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    • #38265
      Jen Cueva

        Most hospital systems and clinics now have patient charts online. This often means patients see test results before speaking with their medical provider. Messaging our healthcare team is also an option on many of these platforms.

        Is accessibility to these records online before speaking with providers a good thing?

      • #38276
        Brenda Denzler

          Absolutely and positively YES! It is a good thing.

          It gives me time. Time to think about what the test says. Time to look up questions about it so I understand it better. Time to gather my thoughts so I can ask more intelligent questions when I talk to my physician.

          • #38280
            Jen Cueva

              I’m with you, @brendad53; I love this accessibility! I can also monitor any trends in my labs, Echocardiograms, etc.

              You bring up an important point; if we are looking at our results and taking time to research, we need to be sure the sites we gather our information from are credible resources.

              But before upcoming appointments, we can make a list on our phones or somewhere to mention our concerns at the visit. My vintage mind is not the best, and I often forget I have notes I wanted to ask on my phone.

              You must make a ton of notes, Brenda. I carried a small notebook when I was early in my diagnosis phase but then would sometimes forget it. Darn it, CRS! Do you do this on paper still or on an app?

              My PH team and nephrologist both end our appointments by asking me if I have any other questions for them. This often jars my memory, but not all doctors do this.

            • #38409

                I am with you on this. I firmly believe it’s a good idea to get your reports before returning to the physician that ordered the test. This way you have a good understanding as to which questions to ask about your results after doing some research online. At least it works for me!

                • #38423
                  Jen Cueva

                    Hi @rebeccacomer, yep, it works for me, too. However, like last week, I learned of test results from the ER visit that they neglected to mention, which were quite important.

                    That was when I sent the info to my PH team so we could start a treatment plan.

                    Do you find you make notes about the questions you have on your phone so you don’t lose it? Or do you prefer to use a small notepad? I’ve done both. But at times, I forget until I’m heading back home. Hehe.

              • #38277
                Roger Bliss

                  I like it. Most of the blood tests show where the normal range is so that isn’t a big deal to figure out. Some of the scans are confusing. If something gets my attention and it isn’t brought up at my appointment, I can bring it up. I can see on the flip side where someone might get freaked and overreact.

                  • #38281
                    Jen Cueva

                      Hi @wheeldog, I also usually look at labs and make any notes on questions I may need more details about.

                      Others mention that they do not look at all because it increases their anxiety. They wait until they see the doctor. Whatever works is my thought.

                      Do y’all find the online message feature helpful? I usually only use that for non-emergencies. If it’s something I need within 24 hours, I usually call.

                      My old PCP in Texas often messaged me back on my online chart at 3-4 AM. I always asked him if he ever slept, LOL. He was such a great guy and had a massive caseload! He’s almost ready to retire now.

                  • #38290
                    DeLois Tweedy

                      I think this is a very good thing. I appreciate that I can see lab results, etc and even compare them to past labs/tests. I usually do have questions for my doctor regarding my chart.

                      And I have used the email feature on my chart. My doctor’s office called me back right away.

                      • #38297
                        Jen Cueva

                          Hi @deetweedy, I’m grateful you also found using your My Chart beneficial. It certainly helps when you have healthcare providers who quickly respond to your questions.

                          Some have heard that their healthcare team isn’t fond of online charts.

                          Thanks for sharing your thoughts on how you use online charts. I hope you have something fun planned for Mother’s Day weekend, Dee.

                      • #38308
                        V.R. Peterson

                          While I don’t have PH (I’m here to find ways to support my son), I definitely like to look up my test results for my annual physical. If it shows anything is amiss, I can research to see what it might possibly mean. Then I wait for the doctor’s office to call me, and ask questions at that time. So far, even at my age, the only abnormal results meant high cholesterol and possible cancer or sleep apnea (that turned out to be sleep apnea, confirmed with a sleep study). It really surprised me that a blood test could detect sleep apnea.

                          I also record my results in a spreadsheet so I can see if abnormalities are getting better, staying the same or getting worse. If it’s getting better or staying the same, I figure the doctor won’t be any more concerned this time than he was last time.

                          • #38312
                            Jen Cueva

                              Hi @mamabear007, the patient charts online are indeed helpful. I can look back through the labs and see any trends. In MyChart, they graph the results already.

                              As you mention, if something looks off, I’ll make notes to ask my doctor.

                              Manny is getting ready to be tested for sleep apnea. I guess they are sending the equipment via mail. I am 98% certain he does have sleep apnea. His cholesterol is also higher than it needs to be. Crazy because we don’t eat a lot of fatty foods.

                              Sleep apnea can affect blood sugar levels, so his medical team believes his borderline diabetes results from sleep apnea. I’ve been trying to get him tested for years. Even before I was diagnosed with PH, he worked shift work, which started then. That’s been over 18 years!

                              Sorry to ramble, but grateful we can share our experiences. I am thankful it was sleep apnea, not cancer, in your case. How long have you had sleep apnea? Did it take some time to find the best fit and mask?

                              • #38317
                                V.R. Peterson

                                  I was diagnosed about five-ish years ago. The doctor said it was mild enough that I didn’t need a cPAP, and the blood test would let him know if I needed tested again.

                                  BTW, I can’t remember the name of the actual test, but the size of red blood cells is what it detects. My husband says my snoring has greatly decreased since I’ve lost weight, so I suspect the apnea is either reduced or gone.

                                  I think it will be much more convenient for Manny to do the test at home. I had to go to the hospital for a sleep lab, and those hospital beds aren’t really conducive for sleeping.

                                  The main thing I remember is I had a really hard time falling asleep — and when I did, I had nightmares about the sleep technician gal telling me I failed the test and it would have to be redone. In the dream, I promised her I’d sleep better next time if she didn’t tell anybody how bad I’d done. Sometimes I dream really weird dreams. When I woke up for real, the sleep technician asked if I’d had any memorable dreams. When I told her about the dream, she laughed and told me I didn’t have to redo the sleep study, that they’d got enough data. Now I’m wondering if my brain waved indicated something about the dreams, something I’d never considered until just now, as I was typing my reply. I guess I’ll never know.

                                • #38326
                                  Jen Cueva

                                    Hi @mamabear007, I’m grateful you didn’t need a CPAP.

                                    How much weight have you lost? Manny has gained about 20-25 pounds in the last 2-3 years. This has affected his snoring; he is louder and worse now than before.

                                    His device arrived last night. He plans to use it tonight. Like you, I had mine years ago in a sleep center. Manny and KK dropped me off. I was like you, paranoid about the tech watching me sleep. I took forever to fall asleep, too.

                                    The tech after mine told mold I barely had enough data since I didn’t sleep much. Plus, I only required oxygen, no sleep apnea. Thankfully I didn’t need to redo it.

                                    Your dreams sound appropriate because those places are not home. Thankful I had a full-size bed, not a hospital bed. I bet they could read the data when you were dreaming and sensed you were deep in dreams, not sleep.

                                    Thanks for sharing your experience. Enjoy the rest of your week, <3.

                                  • #38334
                                    V.R. Peterson

                                      @jenc, it wasn’t a lot of weight loss, about 20 lbs. I’ve still got another 50 lbs. to go. <sigh>

                                    • #38352
                                      Jen Cueva

                                        Hey @mamabear007, twenty pounds is a lot. That’s what Manny needs to lose. He wore his device last night for sleep apnea, so we should hear back soon.

                                        Be proud of yourself for those 20 pounds! It’s so challenging to get the weight off. But it seems like it comes on much quicker, hehe.

                                        Maybe break that 50 pounds into smaller goals. That seems to help me when I do any tasks.

                                        Kudos for the loss of 20 pounds!

                                      • #38354
                                        V.R. Peterson

                                          Thanks, @jenc. I’ll keep working at it, one day at a time, until I’m at ideal weight.

                                    • #38439
                                      Bridget Reddy

                                        I find it helpful so I can hear what they have to say and be able to prep myself for questions when I get there.

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