Quote:
Originally Posted by evansmom
Hi Laura,
Sorry to hear you are still struggling. I can only imagine how frustrating it must be. I really hope Cleveland can shed some light on all this.
With all the continuing GI symptoms, it is almost certain that you are not absorbing all the nutrients you should be. Could a lack of something, a vitamin say, be the cause of your severe fatigue? I'm thinking you've probably had your nutritional status checked and re-checked by now but maybe you're lacking something no one thought of checking yet. When I think of severe fatigue, malnutrition is the first thing that comes to mind.
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Do you feel that the Cleveland Clinic is an appropriate place to go? I really honestly will go anywhere. I just thought with having the top GI place would be helpful.
Actually I have begged and begged and begged them to check nutritional studies. They have absolutely refused stating there would be nothing wrong with them. Ha, I know. They finally just drew some levels. My B12 was SEVERELY low. So I got three B12 shots (a week apart) but it has since not been rechecked because "that will take care of it and it will be fine". My vitamin D was also low. So taking a month prescription than a recheck. Otherwise they were all normal. But they only checked a few. Any insights into what you think would be beneficial to check would be greatly appreciated. I think if I can go to them and say xyz needs to be checked they would be more willing....
I got reaffirmed of my decision to go elsewhere after my appointment with GI today. I was basically told that I need to stop calling when my gut flares, when I am dehydrated, think my potassium is low, etc. There is nothing they can do and I just need to take antidiarrheals and drink gatorade. That they are referring me to my primary care provider to handle my gut from now on. And "they can always page me (GI) if need be". So my transplant doctor does not want to handle my GI or fatigue issues. And now GI does not want to handle my GI or fatigue issues. Do you hear my screams of frustration!
I would head to a second facility now. But it is more convenient to wait until Ryan is done with school for the year (June 6). So June 6 we are loading up and driving to Ohio unless it seems a different facility would be better.
I did tell them I want to stop all medications and see what happens with my gut. I am stopping the Budesonide, which will allow me to stop the acyclovir. Waiting confirmation to stop the Zithromax so than I can stop the Vancomycin.
And my Mayo providers wonder why I am so frustrated and irritated!
Laura