chiari angel

chiari angel

Monday, November 12, 2012

How I Got From There To Here...

My journey has been a long one. Nineteen years to be exact. I was awaiting the arrival of my 2nd child. I had waited 8 years after the birth of my daughter to have my son and we were so excited to finally complete our family. Six months into my pregnancy I woke up with the worst headache of my life and noticed some swelling in my feet and ankles. My husband and I had plans to go to dinner that night and went even though I still had a headache. I thought getting out would do me good. But by the time we got to the restaurant I started to feel numb in my face,arms and legs. Immediately we left and came home to where my mother in-law was babysitting my daughter. Being a former labor and delivery nurse she recognized my symptoms right away and took my blood pressure. It was 240\130!! I was rushed to the hospital and was admitted to try and bring my blood pressure down. But after the third day  my blood pressure was still not budging. In and out of consciousness I started trying to pull out my I.V.s. I don't know why and I barely remember doing it. Next thing I remember I was being whisked away in an ambulance to Vanderbilt University Hospital where they are better equipped to handle, high risk pregnancy. It was my 32nd birthday. I remember being in the ambulance and waking up and the EMT saying 'Mrs.Mcgee, Happy Birthday!' He was holding a spoon and later realized it was used to keep me from biting my tongue during a seizure. I spent much of the rest of my pregnancy in the hospital. One day I was given the news by my team of doctors standing around my hospital bed. My kidneys were damaged. I probably had kidney disease for years and didn't know it since it does run in my family. I cried and cried. I had never been so scared in my life. Here I was given this diagnosis and about to give birth to my son with my young daughter at home. What I did not know was that IGA Nephropathy  is a long drawn out progression to kidney failure. The day after my son was born I was just getting settled in at home when I received a call from the hospital where my mother had been admitted a week earlier. She had passed away just 30 minutes after I had talked to her on the phone. I thought my heart would break, we were so close and I just could not bear to be without her. I had a newborn, was given the news about my kidneys, and I had to bury my mother all in the same week. So I pulled myself up and did what I had to do. I had to be strong. Over the next several years I did a lot of research about IGAN and with the help of a very good nephrologist and the right medicines I was able to keep things under control with minimal change to my kidney function. Then about four years ago I went through a very stressful period in my life and became ill with flu like symptoms.My blood pressure was out of control just like years earlier during my pregnancy. IGAN patients do not handle stress the same way others do. Being an autoimmune disease stress causes our immune system to go into overdrive and in turn attacks the kidneys leaving them scarred and damaged even more. Sitting in the exam room my doctor walked in and with a concerned look on her face said'What happened?' I had gone from stage 2 to stage 4 on my way to complete kidney failure and there was no going back the damage was done.Once again I sobbed right there in my doctors office. Immediately I was placed on the transplant list and an AV fistula was placed in my arm. I went home and retreated to my bedroom for weeks and looking back I now know I had a complete nervous breakdown. What a dark time in my life. But with a lot prayer and never forgetting that God would walk me through any storm I never lost my faith even when I was at my lowest point. Even though my health and kidney function continued to decline and now I am in stage 5 the final stage, I feel stronger than I ever have in my life. Not physically strong but spiritually and mentally strong. They say what doesn't kill you makes you stronger. Boy is that ever true!"I would rather have 30 minutes of something wonderful than a lifetime of nothing special!" -Steel Magnolias

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