Things to monitor, what to tell your doctor

Hello Karen, @immmm

What a great thought, I'm so glad that you posted this idea. I'm a firm believer in being a proactive patient. I treat each doctor's appointment with preparedness and a list of questions. It is important to let the doctor realize that you and he/she are a team and not just someone who is there as a "consumer-only." I keep a list of questions, concerns in a word document and add to it each time something new comes to mind. Perhaps it is a symptom, perhaps it is a question that has come up from reading an MRI or CAT scan. When the questions begin to multiply I either make an appointment or I put in a message to the doctor through My Chart (the patient portal).

I would love to have a discussion about how the rest of you prepare for your appointments and/or deal with questions and concerns you have. Please let us hear from you, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson @gman007 @mollie59 @amani79 @collielady @somefan @debf @lucci50 @derekd @gulzar @jenchaney727 @lynnkay1956 @amani79 @kenlucier @cjohn @gaylejean

We (my wife who has NETs) and I definitely write notes/questions before an appointment. If there are questions between appointments we do use the patient portal which is very helpful. The entire team at Mayo is very responsive to questions asked. We don't abuse the portal with silly questions. I keep a detailed diary of who said what to whom about what and when. A lot of the diary has to do with insurance companies as my wife is not on Medicare and we've had so many excuses from insurance on non-payment of items. It becomes draining all the follow up that is required. I've mentioned this before, we audio record each visit (app on phone) and I upload it to YouTube (private) so our kids or whoever can hear it first hand if they wish. One of our daughters is a P.A. who interned at Mayo. We are not shy and I doubt anyone on here is either. As the saying goes... "you have to be your everyday doctor". No one cares more about your health more than you. Its hard to imagine what life was like with a disease like NETs before the internet and forums, etc. Patients were each on their own little island.

By the way, anyone else going to Univ. of Iowa for the NCAN patient conference a week from today?

Hi Tom @tomewilson

What great ideas! Thanks for sharing - you and your wife definitely have a system you are following. Thanks to places like Mayo Connect we are no longer islands all by ourselves but we have a supportive community.

Teresa

@hopeful33250, @tomewilson
Thank you!! We have started videoing the dr. Visits since you mentioned it and this has been even more helpful with my friend in the hospital, no one wants to miss the doctor coming by! Now that we know about YouTube, we won't have to break it down to little 1minute sections to be able to send!!!!!! I thank God for y'all! (Yep, I'm a Texan!)
My concern for my friend is that she was short of breath with minimal activity, increased fatigue but just mentioned at her monthly visits when the doc would ask-- when she went in, her O2 was at 76%. She had no idea-- leaky valves in heart had worsened since her last echo done 6months ago, now has pulmonary artery hypertension. I feel that maybe the cardiologist is not as familiar with the havoc that NETS's venom can have on the heart. The ER doctor wouldn't "bother" her cardiologist because her EKG was normal. The oncologist had called, thank goodness. Thank you all for your responses and helpful hints.

Dr. Heidi Connally at Mayo is one of the top NET Cardiologists.

Hello Karen @immmm

I am sorry to hear of your friend's heart problems. Yes, there is a cardiologist at Mayo in Rochester, who is recommended by NET specialists all over the U.S. for her work with NET heart valve problems. I wish your friend well.

Will you keep us posted on how she is doing? Please follow up with any questions you may have.

Teresa

These are all tremendous ideas. Because I take opiates for my pancreatitis pain, my memory is not spot on and sometimes is not there at all "what doctor visit I ask my wife?" I keep everything on my computer and have a physical folder for each doctor in case there are any hard copies of anything I may need to be able to refer to. My docs who take care of my pancreas issues are about 3.5 hrs. away, so I do use mychart regularly if it is not something I feel can wait until the next visit. Yes! Please be your own advocate because no one else will be. I don't want a confrontational relationship with a doctor, but if you feel you are getting a brush off, never be afraid to say so. Because of the way insurance is priced, be sure and get our money's worth for us.

Hello @gman007

I appreciate your sharing some of your organizational methods with us. It does look like you have a system that works well for you. I agree that we all need to get our needs met from the medical professionals that we see. Being proactive is important.

Teresa

@hopeful33250, I do the same thing; I form a list of questions for my dr visit on my computer. I add to it over the weeks or months prior to the visit. Then, I print it out and take it to my visit. My doctor always comments on how organized I am with that.

@windwalker Yes, I understand - if I don't come in with a list - the doctor seems disappointed!

Teresa