Update on my sister’s situation:
Hi, Everyone. The insurance has been gone now for a few month and the coverage arrangements haven’t gone as well as we had hoped. I’m still trying to keep it together and try to do my part to heal as quickly as possible so that I can work. The hospital social worker, post-transplant team and my friends have been helping me to identify and explore options and. I can see why people give up on getting help because the applications and paperwork requirements are overwhelming. The Medicaid online application (which you have to be denied for before pursuing other things) requires that you list every medical expense that you have, including date incurred, amount, whether it’s weekly, monthly, quarterly, annually or one time only, and so on. And, you have to do this for everyone in the family, even if only one person is applying. With my transplant and my husband’s condition, we have a gazillion bills and it took me 2 1/2 days to put them all in the form. Maybe when I can work again, I should help people find benefits because it’s daunting even when you know most of what you’re doing. (Turns out the Medicaid application was denied)
More details follow in the update and thanks again for all of your prayers and support.
From my Sister, Jan (Black) Hairston:
After already overcoming so much, I am about to lose my health insurance because I can't make the payment for the premiums and it’s time limited. I have been designated Totally and Permanently Disabled and receive Social Security benefits. I am not eligible for Medicare under Social Security for 2 years from the date of award (November 2016). I have been receiving assistance from the Cleveland Clinic with the premium but that is due to end soon. My insurance is through my former employer and was just changed as of July 1st. The monthly premium is $400 more and since you can only have COBRA for 18 months, it will end March 2018. Also, because of the change, I have to meet a new deductible before anything is paid. I need coverage until January 1st of 2019 because my effective date for Medicare doesn't start until the 25th month. I will also have to cover the annual deductible and any co-pays, medications, etc. until the deductible is met each year (2017 and 2018). I am currently on 17 medicines, the most important of which are my 2 anti-rejection medications. Without these, my body will begin to reject my new heart which will eventually lead to death. One of them costs $2748/month (without insurance) for the amount that I take. I also wish to be here for my son, who has been phenomenal through all of this and who has sacrificed a lot. He returned home from college just before my hospitalization and opted to transfer so that he could be near for the transplant. (He even took care of the cat when he was diagnosed with diabetes while I was hospitalized and has to have insulin injections twice a day). I would like to see him finish college and live his life without all of this on him.
- Survived a diagnosis of Inflammatory Breast Cancer that had only a 20% survival rate, 14 years ago!
- Went through 16 weeks of chemotherapy, followed by surgery, 7 weeks of daily radiation, and 16 more weeks of chemo. Worked full-time the entire time (except the 8-week recovery after surgery).
- Participated in a clinical drug trial to help others with the same disease. The drug was not approved for IBC but was approved for lung and colon cancer.
- Developed heart problems as a result of the chemo and radiation and was diagnosed with Congestive Heart Failure in 2008. (Normal blood flow from the heart is 50-60%; Jan's was 15-20%).
- Was listed for heart transplant in 2010 after medication did not help to improve things. Continued to work full-time.
- Was inactivated on the list in 2012 because of health improvement. This lasted 3 years.
- In 2015, was reactivated on the list due to deterioration in health. Was still working full-time despite considerable fatigue and discomfort.
- By the beginning of 2016, implanting a device to pump the heart (LVAD-Left Ventricular Assist Device, like former Vice President, Dick Cheney had to have) was considered but ruled out due to risk of clotting.
- May 2016 had to have a Milrinone pump implanted into chest for continuous medication and to stabilize symptoms. It only worked for 2 weeks. Still working full-time.
- June 13, 2016 was admitted to the hospital and later told that the stay would be until a donor heart was matched. Had to get a special waiver because they could not do heart catheterizations because veins on both sides of neck were blocked from continuous testing.
- August 15, 2016, after a
- August 29 was let go from job. Discharged from the hospital on September 1st.
Other Facts About Me:
- Worked for 31 years as a counselor/manager/program director for people who are homeless, have mental illness, are addicted to drugs and/or alcohol, have medical problems and are involved with the criminal justice system.
- Supervised/mentored others who were trying to get their counseling license.
- Has worked since age 14 and professionally since 1985. Longest time of unemployment before now is 4 months.
- Hopes to be able to work again, at some point, and is studying computer science to have the capability of working from home, if health doesn't permit going in to work
From ME (Jason Black): Please, WHATEVER you can give will basically KEEP MY SISTER ALIVE! PLEASE HELP!
Thank you so much!
- The Black and Hairston Families
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