St. Croix native looks to home for help
Published: May 12, 2014
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ST. CROIX - Fifteen years ago, at the age of 27, Agnes Alexander was filled with youthful energy, she lived life and enjoyed it. She was preparing to start a new job as a rehabilitation clinical educator in a small town near Miami.
When she went for a physical in preparations for the job, she said the unthinkable happened, X-rays showed two spots on her lungs and that was the beginning of her journey and struggled with systemic scleroderma - a chronic systemic autoimmune disease that primarily affects the skin.
Originally from St. Croix, she said the ordeal so far has been a struggle emotionally and physically, saying that at first she tried to downplay what the doctors said and tried to self medicate, but as the time went on, it affected more of her skin, lungs and even her heart, Alexander said.
"I'm a nurse, so naturally I tried to nurse it myself, I went home, didn't take the medication and tried to form my own alternative conclusions in my mind," she said. "But once I started losing abilities and dreams, like never being able to have children, it was an awakening for me, that was when I realized."
She said in the past few years, the disease began to affect her lungs more and more. As they deteriorated, it caused shortness of breath to the point that she now breathes with the aid of an oxygen tank 24-hours a day.
"When we realized it was affecting my lungs I started using inhalers and treatments and did pulmonary therapy and medication, but it progressively got worse and here I am," she said.
Alexander's conditions is now to the point where the only remedy is a double-lung transplant once a donor is identified.
She already completed all of the pre-surgical evaluations and screenings and was deemed eligible, meeting the criteria for the transplant to be a viable options.
"I was a bit concerned, but they determined that I was a good candidate and since I've been back in April, they've sent a letter that everything is good to go."
Part of Alexander's hardship will come from having to relocate to Pittsburgh, where the transplant surgery will be performed at the University of Pittsburgh Medical Center.
"I have to move closer to the hospital because from the time they find the donor to when I need to be on the operating table will only be a matter of hours," she said. "I have to be close and ready to go."
The USVI Minority Organ Tissue Transplant Education Program has stepped in and partnered with St. Croix Foundation to help to raise funds for Alexander as she prepares to have this life-saving surgery.
Although insurance will cover most of the close to $800,000 cost for the double-lung transplant that is expected to take well over ten hours, she will subsequently be in need of a life-time of expensive anti-rejection medication and other follow-up care.
Lillian Suttherland, president of USVI MOTTEP, said the organization is stepping in and asking members of the community for their prayers and financial support to help Alexander reach her goal of $50,000 to ease the financial strain on her family.
Suttherland said the community must always be reminded that these types of illnesses can affect anyone and no one knows how when they too would need the community to rally around them with financial and other support.
Alexander said she has been on medical leave from her job since September and her health insurance circumstances will soon be changing, where she will be expected to expend thousands more dollars every month for her special-ordered medications and treatment.
"I won't be eligible for the medicare assistance until late this year or early next year and until then, the prescriptions will still need to be filled and the bills will still be coming in, and its going to be hard," she said.
Alexander, who admits to be a very private person, said she has been humbled by the outpouring of support she has seen from her friends and family here over the past months.
She said there are many - including her parents, Richard and Mary Abott - who have inspired her to stay strong and fight for the opportunity to improve her quality of life.
She said she has learned invaluable lessons from the experience and has learned to not sweat the small stuff and to seize every moment to spread love with family and friends.
"We sometimes get caught up with worrying about things that are not important and neglect spending time with family and friends, but that is what is important in life - sharing love and living life because you never know when it will end or when it will change," she said.
To make a tax-deductible contribution to the fund created to help Alexander, contributions can be taken, or mailed, to St. Croix Foundation, 1023 Market Square, Christiansted, V.I. 00820.
People can also go online to www.stxfoundation and click on "donate" to pay through a PayPal account.
Payments must be made in MOTTEP's name for Agnes Alexander.
For more donation information, the St. Croix Foundation can be reached at 773-9898.
Donations can also be made through the National Foundation for Transplants by making checks, or money orders, payable to the National Foundation for Transplants and noting "for Agnes Alexander," and sending them to NFT, 5350 Poplar Avenue, Ste, 430, Memphis TN 38119. For online donations through NFT go to www.transplants.org, click on "find patient" and search for the donation page for Agnes Alexander.
Sutherland said MOTTEP has made a monetary donation through its Richard Locke Fund, which was set up for situations like Alexander's, but that fund has now been depleted.
- Contact reporter Fiona Stokes at 714-9149 or email firstname.lastname@example.org.