Dr Levine started out with the facts. He is straight forward. No-nonsense. No niceties or formal introductions merely facts. He explained the complicatedness of my situation and how with so many disorders and so many things against me that cures are not possible only prolonging and hopeful better quality of life. We listened.
He explained that insurance will not approve IVIg treatments. But in scouring my file he had another idea. I transplant form of plasmapheresis. I will surgically have a catheter and port implanted into my heart. From there, bi-weekly, I will have all of my blood drained, thru my heart. The antibodies and anti-coagulation plasma will be removed from my blood. It will be re-oxygenated and put back in. I will also have to go on medications as they will be adding plasma and healthy blood to my body.
The doctor will use this as a treatment and a diagnostic tool. I will also change medications to Northera. I will be taken off midodrine. He is hoping less seizures and passing out. More energy and less debilitating pain. I'm hopeful.
From there we will evaluate and continue to change and modify meds and treatments.
Without treatment, I will not be able to hold on much longer. So I'm grateful for options. I was so scared. It is so scary to feel yourself literally "dying". Each day I am weaker and worse than the day prior. Each day I have been fearful of my last days. I try hard to say what i want said and am careful about making sure my relationships are in order. I can feel my life slipping from my body. It's frightening yet I know death would be an end to the pain and torment. But I can't bear to say goodbye.
I will fight. I will try. I will give my all. I will do whatever it takes. Absolutely whatever. I love my family. I love my Savior. I trust my Savior. I know my Heavenly Father lovingly wraps His arms around me. Because of Him, I still live. Because of. Him, I have hope. Because of Him, I will be able to live again with those that have gone before and those that will live after I am gone. But I am grateful for more time and more hope and more help to continue to walk this life.
I'm praying for a successful treatment. I'm trying to focus on the benefits not the pain and side effects. I ask all reading to please pray with me. I know pray works. I know it is a great blessing. I know I am known by God on high. At that is comforting and gives me strength and courage to keep going.