Me Without Healthcare….

Again, a rare occurance to get political on my blog.  Because whether people agree with me or not, this is a matter of life & death.  The AHCA/BCRA must not pass!

I do not joke about death.  Yet, after asking nicely with no movement & amendments sure to get worse, I know no other way to get through.

The 13 authors don’t want to be called heartless or murderers then don’t pass this cruel bill.

Some may say it’s extreme, but I’m tired of playing nice & being ignored, & getting canned responses about how I must take more personal responsibility when I’ve taken plenty.

I’ll be sending this mock obituary through to my delegation tonight because I think they need to see the consequences of a “Yes” Vote:

Nicole “Nikki” S. died of chronic rejection in a Philadelphia hospital.

Nikki was born on May 25, 1977 in Watertown, SD to two loving parents. She graduated from South Dakota State University in 1999 with a degree in Journalism. After moving to New York City in 2000, & holding various positions, Nicole began working for WebMD as a Editorial Assistant for over 8 years. In 2010, she moved to the Lehigh Valley Pennsylvania & worked in insurance & customer service until she took disability in 2015 due to her lung disease (Lymphangioleiomymatosis or LAM). She received a double lung transplant in December of 2016.  Because of her lung disease & genetic disorder (Tuberous Sclerosis Complex) she was unable to have children.  However, she was an active volunteer in many nonprofits & a champion of medical research.

Her family & friends remember her as a kind & passionate person who strived to help others. Unfortunately, her life was cut short due to greed.  Her COBRA eligibility ended & unable to return to work, she was unable to afford another plan.  New restrictions on Medicaid caused significant hardship & she was unable to qualify.  As a result, she lost her ability to pay for her immunosuppressant drugs & aftercare (such as doctor visits, weekly blood work, bronchoscopies, & imaging) which led to chronic rejection.   

She also experienced kidney failure at the same time as one of her immunosuppressant drugs was unaffordable, her kidney tumors from her rare diseases returned, & she was unable to obtain a living donor because of fear of pre-existing illness clauses.  She tried dialysis but soon met a lifetime cap which only added to her health difficulties.  Her untimely death was entirely preventable.

In her free time, Nicole loved writing, documentaries, movies, & music.  She had a blog, wrote 2 novels as part of NaNoWriMo (National Novel Writing Month). She volunteered for the Tuberous Sclerosis Alliance, The LAM Foundation, & was also selected by the American Society of Transplantation as a Patient Ambassador. She sat on panels evaluating research proposals in her rare diseases. She also spoke to professional groups like the American Thoracic Society about her rare diseases. She also had written letters & visited the Capitol as she was able to over many years to push for support for medical research.

Pallbearers will be Senator Mitch McConnell, Senator John Thune, Senator Pat Toomey & the other members of the BCRA draft committee as well as Senator Mike Rounds. Since none of them will bother to show up, there will be no visitation.  A tree will be planted in a plot near her other family members in South Dakota & a memorial service will be held for friends & family.  Honorary pallbearers will be her family & friends.

Nicole, her family, & friends would like to thank Senator Bob Casey, & Senator Kirsten Gillebrand for their dedication in attempting to help Nicole keep not only her COBRA plan, but also attempt to ease her transition onto Medicaid by opposing the BCRA.

Hi! Remember Me? I’m TSC!

I had another check up Thursday.  My lungs are still doing great,  but I wish I could say the same about my kidneys.

I started back on Rapamune (sirolimus) yesterday, so I’m confident that might help when it fully kicks in, as it did when I was pre-transplant.

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Draft of FDA Testimony

Representing the TS Alliance & The LAM Foundation both when it counts in research & behind the scenes has been something I have championed for a very long time as my health has allowed.

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65 Percent –New Transplant Doc

I found out about this movie much too late to back their crowdfunding campaign, but even then I was intrigued.

I found The Wave Set on social media & reached out to them wondering when the film would be released.

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