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    • #18155
      Colleen Steele
      Keymaster

      We are approaching the beginning of July. What do you have on your calendar this month in regard to medical appointments, tests or procedures? Share with us what is in your upcoming future so that we can give you emotional support and Phriendship.

    • #18216
      Jen Cueva
      Participant

      Thanks Colleen! I just had labs this morning as I go at least every 2 weeks. Then later this month I go for an EKG, PH appointment, and waiting to hear if they’ll need my Echo this month or if I can wait.

      What appointments do you have for your son? I’m sure he continues to have many appointments.

      • #18228
        Colleen Steele
        Keymaster

        Jen, it sounds like so far your July appointments are the typical monthly check-ups. I’m glad to hear it’s not more than that, although I know all those appointments make you feel like you live at the clinic. My son has a similar July but a lighter load than usual. He has labs and an appointment with his pulmonologist and PFT scheduled. All just routine appointments.

        • #18235
          Jen Cueva
          Participant

          Yes, Colleen, just the usual appointments is far! But as you mention, like your son, these appointments often feel like you live at the clinics.

          And ohh gotta love those PFTs! Hope y’all get good results this month!

        • #18246
          Colleen Steele
          Keymaster

          Thanks Jen! I am a bit more anxious to see the results of this next set of PFT’s. Earlier in the year his PFT’s were the best he ever had but then then he caught a cold which developed into a cough he couldn’t shake. This caused a decline in his PFT. The last one showed improvement but I would love to see him get back to his best again.

        • #18281
          Jen Cueva
          Participant

          @colleensteele, I will be praying that your son gets good results at his PFTs! Please keep us updated.

          @brittany-foster, I do go locally for some of my labs. The other ones I try and schedule before or after my other appointments and tests while I’m in the Medical Center. My PCP is local and my hematologist has a local office as well. Thankfully, both are within a 15-minute drive. Yes, often some labs need to be drawn at specific locations. Some weeks I may gave 2 separate draws at different locations on the same day!

        • #18301
          Brittany Foster
          Keymaster

          Jen
          I’m glad it’s a short drive for you! Especially if you have the appointments unexpectedly or if you have to just get some routine labs. Thinking of you! Hopefully your veins aren’t all used up by now!

        • #18315
          Jen Cueva
          Participant

          Thanks, @brittany-foster! Ohh I’m sure my veins are not as scarred as yours with all you’ve been through this last year or so.

          Thinking of you and hoping your recovery continues to go well. I’m sure if you’re home from your beach trip, you’re recharging!

      • #18237
        Brittany Foster
        Keymaster

        Jen,
        Do you have to travel far for the lab work? Sometimes it can be a pain for me to have doctors at different hospitals because they don’t always get each others results. My primary care usually makes sure to get all records even if its at different hospitals. It just can be hard when traveling just for bloodwork and labs so I hope that it’s somewhat local for you!

        • #18247
          Colleen Steele
          Keymaster

          All of my son’s appointments are about an hour’s drive but thankfully they allow his blood work to be drawn at a lab practically around the corner from us. Two of his labs are time sensitive so I also will schedule appointments around when those need to be drawn so as to kill two birds with one stone.

    • #18226
      Rebecca Talkie
      Participant

      I am totally new. In fact, not even sure if I have PH or not. It showed up on a CT of the chest. So far my ECHO shows Aortic regurg and mild to moderate Mitral value issues. I think a right heart cath is on my slate for July but despite one message asking about it, I haven’t heard back. Do I have to wait until I get really bad to get that test. I fell this past weekend. I am not sure how. I was getting out of a cab and the next thing I know, I have the sensation of falling. Scraped my face and hit my head on a pole. I look bad but saw a Dr. today who said no concussion or need for further testing. Now I have to wonder….did I pass out for a few seconds or what? I got up a few minutes later with help, more concerned for my back then anything else. So… on to the more pressing question. What is next for me.

      • #18231
        Colleen Steele
        Keymaster

        @becca Rebecca, if they believe PH was shown on a CT then push for the right heart cath. That is the only way to officially diagnosis PH and it will help determine how far along the disease is and what treatment options should be considered. The fact that you passed out can be a tell that you indeed have PH but I suppose your other health concerns could have contributed to it as well.

        What I would recommend is making an appointment with a PH specialist, especially if your current doctor is dragging his/her feet. Here is link to help you find one in your area.
        https://phassociation.org/patients/doctorswhotreatph/

      • #18238
        Brittany Foster
        Keymaster

        Hi Rebecca,
        I’m so sorry to hear about your recent fall. That’s so scary to fall and not really know exactly what happened. Before realizing my oxygen levels were dropping, having fainting episodes or episodes of “blacking out” for more than 10 seconds really left me feeling uneasy. I hope that you can talk with your doctors about doing a right heart cath and really advocate for yourself about this. Patients are allowed to request testing and be an important part of their medical team. Here for you as you go through all of this! I know tryin to figure out symptoms and reach an explanation can be very challenging.

    • #18257
      Karen A Triplett
      Participant

      Rebecca I hope you have recovered from your fall. I know how scary that can be. I, too, am new to the diagnosis of Pulmonary Hypertension. I was originally diagnosed by my cardiologist in February after an Echocardiogram and Catscan of my chest. My cardiologist told me to start using oxygen 24/7. I had been wearing it at night with my CPap. I moved to another city right afterward and had to find a new cardiologist. Over the next few months I ended up in the hospital four times with problems breathing, Pneumonia and Pulmonary Edema. Finally found a cardiologist that I trusted with my heart and had the right-heart catherizarion (and left) done the end of June. I did a follow up
      appointment with my cardiologist July 2nd. It was confirmed I have Pulmonary Hypertension. I see my new Pulmonologist July 8th. When I first saw her it was not confirmed, now it is. Sometimes you have to be aggressive in finding the right doctor.

      • #18260
        Brittany Foster
        Keymaster

        Karen,
        I’m so glad that you have found a good doctor and that you are going to be seen on the 8th! That is coming up soon. I huge part of my advocacy for myself has been making sure that every single doctor that is part of my care team is a good fit for me. This means finding doctors that believe me, take my symptoms seriously, are willing to find new and innovative ways to treat me, and doctors that are willing to also take my physical pain and mental health into consideration when treating me. Ones that treat me as a whole person hold a special place in my heart and have literally saved my life.

      • #18271
        Colleen Steele
        Keymaster

        Karen, I will keep you in my thoughts on the 8th. Let us know how it went. Finding a team that you trust and feel comfortable with is the first big step after diagnosis. I’m glad to hear that things are moving along for you.

      • #18280
        Jen Cueva
        Participant

        Karen, good luck to you on your appointment on the 8th! It’s really important as you’ve done to advocate and find a doctor who is a good fit! This is a great start!

        Please keep us posted,

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