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    • #37737
      Colleen Steele

        How good are you at monitoring your health when you feel like you are doing well or at least haven’t noticed any changes?

        My son, Cullen suggested this topic because he remembers many clinic visits when he told his doctor he was holding up fine but test results came back with issues. He points out that sadly, you can become so used to feeling awful and struggling. When symptoms become your norm you can become less aware of how poorly you are doing.

        Cullen’s doctors advised him on what to watch out for and when to call them. He had a home pulse oximeter that he checked 2 times a day no matter how he was feeling. Checked it more often when he was having obvious problems. He knew at what levels it was time to call his doctor or go straight to the ER. He learned to not just rely on how he was feeling because that could be deceiving.

        Please share with us.

        Do you know what to keep a close eye on, when to call your doctor or get yourself to the hospital? What medical equipment do you have at home to help you monitor your health? Has using the equipment ever alerted you to an issue you otherwise wouldn’t have been aware you were having?

      • #37738
        Brenda Denzler

          Excellent topic. Cullen sounds like a wise young man. When it comes to breathing, I don’t have much experience with ER visits, so I’ll look forward to hearing what others’ experiences have been.

          • #37744
            Jen Cueva

              Hi @brendad53, Mr.Cullen is a wise man for his young age. As he works toward his social worker degree, he will impact many more lives. I think of him as an old soul.

              • #37751
                Colleen Steele

                  @jenc Cullen is an old soul and always has been, PH just intensified his maturity. He has been advocating for himself since he was 6 (2 years before his PH diagnosis). Doctors and nurses would often ask us, “How old is he”?!!

                • #37756
                  Jen Cueva

                    Yes, I guess that would intensify one’s maturity being so young, @colleensteele. I can’t begin to imagine what must happen inside these little ones’ minds when all this is happening to their bodies. Thankfully, kids are so darn resilient. I’ve watched many PH kids grow into young adults, and they continue to inspire me daily!

                    I’m always grateful for their parents(caregivers) as they continue to share their lives to inspire and help others in the PH community. Thank you from the bottom of my large heart. <3

              • #37743
                Jen Cueva

                  Hi @colleensteele, what a great question! Tell Mr.Cullen we appreciate his input. Maybe I’ll start texting him to pick his brain some days. Hehe.

                  I’ve been guilty of not using the equipment at home as often as I should. I do have a pulse oximeter and a blood pressure cuff. Let’s not forget the scale that I should weigh each morning. However, I do skip days. But when I feel like I am retaining fluid and my belly is bloated, I will weigh myself and usually can see why by the scale.

                  But, like with Cullen, sometimes, my pulse oximetry and BP have been within my normal limits, but I’m struggling. When this exacerbation of PH symptoms visits, I often try what I have at home for a few days. If this doesn’t offer relief, I call my PH team and often am told to go to the ER. Hence, that’s why I prefer not to call them.

                  Yes, I’ve been known to be a tad stubborn. Manny usually is the one who suggests he is taking me to the ER or calling my PH team. On several occasions, I’ve been admitted to the hospital straight from a doctor’s office visit.

                  My PH NP has encouraged me to go to the ER with anything new with my breathing and other PH symptoms. But I usually will try calling the first, in case we can do something more at home to keep me away from the hospital.

                  Regarding my CKD, my nephrologist knows I hate being admitted. She also will try what we can at home first, then order me to the ER if there is no relief.

                  I look forward to hearing from others on this engaging topic.

                  • #37745
                    Brenda Denzler

                      What scares me about what you have said, Jen, is that your team would send you to an ER. In my mind, most ER folks don’t know squat about PH, and you could be in serious danger simply because of their ignorance.

                      Would you care to nuance that “going to the ER” thing?

                      • #37747
                        Jen Cueva

                          Hi @brendad53, sorry to scare you. I should clarify that my PH team would meet me at the ER or be there shortly. It was a hospital where they had two separate PH clinics in Houston.

                          Yep, it is scary and dangerous in hospitals with no clue and no PH team. But not everyone is near a PH center that is part of the hospital. For instance, last year in march, I visited my mom and dad. Both live in small country towns. The nearest hospital I want to be taken to is almost 2 hours away. I’ve told my entire family NeVER take me to either of those hospitals. One of them, a cousin who is an NP, is in charge of their ER. He’s excellent at geriatric care because that’s what he mainly treats and simple things. However, not to be rude, I wouldn’t trust him with my care.

                          The small hospital in my dad’s small town is larger and does have doctors at a time visit from Mobile, AL, which is a larger city, but even with a cousin working there as a nurse, no thank you.

                          Not saying all small hospitals are bad, some may have exceptional medical providers, and you may find few with knowledge of PH.

                          When traveling anywhere, I usually know how far I am from a major PH clinic and hospital system that would most likely have knowledgeable staff. Advocating and education are key!

                          I hope this doesn’t scare you anymore. However, I know you’ve known this about many hospitals. Find one you trust will take the best care of you if you are alert and can make that decision.

                          Hopefully, your editing click is off; I haven’t had any coffee this morning.

                        • #37748
                          Brenda Denzler

                            Thanks. That does make it clearer.

                            I’m going to pulmonary rehab next week for the first time, and I don’t look forward to trying to explain to them that I’m not a typical pulmonary case. Nobody has heard of impaired systemic oxygen extraction, so I anticipate a bit of a struggle. As for my “mild PH” diagnosis, no one is very focused on that. But it might be a bit easier “sell” because it’s not as new a “thing” in the medical world.

                            I have these trepidations about simple pulmonary rehab. I can’t imagine being much sicker, as most of you folks are, and thinking about ERs and such. I feel anxious for you, just imagining it.

                          • #37750
                            Colleen Steele

                              @brendad53 as @jenc mentioned when Cullen’s team would tell him to go to the ER they would usually call ahead and let the ER know we were on our way. His specialist was in CA and we live in WA. He had an excellent pulmonary and cardiology team in WA who worked well with CA. So after calling CA we would then call the WA team and they would be the ones to tell the ER we were coming and someone on the team would be waiting for us.

                              I wasn’t sure if adults received this kind of care too but it sounds like Jen’s team does.

                              I think I’ve mentioned this before that it is important to know the numbers of your team that you can call on any day and time in case you end up in the ER. That way you can as the ER doctor to contact them and if they don’t, you can.

                              It’s sad to say but eventually you get used to the ER visits, or at least we did. What I mean is you learn how to advocate for yourself there, what to say and ask, etc..

                            • #37755
                              Jen Cueva

                                Hi @brendad53, good luck at Pulmonary Rehab this week. We look forward to hearing about how things go for you as you learn how the RTs at that center are educated and will offer insight into your impaired oxygen exchange.

                                With the ER visits, I think being prepand advocating for yourself is the most important thing to remember. @colleensteele offers some excellent suggestions on always keeping your doctor’s contact information and medication list nearby. Your medical ID bracelet you already have should be updated soon with any new information. Have you thought about that yet?

                                As Colleen also mentions, unfortunately, after several ER trips through the years, we tend o learn how things work, what we might need, and what we can try and relax a little more about.

                              • #37799
                                Brenda Denzler

                                  Good point, Jen. I think I’ve updated the online info that my medical alert bracelet refers to, but will double-check to be sure.

                                  As for respiratory therapy, it turned out to just be a “sign all the papers” day. I’ll go in for an evaluation next week. THAT will be the “do something” day. And that’s when I emphasize to them that I’m not a COPD patient.

                                  I am wondering where the borders are between my “mild PH” and the impaired O2 exchange. I’m sure there are no definite borders, but I’m not even sure about the grey areas!

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