Support Chanda King's Essential Care Needs

Hello to all of my friends, family, and acquaintances. My name is Chanda King, and I live in Spring, Texas. Those of you that know me know that I have always been a very independent person no matter what I went through with my disease progressing, many hospital stays, and near-death experiences, or NDEs.

I am a 53-year-old bedridden quadriplegic due to a neuromuscular disease called Spinal Muscular Atrophy. I am at the end stages and I am presently on hospice. Last night, my hospice doctor came to my home and told me that he would be releasing me soon because I’m not dying fast enough. I have been on some very hardcore medications because of my severe pain. The doctor agreed that I cannot come off of the narcotics because it would kill me. I’ve been on this particular hospice service for almost a year now. He said his hands were tied.

Most people think that being released is a good thing, but it’s not a good thing for me. My disease has progressed so much that I am no longer able to eat and I can’t tolerate much of my g-tube formula. I am always in pain, but my medications that hospice provides help me get through my days a little easier. Those types of drugs are only given by hospice, and even Dr. Siddiqi agrees that I should never stop taking them because my body would not be able to handle the withdrawals; nevertheless, he will be releasing me. It really sickens me that people like me, who can’t get out of bed and are so fragile that they can’t even make a trip to a doctor, much less a hospital, just fall between the cracks.

I have been on hospice for almost 15 years, more on than off. It all began in 2010 when I broke my hip. I was in the hospital fighting for my life for three weeks. They released me after one of my caregivers told the doctor to release me and let me go home, and he would fix me with pillows, and he did. The hospital released me on home healthcare. I was on Interim Home Health for a year, then my nurse came in one day crying, and I asked her what was wrong. She said that she lost her job, and I asked her what was I going to do without the home healthcare company? Nobody told me that they were going bankrupt and I should look elsewhere. She told me that the company's hospice division was going strong, and I actually qualified for it. At first, I didn’t want to go on hospice. I thought hospice was just for people who were dying, but Lisa convinced me that hospice was no longer just about dying, but it was about comfort, and they would be able to control my pain. She understood my situation, and making it to doctor's appointments was really, really challenging. Hospice seemed like the best option. I was on Interim Hospice for 6 years when I fired them. I should mention here that I was on a much weaker form of fentanyl patches. The ones I’m on now are very strong. I went through the worst withdrawals from that medication. It was like being in pure hell. Fentanyl is a drug that you’re not supposed to get off of. Had I not had some morphine, lorazepam, and some marijuana that one of my neighbors grew in his backyard, I would’ve died. Since 2016, I have deteriorated a lot. I know I won’t live without my medication. Something has to be done not just for me, but for everyone like me who falls through the cracks of the system.

If that weren’t enough, my Medicaid that pays for my caregivers put a hold on it, meaning they are not paying the financial management company that pays for my caregivers. Kinda seems like the universe is saying, “Your time is up.” I don’t think so, but I need your help. Please, help me with any amount that you can. Thank you in advance and God bless you.

I would like to mention that any donations will go towards paying my much-needed caregivers and any medication not covered by insurance during this time.