I went to the Infectious Disease Specialist in Topeka today. Not sure I learned too much but we do have a plan if the C-Diff should come back. She was not impressed with the care I have received. She kept asking why did they do that? I finally told her she needed to call the doctor and ask him as I just could take what they gave me.
If the C-Diff comes back she told me to contact her office and she would treat it with a different antibiotic than what I have been given. She doesn’t want me to take either of the two antibiotics that I have been given again. If the one she prescribes doesn’t work or if it comes back after that trial, then she will refer me to the Mayo Clinic. She didn’t know KU had stopped doing fecal matter transplants.
She didn’t see any reason why we can’t go to CO. She said to go to Urgent Care or the ER if it comes back and have them run a toxin screen. If it is positive for C-Diff they are to call her office and get instructions on how to treat me. Great! Now I get to tell the doctor what to do. Do you think they will listen to me? She didn’t understand why some of the doctors had just run the short test and not the toxin screen too. I didn’t have an answer for her.
So the long term plan is I have to have two more episodes before I can get referred! Yikes! Hopefully I won’t have any more but am not going to hold my breath.
She told me to start eating some Greek Yogurt daily as well as Kefir. When I have episodes I am to drink water that has salt added to it. She said the probiotics I am taking are probably just causing expensive pee but I can continue taking them if I think they are helping.
She did say my episodes have been relatively mild. I don’t think she was too impressed with what I have been through. If the next time I have it I end up in ICU then she will refer me after that time.
She mentioned the possibility that I may also have IBS but that a Gastroenterologist will have to determine that. Feel like I am running in a maze and can’t find my way out.
So the good news is we are leaving tomorrow morning for Y Camp in Estes Park, CO. We will be there for three weeks. It will be good to get away from the summer heat of KS and get to the cool of the mountains. I have a long list of things to gather up and pack this afternoon so we can leave in the morning.
Best get busy gathering the things on my list and start packing. I will keep my fingers crossed I don’t have an episode while we are gone and will be able to do some mountain hiking.
Grateful for a safe trip to and from Topeka today, grateful we have a plan of sorts, and grateful we get to go to CO tomorrow.