In December, Jenny got sick. We thought that it was a bad cold, or at worst....the flu. Our family doctor sent her to a rheumatologist due to her symptoms including the swelling of her hands and feet. After a few appointments, and rounds of blood tests, the doctor said that she had the markers for autoimmune disorder, but that it was too early to tell which one. That was difficult to hear, but we thought that we could plow through it and do whatever it took to keep her healthy. The doctor began her on a few different medicines that are typically prescribed to autoimmune patients. A few weeks ago she began having a loss of appetite followed by vomiting, diarrhea, and a cough that would produce smears of blood accompanied by extreme fatigue and shortness of breath. She called the rheumatologist, but he was out of town. She had an appointment on 6/30. She called our family doctor to get an appointment, and did not receive a call back. On Monday, June 19, she had a gynecological appointment. Her gynecologist sent her straight to the emergency room. There it was determined that she had fluid on her lungs, low kidney function, extremely high blood pressure, and low platelet count. She was admitted to the Carteret Health Critcal Care Unit. They began treatment right away and called in specialists. The specialists knew pretty quickly that she needed a facility that could deliver more acute and advanced care. She was transferred to Vidant Medical Center on Wednesday, June 21. Without question, I knew that I, Jocelyn, and Jack had to go with her. This was a life threatening situation. She needed us, and we needed her. I booked the cheapest hotel room that I could find for 4 nights, in hopes that they could fix her and that we could all go home together on Monday. Right away, the medical professionals knew that in order to save her life that they must begin treating for TTP, a rare blood disorder. Jenny's blood cells were killing each other. If her gynecologist hadn't sent her to the ER on Monday, she would not have made it to her rheumatologist appointment on June 30th. The treatment for TTP is plasmapheresis. It cycles her blood through a centrifuge, taking out the toxins and giving it back to her while mixing in "frozen fresh plasma". She is responding to the treatments well, so far, but this will be a long process. She will be in the hospital for at least another week, on top of the several days thay we've already been in Greenville. Here is why I'm asking for a little help. She still needs us, and we all still need to be with her. Having a hotel room allows all of us to see her, with Jocelyn and I switching out and Jenny never having to be alone. This is the most scared that any of us have ever been and we want to be together. Unfortunately, we don't have much savings right now and due to her illness, Jenny has not been able to work in almost 2 months. Several weeks out of town unexpectedly is adding additional financial stress. I don't like asking for help, but my pride is meaningless in our current situation. If you have the means, we will appreciate help in any amount. PLEASE do not burden your own family to help mine. Many hands make light work, so I figured that if I asked the masses to help in small amounts, I could lighten the burden of asking a few. Thank you all for all
of your support and your love. This has been an extremely hard time for our family. It means so much to us to have your love and support.
TTP has been ruled out and they are now leaning toward aHUS. This will make it an even longer stay for us to make sure that that get her well and ready to come home.
clinical diagnosis is AHUS. She has begun IV infusions of a drug called Soliris. This puts us into our third week in the hospital!!!
After more than 3 weeks in the hospital, we are finally home!!! We are beginning to adjust to our new normal of recovery. She is still in need of dialysis 3 days per week, and a weekly (soon moving to bi-weekly) IV infusions of Soliris. Due to illness, she has been unable to work for months, and it will be a long time before she can work again. Through the generosity of freinds, family, aquintances, and strangers, we were able to be by her side as she fought for her life while in the hospital. The current need is that due to loss of income, and the costs of being away from home for nearly a month, we are in a financial strain with everything coming due and not enough to go around. Once I figure out a way to eliminate some of our unnecessary debt, we will be just fine, but right now, we could still use some help if any is still available.
Thank you ALL for everything that you have done for our family! It was a very dark time for a while and you allowed us to get through it together. It has been the greatest gift that I have ever recieved and I am humbled by your generosity.
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