Archive for the ‘ Insurance ’ Category

CBC / Dr Appt

White blood cells: 1.4

Hemoglobin: 10.6

Platelets: 6 (18 after getting platelets)

Absolute Neutrophil Count (ANC): 0.7

My results came back from the biopsy I had done. 35% leukemic cells. Click here to read details. My doctors at Immanuel Medical Center asked UNMC which chemotherapy medications to give to me, and chemo is set for the following week. How they managed to get away with not admitting me for chemo is beyond me. I’m just very thankful I was able to come home and sleep in my own bed…although I could have used 24/7 hospital care.

It was also mentioned to me that Immanuel Medical Center is out-of-network for my new Blue Cross plan. I was so focused on securing health insurance that would work seamlessly with my transplant that I completely forgot about this. I contacted to UNMC to switch over to them beginning in February. I think it’s time they manage my care directly instead of through multiple staff at another hospital. January and February will be an administrative nightmare, but after those months my insurance should cover everything 100%. That is one relief among all this. I can even begin to express how thankful I am for the donations that have come in. For the first time in almost a year, I can focus on my health CARE, not the insurance!

My husband and I have pretty much been non-functional since the day I had the biopsy done. After this news, any motivation that we had to do anything was completely gone, not to mention that physically I’m not feeling well either. We’re blown away by the waves of bad news and bad luck through all this. I really want to get back to some sort of normalcy, hopefully sooner rather than later.


White blood cells: 1.9

Hemoglobin: 9.0

Platelets: 37

Absolute Neutrophil Count (ANC): 1.2

I learned today that the Cancer Center I visit at the hospital will be closed on Friday. “There will be no doctor to read the results”. Therefore, we decided to skip Friday’s scheduled CBC, and come in on Monday 12/1 for that & my weekly doctor appointment.

I received a letter yesterday that my Medicaid insurance had been activated for November. This is the first time since April 1 that my Medicaid insurance was activated during the current month…which means I can get prescriptions for the first time since April 1 without paying full price for them. I left the hospital with a script for Xanax (my first one, have just been too overwhelmed & stressed), and a 90 day supply of Protonix for my acid reflux & unhappy stomach.

I also received confirmation that the material gathered during my first Bone Marrow Biopsy was stored in a way that does not allow it to be tested for gene mutations. Therefore, I will not know my true prognosis unless I relapse. This would allow new material to be collected for testing. It’s very discouraging that my current doctors want nothing to do with gene mutation testing, and that material is not stored properly to allow for it. For something that is considered to be a “Standard of care” these days, they are far behind the times.




More paperwork…

I was going to turn in financial aid forms & paperwork to UNMC on Monday, but I think I will wait until today to do that. UNMC is also going to assist me with choosing a new insurance through the marketplace. Apparently, the marketplace only gives you the cost of generic medications until you sign up for a plan. I need all drug cost information before I choose a plan. It will be a long painful visit! There is also a specific person at UNMC who handles medication assistance. I need to call her and get that process started. Also need to create a page to explain my insurance and medication dilemma. It’s become ridiculously complicated.

Check Marketplace Insurance

Apply for government subsidy on 2015 insurance.

Platelet Infusion / CBC / Dr Appt UNMC

White blood cells: 2.7

Hemoglobin: 9.6

Platelets: 11 (26 after platelet infusion)


Scheduled, will update with details.

I have an appointment with Dr. Maness at UNMC to discuss details of transplant. I’ll go to Immanuel afterward for my CBC and platelets.

I have to get together a list of questions for UNMC. I must commit to 2 things in order for them to begin transplant:

1. 24/7 care for at least 100 days after transplant

2. The ability to get all needed medications after transplant for 6 to 18 months.

Both of these will be a problem for us. I’m beginning to recruit friends to help out before, during, and after transplant. My Medicaid insurance doesn’t allow me to get meds. I’ll be checking on 2015 insurance in the Marketplace on Nov 15. Hopefully I can get some crappy plan that will at least allow me to get medication. I learned Friday that Immanuel would have covered the cost of my COBRA insurance, which I am no longer eligible for. That would have been a continuation of the awesome insurance I had when I was employed. It’s amazing how much information was simply not relayed to me, although I expressed concerns to multiple people at 2 different hospitals for months prior to losing my insurance and the ability to obtain anything other than Medicare. Technically, I could have had a transplant months ago and avoided a huge amount of stress.


Update: As I was on the way to UNMC for my appointment, I got a call that my appointment was cancelled & rescheduled for the following day. Therefore, I only had blood work done today, and I got a platelet infusion.


CBC / Platelet Infusion

Platelets + CBC scheduled.


White blood cells: 1.9 (good! halfway to a normal 4.0)

Hemoglobin: 10.3 (slightly low, but good)

Platelets: 3 (4 after platelet infusion, still critically low)

Absolute Neutrophil Count (ANC): 1.7

I left for the hospital around 10am, picked up some fancy coffee & BK breakfast on the way. I was able to finally eat solid food with no problem.

I sat with the financial aid counselor for a couple of hours. She has voice mails & emails out to people to get things straightened out for me. The hospital’s financial assistance forms must be submitted every 90 days, along with 2 years of personal tax returns, 2 years of my husband’s business tax returns, recent pay stubs, and bank statements. The form itself is 3 pages long, and certain sections will need to be updated with each form that is turned in. This will be a nightmare during & after transplant. This counselor gave me her direct contact info & told me that as long as I can get the stuff to her, she will make sure it’s all submitted for me and taken care of. Huge pain in the ass to crunch all those numbers and scan it to her, but a relief that someone can take over from there!

I checked in at the Diagnostic Center on the main floor of the hospital, and got up to the 7th floor for my platelets around 1pm. I asked for 1/2 of the dose of morphine that I had on Wednesday because I had a pre-headache feeling in my head. I slept until my platelets were done. The port master took good care of me, and had no problems accessing my port. She also gave me a card from the nurses on the floor, with a Walmart & Quik Trip gift certificate. They know I’m going in for transplant & that they might not see me many more times until then. Unbelievable, they are so amazing! My white cell count is high enough that I no longer have to take my preventative antibiotics, anti-fungal & antiviral meds.

I got home, and my husband was working at his studio. On his way home, he brought me the Falafel wrap from one of our favorite restaurants, El Basha. It was delicious, and I had no problems eating. My gums are no longer bleeding, so I can handle solids again. Things are looking better!

Still fuzzy / billing day

After sleeping most of Wednesday day and night, I didn’t go to sleep until 4 pm today. I dealt with a lot of paperwork today, and made some phone calls about billing. My head is still fuzzy, and I feel like another headache could come on anytime. So far though I am feeling ok.  I’ve barely eaten in the last 3 days and my stomach is still a little upset, so I haven’t taken the preventative pills that could keep me from getting an infection. I need to let my nurses know this.

I made an appointment for tomorrow with the financial adviser at the hospital. When? It all depends on when my platelets arrive. I submitted a form for financial assistance back in August, and I haven’t heard anything about it. I’m told it’s possible they may write off everything I owe. My nurse navigator has checked a couple times, and hasn’t received any information on the forms I submitted. It’s disturbing that I have to provoke a response from most departments at the hospital. Otherwise I may never hear anything. Anyway, this woman tells me that there are 3 different types of billing that they have there. Hospital, doctor, and clinic. The Cancer Center is a clinic, and does their own billing. I had to submit a separate form to them. The hospital billing has all been taken care of, and it sounds like they’ve written everything off. The form never got processed for the doctor billing, which includes things like biopsies and things the doctors need to sign off on. She is going to help me get all this straightened out, it’s such a mess. Also, the form is only good for 90 days, so every 90 days I need to submit a 3 page form, bank statements and pay stubs for myself and my husband, and 2 years of personal and his business tax returns. I don’t know how I am going to do this every 90 days, especially after transplant.

I also have a “Share of Cost” Medicaid form. Long story short, I have to spend $2173/month out of pocket before my Medicaid insurance is activated for that month. The activation never, ever, happens within said month. The share of cost form is submitted by the hospital, listing the services I’ve had done, showing that they’re billing me, and to apply that toward my share of cost. Per Medicaid, there are 2 of 5 services (CBC’s) for September that the hospital did not submit. There is absolutely no person that I can speak with at the hospital who handles this. No one has any idea who handles sending this information to Medicaid, and they tell me I’m responsible for sending it in. I can’t really do that when I never even get a bill! I also never see the form that the hospital submits to Medicaid. Thankfully the hospital’s financial adviser is going to dig into this with me tomorrow.

I’ve been trying to see my bills online. The hospital’s system doesn’t recognize any of the bill information that I type in, so I also need this woman’s help doing that. I’m totally in the dark about all of my billing at Immanuel Medical Center.

Because of the Medicaid Share of Cost, I have been unable to get any medications without paying full price. I will be checking the Marketplace Nov 15  to see what I might be able to get on top of the Medicaid. I’d have to be able to get it for free with a subsidy though. If that happens, things will be even more complicated with the insurance, but will allow me to get medication. It will go something like this: $6500 yearly deductible / I pay 30% of everything after that. Medicaid only gets activated after I pay $2173/month toward the deductible and 30%. It’s very depressing dealing with the insurance. I always paid for the most expensive insurance with no deductible – $500/month for my husband and I. We were very rarely sick, and it was comforting knowing that the most expensive copay we had was $250 for an inpatient hospital stay. Yep, I owe only $250 for a $100+million, 2.5 month hospital stay. How awesome is that?! Too bad my employer terminated my job, and my awesome insurance.