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    • #31690
      Colleen Steele
      Keymaster

      We are two days into September already! Is there anything you would like to share that is on your calendar for this month? Any appointments, procedures, tests, or new treatments you would like to have our support on and discuss?

    • #31699
      Jen Cueva
      Keymaster

      Yes, happy September, y’all. I can’t believe that it is already here.

      I have a brain MRI next Friday, 9/10, for the new neurologist. MRIs have caused me some anxiety in the past, but I plan to try and do better with this one. Does anyone have tips besides taking anxiety meds?

      Otherwise, I have a follow-up with my PH doctor and labs every 2 weeks.

      Is this month all of Cullen’s post-transplant appointments? I know that keeps y’all pretty busy @colleensteele. Do you or Cullen have anxiety before these appointments, or are y’all more comfortable as time passes?

      What about your appointments? Caregivers, please share your appointments, too, so that we can support y’all as these appointments are near.

      • #31721
        Colleen Steele
        Keymaster

        @jenc going through an MRI when you have PH has it’s challenges. I wish I had advice other than anxiety medication. Cullen just tried to power through them. Try to get them to position as best they can to help your breathing without interfering with the images.

        Cullen isn’t having a bronch or biopsy this time. Once patients are post 5 years transplant and not having serious concerns, they avoid doing those. So no anxiety over those.

        We are feeling anxious about his Echocardiogram Dobutamine Stress Test. They want him to not take one of his blood pressure meds for 24 hours prior because they want his BP to rise during the test.

        The thing is, if Cullen is an hour late on his meds his BP starts climbing and he feels sick. What is a 24 hour wait going to do? We asked for a compromise, let him take his meds the night prior but not the morning of, but they aren’t budging.

        It has taken so long to finally get his BP stable and Cullen is worried this will throw his system off again. I’m going to battle a little more for him by contacting his nephrologist and telling him what’s going on and what he thinks about it.

    • #31705
      Carol Volckmann
      Participant

      Oh how anxiety does show itself and can ruin a perfectly good day!  I think one big issue about anxiety is that it comes with negative thinking – we assume the worst – it is the waiting, waiting for the answers, waiting to hear… The way I would like to look it is, whatever the news even if it is not what I want to hear, I now KNOW and now I will deal with that. It is the not knowing that drives our anxiety. How do I deal with that? Sometimes not very well. But, other times I breath through it and keep telling myself whatever it is, I will deal with it. Sometimes I just need a hug from my husband. He does not try and everything will be okay, ’cause sometimes it is not okay, but I know we will both deal with it. Big slow breathing and hugs really do help. I know Manny is right with on this ready to just wrap you up till you can let it go Jen. Hugs, well wishes for the 10th and just know you will deal with whatever comes your way.  Love coming to you from WA!

      • #31711
        Jen Cueva
        Keymaster

        Thank you, @cdvol3gmail-com, for such kind words and your support always. You share some excellent reminders that will help us when anxiety kicks in. I do try to take these things as they come. But in some instances, it seems the anxiety gets the best of me.

        I LOVE that you mention that some things are not OK, and that is OK. If we remind ourselves of this, it helps. I often don’t want to be a Negative Nancy on things and try and stay positive. But learning that some things are not OK is key.

        Oh yea, those big hugs from our partners or loved ones can make things that much better. Thankful for your husband Dick and my Manny; they certainly comfort us and support us through our roughest days.

        And yes…breathe…whatever comes my way, I certainly am prepared to suit up and tackle it. Sending you back much hugs and love from Texas.

      • #31722
        Colleen Steele
        Keymaster

        Well said as always @cdvol3gmail-com. Cullen and I have always felt the same way. We would rather know the good or the bad as soon as possible instead of our insides turning with the not knowing.

        I admire the teamwork between you and your husband. Advocating for each other isn’t just about spewing advice, it’s about listening, understanding and knowing when it’s hugs and not words that are needed.


        @jenc
        I know that is how you and Manny are too. He will be of great support to you on Friday, I am certain.

        • #31736
          Jen Cueva
          Keymaster

          Thank you, @colleensteele, for your kind words, as always. I appreciate you and the support from all of our members.

          Yes, teamwork is much needed when dealing with PH, as you know all too well.

          When are Cullen’s appointments coming up? I am a bit concerned about holding his BP meds that long. I hope that you can advocate for him along with his nephrologist. Please do keep us posted as I, too, find that concerning. I am guessing that the other doctors feel that he will be in good hands during the test. But that test already makes some feel bad, so I would not want to add to him feeling bad. Plus, it has taken a while to get his BP at a stable level.

          I am sending extra hugs, love, and prayers your way from Texas.

    • #31707
      Terry
      Participant

      So, Saw the PH doc. today and got results from the echo cardio. after being 3 months off the tadalafil and only on macitentan.
      Not that flash as pressure  gone up from 52 to 64.I suggested that I go back on the tadalafil and lose what little hearing I have in left ear .He was not impressed and instead suggested I lose a couple of kilos ,train for Olympics and we have another look in three months. My goodness I have not been under 80kg.for twenty years. The other wait and see is that I see the Rheumatologist monday about going off the methotrexate and folic acid. If I can’t get it down or it gets worse there is another drug but I’m not too enthused about it after he explained the procedure of gradually increasing dosage till I get crook wait and have another crack of upping dosage till I get to 1600 mg.  Torture by pills!
      Still ,so long as I can wake up each day and can do what I’m doing I’ll try anything.

      • #31712
        Jen Cueva
        Keymaster

        Hi @terry, I am sorry to hear about your echo results. How are you feeling overall? Do you feel like your PH has worsened on the tadalafil? Are there other things going on that would cause an elevation in your pressures, like your auto-immune stuff?

        Is the other treatment that your team is discussing is Uptravi(selexipag)? If so, I have been on it for a few years, and it has been beneficial.

        The titration part at the beginning is the worst, but treatments can help manage the side effects for the most part after that. Of course, we are all different.

        Let us know how that Olympic training goes, LOL.

        Losing weight is not an easy feat with PH but can be done slowly.

        Did he say why you need to stop the folic acid when you stop the methotrexate? I am curious; as my neurologist suggested, I start folic acid.

        I hope that you may have some options that work well for you. Did you already restart the tadalafil? Hearing loss is certainly worrisome, and I can understand your concern. Does your PH doc think the benefits outweigh the risks with this treatment for you? Have you tried any others meds in this class, like sildenafil? This may be something to ask your PH doc to see if this would be an option to try. Maybe the hearing loss would not be a side effect with this one for you.

        I am sending extra positive thoughts, prayers, and hugs your way from Texas.

        • #31720
          Terry
          Participant

          G’Day Jen,

          So many questions mate!
          While on the Macitentan and tadalafil all seemed good except I lost hearing in one ear .Since being off the tadalafil I find myself puffing and it seems  a bit  harder to breath . Yes I believe he is talking about Uptravi. I have not tried any other drugs as the Macitentan and tadalafil seemed to be working fine .
          Methotrexate , among other things weakens the immune system and also causes the body to rid itself of folate as waste so I have been on folic acid  5mg 6 days pw for the four years I have been on methotrexate.Between you and me as I have not had a relapse of GCA for two years I will give the Rheumatologist on monday the opportunity to recommend I cease the methotrexate BUT if he doesn’t I will let him know that thats it and how about we moniter my crp and red blood cell  levels with weekly/ monthly blood tests. Could be coincidence but my breathing issues started around the time I started on the methotrexate but everyone put it down to the GCA  and mega dosage of Prednisone , artery narrowing in LAD etc. etc. I would like to see what happens . As I have said before I was feeling pretty  healthy till the doc. started prescribing pills and telling me I was crook. (wink)

        • #31723
          Colleen Steele
          Keymaster

          @terry that’s a lot to be considered at once. I’m sorry you are struggling and that the options aren’t ideal. I haven’t been on methotrexate but I have been on other RA medications. They do come with their own issues and that is why I’m not taking any at the moment. If anything, maybe your doctor will let you temporarily of off it so you can monitor your symptoms and see if they improve. It’s so hard to figure out what is doing what when you are on a handful of medications.

          Having to choose between hearing and breathing is not fair. It’s horrible that you have to decide between the two.

        • #31738
          Jen Cueva
          Keymaster

          G’day, @terry,

          Again, I hate that you need to decide on these two options. As you mention, maybe checking your blood levels every few weeks or monthly may be an idea. I do have bloodwork every 2-3 weeks for the most part. It is certainly easier and a better option than losing your hearing to breathe.

          Hopefully, when you see your rheumatologist on Monday, you will have a better plan. I would hate for you to resume the tadalafil, and that is not helping your breathing, but you continue to experience the healing loss.

          Please do keep us posted as we want to support you, and we care. I love your humor through it all. It helps, I know.

          Yes, the doctors and their addition of meds seem neverending at times. But remember, it’s your body, so advocate w=frow hat you believe and any suggestions they may not have thought of.

          Sending you hugs and positive vibes from Texas, my PHriend.

    • #31718
      Cathy Brown
      Participant

      @JenCueva, is the brain MRI related to PH? Hope it goes well for you! I have an echocardiogram and 6-minute walk test later this month to see how I’m doing since starting Uptravi in May. I sure hope it’s helping.

      • #31724
        Colleen Steele
        Keymaster

        @catbrown best of luck on the echo and 6-minute walk! Are you feeling any difference since being on Uptravi?

      • #31739
        Jen Cueva
        Keymaster

        Hi @catbrown, I hope that your 6MW and Echo go well this month after starting Uptravi. Are you now on 1600mcg twice per day? How long has it been, again?

        Are you noticing any improvements since you titrated to your current dosage?

        Excellent question, my brain MRI is not PH but related to my post-COVID symptoms. So, this was ordered by the post-COVID neurology clinic.

        Please keep us posted on your tests and let us know how we can best support you. Cheering ya on from Texas.

        • #31745
          Cathy Brown
          Participant

          I’m not up to 1600 unfortunately. I started May 22 and at this point I’m at 1000 in the morning and 1200 at night. I’m going to try upping my morning dose again this weekend. It’s getting harder the higher the dose goes. No improvements that I can tell.

          My doctor says my oxygen needs may not improve. She thinks there’s something called V-Q mismatch going on, which is a concept I have trouble grasping. I have unrelated lung scarring from past infections and apparently my body had stopped supplying blood to those areas because they weren’t handling oxygen anymore. Now that the medicines are forcing open blood vessels, apparently those damaged area are once again getting blood but the scar tissue can’t oxygenate it. So that’s part of the reason for my oxygen need. It’s all sort of confusing for me and I’m not sure I’m explaining it correctly.

        • #31762
          Jen Cueva
          Keymaster

          Hi @catbrown, I hope you can titrate slowly enough that your body adapts to the Uptravi dosage. Not everyone reaches the max dose of 1600mcg twice per day. It all depends on your body and specific needs and adaptation.

          I do hope that it helps you as far as symptoms. I have heard of the VQ mismatch, and it is often one of the top reasons people tend to have low oxygen. This, what you describe, is called hypoxemia. This type is different than hypoxia.

          Let me see if I can find something that helps explain this a bit better. But you did a pretty good job with your description.

          Hypoxia Vs. Hypoxemia

          After COVID, I had some scarring in my lungs, and I already had a little from frequent bouts of pneumonia and bronchitis. I am grateful that it is not as badass it could be.

          As @cdvol3gmail-com reminds you, often, it takes some time for us to notice improvements with these PH treatments. I am sending you extra big hugs,m thoughts, and prayers your way for positive results on your tests and an improvement in symptoms soon. What day are these scheduled, again?

    • #31750
      Carol Volckmann
      Participant

      Hi Cathy, I just read your post and about V-Q Mismatch. What you described was just as one of the articles talked about. Wow, this is a new one I never heard about. It certainly seems like your doctor is on top of this for you. I did read about a number of treatments that are helpful.

      Wishing you good results with your echo and 6-MW go well you you begin to feel better. These medications and treatments do take awhile for your body to adjust. Please be patient with yourself.

      Sending you prayers, positive thoughts and energy!

    • #31763
      Jen Cueva
      Keymaster

      Thinking of you today, @colleensteele, and sending positive thoughts and prayers for Cullen as he undergoes his DEXA scan.

      How are you feeling today? I know that it will be a busy day driving to and from for his procedure. Don’t forget your SBUX treats afterward,

      • #31778
        Colleen Steele
        Keymaster

        Thank you @jenc. The DEXA scan is one of the easiest tests Cullen has done once a year. Nothing to it really but it is an important one to have done, especially post-transplant. Cullen has osteoporosis and arthritic problems caused by his transplant medication and we need to keep an eye on the decline.

        • #31790
          Jen Cueva
          Keymaster

          Either way, the Dexa is an important test, and I wanted to send y’all positive thoughts and prayers, @colleensteele. Was that also in Seattle, which is a drive for y’all?

          Did you stop for your SBUX?

          My MRI did not happen this morning. Yesterday afternoon, they called, and there was some issue with the insurance. I was on the phone until a little after 4 as the outpatient clinic told me it would happen if iI could get the insurance straightened out by 4. Well, no such luck. It seems the ordering physician’s insurance and scheduling department dropped the ball.

          I must say they fried my brain trying to deal with that. But today, I have my Cigna case manager following up. Yesterday was too much for me. Do y’all get to that point? Thinking of another column topic as this is extremely draining.

          On a positive note, I slept in a little later this morning, and Manny took to get my iced latte through the drive-thru.

    • #31808
      Terry
      Participant

      Well I saw the rheumatologist today and I am now off the methotrexate and folic acid ,blood tests were perfect, with caution that if I have GCA symptoms get myself into hospital asap. Whoopee. He asked if I had thought about what may have caused my pah .I decided not to upset the applecart by  so said not really .After carefully looking at the timeline am absolutely convinced it was the methotrexate . Oh well , can’t change whats happened .

    • #31814
      Jen Cueva
      Keymaster

      G’day, @terry, it sounds like a great rheumatologist appointment overall. Let’s hope that your blood tests stay perfect or near perfect.

      I am certain that methotrexate comes with some not-so-nice side effects. Interesting to hear that your doctor asked if you thought that it was a cause of your PH.

      Take care, my friend—cheers to a new week.

      • #31821
        Terry
        Participant

        Jen Maaate your nearly there ! Its GidAY.
        No worries mate she’ll be right once you get the hang of it.

        • #31822
          Jen Cueva
          Keymaster

          G’Day @terry, is that better? 😀

          You are so funny; I love the humor that you and many others share with us. It certainly lightens the mood with all of these health conditions.

          I was laughing at your acronyms for so many things. It is funny using them often; we can easily forget how to spell. I don’t think it’s your age, Mate, unless I am older at heart and mind, LOL.

          Yes, I agree with @cdvol3gmail-com, do something nice for you and your wife. I love that. We must remember to have some fun and enjoy our loved ones, too. We need those little nice things thrown in amongst such a busy life managing multiple illnesses, right?

    • #31816
      Carol Volckmann
      Participant

      Terry, this may be a silly question, but did your Rhumotologist test you for Sclaraderma another autoimmune disease that can cause PAH. I hope youare feeling better that you are off methotrexate. Do take care.

      • #31819
        Terry
        Participant

        G’Day Carol,

        Mate not a silly question at all. I was diagnosed with Raynauds 30 odd years ago and it could well be the underlying cause of my GCA and PAH . I suppose I’m looking for the trigger.
        D’ont you just love the new language with technology. GCA,PAH ,LOL,RUOK. No wonder I can’t bloody spell anymore and had to look up words three times above. Or is it my old age . Na no worries mate.

    • #31820
      Carol Volckmann
      Participant

      G’Day back at ya Terry. My Raynauds was caused by Sclaraderma which also caused my PAH. I might not know how to spell but these achcromins drive me crazy 😫 thank goodness for spell check!

      Have a good rest of the week and do something nice for you and your wife 😊.

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