Infusing Love: Prepare for the Unexpected

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

I love reading my horoscope.  A recent one read, “Come to grips today with financial issues that need your attention. Pay bills, go over accounts, and definitely make a budget.”

For those of us living with bleeding disorders, that budget should include paying medical bills you hadn’t bargained for. It’s important to be prepared for unexpected hospital bill stays due to a port infection or an MRI for unexplained pain; I was hit with both at the end of 2014.
In 2013 my husband left a great job with a huge mortgage company seeking more opportunity and experience in underwriting.  He found a position with another company that came highly recommended by a former co-worker.
My husband’s transition into his new job didn’t go as smoothly as we had hoped.  The health insurance premium was a lot higher because they were a smaller company, but we were able to get approved for premium assistance through Patience Services, Inc. (PSI)., We definitely needed that help because we were also hit with a 20% co-pay for factor, which we never had before.  Factor was being billed through major medical and not pharmacy benefits.  Thankfully, we were also able to qualify for help through our homecare company.  Surprisingly, both PSI and our homecare company made the process easy and I was grateful they had programs that would help.
Bad luck struck and, four months after starting, my husband’s new employer laid everyone off and closed their doors.  Benefits stopped 5:00 pm that day!  My husband was devastated; this was a huge financial blow to our family.  I was a stay a stay at home mom and we only had one income.  I was already couponing and keeping to a very tight budget.
Lovee_Moms BlogIt was a blessing that we were already in discussion with our hematologist to start both boys on a new hemophilia treatment study.  We might have had one more week of factor left before the study started! We were given free factor and free medical visits with our hematologist on the study.  Plan B involved getting in contact with our factor manufacturers to see if we could get some emergency factor through their assistance programs.
We had gone with out coverage for the three months he was unemployed.   It was a rough time for my family, to say the least.  Another blessing came our way when my husband started working the Monday before Thanksgiving.  With so many people in the mortgage industry unemployed, we were fortunate he was only out of work for three months.. My family had a lot to be grateful for that Thanksgiving!  However, the benefits didn’t start for another three months.  The Affordable Care Act (ACA) started and with the PSI premium reimbursement, we were able to finally have health insurance from January to March via ACA; I was too nervous to press my luck any more with being uninsured. In March, the employer insurance went into effect.
Going into 2014, we were in economic recovery mode.  My husband’s new employer insurance premium was the highest we ever paid, almost $900 month.  We had to get the best coverage  – for seeing specialists, the “just in case” we have an emergency with the boys, and the lowest co-pay for factor. Even though we were still on the hemophilia treatment study, we wanted to be prepared for when it stopped and we, again, were purchasing our own factor.  We were very fortunate to be able to get the premium reimbursed through PSI’s assistance program.
Fast forward to November of 2014 and we were almost through the year with no medical emergency for the boys or anyone else in the family. Both boys were still on the hemophilia treatment study with a clean bill of health, until November 8th.
Laithan, my youngest son started running a high fever in the evening.  Since he has a port, I had to take him to the hematologist for a blood culture.  The results came back positive for a staph infection.  Within two hours of getting Laithan admitted into the hospital, my oldest son called me crying because he could not walk and his knee was swollen.  So, I was at the hospital with one child and trying to “nurse” another one over the phone who has never experienced a joint bleed before.  At one point, I had Marques’ doctor on the phone at the same time Laithan’s doctor was in the hospital room.  My head was swimming as I tried to discuss the game plan for each.
After three days in the hospital, Laithan’s port infection was cleared; however, he had to stay on antibiotics for ten days. Marques’ knee was still bothering him and the factor was not helping.  As soon as I checked Laithan out of the hospital, I ran across the street to the Hematologist’s office to meet my husband who was there with Marques.  They sent him to get a MRI because we couldn’t determine why his knee was still bothering him.  His MRI was clear and didn’t show he had a bleed.   After a few weeks of resting it per doctor’s orders., the problem just went away.  He is actually playing basketball on it with no problems.
But now we have medical bills.  Each financial office is telling us, “You haven’t met your deductible yet, so we have to bill you.”  All I can do is shake my head and think, “Really?  We almost made it through 2014!”  I had to pay towards a deductible that will start all over again in two months at the beginning of 2015.  Fortunately, I know as a “Hemo Mom,” I have to be prepared for these unforeseen medical bills and I have been saving for these situations.
You have to prepare your family financially for these types of situations.  I’m sure there are families with worst stories than mine.  My advice: Prepare for the unexpected!

  • Call your home care company, your HTC, and your factor manufacturer and ask, what assistance programs they have.

  • Call your local chapter to see what services or resources they offer.

  • Visit HFA’s “Helping Hands” website and see the Patient Assistance Programs page , which outlines various programs – some you may be able to use now.

Make sure you are prepared for the possibility of your own family medical catastrophe.  Like my horoscope had advised me, I’m going to keep on top of my finances!
Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (16), Marques (12), Laithan and Layla (5).

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.