What the HHT?

A Voice for the HHT Community

Hospitals, insurance and billing oh my!


By Katie Mitchell

Katie brothers and gmom all with HHT

Katie with her brothers and grandmother – all of them have HHT.

I never imagined I would know so much about hospital systems, billing procedures, lab work, payment plans, ferritin levels, infed iron and hematologists. Since being diagnosed with HHT at age 34 – over 5 years ago – I have learned a lot about our medical system and how it works.

I have been to two different states to find the right hematologist for me. I have interviewed three hematologists, had labs drawn more than 100 times and in four different doctors offices all at different prices.

I have had infed iron intravenously administered in three different hospitals in two different states every other month for five years. I have had CT scans, bone marrow biopsies, dye tests performed and MRIs.

I had to learn two different insurance companies because the first insurance company left our state. I have learned a lot about pricing, doctors, doctors fees and hospital fees, but still cannot explain why infed iron costs significantly different amounts at different hospitals or why the same lab work costs different amounts depending on the doctor within a hospital system.

I wonder if any other HHT patients are like me? Have you spent hours on the phone with insurance companies or hospital systems to figure out your bills? How many payment plans are you set up with to pay your medical bills for HHT maintenance? I have spent countless hours on the phone with doctors offices and hospitals, or on hold and being transferred to different departments never to get the correct answer.It is a very frustrating endless cycle. But, I keep pressing on.

Katie and family

The reason Katie continues to press on.

One experience that really sticks with me is when one hematologist I met with said, “You sound as though you are interviewing me for the job?” I responded, “Well, of course I am. I am giving you my time, my money and I will educate you.” He laughed. But, it is true.

We have to educate ourselves on our medical procedures, our local hospital systems and the varying costs of a procedure at different facilities. We must be our own advocates. We must continue educating ourselves so that we can educate our doctors.

Many days I’m tired and worn out because I overdo it and don’t rest enough. But, I am committed to finding myself the best possible care at the best price. The more we speak up and ask our physicians, “Why does it cost this? Why is this hospital a different price?” the more we will educate them.

I encourage you to be your own advocate. Speak up. Ask questions. Participate. Ask why.  And above all – educate. Educate all of the nurses and doctors you meet. Try not to become discouraged. Remember that knowledge is power! 

2 thoughts on “Hospitals, insurance and billing oh my!

  1. Hi Katie,

    In your post you mentioned being diagnosed with HHT at age 34. Were you showing any signs or symptoms of having HHT? My birthmom (I’m adopted) has HHT as well as her brother, sister and mother. I’m 33 and have shown zero symptoms. Just curious if it’s worth going through the screenings and tests if I’m not showing any signs.

    Liked by 1 person

  2. I did have occasional nosebleeds and a heavy monthly cycle. Otherwise I had no real issues except for low iron occasionally. I think it would be worth the genetic testing-just a blood test-to know whether or not you have it. I believe that knowledge is power. Best of luck!!!


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