What is Myasthenia Gravis
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. At about 14 cases per 100,000 (in the U.S.), it is one of the lesser kno...
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Plasma Exchange with Fistula?
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My daughter has had to have many, many plasma exchanges. They can no longer put in a line sub-clavicly due to the scar tissue. They went in in November and created a fistula (like they use for dialysis) so that they can access a vein and an artery. We continue to have trouble with it. She was scheduled for an exchange this morning, but they were unable to do it because the blood kept clotting in the syringe. Has anybody else ever had problems similar to this?
Posted on 06/26/09, 03:06 pm |
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It is so nice to have other mothers that I can share my experiences with and know that you understand what I am going through as a mother. The surgeon that did Mary Michele's fistula called today and we have an appointment next Thursday to discuss what can be done next. I think that Mary Michele and I would both do about anything to try to avoid the cyclosporin. Just continue to pray for us as we make decisions and try to get the mg under control. 
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Hi there!
So sorry not to make contact with you sooner! Please know that I have kept ALL of these moms and daughters in my thoughts and prayers!! NanaMar...I was hopint that things have improved with Mary Michelle and that you also remember to take care of yourself! Best of luck and many blessings to you! Take care! Sandy
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Mary Michele was admitted to the hospital last Friday morning. They are planning another surgery to create a new fistula on this coming Friday. She was pretty weak and they decided she needed a series of plasma exchanges before the surgery. She has to have a central line put in for that and they won't let her go home. Her blood counts are all messed up also. She has too much calcium and no iron and potassium. They are also trying to correct that. Since we live two hours from the hospital I am staying also. We are very fortunate my husband has a cousin that lives less than a mile from the hospital in OKC. It makes it much cheaper than a motel room. Keep us in your prayers and pray for our surgeon, Dr. Suthers, as she attempts to create a new fistula.
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Just sent up a prayer right now for you both. May you both have the strength you need to get thru this time. Sarah
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Thanks so much. It is so wonderful to have other mothers that understand what we are going through. She looks and tries to act so normal that only the closest friends have any idea how bad mg can be.
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Please know that you and Mary Michele are in our thoughts and prayers, and ask for God to give the surgeon a clear mind, steady hands and positive attitude! I am sending my personal angel to bring you pease of mind and strength of spirit!!
Please keep us updated! sending a HUGE hug your way! Sandy and Natalie
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