Tuesday, April 13, 2010, I finally had my PET test. It wasn't too bad of a test. It took about 5 and a half hours but we got breaks in between. My mom went with me just in case I got sick....which I did. The test actually began on Monday. I had to do manual PD exchanges 3 times that day to prepare for Tuesday. Doing the manual exchanges really makes me appreciate my cycler machine. One bonus though, was Monday night I actually got to sleep in bed NOT connected to a machine. That was the first time in 10 months I was able to sleep at night like a normal person.
Tuesday morning I had to be "toxic" so Memphis did my first manual exchange. They wanted a sample of what had been "dwelling" in my body overnight. About halfway through the PET I had to have labs drawn. I wasn't expecting that and I guess it made me anxious. Before we got started, I puked up breakfast. In a few short minutes, I was ready for the lab draws. One of my PD nurses stuck me and got it the first time, so everything with labs went good. I am so blessed to have 3 wonderful PD nurses.
Towards the end of the PET, the dietitian came in to visit with me. This dietitian is very knowledgeable and taught me a lot of new things about the renal diet. She was able to help me liberate my diet a bit, which at this point a little is a lot! Most of my labs look great. At least the ones I can control with my diet. I cannot express to you what an important role diet plays in making me healthier. Each item of food that is placed into my mouth goes through much scrutiny. I think of food as fuel. It's not for pleasure, it is for survival. Anyway, a few of my labs that are not able to be controlled by diet are jacked up. The creatinine , of course, is totally screwed up from Jonesboro underdialyzing me for a year. Sure I am alive, but Memphis among other medical professions wonder how. I believe its God. Also my magnesium is a little high. We are having a hard time figuring out where the source of the Mg is coming from. Memphis will straighten that out too.
The only thing I learned Tuesday that kind of upsets me....a little...not much, is that I have to start giving myself shots weekly. They are Epogen shots to help with my red blood cells and raise my hemoglobin levels. It will also help me get fewer transfusions. Its only once a week in the stomach but I think I am going to have Chris, my mom or Susie administer it to me. I can do a lot of things but I am not ready to stab myself with a needle. Here is another tid bit of information.....Jonesboro use to give me this shot once a month and then they quit giving it to me all together. Now, I require them weekly? I guess I can add red blood cells as another thing Jonesboro didn't find important!
I really hope readers get just how important this PET test is. Especially if you happen to be going to a circus of a dialysis clinic such as Jonesboro. Every PD patient needs this test to accurately calculate the correct dialysis treatment best suited for them. It is a Medicare requirement. And if I didn't get the test in Jonesboogie Rockansas, I know for a fact the other PD patients are not getting the test. And what other tests or procedures are not being done at that unit? What about the poor Hemodialysis patients who are even more critical than PD patients? It is unbelievable to me that this clinic (Jonesboro) is able to get away with this way of practice.
My PET results will be ready Thursday or Friday so I will be posting my new dialysis regimen soon! And I will actually be getting dialyized! Wow, what a thought!
Linda Burke left a comment for Jeff Wilhelm
5 weeks ago