First, let me start from the beginning to fully explain how I ended up in this situation. Many people know me, know that I am 'sick', go to the hospital often, need transfusions regularly, but don't quiet know the whole story. After seeing the huge response to my last post and receiving numerous comments and private messaged questions about the details, I've decided to back it up before giving the update. So....
Sickle-beta thalassemia anemia is a very rare genetic blood disorder, even more so in Caucasians. It is so unlikely, in fact, that I was 27 years old and literally dying in the ICU before they figured out what was wrong with me. They never thought to test for sickle-cell disease. After my gallbladder removal surgery turned into a pancreatic infection causing my blood sugar levels to rise and plummet to dangerous (seizure and unconscious) levels, a hematologist in the ICU studied my blood under the microscope. In this last ditch attempt to figure out why they could not stabilize me, the hematologist saved my life!
A few years later, after numerous infections and hospital admissions due to complications from my disease, the doctors made the final decision that I could no longer teach. Although, I'm sure my daughters would say that almost losing me in the ICU was the scariest, most depressing time in their lives.... for me, it was losing a career that I loved and the ability to financially support my daughters on my own, that was the most heart breaking.
Life wasn't easy, by far. The 'system' is such that once an individual is placed on disability, they must wait 2 years before they receive Medicare!! So, two years without medical insurance to see my primary care doctor or hematologist, left me at the hands of the ER for all my medical needs (from basic infections and transfusions to sickle vaso-occlusive crisis), all of which increased without the ability for preventive care and routine transfusions.
Nonetheless, we made it through all of this. In fact, I'd like to believe the entire ordeal has made us stronger and more grateful for every little blessing. We had to move from the suburbs and private schools of MD to West Virginia to save money. The move ended up being a blessing, in and of itself, finding friends, support and the sense of community that is hard to come by in the 'city' and overall life has been pretty good, almost perfect.
However, there is one more BIG 'glitch' in this nations health care system and that is the lack of dental coverage for the sick and elderly on Social Security. There is absolutely NO dental care plan for the people who need it the most. As I have recently learned, the hard way, sickle cell disease increases the risk for periodontists (gum infections) and causes more rapid tooth decay. Because I don't have any dental insurance, but continue to suffer from recurring infections on my gums, my doctor recommended I visit the University of Maryland Dental School because they provide dental services at a fraction of the cost elsewhere.
Imagine my heart break when the dental student handed me an estimate of 17,492 dollars!! In fact, I found out today, that cost didn't even include the cost of anesthesia, which is an additional $500 for every separate surgery!! Because my case is so complex, involving a serious infection and bone grafts, it will probably take 8 to 10 separate surgeries!! I was in hyperventilating shock, to say the absolute least.
When I met with the financial assistance director at the Dental School, I remained hopeful and positive that she would find a way, any way to help me. After years of searching, this is truly my last stop on the road to healthy teeth. She informed me that, while people on temporary disability can receive a grant to have their entire dental bill covered, those on permanent disability get a grant for $1,000!! She also said, with a smile, that I was approved for the maximum financial assistance they offer. I was not smiling when she further explained, that meant 30% off some of the procedures.
So, I headed to Baltimore praying the 17 thousand dollar bill would be reduced into a more manageable number. Instead, she added the $5,000 for anesthesia and then tooth by tooth, took 30% off a few procedures, subtracted the 1,000 dollar grant... and.... I am left with a bill for $18,967!!!
My primary care doctor and hematologist have both strongly suggested this surgery be done as soon as possible because in the past few months alone, I have been on antibiotics more than off. This alone, will eventually cause the infections to become resistant to antibiotics. I've also been admitted, twice, to the hospital for IV antibiotics in the past 3 months.
They fear the infection will soon spread to my blood and/or heart, left untreated.
I'm not sure what else to do... I guess I'll start here.....?
When I shared with my family that close to 1,000 people read my 'fuck the system' post, my daughter said, "wow if each of those people donated like 20 bucks, you'd have enough for your surgery!" So, she added me to her gofundme page and asked me to share it on here.
Click here for more info on her campaign
I can promise you that any money donated will go directly to the dental work and if, by chance, I receive more than I personally need, I will be starting a campaign for other people, like myself, that are in this situation. Something must be done to help the hardworking Americans in this country receive the support they need when they are no longer able to work. It is so easy to ignore the sick and elderly & so incredibly unfair to do so! I will continue to be the voice for those on medicare who need dental coverage, both basic and extensive.
If you'd like to join us and help financially, share the info with others, or even just stop to read the update... thank you so much for your support. I was feeling very hopeless and alone through all of this. Just knowing that so many people care enough to take the time to read my story has been so reassuring.
With love and gratitude,
~Stephanie
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