this was Saccharine’s way of punishing the PT for not doing more earlier. We did not go for a walk. Instead, the PT wrapped my arm and I continued to sit in the chair feeling awful.

I asked for more anti-nausea meds, but the nurse said the doctor wouldn’t approve another one. I couldn’t keep the water down, and going on 30 hours without water, the nurse wanted me to pee. Not surprisingly, I could not. Saccharine threatened to put a catheter back in if I didn’t pee, so I started drinking my water a little more ambitiously. No way was I going to let this woman put a catheter in while I was alert.

I finally ordered some broth and jello to try to calm my stomach down. It was Saturday afternoon and time for the NFL play-off games. Andy came back from catching up on his sleep to watch the games with me. I slept through most of both games, though. The shift change came again and thankfully I got a much nicer nurse. She told us that the previous nurse informed her that I refused the additional anti-nausea meds. Imagine that. We told her that, despite begging for additional anti-nausea meds, Nurse Saccharine told us the doctor said no- an outright lie. Why would anyone make someone suffer like that? Once I got the nausea under control, I felt so much better. I had a pretty good night. I needed to rest up because the next day was the Packer game, and I didn’t want to sleep through that!

As 7am approached, and time for the shift change, I started feeling worse and worse, imagining another 12 hours with Saccharine. My whole day turned around when, at 7:15, a very nice nurse quietly came in my room and introduced herself as my nurse for the day!! No more Nurse Saccharine!! I later learned that Andy told them at the nurses’ station that we had trust issues with the nurse and did not want to have a repeat of the previous day! That made my day. Sunday was a turning point. I felt good. I could get up on my own, eat, manage the pain and nausea, and the Packer game was awesome!!!

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