Sorry I took so long to catch you all up from my infustion last Thursday. Lori visited Friday to Friday and we were very busy! I sure do miss the company already!
My infusion I had was for my blood disorders, Von Willebrands and Hemaphilia A, both are classic cases. My Hematologist retested all my levels when I went in after not seeing him for 4 years. I was having more symptoms since I last saw him. He had found that my Von Willebrand leverls were still low along with low levels of Factor VIII which is Hemophilla A. There is no cure for these blood disorders but there are treatments when symptoms like mine occur. The treatments replaces the factors you are missing through this infusion. The factors I am missing he explained act like glue in my blood stream. I have very low levels so my blood has a hard time clotting.
I had my first infusion done last Thursday at the Lewis Cancer Center where my Hematogolist's office is located. It was done through IV and I received the royal treatment throughout the whole process. I sat in a comfortable recliner, pillows behind my back and under my feet, snacks, and drinks. Everyone was in such great spirit from nurses to the patients that were in for their weekly chemo treatments or dialysis. They really were amazing! I got blood take before the treatment to test my levels again. Then the infusion began that was supposed to last 30 minutes than I would have to wait 30 minutes after for them to retest my levels. After 8 minutes of the infusion I felt like my neck and head were on fire and I was beat red. The nurses stopped the IV and started water to flush it out. The doctor came in and said to do a steriod shot into the IV and begin treatment over again. After it started the second time I was fine. They retested my levels after treatment and I was released to go. They told me I would hear back in a week to see if it worked on me. It was to rebuild both factors to help my blood clot.
I received a call back on Tuesday saying the treatment worked and my levels were normal after having treatment. This means that I will have this available in case I were to have any future surgeries, accidents or give birth again. I can receive it 30 minutes prior to any procedure. I also will be receieve this drug called DDAVP. It's a synthetic hormone, similar to the natural hormone vasopressin, that controls bleeding by stimulating your body to release more von Willebrand factor already stored in the lining of your blood vessels — thereby enhancing factor VIII levels. This will be the same as the infusion but in a smaller nose that I can give myself through a nose spray that will help incase I get a bad cut or during my menstral cycle to help with heavy bleeding. I am waiting for that to come into my pharmacy. I will follow up with my Hematologist once a year unless I have other complications.
I have my appointment scheduled with the Endocrinologist scheduled for October 20th. I am on the cancelation list but when I called last week I was number 26. We only have 2 Endocrinologists in Savannah so I was told a million times it is very hard to get in and that I have a very good appointment since I am a new patient. So I am still waiting to find out why my cortisol levels are so high. Say some prayers that I can get in earlier...it is driving me nuts along with all these crazy symptoms...I hope it is something I can get treatment for and can explain all this weirdness!
I have started back with some exercises. The mornings are cooler so it is nice to get out for some walking with Lucas. I have been doing some running and I am going to try and do the YMCA 5K that is coming up soon. I have to check the date out. If I can get some more running in these next two weeks I will be ready! Wish me luck...I miss the running and all the races are starting back up with the cooler weather approaching.
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