I met my husband, Cesar, in July 2005. During the course of our relationship, he revealed to me that he had a disease called focal segmented glomerulosclerosis (FSGS), and that eventually he would need a transplant. However, the disease was under control and so long as he followed his renal diet, monitored his blood sugar and blood pressure (he has Type II Diabetes and hypertension, but FSGS is an autoimmune disease so they didn't have that much of an effect on its progression), he could hold off the inevitable for a while.
Fast forward to June 2008. We had been married for a little over one year by that point, and I was eight months into a fairly rough pregnancy. He had not been feeling well for a while, so we managed to get him in to a nephrologist. Unfortunately, his condition had rapidly worsened, and by October 2008 his kidneys had totally failed and he began hemodialysis.
Upon beginning dialysis, we could not believe how much support there was for dialysis patients. There were organizations that would pay the mileage between our house and the dialysis center. There were organizations that would pay the copays for his renal-specific medications. There were support groups for organ transplant patients. The local mass transit company would come pick him up and take him to doctors' appointments and dialysis treatments if he lost the ability to drive. All wonderful things, for which we are grateful. However, when I asked the dialysis center's staff social worker what there was available for me, a new mother potentially facing the prospect of being a young widow, he sadly said there was none.
I couldn't believe it. I knew I was not the only one who had to become the sole breadwinner, the nurse, the shoulder to cry on, the dietitian, and so on basically on a moment's notice, yet have nobody to turn to when I needed help. So, Transplant Families United was formed to try to offer that assistance to others that no one was able to offer to me.
Christi-Ann Pierantoni
May 2009
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