Tomorrow (August 1st) is a big day for Colleen as we are going back to Philadelphia to speak with her specialist. First, we are going in for a breath test to see if she has SIBO. If it is confirmed that she does, it could be the start of relieving at least some of her symptoms. After that long test, we have a bit of a delay before she goes in to see the specialist himself. It will be a long day, but hopefully a productive one.
As for making a list, this is very important: When you go to see a specialist, write down everything you have been experiencing. Even if you think to yourself "I have this symptom, but it probably isn't related to my Gastroparesis...", write it down anyway. Perhaps that one symptom that you blow off because you think it is unrelated will lead your doctor into a new direction. Not that you don't have Gastroparesis, but perhaps your condition is being made worse by something else going on in your body.
When you write up your list, show it to your loved ones, or whoever is going with you to the appointment. Loved ones sometimes see things differently than the person actually experiencing the condition. They may have something to add; but even if they don't, at least they will know what it is you are going to discuss with your doctor. As a loved one, you really don't want to go into these appointments blind - you need to know everything that is going on.
It is my general rule that I will typically not say much during the appointment myself - allowing Colleen and her doctor to discuss the condition without me butting in every 10 seconds. By the same token, you have to be ready to speak up and be an advocate for your loved one. Be ready to back up what he/she is saying to the doctor. If your loved one is complaining of intense stomach pains, make sure the doctor knows that you have seen the effect of it first hand. If your loved one's condition has worsened, make sure the doctor knows that you are seeing the decline.
For many doctors, they see hundreds of patients. They have your history in a folder, and probably remember who you are but the vision is cloudy. It makes sense, as you often don't see a specialist more than a few times a year, if that. Nobody sees the pain, suffering, etc. nearly as much as you do as a loved one. You are more of an expert on your loved one's condition than you may think you are. No, you can't cure it. You can't prescribe a drug, or make medical recommendations of any kind. You are a different kind of expert - the one who sees the patient every single day and can analyze their moods, their energy level, their emotional state, etc.
In the end, if you are making a long drive (or even a short one) to see a trusted expert in the field, make the time worth it. Make that list. Check it every day. Don't ever leave that doctor's office saying to yourself "I forgot about this symptom!"
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