GREAT NEWS.. (From Kinsley & Tracy) We finally have a Primary Care Doctor! (In High Point) She is great & is familiar with POTS. Such a blessing! We cannot tell you how many doctors and medical professionals have turned us away because they are not knowledgable of my health conditions. My new doctor wants to take me on as a case, patient, & learn more, she pointed things out to me that happen to my body that I thought were normal and said, no, thats not normal, that goes with your condition and we need to try to help that. She was very honest & said that she would not bet on me ever growing out of this condition, but she will continue to be my doctor here & work with Duke & Mayo to help me the best she can. She ordered lots of blood work that I just had drawn about an hour ago, to check all levels, thyroid, kidneys, etc. NO ONE has done that in so long, so thats a great sign. (And it could all be drawn out of my Port that is in my chest.) :) I get fluids twice a week now, Wednesdays and Saturdays. It takes several hours and they still want me to continue to get the fluids at the infusion center because I am not considered in stable condition. Mom and I sit and talk or I do school work. (I say its my me/us time! haha) I can tell that I feel much better with the fluids, I know now that having the surgery for the Power Port was for the best! This week we have been trying something new,1000 ml of saline (sodium chloride) and 1000ml of LR (lactated ringers). The Lactated Ringers have different electrolytes and I can definitely feel a difference! I am still having episodes, sometimes several a week and at times much more severe, but I finally feel like we have a great, supportive, & knowledgeable (of my condition) medical team behind us. The nurses at the infusion lab here in our hometown know me by name and the staff is aware of my condition. This doesnt mean they all are knowledgeable of what I have or what to do all the time if I have an episode. We had to fight for several weeks to get them to allow my mom or dad to stay with me during my infusion. However, it only took one very bad episode for three of the nurses to understand and agree that my mom will not be leaving my side. They were scared to death and were asking my mom what to do when I was seizing and unconscious for 45 minutes. I still sometimes use my wheelchair if I know I will be walking a lot and I will always have to take precautions with the smallest everyday things. But I AM ALIVE! And it could be so much worse! Our God is greater! I still KNOW God is in control and has a plan! Stay positive, Love you all
Posted on: Sat, 29 Mar 2014 16:32:54 +0000
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