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    • #33736
      Colleen Steele
      Keymaster

      @kygon asked what everyone’s pressures were at when they were diagnosed. It is a good question that has come up a few times in the forums so I thought it would help if I made it a topic.

      Could you also share what your pressures are at now and if they are better, what treatment do you credit for lowering them?

    • #33747
      ky
      Participant

      Thank you Colleen! Just a curious cat, looking for any way I can keep my wonderful husband around as long as possible. He was diagnosed with pressures in the 60s after we repaired a hole in his heart to prevent another stroke, surprise surprise when we had a follow up to make sure the repair was set correctly there was a problem and his heart doctor returned with our daughters PAH team. He is currently on Ambrisentan, Sildenafil, and nightly oxygen and yesterday they added Uptravi and day time pulse oxygen and we ordered our inogen.  We have had luck with just Ambrisentan and Sildenafil bringing his pressures back down but they are creeping up again and the right side of his heart is concerningly enlarged. Has anyone had good success with Uptravi?

      • #33748
        Colleen Steele
        Keymaster

        @kygon curious cats make excellent advocates!

        I’ve attached two links below. One is to a previous discussion about Uptravi. You may ask more questions there and/or comment and here is fine as well. I just thought what was previously shared might be helpful. The 2nd link is to an article about Uptravi.

        There are more articles and discussions available. Type in Uptravi in the search found at the top right and it will direct you to them.

        Forum members – do you have anything to add to help support Ky and he her husband regarding this treatment?

        Side Effects With Uptravi

        Uptravi IV Offers Important Options For Patients

      • #33800
        Jen Cueva
        Keymaster

        Hi @kygon, I’m hoping that the addition of Uptravi will help your husband’s symptoms and pressures. Since it was released, I’ve been on Uptravi, and I believe it has been a game-changer for me and my PH symptoms. Before we added it, my next option was IV Remodulin, so I’m incredibly grateful that it seems to be the best combination with my other PH medications.

        My last pressures were in the high 40s after my COVID battle. Prior it was about 38-42 on an RHC. I plan to have an Echo in several months, so I will keep you posted.

        With Uptravi, it is titrated, meaning it is gradually increased. If your husband experiences side effects that are too much, contact the doctor or nurse. When that happens, often, our bodies need a bit more time to adjust. The side effects that I experienced must be headaches, body aches, muscle pains, mainly in my legs. My PH team had medications available for these side effects before I started to keep them on hand. Taking this with or after food seems to help me.

    • #33756
      ky
      Participant

      Colleen Thank you SO much! I just read and RE READ the forum on side effects. Very helpful information and I will pass along all of it as my husband starts experiencing it however the doctor decided to let him wait to start it until after we return from Cancun next month. We decided to start doing as much as we can while we still can.

      • #33801
        Jen Cueva
        Keymaster

        Aww, @kygon, that Cancun trip sounds just what you all need. I’m happy to learn that he is waiting to start until you all return; maybe a few days would be ideal after he rests. When are y’all leaving?

      • #33845
        Colleen Steele
        Keymaster

        @kygon happy to help! Oh my goodness Cancun sounds amazing! Safe travels and enjoy!

    • #33760
      Jill Upshaw
      Participant

      Mine was 98 over 39 by the echo. When I had my cath, it was a little higher. Sildenafil did nothing for the first few months. Once I got on Adempas and endured the first 5 months of misery getting to the max dose, I have been in the 50-60’s over 30’s. Still high, but much safer and improved. I am due another echo in a couple of months.

    • #33764
      Germaine Norwood
      Participant

      When I had my Cath 14 months ago I was told pulmonary pressures were  83/30. I collapsed a short while later and ended up at UCSF for 8 days. They put me on Opsumit and Tadalafil and diuretics.  5 months ago I went from a Classification 4 to a 3. Last week I was re-classified as between a 1-2. While I have not had another Cath for a real confirmation of the exact pressures, the Echo did  estimate they are close to normal and the right ventricle is also only slightly enlarged. I attribute this almost exclusively to these 2 drugs and fortunately the  side effects are not debilitating . Frankly, it is not always possible to determine who will respond to which drugs and who won’t, in addition to the fact that many of us have no idea how or why we contracted the disease(IPAH). I am turning 74 soon and didn’t expect to be here at all. My prayers go out to all my brothers and sisters with this disease(s) and thanks for this forum to give us an avenue for support and education.

      • #33849
        Colleen Steele
        Keymaster

        @mgnorwood I would like to highlight something very important that you pointed out…

        “it is not always possible to determine who will respond to which drugs”

        That is a good reminder for everyone here. Just because one patient doesn’t respond well to a treatment or has problematic side-effects when taking it, doesn’t meant that will be the case for other patients. Same for those doing well on a treatment – doesn’t mean everyone will.

        The reason it’s good to follow how other patients are doing on treatments is because it provides you with concerns to watch out for and/or progress to hope for.

    • #33765
      ky
      Participant

      Thank you all for the information, I didn’t even know they did classifications and our doctors never mentioned a second number, I know his current pressures on the meds is back up to 68 but I don’t know what its over..   It’s hard to understand this disease and all the complications and medications and side effects! Praying for everyone here and around the world affected with this and all other rare diseases. Sometimes I feel like the doctors and even the transplant teams don’t truly understand what they are working on because there is so few people with it and everyone is so different!  I thank you all for your support!

    • #33771
      Aunt Lizzie
      Participant

      Well Guys, I thought my pressure was bad, as the Cardiologist said I had “serious PH and Heart Failure” – all in the one breath. I subsequently discovered that about 28 is normal, so that was my baseline for further study. I had started on Nitro-Dur patches until I got in to see a speciaist. Then it was Bosentan for 2 months,which helped a lot, but affected my liver, so I was switched to Ambrisentan 5mg, then a few years later 10mg, which I am still on. A Right Heart Cath a couple of years ago showed my pressure to be 42. I use oxygen only at night due to desaturation when in REM sleep. As an aside, I had 2 stents and a pacemaker emplanted in 2013. I had Sick Sinus Syndrome where my heart would miss a lot of beats. From how I was before diagnosis in 2012, when I believed I was dying, to now – I am fit as an 80 year old fiddle. Be your own advocate and research to understand what’s happening to you – doctors are notoriously poor communicators – unless you’re lucky enough to get one you can talk to. Good luck.

      • #33850
        Colleen Steele
        Keymaster

        @auntlizzie provided an excellent reminder too.

        “Be your own advocate and research to understand what’s happening to you”

        No relationship should be one-sided – the patient/doctor relationship should be no different. Patients and doctors must work together. BOTH need to be good communicators.

    • #33784
      Debbie Moore
      Participant

      I was never told my pressures but I just had a RHC done and this is what it said:

      Pressures
      RA 15/12 (11)
      R/V 48/7 (13)
      PA 48/25 (35)
      PCW 20/20 (18)

      Anyone knows what this means?

      • #33819
        Tyler Chapman
        Participant

        Hi Debbie!  Sorry for the long post, but this is a fairly complicated disscuation.  Please keep in mind that I am not a Physician nor a PAH specalist.  I am new to this forum, but I have been a critical care healthcare provider for a long time and I am currently a medical student as well as the caregiver for my husband who was diagnosed in 2017.  I’m going to try and explain what some of these measurements mean, but if you have any questions please let me know.

        First, let’s talk about the order of the numbers themself.  The first number is systolic pressure. This is the pressure in that part of the heart when the muscle is contracting (pushing blood out of that part of the heart).  The second number is the diastolic pressure, which is the pressure in that part of the heart when the muscle is relaxed (filling with blood).  The number in the parenthesis is what is the mean pressure which is the weighted average of the systolic and diastolic pressures, and is arguability the more important number of all of them as it provides a more concise idea of the pressure throughout time.

        part 1/3

        • #33820
          Tyler Chapman
          Participant

          RA is short for the right atrium which is the first chamber of the heart that blood enters.  This blood comes from the veins in the body and it is deoxygenated, meaning that it doesn’t carry oxygen.  The normal pressure for a healthy person in this part of the heart is 6 mmHg.  It is unusual for this part of the heart to have both systolic and diastolic pressure.  This number is somewhat confusing as it is also the pressure of the blood in the veins.  In your case, this is number is a little higher than normal, and if you are seeing increased swelling in your legs this is probably why.

          RV is the right ventricle.  This is the part of the heart that pushes blood through the lungs.  Other than the pulmonary artery pressure, the RV is one of the most important pressures in PAH.  As it becomes more difficult for the heart to push through the lungs, this pressure will increase.  A healthy person will have systolic RV  pressures of 15-30 mmHg, and diastolic pressures of 2-8 mmHg.  Again, as is normal in PAH, your RV pressures are elevated.  Most of the symptoms from PAH come from this part of the heart not working as well as it should.

          PA is the pulmonary artery pressure.  This is the defining measurement of PAH and it is the pressure of the main artery supplying blood to the lungs.  This artery is a little tricky as it acts differently than all the other arteries in the body.  When pressure increases in this vessel it gets thicker and more narrow which makes it more difficult for oxygen to move into and for CO2 to move out of the blood.  The normal range for systolic pressure in the PA is 15-30 mmHg (same as RV) and the diastolic pressure ranges from 8-15 mmHg, with a mean of less than 20 mmHg.  To be considered PAH the mean PA pressure typically is 25 mmHg.  As is to be expected your PA pressures are elevated as well.

          PCW or PCWP is pulmonary capillary wedge pressure.  This is the pressure in the left atrium (or third heart chamber).  Getting this pressure is somewhat complicated to understand.  When they are obtaining a PA pressure they inflate a balloon at the end of the sensor that isolates the left side of the heart from the right side.  This allows us to get a reading of the pressures in the left atrium (LA).  This chamber of the heart works the same way as the RA does, and its pressures are equal to the pressures in the pulmonary veins which bring oxygenated blood back to the heart from the lungs.  The normal pressure for the PCWP is 8-12 mmHm and is usually reported as only one number.  It appears that your PCWP is increased which suggests that the left side of your heart is causing a backup of blood into your pulmonary artery.

          part 2/3

        • #33833
          Jen Cueva
          Keymaster

          Excellent share, @tchapman, and I love how you broke the posts into 3 parts. You are learning as you go, too, I’m sure. But your experience as a caregiver and med student makes things quite helpful.

          Because I worked in nursing before my PH diagnosis, I wonder if you, too, at times, want to be the HCP, not the caregiver, when dealing with PH. Do you struggle with this at times? Do you think knowing more about medical jargon makes things worse at times? I’m curious.

        • #33846
          Colleen Steele
          Keymaster

          @tchapman it’s nice to have a medical professional join the forums! Thank you so much for providing @debbie and all our members with this detailed information. We appreciate your taking the time to do that!

        • #34098
          Tyler Chapman
          Participant

          Colleen, it is my pleasure.  I am currently very busy with school, but when I get time I am happy to help however I can.

        • #34314
          Colleen Steele
          Keymaster

          Hi @tchapman! How are you and @dpchapman doing? I finally emailed questions off to you for a column. No rush or deadline, just wanted to give you a heads up.

    • #33794
      ky
      Participant

      Debbie, I really wish I did .. I am so lost right now I am at the mercy of the internet. Our doctor is not great with communication and with Covid she takes advantage of the fact that I am Not Allowed at any of my husbands appointments … and honestly I feel like they let things slide with covid and had we been allowed at her appointments maybe we would have pressed them so much harder for answers and information, perhaps … possibly .. we could have saved our daughters life.  Sorry hard day, I digress.. I will look into A a Pa R/v PCW and see what I can find on google but I am quite sure you have done that. (hugs)

      • #33799
        Dennis Halloran
        Participant

        My numbers after last Right Heart Cath were
        PA. 70/17 Mean 35. Severe baseline Hypertension
        That was in August of last year and they did a Nitric Oxide challenge study and the numbers were:
        PA 52/20. Mean 33

        Sooo…they started me on Adempas and I have been increasing titration to 1.5 MG 3x a day and I will be scheduled for a pressure test in the next month to find out if it is working. I assume it is another right heart cath, but done at UCLA, rather than Hoag Hospital in my hometown.

    • #33805
      Jen Cueva
      Keymaster

      Hey y’all, I wanted to share this with you for those needing a little more basic information about the right heart cath. This is from UCSF, and they also have a well-known PH Center.

      RHC- Swan Ganz

      This document in Adobe offers a calculation guide that may help those who want to calculate the numbers given within the RHC report. I converted this to a Google Document for better viewing. Hopefully, this isn’t too complicated.

      https://docs.google.com/document/d/1lsj4Wbeq98TstCa2d8OdddqiF3nXSRqe-DqVszSUof4/edit?usp=sharing


      @debbie
      , @kygon, and others

    • #33806
      Kathleen Grady
      Participant

      my pressures when diagnosed were 96 and today they are 108 LOL.
      I am on Remodulin, along with opsumit and adcirca. My pressures have not gone down, but I am doing much better and my heart shows improvement. I was in heart failure when I started remodulin and now it shows damage, but has regenerated its self….

      • #33811
        Jen Cueva
        Keymaster

        Hi @kgrady69, like you, I continue to have RHF but have seen improvements in my symptoms and heart function. I’m so happy to hear that you’re doing well with Remodulin. Thanks for sharing- hugs.

    • #33807
      Charlotte McCabe
      Participant

      I was diagnosed in April 2005 living at 7000 ft. above sea level with a pulmonary pressure of 98.
      My echocardiogram last fall my pressure was 36 and I take 10 mg. of Opsumit once daily.

      • #33812
        Jen Cueva
        Keymaster

        Wow, @doccharli, 7,000 above sea level is high and would undoubtedly cause some increased symptoms for me. Did you relocate, or do you continue to live in the same elevation?

        That’s an impressive improvement in your pressures with Opsumit. @codydaman, you may find this offers you a bit of hope with Opsumit. Thanks for sharing, Charlotte.

        • #33821
          Charlotte McCabe
          Participant

          Yes Jen, we relocated. We left the mountain the day after I was diagnosed and went down to 200 ft. Spent six month getting diagnosed and doing pulmonary rehab, then moved back to Western WA where we have been since late fall 2005. I’m sure getting back to almost sea level has helped my pressure quite a bit too.

        • #33834
          Jen Cueva
          Keymaster

          Hi @doccharli, wow, you’ve been busy moving around since your diagnosis. How is the elevation where you’re at in Western WA? I know it’s much lower than your mountainous areas when diagnosed. I do know many who have positive results when relocating to lower elevations. I’m grateful that you’re one of those who have noticed improvements. Thanks for sharing.

        • #33852
          Charlotte McCabe
          Participant

          Jen, we are now in Covington, just SE of Seattle at around 50-100 ft above sea level.

        • #33858
          Jen Cueva
          Keymaster

          Hi @doccharli, it sounds like you’ve found a perfect location for your PH and also near some excellent PH specialists, from what I’ve heard from others.

    • #33808
      Debra Gonzales
      Participant
      1. My pressure from RHC in August of 2021 was 72/38. I do not know what the mean was.  Pressure from RHC on February of this year was 80 mean 52. I had Started on Tadalafil 20 mg in January and upped to 40mg and started on Ambrisentan 5mg. I am in Right sided heart failure
    • #33813
      Jen Cueva
      Keymaster

      Hi @debcgonz, were you diagnosed with right heart failure when diagnosed with PH? How are you doing with the increase and addition of Ambrisentan? Have you noticed any improvements in your PH symptoms? Thanks for sharing your experience with PH to better help others.

    • #33826
      Dawn
      Participant

      When first diagnosed with ph my pressure was ‘only’ in the 27-28 range (with >25 meaning it was ph), based on a right heart cath. I’ve only ever been advised of my number as a single digit so am not sure of any other numbers. The last right side cath I had, in 2021, my pressure had dropped 6 points. This technically puts me in the normal range for pressure, took me a day or two to figure out that even with a ‘normal’ range number it’s great for the progression of ph but doesn’t affect the damage already done.  I still need oxygen, still have ph, still get very winded, but it hopefully means I have some time before things progress to higher numbers.

    • #33835
      Jen Cueva
      Keymaster

      Hi @dawnt, how have you been? I’m happy that you shared that your last RHC was 6 points lower than previously. But as you mention, you continue to have PH, need oxygen, experience symptoms, and have a body that PH has wreaked havoc on. Unfortunately, some think when we improve at all, things go back to “normal,” meaning before PH.

      When I use the term “stable” for my PH, many often take this as I no longer have PH, need oxygen, or experience symptoms. Thanks for making this critical point.

      Although, I hope and pray that we all can have minor progression or more time between progression with PH.

      • #33840
        Colleen Steele
        Keymaster

        @jenc that is a good point! I think sometimes people hear “stable” but think “remission”. Hey, that would make a good column topic for you.

        • #33859
          Jen Cueva
          Keymaster

          Hi @colleensteele, this is one of the columns that I’ve started but hoped to revisit. The time to revisit this topic for me maybe soon. I’m working on another for the next one, but you’ll see it before long if thoughts come back to this one after that. Great minds, huh? 😀

    • #34087
      Debbie Moore
      Participant

      @tchapman thank you, thank you!  This was so informative and will be a great way for me to track my numbers.  I printed out your post so I won’t forget anything.  I really appreciate the time you spent educating me.  Thanks again.

      • #34099
        Tyler Chapman
        Participant

        You are very welcome.  I hope you get to feeling better soon.

    • #34096
      Jen Cueva
      Keymaster

      Yes, IKR, @debbie. I think many others will also benefit from the time that @tchapman took to break this down for everyone to understand better. Tyler, how are y’all doing this week, BTW?

      • #34100
        Tyler Chapman
        Participant

        Jen, I am happy to help however I can.  Unfortunately, I will be very busy with school for the next month or so, but when I get a chance I’ll hop on and see if there is anything I can help someone with.

        • #34107
          Colleen Steele
          Keymaster

          @tchapman I would still like to interview you for a column. What I will do is compile my questions, send them off to you and whenever you get around to answering, that is when I will write the column. No rush and no pressure. Sound good?

        • #34113
          Jen Cueva
          Keymaster

          Hi @tchapman, I can only imagine how busy life is for you with school and being a caregiver. Please be sure to take some quiet time out for yourself and refresh. Caregiver burnout is often common and perhaps more of a risk for you with such a busy caseload with school.

          Please don’t feel obligated to post, but we like to check in and know others appreciate your helpful insights. Take care and good luck with school.

    • #34130
      ky
      Participant

      I just want to say a big thank you to everyone for all the information and education! Hopefully I will get some clarification on what exact pressure our Dr is referencing at some point but Thank you @tchapman for breaking it down. Very good information!

      And @jenc and @colleensteele yes Cancun was absolutely amazing and wonderful we were gone for a week and now we are back in the swing of work and home and just started our Uptravi adventures on Friday, Bryan says the headache and brain fog feel just like right after his stroke and the muscle aches are just like the flu, the day after he started he made it from the bed to the couch but each day gets a little bit better.  Hopefully we will get a few full good days before our next titration!

      • #34137
        Jen Cueva
        Keymaster

        Hi @kygon, I’m grateful that you enjoy the forums and find the information beneficial.

        Your Cancun trip sounds beautiful. I usually never travel for more than 3-4 days, but I did to help my parents last month. They ensured I rested in between tasks, so I wasn’t as exhausted as I thought when I returned. The first day or two was rough, but then I bounced back.

        How did Bryan enjoy the trip? Were y’all able to do activities that you had planned, or did he need more downtime than expected?

        Uptravi titration can be challenging. If he has more side effects after titrating than he can endure, let his PH doctor know, and they will often allow more time for his body to adjust before titrating. I needed that a few times before I reached my target dosage. For the muscle aches, mainly my legs, I do warm soaks in the bath, and my PH team ordered medication to help with that when it became too uncomfortable.

        Please keep us posted on how his titration is going. I can imagine recouping from that Cancan vacation and starting it may compound the effects at the beginning. Also, I eat a snack with mine when I remember.

    • #34140
      ky
      Participant

      @jenc Yes thankfully we were able to do everything .. he was determined to even go ziplining… I was nervous about that but it was kind of our last hoo rah before starting the new meds and now I am SO glad we did it all, and he did really well so close to sea level! (we would talk about relocating but it’s really not feasible) I will have him talk to his Dr if it gets worse with each titration and he ends up needing anything extra, the nurse just recommended Tylenol, but we have a long long ways to go! We like you are trying to avoid the Remodulin pump.  Our daughter had such a hard time with the pump and site pain. He has definitely figured out the food with the pill game already but I will recommend soaking in the tub its his neck legs and back but he also complained that its odd for his legs to be so achy … not something normal for sure.

      • #34158
        Jen Cueva
        Keymaster

        Awesome, @kygon; that inspires me that he DID make it to do ziplining! I want to do this, too, one day. My biggest concern on most ziplines is how I get to the top to go down. I would love that! My hubby says he will find one that works for us eventually to try. Besides racing go-carts, hiking, and rock climbing a few times, I was not so adventurous before PH. But I think it makes me want to do those things even more. Hehe

        If he takes the Tylenol around the clock and tries stretching and soaks with no relief, certainly contact the nurse. Unfortunately, that achiness is part of this titration. Most people taper off as their body adjusts to a dosage. But then it’s time to titrate again, and it often starts again. Maybe he will be one where that subsides after the first few titrations.

        Please keep us posted and let us know how we can support y’all! Thanks for sharing!

        • #34181
          ky
          Participant

          Jen I don’t know where you are located but in Provo Utah there is a zipline that they drive you to the top and you just climb a few stairs and then zip zip zip all the way down. There is one at the end that you walk a ways to but it isn’t bad because it is all downhill.  However the elevation is somewhat high at the top so that might not work either.  Unfortunately the ones in Mexico you climb up to zip down and I thought Bryan was going to pass out, and he couldn’t wear his oxygen because obviously they aren’t going to let someone on oxygen on their zipline … we basically had to lie all day or he wouldn’t have even been able to do the jeep drive through the cave.. literally everything had Do Not Ride if you have Heart or Lung issues… we were like nah he’s fit as a fiddle! Keep a look out around lakes and state parks because some of our lakes have simple ziplines that even small kids can go on, so not far up. We rarely go climbing anymore .. a few baby climbs but my hubby was always the lead climber and after his stroke it is hard for him to safely lead, with no feeling on the left side,… but we do a few top rope climbs and try to repel once in a while however getting to those locations is getting harder and harder. Our canyoneering trip last year he admitted that it was likely his last and we cried! But we go camping and love going for drives and we have a few places we just drive and walk 2 min to a nice cliff and dangle our feet over the ledge… we call this happy feet.

          Perhaps rather than a zipline you can try parasailing behind a boat? That way your at low elevation, there’s no stairs, but you still get to fly over beautiful water? I haven’t tried it yet but my sister did and she said it was super amazing, if you do try it let us know what it’s like!

          Thank you so much for all your advice and support! Bryan is tough but I admit this medicine has him a little overwhelmed, I have never really seen him discouraged about his medications before, but I think he is just “wow 4-6 months of this”… I am just trying to be as supportive and understanding as possible, Is there anything your husband did that was extra supportive and encouraging to help you through the roughest days?

        • #34191
          Jen Cueva
          Keymaster

          Hi @, I’m in San Diego, Ca. I appreciate your tips on ziplining. Manny told me last night, ironically, that his buddy at work told him about a ziplining place not far. He says he will check that one out soon.

          I have seen parasailing, and our daughter has done that in Lake Havasu with her late Grandpa. It was so cool to watch. We watched several do this as we drove home from the beach on Sunday. In the bay, they do that and paddleboard, sailing, etc. Have y’all tried paddleboarding, too? Manny wants to do that, but that looks like a lot of core body strength. Plus, I’m clumsy and would probably end up sitting on it or in the water the entire time.

          Manny always did and did like you, hated to watch me in pain and uncomfortable, but he would do the tiniest things that meant the most. He would ask what he could rub if it were my legs, etc. He would also remind me that we are in this together and that we will get through this.

          Little things like bringing home my favorite drink or snack, and doing chores when I can’t, like grabbing take out were helpful. But most importantly, being there and learning all you can to best support Bryan is huge and means more than you’ll ever realize! You’re doing a fantastic job as a supportive partner.

        • #34194
          ky
          Participant

          @Jenc Yay!!! I hope Manny found the right place for you to try ziplining! San Diego, that is a very exciting place to live, I have only vacationed there. Parasailing is definitely on our to do list however I have gone paragliding… Very Very top ten amazing! And yes we have been paddle boarding, we own an inflatable one and a few kayaks we just trade off who is doing what when we go with the kids .. it isn’t as core intense as you might think, especially if your on calmer water, you just start on your knees and get a feel for it before you stand up, once you are up you get really good pretty fast at going back on your knees when there are big waves. I think you would really enjoy it. Oh and the higher the weight rating the more stable and more than one person can go together on it ..because Kaylyn was so tiny she could wear her POC on the paddle board, but just not stand up because they are so expensive, not worth the risk… ( a few times while wearing the POC she would sit on the front cross legged and her dad would stand behind her and paddle and I would swim behind and if it got choppy I just grabbed the board and helped to stabilized it.) She usually wanted to enjoy standing up and just left her POC on the shore.  Just some ideas for you since you are currently on oxygen 24/7 right?  Hahaha maybe we should crate a chat for bucket lists and creative ways to make it happen! Hugs thanks for all you do!

        • #34197
          Colleen Steele
          Keymaster

          @jenc @kygon Cullen came so close to getting to zipline about a year after his transplant. We were on vacation in Utah and he was in line for it at Olympic Park. But the line was really long, it was really hot and we were with his transplant friend who was also battling cancer. The wait got to be too much so we moved on to something else. I kind of have a fear of heights so it’s not on my bucket list. LOL!

        • #34199
          ky
          Participant

          WHAT? I am so sad to hear he didn’t get to do it! But lucky for him he has HIS WHOLE LIFE AHEAD OF HIM to try it. PS I Pray Pray Pray he has a truly long life! I understand Lung/heart transplants come with their own complications and hardships/limitations but they are ever improving on that  .. so sorry I digress..  funny story my youngest did that very same zip line at Olympic Park when he was 4 yrs old (OH Wait.. Does that make me a bad mom? I am not sure! LOL) he was tall enough, wanted to do it, but he yelled all the way down “OMG IM GONNA DIE MOM” …. but he was laughing  at the bottom and he lived so whatever I take that as a win.

          I am so sorry to hear you have a fear of heights. I once did as a child and then I went on my first scary hike as a teen and I was on top of the world and it felt AMAZING…  Fear gone, now I am obsessed with getting to the top because the view can’t be better than the top! I also met my husband on a cliff.. he was repelling, I was hiking and leaned over the edge, I said “That looks fun” he said “wanna try it?”  he tossed me off a cliff the day we met and well I FELL and fell hard hahahaha

        • #34200
          ky
          Participant

          First of all let me just admire what an amazing mom you are! Not only to your own son but other children on the transplant list… WOW.. I bow… beautiful, truly beautiful!

    • #34151
      Rayetta
      Participant

      When I was diagnosed in February of 2018 my pressures were at 120. I use a CPAP and oxygen at night, plus I take Opsumit and tadalafil. This treatment plan has brought my pressures down to 41.

      • #34161
        Jen Cueva
        Keymaster

        Hi @rayetta-meverden-johnson, how are you doing? What’s new? It’s great to see you pop into the forums.

        Your journey shows how important it is to find the most effective treatments for our bodies. In 4 years, with these medications and your CPAP and oxygen, you have had a tremendous improvement in your pressures.

        I’ve had some ask me if oxygen and BIPAP or CPAP help; I always say most notice a difference after using these treatments continuously for a brief period. If I go without my oxygen at night, I feel so crappy the next day, so I know it helps.

        Thanks for your update and sharing with our members. Others will find it encouraging.

    • #34193
      Gemma
      Participant

      Hi, my rhc at diagnosis was mean of 52. During the rhc I inhaled nitric oxide and pressures dropped instantly to 26. I was classed as nitric oxide responder. Put on sildenafil, ambrisentan and diltiazem in 2014. Pressures were around 30-35 until 2018 and then since then are more like 25-30. Believe the reduction is we increased diltiazem to 600mg per day. Had few rhc in recent years – last being 2021 which showed consistent around 26/27. Had echo a few weeks ago which showed mean of 24.

      • #34203
        Jen Cueva
        Keymaster

        Hi @gemsy-elizabeth, it’s nice to see you pop in and share your encouraging update. It’s incredible that you responded to the nitric oxide and have shown such improvement. I also have a close PHriend who was the same, and she is now on her calcium channel blockers (CCB) and a low dose of sildenafil. She was diagnosed about 10 years ago, so those who respond to nitric oxide and can do well with CCBs are impressive and offer hope for others.

        How are you doing otherwise? Is anything new in your life you want to share with us? Thanks for sharing such a significant and positive update. Take care and enjoy your weekend.

    • #34195
      ky
      Participant

      @Gemma, thank you for response, I have never heard of nitric oxide inhaled… I think @Dennis mentions nitric oxide as well… How interesting I am going to go on a google hunt for more information! Hopefully you can keep those pressures low enough to not need to move to a next level medicines!

      Prayers for you all!

      • #34204
        Jen Cueva
        Keymaster

        ; I would have thought Bryan’s PH team would have mentioned that some respond to the vasodilator test with nitric oxide. This is an important option that those who respond do well with. The percentage of these patients is often much lower, so maybe they didn’t mention it. Thanks, @gemsy-elizabeth, for bringing this to our attention as a reminder that some do respond to calcium channel blockers (CCB).

        Here is a little more information about this, @kygon that you may find helpful. This may be a topic that we need to create so others can share their experiences with CCBs.

      • #34239
        Gemma
        Participant

        Thanks Jen and Ky for your replies. Whilst my PH is stable, for the last 18 months I’ve been really struggling with other health issues. A lot of it has manifested it since I went on the drugs for ph in 2014 so I’ve always assumed that it was side effects if the medication but the more that new tings happen to me it would suspect I could have other underlying issues going on. They are exploring the option of connective tissue disorder, in particular elhers danlos and POTS. My heart rate just randomly increases from 60 to 120+ and on an adhoc basis I keep getting dizzy spells with a few fainting episodes.,When I was diagnosed with PH it was the idiopathic kind as nothing gave away why I had it. Now there is a small possibility that it’s linked to connective tissue. I also have venous reflux in my legs/ankles along with really bad dry eye/mouth, gingivitis, reoccurring pericarditis which all points to auto immune. Most weeks I feel exhausted, knackered and just out of energy. I work full time and have a full on job which I put all my energy into which means I have less in the tank for stuff outside of work. I need to start to get my work/life balance back! I am incredibly grateful though that throughout this time my PH has remained stable.

        • #34240
          ky
          Participant

          @Gemma first of all my positive hopes and vibes and prayers for you to find balance and energy. also very happy you have remained PH stable with meds.. sometimes as disease progresses there is nothing but bad side effect medication. Happy to hear your not there. I had a sister with connective tissue disorder and a few other disorders .. she had a rough 42 yrs of life as her intestines connected together… although it isn’t what claimed her life, and she did everything she could on this planet, so no time lost. I don’t know what the other disorders are but I hope you get answers and find some reprieve! This site has done a lot for me and getting my hope back for my husband who has the same disease, PAH, that claimed our daughter in Feb. It is nice to get ideas and others take on things and not feel alone.

    • #34202
      Tiffany Ramirez
      Participant

      My pressures were 85 when diagnosed and now 6 months later they are down to 41 due to being on Opsumit and Tadalafil every day!

      • #34205
        Jen Cueva
        Keymaster

        Hi @tiffany-ramirez, that’s an incredible drop in your pressures in such a short timespan. That’s such exciting news; thanks for sharing. How are you feeling overall?

        Another reminder of how once we find the best treatment plan for our bodies, we will usually see improvements! What a way to start the weekend off by reading about such positive progress in pulmonary pressures.

    • #34206
      Tiffany Ramirez
      Participant

      During the catheter, the doctor said that I reacted really well to the nitric oxide, so they knew I would respond well to the drugs they were trying to put me on. I’m so blessed that my team was able to expedite my approval process through insurance and I was able to get on Opsumit within a couple of weeks.  Knowing how debilitating this disease can be, I’m so excited and feel like I can do most anything now! I still have my limitations, but it is nowhere near what it was when I was in the hospital and was out of breath just sitting on the bed.

      I have read that Opsumit has really done an amazing job by cutting the numbers in half for others as well!

      • #34215
        Jen Cueva
        Keymaster

        It sounds like they caught your PH pretty early, @tiffany-ramirez! Plus, it sounds like you have an excellent care team. I’m grateful that you did well with the vasodilator testing and Opsumit. I was only on it briefly because it wasn’t working well with my other medications.

        Your story will offer hope to all who read it! We certainly always remember the days when we were in a much worse place with PH. I know; I do, too. My heart goes out to all who have yet to find treatments and a PH team that are right for them.

    • #34219
      Tiffany Ramirez
      Participant

      Hi Jen! Yes that is exactly what they said… that we caught it early. I didn’t ask what that really meant and was kind of confused since I was already in heart failure. But either way, I’m grateful to have a medication that works. I’m so new to all of this and still trying to navigate everything. I’m seeing that some patients have to try several different drugs before finding a combination that works, so I’m realizing just how blessed I am to have something that works right away! These forums have truly been helpful to new patients like myself, especially when doctors don’t take the time to break it all down, and partly because we don’t know that right questions to ask.

    • #34227
      Jen Cueva
      Keymaster

      Hi @tiffany-ramirez, it can be confusing and frustrating when doctors don’t take the time to explain things. This is—unfortunately, the time limits placed on them, most often, and high demand or caseload.

      But, I would guess they meant they “caught it early” because it was your first time being seen, and it was noticed then, not several years later. I know, confusing since you said you were already in heart failure. But, I’m grateful that it wasn’t left untreated any longer and that the first treatment worked so well for you. So, true, some go through almost all PH treatments before finding the best combination for them.

      I am grateful that you’ve found the forums helpful and supportive. Thank you for such kind words and for sharing your experience. Our outstanding members, like you, make this possible.

    • #34238
      Tiffany Ramirez
      Participant

      I’m so glad that people like you and others are here for support and to help answer some of the questions. We live with the our disease everyday and I now know that doctors are limited to the information they have and that everyone reacts different or has different outcomes in their progression. I do feel like it was an uphill battle of trying to get information but now, I definitely feel like I have a much better understanding of what to expect!

      • #34249
        Jen Cueva
        Keymaster

        Thanks so much for sharing how helpful the forums are for you. I continue to learn from you all here, even after 17 years of living with PH. That is the battle, trying to find the best treatment for our bodies. Once we do, we can learn to live our new normal.

        I’m grateful for your medical team and that you decided to join us here and share your experiences with PH. We live with it daily, and as I said in one of my columns, we ARE the experts of our bodies.

        I hope you continue to find the forums beneficial and a safe place to share your thoughts or concerns. @colleensteele and I do this daily for this reason, to support others who need it and remind them that they are never alone.

        Your feedback makes my heart full of joy!

    • #34247
      ky
      Participant

      (Sorry I didn’t know where else to ask this question) Has anyone had, or heard of, Uptravi causing Increased BP? My husband’s has been going up steadily everyday until it hit 166/120 and his Dr recommended we go the the ER, (bunch of tests- sent us home) but his PH team has never ever seen this response and the Uptravi call center seemed very confused and told us to call his team. It seems to be a bit of a odd ball reaction.

      His pressure is going back down little by little and is currently 150/100 but we are supposed to titrate up again this weekend and I am nervous that every titration is going to push his heart this hard.

      Just wondering if anyone else has had this weird effect. I tried google and came up empty handed as it seems they only report BP going too low. If it did make your BP drop does it regulate and does it drop again with every titration?

      • #34250
        Jen Cueva
        Keymaster

        Hey @kygon, I’m so sorry to hear that Bryan’s BP is elevated. From my personal experience and what I’ve heard from others, Uptravi has the opposite effect. Honestly, all PH medications have that effect on most people. The keyword here is “most,” Of course, you know our bodies react directly. Is there anything else added or going on that may have caused this elevation in his BP? Did it start as soon as he began to the Uptravi?

        If that’s the case, I hope his PH team will stop it and transition to something that doesn’t affect him. Did anyone add a BP medication to his treatment plan? Maybe a calcium channel blocker that acts as both would help if he is a responder.

        Here’s a topic about Uptravi that you can read through.

        Please keep advocating for him and let us know what they decide. I’m sorry that his BP is so high; he must be feeling horrible. What’s his usual BP range before Uptravi?

        I’m sending big hugs and prayers coming your way.

        • #34256
          ky
          Participant

          @Jenc before he started Uptravi his BP has never got over 130/78 and that was high for him. His team talked with the heart doctor on his team and they decided not to add the BP meds at this point because they are speculating that it is due to the blood volume increase making his heart work harder and they think it may be a temporary response, but he is kind of the yellow canary in the coal mine and no one seems to have seen this reaction before.  As of now they want him to titrate again Monday instead of Friday but my husband wants to try to do it on the weekend because of the headaches and trying to work through it at work. But when he does try to titrate up they are only having him increase the evening dose for two weeks before trying to move up. I am just concerned about heart damage and possibility of heart attack. I know his Dr is saying the only other option is the pump and he really doesn’t want to go that rout.

          While we were talking to his doctors I did ask about the nitric oxcide test and she confirmed they did do that test and he was non responsive, we just didn’t recall (most likely because they only do it on the initial heart cath and that was 3 years ago).  But I appreciate everyone’s information so I could double check to make sure we are crossing all our t’s.  Again Thank You for all the support. This disease is hard to understand because it’s rare, complex and everyone is so different.

        • #34260
          Jen Cueva
          Keymaster

          Hi @kygon, I’m sorry that you are going through this with Bryan’s titration on Uptravi. Hopefully, if he agrees and do the next increase slower, it will allow his body longer to adapt. I’ll pray and cross all I can that this is temporary. If he has any other heart attack symptoms, certainly take him in. But, his PH team is aware and hopefully plans to monitor his next titration and symptoms more. Unfortunately, it’s often difficult to differentiate between PH symptoms and other new heart symptoms.

          Here is a little more about heart attack and symptoms, so you will watch for anything. Although, it sounds like you notice each new reaction. You’re an awesome caregiver and wife!This is when those de-stress and self-care activities could help.

          I’m sorry because I know this is stressful and worrisome watching him going through this complication. Bless you both and know we are here for your support. We appreciate how vulnerable you have been with sharing your PH experiences with us.

          This last statement is on point, “This disease is hard to understand because it’s rare, complex and everyone is so different.”

        • #34277
          Jen Cueva
          Keymaster

          Hi @kygon, I wanted to check in with you and see how you and Bryan are doing today. Any improvements with his BP? I’m thinking of y’all and sending you positive thoughts, hugs, and prayers.

    • #34311
      ky
      Participant

      @Jenc Thank you so much for all of your support and yes his BP has come back to acceptable .. although still high .. and he only did the extra dose in the evening for two days and then added the morning titration .. his BP does spike about an hour after he takes it and then goes down to acceptable and his Drs seem okay with this so we are continuing to push along through the headaches and muscle aches and everything in between!

      Thank you for thinking of us and I hope you had a wonderful mother’s day!

      • #34353
        Jen Cueva
        Keymaster

        Hi @kygon, my apologies to you for not responding sooner. I saw the headline a few days ago and thought I had answered. I’m happy his BP is in an acceptable range, and his PH team is aware and slowed his titration a tad. I hate that the headaches and muscle aches continue; I was hoping he was one who only experienced these side effects the first week or two.

        Unfortunately, it takes our bodies time to adjust to these medications, and some do better with specific treatments than others. His PH team wants him to continue this Uptravi titration thus far as they monitor him.

        Thanks for your Mother’s Day wishes. I did enjoy a nice relaxing day with the fam. I hope you did enjoy your Mother’s Day, too.

        Take care and enjoy a lovely weekend.

      • #34549
        Jen Cueva
        Keymaster

        Hey @kygon, I haven’t seen you post recently, and you and Bryan have been on my mind. How are you doing? How is he doing with the Uptravi titration and the elevated BP? Any improvements from the last update?

        I know you stay busy with work and as a caregiver, so please update us when you are up to it. Tiny updates to let us know you’re doing alright, etc., are enough, so we don’t worry. I am keeping you both in my thoughts and prayers.

    • #34564
      ky
      Participant

      Hey @Jenc, Thank you for thinking of us! I have been around, read some of your articles and a few other articles but haven’t commented; We have been very busy with our son’s graduation and getting our yard and patio done in time for the celebration afterword haha, and it is my planting season  … so Extra busy for me! I read your Wine Down time and I was sipping with you for sure as I usually have a glass every evening. I also related to your article about finding a new team… as Bryan and I discussed trying to get a second opinion after our daughter died, only to find out that the only other team in our area refers their patients to OUR Team when they progress past a certain point and Bryan is past that point sooo we just deal with the emotions at every appointment.. I don’t know if we will ever be able to walk into that building without the sniffles but at least we are blessed enough to have a team to work with!

      Bryan is still working the titration just a little slower and it seems to be going better although his blood pressure is still a constant monitoring situation, but by adding only one pill in the evening for a few days before adding the extra pill in the mornings we are keeping it within “acceptable ranges.”  The pharmacy has been a pain to deal with sometimes and we have to pay attention to how many days are left and as you are aware when your taking a handful a day it can be frustrating .. but we are learning to figure it out and know to call three days before we need more.  I started massaging his legs every morning and evening which seems to be helping a great deal with the aches and I often try to apply pressure point massage to his head and neck but those pesky headaches are just stubborn! The headaches have recently started making him nauseous he takes over the counter stuff from time to time but he doesn’t want to ask his Dr for more medicine because he says he already takes enough pills …(stubborn) I guess that just means he is Determined rt hahaha.

      We actually did a nono and bought a hot tub because when we were out of town the one at the hotel was like a magic wand for his head (but we are keeping the temp set lower so its just a big warm tub with jets) when he is in there he says it is the only time he is headache free. It was so expensive and I was nervous about spending the money, but it has been worth every penny to see his relief.  I don’t know what the next titration will be like but its this Friday … Oh EEK that is tomorrow, the calendar seems to be flying by at light speed … I need more hours in a day it feels like.

      How are you and your hubby doing? Any new adventures? Are you still on full time oxygen?

    • #34605
      Jen Cueva
      Keymaster

      Hi @kygon, let’s try again. I was halfway done responding to you, and I accidentally hit a button, and it went back, and I lost it. It’s early, and I’m drinking my first cup of coffee, hehe.

      My apologies I am late responding, I had a “PH week,” as I call it, last week, and Friday took the afternoon off to rest, thanks to @colleensteele. I actually got a nap in, and it’s been a while.

      It sounds like a busy time, but so happy ]you had that to look forward to and celebrate. Congrats to him on his graduation!

      I can’t imagine how difficult it is to walk in those doors to see the same PH care team after losing your daughter. That has to be traumatic for you and Bryan.

      It sounds like the slower titration is what he needs. And that hot tub, hopefully, offers relief for his legs, too. Has he noticed it helping that, too? I’m glad that y’all have it turned down, so it’s not boiling hot.

      I use a heating blanket and hot baths to soak my legs often. You sound like my hubby, Manny, when it comes to the cost of something. If it offers me relief, he will make a way.

      Is his pharmacy Accedo for Uptravi? They are usually good at calling a week or more prolonged before I need mine and get it here fast. If I miss a call, I try and order about 10-14 days out, plus I say I have a few less than I do to have a cushion of days. I know it’s a bit more difficult when he is titrating.

      My hubby is doing well, thanks. No, I can take my oxygen off while sitting more here in San Diego and not suffocate. I am happy to have it off some. Not many adventures, wait, nope, last weekend, we did take the ferry to Coronado Island and rode our Ebikes for my longest ride yet. But, we had a picnic lunch and stopped twice to take breaks at the beach. It was lovely and a rest for my body. Although, my body and legs are just now starting to get back to usual. I was hoping to do another ride yesterday, but that didn’t happen. I hope to get back on my bike later this week for a shorter ride.

      Enjoy the graduation celebration, unless it was over the weekend. I know prepping and then cleaning up after a party like that is a ton of work. Wine down each evening, and cheers and congrats to your son.

      Thanks for the update, and take care of yourself!

    • #34638
      ky
      Participant

      @Jenc, Yes it is Accredo and I know it is just for titration because we get one other medication from them and that one is fine, I guess titration is always messy with insurance during titration so they have to keep sending it almost weekly… but we are getting the hang of that as well. Ahhh yes party all over (Thank goodness) but 2 of my brothers are coming into town and using our house as basecamp so it starts over again and then our next big project is cleaning out the garage  … MLEH. There is always a project around here it seems.

      Oh how fun I am so glad you got such a wonderful day-sounds like my cup of tea! I bet the Ebike is so helpful, Bryan and I keep eyeballing them but we just spent a tiny fortune on the hot tub .. which he soaks in daily … sometimes twice a day hahaha I told him he is going to start needing to use lotion.. but all mine is foo foo flower smelling so I need to go buy him “man lotion” hahahaha. (eyeball roll) Yes it is super helpful for the leg aches and on titration weekends I massage them when he first gets out of the hot tub and he says that really makes relief last longer.  Does the “Uptravi Aches” ever get better? I keep hoping after he gets to full titration that it wont be as hard.. It’s so dang hard to see the ones we love in pain! ~Keep taking care of yourself and never be sorry for a long pause… I completely understand!

    • #34653
      Jen Cueva
      Keymaster

      Hi there, @kygon; Accredo is so helpful, but the titration phase is more complex. But I’m happy to hear you all are getting it down.

      Wow, your house sounds like a party house. Where are you all located again? LOL Parties and cleaning up before and after guests are exhausting. This evening take a nice bottle of wine and sit by your garden. You deserve some “me” time.

      You’re one superwoman with a ton on your plate. You should probably keep that wine chiller full.

      My E-bike helps me enjoy more adventurous and nature. I love it! Bryan would probably love one, too. But I understand a budget. Maybe he can find one once the hot tub splurge is worn off. One way to find a deal is to look online like Marketplace, etc., for people who bought them during the lockdown, rode 1-2 times, and then kept them in the garage. I’ve seen some around here like that.

      With the aches from Uptravi, mine have never stopped but improved. Some people say it resolves during titration and others after. It’s so challenging to say because our bodies react differently. Yeah, I know Manny almost cries in pain when I am experiencing pain. I’m sorry that you are watching Bryan go through this.

      Are you taking care of yourself? Thanks for your support and the update. Keep us posted, and know we are here to support you.

    • #34663
      ky
      Participant

      Hey @Jenc, hahaha yes sometimes it feels like a party house with just us! We have two of his sons living with us full time and my 12 yr old full time, and we both have Very big families and with my house having so many rooms as some of the kids have moved out it just makes sense for family to hit us up when they are here. I have a brother living in Honduras and one in Singapore and a sister in Vegas and when they are hear they always stay here… I Guess that’s a compliment.. hahaha it just so happened that they are coming at the same time so it will be fun to see everyone. I have nine siblings however one of my sisters passed away from a blood clot at 42.. so I guess 8 now, hard stuff .. long story (I digress) anyways yes we are always busy…

      I think sometimes Bryan tries to push too hard because he says projects distract him from everything ..( I think you might do that?)  its a double edge sword but I get it!

      I try to take care of myself and posted in the what’s on medical calendar for June that I am really trying to take care of myself with all my dumb apts. hahaha. I love the Ebike idea .. but I told Bryan I need a new roof first … the shingles are so brittle they are crumbling … EEEK … (I could panic at just the thought of water leaks and water damages) Sorry Rambling hahaha Anyhow yes Bryan is ALL about that FB Market Place .. I think when he isn’t looking for a deal for us he is looking for something for his parents, I call it his Market Porn (Hahahaha)

      Keep up your amazing job doing what you do and know that I very much appreciate everyone’s support and friendship .. it is hard for outside people to understand what its like to live with this disease, and I think its easy for friends and even family to disregard the serious effects it has on life because they have their own life.

      Well as tigger says TTFN, ta ta for now!

    • #34672
      Jen Cueva
      Keymaster

      Hi @kygon, party house, it is, then. So, I’ll take a room once you are registered from the siblings, LOL. But, it sounds like a family reunion, or mini, with your large families. I’m sorry to hear about losing your sister due to a blood clot at 42 (big hugs).

      Ohh, I def relate to Bryan with keeping himself busy with distractions. But you’re right; it can be a double edge sword. He sounds like Manny with Marketplace. I swear that’s the only reason he has FB, hehe. Too bad, it seems we always need something to spend our money on when we want the fun things. I bet it won’t be long, and Bryan will find the “deal of a century” on an E-bike while scrolling.

      Thanks for your kind words. I’m thrilled that you find the forums so supportive, It helps when others can relate, and you can share things most people don’t and will never understand. You have made some amazing contributions to the forums, and we all appreciate what you do, too. I know Bryan appreciates more than you’ll ever know like I do, Manny. He’s my lifesaver.

      Kudos for taking care of yourself when you can, my PHriend. I hope that you and the fam have an enjoyable weekend.

      • #34675
        ky
        Participant

        @Jenc, thank you for your ever kind words! and you are welcome anytime you want to visit Utah.. unfortunately all the national parks are about 4 hours away, but you can sit in our hot tub and sip some wine!  We live in a cute little town called Pleasant Grove in Utah. Let me know if your ever in this area!

    • #34678
      Jen Cueva
      Keymaster

      You’re so sweet, @kygon. It would be cool if I could keep a roster of our members visiting with all as I tour the world. It sounds like this could be a highly-rated reality TV show. Hehe.

      The hot tub is turned down(already done), and wine and good PHriends, sound like a great time. If I’m ever in the area, I’ll let you know.

    • #34680
      ky
      Participant

      @JenC … Submit TV idea to NBC and have them pay for all your travels! hahahaha

      • #34689
        Jen Cueva
        Keymaster

        Hehe, @kygon, that would be cool. I wonder what we could call this reality show? Does anyone else want to take a guess? This could be fun.

    • #34710
      ky
      Participant

      @jenc … hmmmm “Jens Travels for Phriends” hahaha

      • #34717
        Jen Cueva
        Keymaster

        LOL @kygon, that sounds good. What about “PHinding Phriends with Jen”? This could be fun, but I doubt we have enough drama for the reality TV world, hehe.

    • #34719
      ky
      Participant

      @Jen love the name! and IDK I think you could find drama hahaha ,maybe not the right kind though. Oh I wanted to tell you we started clearing stuff out the garage and Bryan didn’t have to stop and nap, was able to push through a very long day (even though I tried to get him to stop Several times)  I think we are finally seeing some of the benefits of Uptravi! fingers crossed

      • #34731
        Jen Cueva
        Keymaster

        That’s an excellent update on Bryan, @kygon. I’ll be crossing my fingers and my toes that the Uptravi is the best treatment for him. What dosage is he up to now?

        Of course, drama is everywhere if we look around, right? Hehe.

        • #34745
          ky
          Participant

          @Jen he is on 1000 mg twice a day and he starts the 1200 soon. Thanks  for crossing those fingers and toes, we are doing the same. hahaha

        • #34767
          Jen Cueva
          Keymaster

          Hi @kygon, that’s excellent that he’s noticing a difference at 1000 mcg. Crossing all I can that his 1200 mcg dose will go well for him, too. Please let us know how it goes.

          I hope y’all enjoy a nice weekend. Is your family in town now?

        • #34768
          Jen Cueva
          Keymaster

          Hi @kygon, that’s excellent that he’s noticing a difference at 1000 mcg. Crossing all I can that his 1200 mcg dose will go well for him, too. Please let us know how it goes.

          I hope y’all enjoy a nice weekend. Is your family in town now?

    • #34778
      ky
      Participant

      @Jenc, thank you so much for always thinking of us. My brothers arrive today and we are having about 20 people over for BBQ tomorrow so we can all visit with them hahaha, It will be fun but also have a lot to finish up before they get here but both rooms are ready so …. I look forward to it but also to it being over and done!

      • #34787
        Colleen Steele
        Keymaster

        @kygon I bet you had a great time hosting the BBQ! Do your brothers live out of state? How many do you have? Well, I hope the day ended with wonderful memories!

      • #34805
        Jen Cueva
        Keymaster

        Hi @kygon, hopefully, you enjoyed the family party reunion and now resting a little before you begin the clean-up. It was a blast and much-needed laughs for you and your family.

        This week is for your garden and sippin’ a little wine each evening, right?

        How’s Bryan’s Uptravi titration going this week?

        • #34814
          ky
          Participant

          @Jenc, Yes this week is all about garden and sipping the wine! definitely enjoyed the party, we will start on the big bad garage project this weekend … we are both a little taxed from everything in the last few weeks.  Bryan will titrate on Friday up to 1200 mg twice daily, … I know it will be a hard weekend with our project but he can play instructor we have our sons to help me with the heavy lifting but undoubtedly he is going to push too hard..

          How are you and your husband holding up? Anything new? Sending love and light your way!

        • #34819
          Jen Cueva
          Keymaster

          Hi @kygon, I bet you are both exhausted after several busy weeks. But I know you both enjoyed every minute, too!

          Back to wine and gardening, huh? That sounds like a plan to me. Hehe.

          I will keep crossing all that. Bryan’s titration to 1200 mcg tomorrow goes well. It sounds like y’all will be busy again with the garage. I’m grateful that he has the boys to do the lifting, and he can supervise. But if he’s anything like me, he will have to get his hands a little dirty, too.

          This calls for more sitting on the porch sippin’ wine, to me.

          Manny and I have been sick, unfortunately, this week. I’m guessing we caught a bug from attending my friend’s memorial service Monday. We were both sick Monday night. So not too much going on here except rest and fluids. I know nothing exciting to share this week.

    • #34790
      ky
      Participant

      @Colleensteele I have 5 sisters and 4 brothers and the two visiting came from Singapore and Honduras, brother in Singapore is a professor and one in Honduras is a master Engineer (meaning he has a degree in all types engineering.  We have a big family and yes it was fun hosting and catching up. I always enjoy hosting but I always enjoy when it’s over too hahahaha

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