My title is Ava Kaufman, and my docs didn’t assume I might be alive right this moment. I defied the percentages after being listed for – and receiving – an experimental coronary heart transplant.
Earlier than my transplant, I used to be a wholesome mom and businesswoman who cherished to bounce. I randomly observed a rash showing on my fingers and shins, so I went to the dermatologist. They instructed me that I had psoriasis, but it surely was steadily getting worse and led to extremely elevated muscle enzymes. They despatched me to a rheumatologist for a muscle biopsy, the place I fell unconscious.
I used to be rushed to Cedars Sinai the place I used to be instantly placed on life assist. I used to be fortunate sufficient to dwell 5 minutes away from the hospital. If I hadn’t, I’ll not have had entry to the lifesaving remedy I wanted. The docs decided that I had a uncommon autoimmune illness, dermatomyositis.
This illness considerably deteriorated my coronary heart – one thing the docs had by no means seen earlier than. My solely likelihood at survival, which the docs thought was slim, was to obtain a coronary heart transplant. Whereas on my deathbed, I made a promise with God that if I survived – if I used to be capable of spend extra time on Earth with my daughter, Jade – I might give again to my group for the remainder of my life. I used to be lucky sufficient to obtain a coronary heart transplant in time to save lots of my life. Coincidentally, the process occurred on my birthday.
To uphold the deal I made with God, I based Ava’s Coronary heart, a nonprofit that provides critically wanted help to organ transplant recipients who can’t entry or afford it. The transplant journey doesn’t finish as soon as a affected person has been matched with an organ. Recipients are greeted with mounting prices, seemingly countless checks, and logistical hurdles earlier than, throughout, and after transplantation.
Past the match: Transplant housing posing a barrier
To even qualify for a transplant, sufferers should dwell close to or have the ability to journey to a significant hospital or transplant middle the place the surgical procedure could be carried out. If they will’t discover preparations inside a 30-minute distance, for instance, they gained’t have the ability to obtain the transplant they desperately want. Via my very own journey, I found that if a affected person can’t afford to be close to their transplant middle for a minimum of three months post-transplant, they will’t transfer ahead with the process.
Submit-transplant housing will not be lined by insurance coverage, and only a few hospitals present it. Throughout my restoration, I related with households who have been sleeping of their vehicles within the parking storage of transplant facilities for months as a result of they couldn’t afford native housing prices, in addition to those that, sadly, returned residence with out their transplant.
I made it my mission to find housing choices in Los Angeles to assist ease the burden for transplant recipients, from paying for lodge rooms to renting houses for them to dwell in whereas receiving post-transplant remedy. There’s a necessity to deal with inequities inside the transplant group and make transplantation extra accessible and logistically possible so sufferers can obtain the essential care they want.
Organ donation saves lives.
As extra sufferers are added to the transplant checklist yearly, the demand for organs is outpacing the present provide. A vital step in shortening the availability and demand hole is to encourage organ donation;it’ss one of the vital touching methods to present again. By donating an organ,you’ree giving somebody, like me, a second likelihood at life.
At 75 years previous, I frequently mirror on the almost 16 years since my process and I’m so grateful that my transplanted coronary heart is wholesome, and thatI’mm lucky sufficient to inform my story right this moment. With elevated organ donation, we are able to improve the probabilities of giving sufferers hope. As I inform others, souls go to heaven, organsdon’tt.
Ava Kaufman is a affected person advocate.
