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    • #29251
      Jen Cueva
      Keymaster

      Can y’all believe that it’s March already? Time flies that is for sure.

      Please help me welcome our new forum members this week. Welcome, @twindle17, @jelly4toes, @fotoimagini, @upshtcx, @healthypig, @jenefree, and @felyna. I have to say some of you come up with some creative user names. If you have not yet done so, please share a little about yourself. Here are a few suggestions to help you get started.

      Your name and location?
      Are you a patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We look forward to learning more about your PH journeys. If y’all have any questions about the PH forums, please reach out to me or @colleensteele.

    • #29273
      Colleen Steele
      Keymaster

      Welcome new members! If you feel more comfortable just reading that is fine and we hope the stories and information shared here will help you. But if you want to join the conversations it will be nice getting to know you. Either way, so happy you found us. We are all PHamily here.

    • #29295
      Terry
      Participant

      G’Day ,
      Guess where I’m from. Yep,I’m from a land downunder. Hmmm should write a song with that line.
      Seriously though I’m from Brisbane Australia ( sub tropics).Retired up to here from Melbourne in mid 2,000s .Much like you guys finish up in Florida from NY or wherever.
      Up until this horrible affliction was a very active golfer with a 12 handicap and yachtie. Don’t play golf anymore but scaled down to a 22 foot sailboat which I sail solo weekly all year round . Diagnosed with pah last june after complaining I had SOB for three years. My pressure level? was 48%
      I was pretty critical of my doc. and told him it was all his fault as I never had any medical issues until he started giving me tablets to take for High Blood Pressure etc. now anything to do with heart or arteries I’ve got. Poor bloke saw the joke eventually.
      Current drugs for pah
      Macitentan and Tadalafil.
      As I said on another post thank you for being here.

    • #29320
      Jen Cueva
      Keymaster

      Hi @terry, welcome, and thank you for sharing some of your PH journey with us. I already like your sense of humor. My apologies as I replied on Friday; I do not see it here.

      Australia has always been on my travel “bucket list.”

      That poor doctor, I can picture his face when you said that, lol.

      I look forward to chatting more with you. Please let us know how we can best support you.

    • #29321
      Jen Cueva
      Keymaster

      I wanted to welcome the new members that joined us within the last week or so. This is an amazing group. Thank you all for being supportive of each other. Some newbies like to read, and that is OK, too. When you feel comfortable, you can post.

      Please help me as we welcome @caroln, @stillc, @terry, @eboost, and @mknevada.

      If you have not yet done so, please share a little about yourself. Here are a few suggestions to help you get started.

      Your name and location?
      Are you a patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      If y’all missed it, @terry already shared some of his PH journey with us above.

      We look forward to learning more about your PH journeys. If y’all have any questions about the PH forums, please reach out to me or @colleensteele.

      • #29322
        Colleen Steele
        Keymaster

        Welcome new members! I look forward to getting to know all of you through the forums.

    • #29325
      Meghan Nevada
      Participant

      Hi, my name is Meghan – I’m from Texas, Houston area. I was recently diagnosed in Jan 2021 and have been on Opsumit and Tadalifil for about a month now. I’m supposed to be starting Uptravi soon. Getting all the meds approved has been such a nightmare and very confusing, but it seems like things are slowly getting worked out. I’ve also always been very conscious of what I put in my body so going from no medications to a handful of pills every day was an adjustment and caused some anxiety starting out. My PAH symptoms came on pretty abruptly as I was working out 4 times a week, walking 3 miles a day no problem and all of a sudden I started feeling bad starting Sept 2020. I was pretty vigilant in staying on top of my doctors to reach a diagnosis although it took several months, from what I read on the forums so far and from other resources it can take years for some to receive their answer so I was fortunate in that regard. Still would have preferred not to have this condition obviously, but these are the cards we are dealt I reckon. I am 29 years old and this information is still very fresh, but I would say my head-space has improved over these past few weeks. Its still very upsetting and it hits me in waves every so often. My husband and I had just started trying to conceive (no children yet) when we found out. Its been quite devastating, I feel like not only am I mourning for myself, but also for our children that we will not get to have. But like I said, still very fresh for me and I’m not willing to give up on the children front at this point so that is mainly why I decided to join. I want to get more information on what my options are from people who have lived it since there isn’t much out there on the web.

      Thanks in advance for the support and for keeping up this platform!

      • #29333
        Jen Cueva
        Keymaster

        Hi @mknevada, it sounds like you could be my neighbor. LOL, I am between Houston and Galveston.

        I know this is all a bit fast and overwhelming. I am happy to hear that things are starting to fall into place for you. I am on Uptravi as well. Do you go to Methodist?

        The specialty pharmacy, usually Accredo, are really good at educating on the treatments. Did you have an Accredo nurse visit before your meds?

        My heart aches as I read that you were starting to try and conceive. Did you mention this to your doctor? I know most say definitely no, but I know a few PH patients who have had kids. Often, the pregnancy is what caused the PH to show up. I am sending you big hugs. I know there is nothing that I can say to help you as you go through the emotions.

        Thanks for sharing some of your PH journey here with us. Let us know how we can best support you.

        • #29352
          Meghan Nevada
          Participant

          Hi Jen, sounds like it! I will message you pivately 🙂

        • #29356
          Jen Cueva
          Keymaster

          Hi @mknevada, I will go look now. Thanks for letting me know.

    • #29327
      Terry
      Participant

      G’Day Meghan,
      I am also new to this site and feel relieved to have found it.
      Good on you for getting a diagnosis so quickly .It took me three years of complaining that I could not breath with any exertion like walking up one flight of stairs.
      Now I’m middle aged (77) so what I say may not apply to you.
      I try to look on the bright side insofar as I know what I have and pills can control it.
      Actually not knowing what I had actually saved my life . What!you say.
      My doctor sent me to a cardiologist for tests when I first complained about sob and it resulted in me being rushed to hospital for a stent in my LAD artery ( widow maker) as it was 90% blocked and I was on verge of massive heart attack. anyway.
      I have been on Macitentan and Tadalis since june last year. In my case it took three months to really feel the benefits . I’m not back to where I was before 2017 but can at least function normally . Hell sometimes I’m even tempted to break into a jog during my daily 2 klm walk. The negative for me has been that I have developed deafness in my left ear and tinnitus. I am blaming the Tadalis and will be talking about it with my consultant.
      Of course there is always a bright side to it . My better half sits to my left when watching tv and driving. joking, joking. Talking about joking I mentioned to my wife ( are you still allowed to say wife over there or is everyone a person) the other use for tadalis. She did not even look at me ,just said ‘don’t even think about it’ .
      Good luck mate.

      • #29335
        Jen Cueva
        Keymaster

        Hi @terry, I know that Meghan appreciates your welcome. I love that you share your optimism with her, too.

        I have to laugh as you ask, are you still allowed to say wife over there, or is everyone a person, lol.

        Your wife sounds like she’s accustomed to your jokester tactics, lol

      • #29464
        Meghan Nevada
        Participant

        Terry, you are a hoot! My husband makes similar jokes about the tadalifil. And that is amazing regarding your LAD artery! God does work in mysterious ways. I try to keep that in mind 🙂 Thank you for sharing.

    • #29345
      Colleen Steele
      Keymaster

      @terry thank you for the warm welcome to Meghan and sharing your delightful sense of humor with us. If my dad can still get away with calling my mom his old lady then I think you are pretty safe with wife. LOL!

      On a serious note, @mknevada my heart goes out to you. I suggest what @jenc mentioned, I would discuss pregnancy further with you doctor. If he/she isn’t a PH specialist you might want to find one because they can better advise you in this regard.

      You have been through a lot. Make sure you take care of yourself both physically and emotionally. We discuss a lot about whole person care in the forums. It’s so important! We are here for you any time. Ask questions, share updates, vent or just read, whatever you need and is most helpful to you.

    • #29346
      Carol Volckmann
      Participant

      Hello Terry and Meaghan, I know you will receive a great deal of information and support from this forum, I certainly have. I had never joined something like this, but very happy I joined this group. Jen and Colleen are the most caring, up front, full of resources and … so full of love!

      I am 77 and was diagnosed with PAH 17 years ago after years of finding the right team who could help after many misdiagnosis. My PAH was caused by Sclaraderma. Like both of you I had never been on any medication and now – my pill boxes are full and I am on Remodulin by IV, Letairis and Adcirca.

      The whole thing wiped me out when I was first diagnosed. I guess we are luckier today as the science and medical world have made hugh strides in therapies to keep us going.

      I am a yachie too – was a yacht broker for many years in Puerto Rico and Ft Lauderdale, FL. Now we live on the West Coast of Washington.

      Meghan, this must have hit you like a tun of bricks, my heart goes out to you and your husband. It sounds like you have found the right team to back you up and help guide you through this. None of this is fair but you don’t have to give up. There is life after this diagnosis and it can be very good.

      Please do not hesitate to ask lots of questions and when you need some support, a hug the people in this forum are right there for you! Hugs from the Pacific Northwest.

    • #29379
      Roger Bliss
      Participant

      New guy here. My Name is Roger and I am from Wasilla, AK. I was diagnosed with PAH last November. I have been short of breath for the past few years. I figured it was a combination of getting old (67) and out of shape. I was told I had COPD at first. Then changed doctors and found I have PAH. At the moment I am on Ambrisenten and Tadalafil, along with a variety of blood pressure and blood thinners.

      Along with PAH I have cancer (CLL/SLL a form of Leukemia), Celicac disease and Gerd. All of them are under control and don’t bother me.

      I must admit being short of breath gets on my nerves. Just wondering if my breathing will get better with time or am I stuck where I am at now?

      • #29396
        Colleen Steele
        Keymaster

        @wheeldog thank you for sharing your story with us. You really have a lot going on but it sounds like you are coping as best you can. But I can imagine there are days when having PH and some other serious co-existing conditions can be really hard. When you have rough days I hope you will check-in with us. We are a very caring and supportive group here.

        Being misdiagnosed with COPD is unfortunately a common occurrence in the PH world, but it sounds like your medical team is on top of it now and you are in good hands. I wish I could say your breathing will definitely improve with treatments, but everyone responds differently and co-existing conditions complicate the statistics. Are you using supplemental oxygen?

    • #29382
      Carol Volckmann
      Participant

      Hi Roger, I was diagnosed with PAH after being misdiagnosed for several years. The first 2 Pulmonolgists told me I had 3 maybe 5 years to live – that was 17 years ago.

      I had always been physically active and shortness of breath really did a number on me mentally. I was actually told by those 1st 2 doctors that excersis would not do much good WRONG!

      When found the Pulmonolgist who really specializes in PAH told me I needed to excersise as much as I could. My breathing DID get better. Still unable to go up steep hills but with the meds and excersis my breathing is better.

      I may be getting older – but never old! I am 77 and plan to be around for many years to come.

      I am so sorry to hear of your additional health issues but glad you have them under control. It seems like so many with PH they also have other health issues to contend with. It seems my PAH was actually caused by Sclaraderma.

      Living in Alaska cannot be that easy for you as I know breathing in cold air really effects PH.

      It does sound like you have found the right team to work with. I hope your meds and some excersis will help you. Sending you very positive energy and a hug too from the Pacific Northwest, WA.
      Carol

    • #29383
      Terry
      Participant

      G’Day Roger, Carol,
      Sorry to hear you have PAH Rog. but isn’t good to know you know what is causing your SOB. I was diagnosed in june last year after three years searching for an answer and put on macitentan and tadalafil. I am 77 and to be honest it took me a good three months to feel a noticeable improvement and lose that SOB all the time. Each week I feel that little bit better albiet I have to act sensibly and not try and walk up steep hills etc. My darling is quick to tell me to stop puffing like a dog .I’m sure its a bad habit I acquired before the meds. kicked in.
      Carol, mate , fellow yachtie, Went out sailing today and I reflected on how little tasks on board twelve months ago required frequent rests whereas now I just do it .
      Today.
      Smooth water,10 knots , close beam reach ,25C
      Ha I’m lying actually choppy, 20 gusting to 25 ,humid as and 32C . but hell I loved every minute .
      I need a lie down .

    • #29390
      Carol Volckmann
      Participant

      Hey Terry, you really had me going 10 knots calm seas and close beam reach – every sailors’ dream ha! Still it is great that you are out there! Next time you go out, take me along. Keep up that wonderful sense of humor and take a rest when your bride tells you!!

    • #29402
      Roger Bliss
      Participant

      Thanks everyone for the kind words. I was doing better when I was taking Prednisone, but they took me off that. I walk every afternoon with some guys in the neighborhood. They call us the “Geezer Patrol”. One of the guys is pushing 90 and has COPD. Normally I can keep up with him, during our mile walk, but today I had to stop and catch my breath. I have a Dr appointment on the 22nd and we can figure things out.

      • #29468
        Jen Cueva
        Keymaster

        LOL, @wheeldog, I love it! The “Geezer Patrol” is so funny. But it sounds like you guys have a blast. Wow, 90 and walking, that is amazing! I am betting that y’all also give the neighbors a bit of pranks. Please don’t overdo it; we would like you to stick around.

        Please keep us posted on your upcoming appointment.

        • #29513
          Roger Bliss
          Participant

          Had a Dr appointment yesterday. I tried Ambrisentan for 3 days. It didn’t work out too well and had to stop. My feet swelled up so bad I couldn’t get my shoes on, got real short of breath and my head chest got so plugged up I had a hard time sleeping. Going to try Bosentan next to see if it works. It will take a while to get approval from the insurance co.

          Right now they figure my lungs are working at 30%.

    • #29514
      Carol Volckmann
      Participant

      Roger I am so sorry to hear Ambrisentan was not for you! The side effects must have been scary for you. I have been on Ambrisentan for years along with 2 other drugs and all 3 have been a great help. I hope Bosentan will work for you, I know it has for many. We are all so different on how our bodies react to drugs. Don’t give up hope there are so many drugs out there now that really do help PH. Hope your insurance gives you the right answers. Do you get any help from grants to help with your co-pays?

      • #29518
        Roger Bliss
        Participant

        They were more frustrating than scary. I am on Medicare and have AARP as a supplement with their best prescription plan. My cancer meds are very expensive along with the PAH meds. So far, between my prescription plan and grants I have had a 0 copay for the expensive ones. I have a small co pay for regular prescriptions though.

        I hope Bosentan works too.

    • #29521
      Carol Volckmann
      Participant

      Good luck Roger. So glad to here you are on Medicare, good supplement and a grant to help with the costs of these drugs for PAH and cancer! Thank God we no longer have life time limits! 😊

    • #29525
      Colleen Steele
      Keymaster

      @wheeldog my son was on Bosentan and I don’t recall him having problems with it. I hope it is a better option for you. Keep us updated.

    • #29979
      Roger Bliss
      Participant

      I am wondering what other drugs people are using for their PAH besides Bosentan and Ambrisentan?

      I had a reaction to Ambrisentan and I don’t see Bosentan working out for me. I just found out that I need a liver function test every month or the pharmacy won’t ship out the Bosentan…….and it will cause problems with my cancer meds. I have been waiting for approval for Bosentan since the end of March. I just got approved a couple days ago…….long story.

      I am looking for something that is simple to use, as going in for tests every month won’t work out. We travel in the winter and it would make things too complicated.

      I would appreciate any advice.

    • #29980
      Carol Volckmann
      Participant

      Hello Roger, I am sorry that Ambrisentan didn’t work for you. The medications that I have worked really well for my PAH are Remodulin (Trespostinil) this started out subcutaneously for about 14 years until the site became too painful, now I have Hickman IV line (a bit cumbersome but no pain) this drug is continuous. The other 2 meds are Ambrisentan and Adcirca – both oral. The combination has worked well. None of these has required multiple and constant blood/lab work.

      I hope your Pulmonolgist is working closely with your Oncologist. Working out what works best for your cancer and PAH must be a real roller-coaster for you. I hope the right combo comes soon for you.

      You will be in my thoughts and sending you lots of positive energy!
      Carol

    • #29981
      Carol Volckmann
      Participant

      Hello Roger, I am sorry that Ambrisentan didn’t work for you. The medications that I have worked really well for my PAH are Remodulin (Trespostinil) this started out subcutaneously for about 14 years until the site became too painful, now I have Hickman IV line (a bit cumbersome but no pain) this drug is continuous. The other 2 meds are Ambrisentan and Adcirca – both oral. The combination has worked well. None of these has required multiple and constant blood/lab work.

      I hope your Pulmonolgist is working closely with your Oncologist. Working out what works best for your cancer and PAH must be a real roller-coaster for you. I hope the right combo comes soon for you.

      You will be in my thoughts and sending you lots of positive energy!
      Carol

    • #29982
      Carol Volckmann
      Participant

      Roger, forgot to let you know we travel a great deal and the special pharmacy sends all my supplies wherever we are. We found the best system is to have them send everything to the nearest UPS store and has worked all across the country.

      • #29996
        Roger Bliss
        Participant

        Thanks for the information. We have a place in AZ so having an address will work out. All 3 of my doctors have the others cell numbers and work together. Every once in a while something slips through the cracks.

        How was the Remodulin (Trespostinil) administered? Was it some sort of pump? I spend the summers working construction bouncing around in a dump truck. In the winter we ride motorcycles around the south west. Would it be possible to use this drug under those circumstances?

    • #29984
      Colleen Steele
      Keymaster

      @wheeldog oh no, I’m so sorry you are struggling to find the best treatment for you. Ditto to everything the always helpful @cdvol3gmail-com shared and suggested. It is so crucial that oncology and pulmonology work hand in hand when treating you and making decisions. Hopefully they are already doing that.

      I am going to start a topic about Cancer and PH meds. Hopefully it will inspire other members to comment or maybe bring in some new ones with this experience.

      Please keep us in the loop about how you are doing.

      • #29997
        Roger Bliss
        Participant

        I stopped by the other thread, good idea…….thanks.

        All 3 of my doctors work well together, so that isn’t much of a problem.

        I am sure this will get worked out. My lack of patience is my biggest problem. I am on lots of different meds that seem to work well, PAH, blood pressure, blood thinners, gerd, cholesterol, cancer and shingles. It gets complicated trying to add a new one that doesn’t conflict with the others.

        • #30011
          Colleen Steele
          Keymaster

          I can only imagine the struggle @wheeldog. I’m sorry you have so many medical concerns battling each other. Glad to hear you have confidence in your team of doctors. That is so important! Keep us updated on how you are doing. We are here for you.

        • #30013
          Roger Bliss
          Participant

          They are going to try me on Tyvaso. We’ll see how that goes. Next week they are going to drain the fluid out of my lung. Hopefully that will help my breathing too.

    • #30009
      Carol Volckmann
      Participant

      Hi Roger, when I first went on Remodulin it was delivered via SubQ (subcutaneously) with a small pump that I would clip on my belt. The site of the cleo that stuck in my tummy either left or right side – the site would become painful so then you switch it to the other side making sure you are no less than 2′ away from your navel. The special pharmacy sends out a nurse to go over how to use this and how to keep everything sterile. Supplies are sent out and you have to put a new cassette every few days …. nurses will go over all of this very carefully. When you first insert the cleo your site can be quite painful but that will subside. I had SubQ for over 14 years until it became too painful and was switched to the Hickman IV central Line – no more pain, but you have to be VERY careful of infections – this is an open site (I cover it with an AquaCel Foam, but some folks don’t). This line goes in up by your neck and the line goes inside you up to a vein in your heart. Outside is a long line that goes to a larger pump that a cassette is attached to, I wear mine in a fanny pack. Again nurses will walk you through all of this and they are only a phone call away 25 hours a day (they are fantastic) every day.

      If you want to find out more, please do talk with your team first and you can also go on line even go on You-Tube will walk you through this. You have a great deal on your plate right now so do talk with your team to see what would be best for you and would not interfere with your other meds. I am not a very patient person myself, but I have had to learn to slow it down and do what has to be done for my quality of life. I am now 77 and plan to be around for a very long time!

      Good luck Roger and please know there is a great deal of support for you out there!
      Carol

      • #30014
        Roger Bliss
        Participant

        Thanks for all the info. I appreciate you taking the time to respond.

        Had a doctor appointment today. He didn’t want to put me on Remodulin as he is worried about infection from the needle site. We are going to try Tyvaso. It’s an inhaler that I take 9 puffs 4 times a day. Still have to check with my oncologist to make sure it will work with my cancer meds. Hopefully, it will and I can get it fairly quick.

    • #30015
      Carol Volckmann
      Participant

      Good morning Roger, I really hope Tyvaso works well for you. I wanted to go on it, but the dosage would be way too high for me to handle compared to the Trespostinil dosage that I am on. Wishing you success with the Inhailer!
      Hope you are going to do something special for yourself this weekend! 😊

      • #30017
        Roger Bliss
        Participant

        Thanks!! It’s mothers day weekend. Ill do whatever the wife wants to do….it’s her day.

        • #30020
          Jen Cueva
          Keymaster

          Aww, @wheeldog, I love that you were already geared to do whatever the misses want to do. What did y’all end up doing?

          Thinking of you and sending you positive vibes this week as they drain the fluid from your legs. Please keep us posted on all of your appointments. You are one busy man.

        • #30033
          Roger Bliss
          Participant

          Thanks for the positive vibes…..can use all I can get.

          Mothers Day pretty much started out normal…..I made breakfast, gave her flowers and candy. Then she wanted to go to Costco. Turns out she made an appointment for me to get my hearing tested. Guess she was getting tired of me saying “HUH’, “What?”. Then there’s the matter of loud TV along with everything else that goes along with living with someone who is hard of hearing. She also got to shop alone while I was being tested, which was another plus for her. It turned out my hearing was bad, “big surprise”.LOL They had a set of hearing aids in stock and stuffed em in my ears and off we went home. She was able to talk to me in a normal voice. Then she told how that was one of the best Mothers Day presents she ever got. Now it’s gonna take me a while to get used them. I think she got used to them right away.;-)

        • #30043
          Jen Cueva
          Keymaster

          Hi @wheeldog, I love your wife! It was Mother’s Day, but she was looking out for her man. I am so happy that you got the new hearing aids, and they are helping. I can imagine that your home is a tad bit quieter now.

          Costco shopping alone, oh I would be in big trouble, hehe.

          It sounds like she had an awesome Mother’s Day, and you did, too. Y’all sound like such an amazing couple. I love your stories.

          Keep us posted on your week. Tell the wife that she has an admirer in Texas. 😀

        • #30052
          Colleen Steele
          Keymaster

          @wheeldog funny, my mom and dad just went through a very similar experience this year. My dad finally got hearing aids. It was no surprise to the rest of us that his hearing was very bad. But, my mom needs them too and won’t admit it. She still needs the TV loud and my dad doesn’t…it creates some grumpy parents sometimes when I call to check-in on them.

    • #30016
      Colleen Steele
      Keymaster

      @wheeldog I just read that they will be draining the fluid from your lungs next week. What I have heard from other patients who had to have that done is that it helped their breathing a great deal. Fingers crossed it will be the same for you!

      • #30018
        Roger Bliss
        Participant

        Thanks!! I had it done a year ago. They drained out 1.2 liters. It made some difference, but not a lot. There isn’t much this time, they just want to analyze it and see which disease is causing it. Last time it was caused from the cancer.

    • #30298
      Roger Bliss
      Participant

      I haven’t updated in a while. That’s because nothing has happened up to today. Went in and got my right lung drained. 3 doctors looked at my scans and thought there wasn’t enough fluid where I “needed” it, but wanted it drained to see what was in there. Surprise surprise, they took out 1.6 liters. The doctor was VERY surprised to find that much in there. Last time it looked like beer with a head on it. This time it looked like a red wine with a head on it. I would post pictures, but don’t want to gross anyone out. I will update when it is analyzed and they figure out what was in there.

      As far as the Tyvaso goes….that is still in limbo. About 2 weeks ago the pharmacy called and said it was in the works and they would let me know in 72 hours. A week later I called them and they said it was still in the works. This Friday, which will be 2 weeks after they told me 72 hours…….I will call them again.

      I have a “phone appointment” with my doctor this Sat. Don’t know if he will have the results from my lung fluid by then??? Hopefully he can rattle the pharmacies cage and see whats going on.

      • #30313
        Jen Cueva
        Keymaster

        Hey there @wheeldog,
        I am grateful that they did go ahead and drain the lungs. Just so you know, I will not be able to drink a beer or red wine now, LOL.

        Are you feeling any relief after that much fluid drained? I would think a bit less SOB?

        As far as the Tyvaso, I am sorry that You are still trying to get that going. Is this with Accredo? I know it can be frustrating to wait and wait some more. As @colleensteele suggests, I would ask for a supervisor in the department to see why they are taking so darn long.

        I hope that your doctor can rattle the cages at the pharmacy. I have been dealing with mine for reorders since last week. Good luck, and please let us know what the doc says.

        • #30319
          Roger Bliss
          Participant

          I am not as short of breath as before. My lung is not used to having so much room. The doctor explained as the lung expands into the new space it will cause me to cough. If I take a deep breath I start coughing. While they were draining my lung it was hard not to cough as it expanded.

          Yeah……I am with Accredo. I am not sure whose fault it is??? My doctor has a new staff who may not of sent all the information????

    • #30299
      Colleen Steele
      Keymaster

      @wheeldog thank you for the update. It sounds like it was a good thing they proceeded with the drain! I don’t have experience with this so I’m not sure which is worse, the fluid resemblance of beer or red wine. I’m sure neither is good to see but red…perhaps an infection of some sort?

      Whatever it is I hope it is easily treatable and most of all, that you start feeling some relief. I’m sorry you are going through this. I would think it’s possible your doctor will have answers by Saturday, fingers crossed!

      As far as the Tyvaso goes, next time you call I would ask to speak to a case manager or someone over the heads of those you have already spoken too. Perhaps mention this to your doctor during the call Saturday. Maybe he can do something to expedite the order.

      So, how are you feeling since the fluid was drained?

      • #30320
        Roger Bliss
        Participant

        The beer colored fluid wasn’t a big deal…..just part of my CLL/SLL. I’ll admit the red stuff has me concerned.

        Guess I need to deal with a “higher up”. My cancer meds come from Optum in Phoenix and they have been Great to work with.

        It helps things are busy at work. It keeps my mind off of my health. As one of my good buddies always says ” If you keep moving, they can’t put you in a box”.

        • #30330
          Colleen Steele
          Keymaster

          @wheeldog what kind of work do you do? I can’t remember if you already shared that with us.

          “If you keep moving, they can’t put you in a box” is a new favorite saying of mine. That is a good one!

        • #30334
          Roger Bliss
          Participant

          I have a small gravel hauling business. Used to have 3 trucks, but am down to just 1 now. I got tired of dealing with employees. If you get bored you can check out my web page. I just have the truck with the blue cab left.

          HOME

        • #30348
          Jen Cueva
          Keymaster

          Hey @wheeldog, I love the name of your company. My hubby is a diesel mechanic and works for a major trucking company for almost 20 years. Thanks for sharing the information about your company. That takes a lot of one person to run a successful business, so congrats to you.

          I love that saying, “If you keep moving, they can’t put you in a box”, such a great reminder and true.

          I hate that you had to make another trip to the ER. How are you feeling today?

          LOL about the wine, you are such a crack-up, we enjoy the laughter. Thanks for sharing that with us all.

        • #30351
          Roger Bliss
          Participant

          Tell your husband that it’s us drivers screwing trucks up that keeps him in business.;-)

          I am feeling fine……just a little tired as usual. Coughing up blood just kinda spooked me. It was on my discharge papers to call my doctor if I was coughing up blood……so I did. He sent me to ER and ordered some tests.

          I don’t take life too seriously. No matter how you live your life your gonna end up on the other side of the grass sooner than later. I would rather enjoy myself than worry about everything.

        • #30357
          Jen Cueva
          Keymaster

          LOL @wheeldog, my hubby tells me all about the drivers, hehe. They have company drivers and also owner-operators, so that it can be a challenge some days. The crazy part is all of the new technology on the trucks,. He does diagnostics on a computer majority of the time.

          Have you had any further spells of coughing up blood?

          Once again, you are offering us quotes to hold on to and remember, “No matter how you live your life, your gonna end up on the other side of the grass sooner than later”- this is another true statement, and we all could learn from you. It’s always more fun to laugh rather than cry—cheers to a new week ahead.

        • #30372
          Roger Bliss
          Participant

          I’m doing ok. Coughing up just a little blood. Have an appointment Friday will report on how it turns out. Worked all day today…..kinda fried. Hope you are doing well.

        • #30376
          Jen Cueva
          Keymaster

          Hey @wheeldog, I hope that you rested well last night after a busy day working. I can relate to wanting to stay busy and not dwell on your health issues. It sounds like your business is keeping steady, which is great news. Please try and take rest periods when you can. I have a feeling I will learn another quote in your response to this. Hehe.

          But the coughing up blood is concerning. If it worsens before Friday, will you go back to the ER? Please do keep us posted and let us know how we can best support you.


          @colleensteele
          , I did not know that your dad drove a truck. Manny has mentioned that at times he may want to be a driver versus working on the trucks. But, of course, he wouldn’t leave me home alone for more than a few days, so he keeps on working on them. I told him maybe we could do short drives, and I could join in and travel for free, LOL

        • #30387
          Roger Bliss
          Participant

          Thanks for the concern. Blood is almost gone a nurse from the ER actually called me today to do a follow-up. She said it sounded like I was ok . I worked all day and will be busy through Sat. Not as fried tonight. Even when I am healthy it takes a toll going from “couch potato” to working 10-11 hours a day. I will get used to it in a week or so. Don’t have a saying for that one.LOL

        • #30396
          Jen Cueva
          Keymaster

          Hey @wheeldog, I am happy to hear that the blood is almost gone. Also, happy that the ER nurse called to check on you. I am surprised that you answered with your busy workday.

          Like you mention, healthy me struggled when I worked more than my usual 8-10 hour days.

          Please do take breaks. Owning your own business, often the downside is you are responsible for all needs. For you, this is loading, driving, and unloading gravel to clients.

          Your appointment is tomorrow, right? Will you have help at work then, or will you work before and after your appointment?

        • #30400
          Roger Bliss
          Participant

          Your giving me way too much credit for working hard. 98% of the time I drive into a pit, tell the loader operator over the CB what I want. He loads me. Then I deliver the product to the customer, pull a lever and the truck dumps itself. When the customer has enough product I write up an invoice and they pay me……no hard work involved. Basically, I just drive around all day in a big pickup on steroids.

          Nobody needs to replace me. I just told the contractor I had to leave work early for my appointment.

          All my calls go to my cell phone in the truck. I have a high end Blue Parrot headset (your husband can tell you about them as most truckers use them) so it isn’t a big deal to take a phone call. I have people text me their information so I know where to deliver. My world is pretty simple.

        • #30406
          Jen Cueva
          Keymaster

          Hey @wheeldog, I had to laugh as you are still working hard. I love that you say you are like driving around all day in a “pickup on steroids”. I have seen what steroids can do for me, so this could be scary. HEHE.

          I hope that you have some answers at your appointment today. Once you are rested up after a busy day, please update us. I know you mentioned that Saturday is busy, too.

          Your positive attitude and your simple life approach are contagious. Take care, my PHriend.

        • #30412
          Roger Bliss
          Participant

          Hmmmmmmm…..don’t know how to reply to 2 people at once????

          Anyway……my appointment got canceled at the last minute due to the Doctor having an emergency. While it is VERY frustrating having to wait, I understand someones life in danger is more important than my appointment. The gal who notified me about my cancellation is not able to make another appointment. I’ll have to make another Monday.

        • #30426
          Jen Cueva
          Keymaster

          LOL @wheeldog, if you want to tag us both, do and @ then type our names, one at a time. For example, @jenc and @colleensteele.

          I know it can be frustrating to have a doctor cancel on you, especially at the last minute. How was your weekend? I hope that when you called this morning, you could get in ASAP.

          In the meantime, let us know how we can support you. I am betting you have yet another busy week with gravel.

          I love the suggestion from @colleensteele to save all of your sayings, LOL.

        • #30441
          Roger Bliss
          Participant

          Well nobody is ever gonna accuse me of being a “computer geek”. If you compare my computer literacy to reading I am still at a reading level of “See Spot run”. LOL

          I have a phone appointment Friday at 6:00PM. The blood is gone when I cough now. I am actually feeling much better. I can work a 10 hour day without getting “real fried”. I seem to get stronger every day. All I want to do is get my Tyvaso and find out what the stuff in my lung was and get on with my life. I am fairly sure the fluid in my lung has to do with my cancer, so you folks with PH don’t have to worry.

          Seems like the longer I stay away from doctors and their tests/drugs, the better I feel.LOL

          It’s pretty easy to have a positive attitude up here in the summer. Warm temps and lots of sunlight. It was pushing 70 today and sunrise was at 4:20 AM sunset 11:34 PM. I can’t imagine being any place else in the summer. My wife retired in December and have never seen her happier than this summer as she does “stuff” around the house and yard. I am so happy for her. Winter is another story. We get days with less than 6 hours of daylight. It has the opposite effect and bummbs you out. “Cabin Fever” is described as having a 12 ft stare in a 10 foot room. It gets weird up here in the winter. It was ok when we were younger and had lots of outdoor activities in the winter. Now we head to our place in AZ.

          Where are you guys posting about your PH problems? I need to start supporting you. 🙂

        • #30450
          Colleen Steele
          Keymaster

          @wheeldog that is a good sign that you have stopped coughing up blood. It would be nice though to find out what was causing it. PH can cause this in some people but your situation is different and it sounds like the cancer might have been the culprit. Again, so sorry you experienced this.

          Honestly, you really do support everyone here by sharing your story and asking questions. We have many members who prefer following the forums but aren’t comfortable posting. You never know who among them needs the same support you do at the moment.

          Just stick with us. You will see people posting their hard days too. Thank you for being part of the PHamily!

        • #30467
          Roger Bliss
          Participant

          Thanks for the concern. I’ll post after I talk to the doctor Friday.

        • #30476
          Jen Cueva
          Keymaster

          Hey @wheeldog, yes, please do update us after your appt this Friday. I am happy that they got you rescheduled so soon. Take care.

    • #30325
      Carol Volckmann
      Participant

      Hi Roger, hope you are feeling much better. You did know that beer goes in your tummy not your lungs! So, no more beer in your lungs! I use UptumRx also for all my other meds. They are very helpful, I always call to speak to live person! Have a great weekend and keep on moving forward!! 😊

    • #30335
      Roger Bliss
      Participant

      I am feeling better today. Started coughing up blood yesterday and ended up in the ER. After CT scan and blood tests it turns out it isn’t enough to worry about. Got to admit I was nervous for a while.

      I figure over the years enough beer went down the wrong way and accumulated. 😉 Don’t know how the wine got in there….I rarely drink it.

    • #30371
      Colleen Steele
      Keymaster

      @wheeldog thanks for sharing your company with us. My dad was a tractor trailer driver for a company in NJ. He wasn’t long haul, just the tri-state area. He loved his job. Enjoyed being on the road and seeing new places. I know it isn’t quite the same as your job. Just wanted to share my trucking connection too.

      Coughing up blood would have seriously startled me too. Thank God the test results were not concerning.

      • #30373
        Roger Bliss
        Participant

        I just deliver topsoil/gravel products in the local area. Most deliveries are less than an hour round trip. We just do a lot in a day.

        I’ll admit I was scared with the blood. I will give an update after my Friday appointment. Thanks for your concern. I hope you are doing well.

    • #30409
      Colleen Steele
      Keymaster

      @wheeldog I hope your appointment goes well today. We are thinking of you.

      A few posts ago you wrote, “Don’t have a saying for that one.” It made me laugh because I have been thinking we should save all your sayings to refer to as needed. You are a delight!

    • #30727
      Roger Bliss
      Participant

      @jenc

       

      @colleensteele

      Guess I did that right????

      I never got a phone call, so no update. I’ll call the office Monday and see what they can do.

      Got a call from the pharmacy and my Tyvaso was approved and it will be delivered to me on Tuesday. I am not supposed to use it till a nurse shows me how. What could possibly go wrong with that!!!! LOL

      • #30737
        Jen Cueva
        Keymaster

        WTG, Roger. But once you figured that out, our new design no longer allows us to tag one another. I think it makes it more personal when replying by name rather than a username. How about you?

        I am happy that Tyvaso is on the way. Yes, when starting a new PH treatment, it’s common for the Accredo home health nurse to do a visit. They mostly do this for educational purposes. So ask questions when that time comes.

        Please keep us posted on the doctor’s call and your Tyvaso.

         

         

         

        • #30742
          Colleen Steele
          Keymaster

          Jen, I see now that tagging is no longer an option and I agree using proper names is more personal.

           

      • #30743
        Colleen Steele
        Keymaster

        Roger, I’m happy to hear Tyvaso is on it’s way! As Jen mentioned, it is common for Accredo to go through training prior to started a new treatment. They will cover side effects and how to handle dosage changes, etc.. You might find it helpful. Write down questions and be sure to ask them!

    • #30807
      Roger Bliss
      Participant

      @jenc

       

      @colleensteele

      Hmmmmmm Never got any notification of your posts. Not sure why???

      My Tyvaso showed up Tuesday. They told me not to take any till a nurse teaches me how to use it. So…….it’s still sitting here.

      Was supposed to get a call from the doctor Wed…never called.

      Got my first ambulance ride ever today. Power steering line broke on my dump truck and leaked all the fluid out. Had to muscle my truck around to get it dumped…took a lot out of me. Called the mechanic and got him on the way. The foreman of the job wanted me to look at part of the job site to see if trucks could make it in. Started following him and things started getting weird. I felt like crap and everything  started to go dark. I sat down and the workers gathered around me. They all said I looked terrible. Someone called an ambulance. The ambulance crew was very nice and strongly suggested I go with them. I was feeling better and was thinking it over. One of the construction workers had talked to my wife and she said make him do what ever the ambulance crew suggest. He piped up and said if he refuses to go we’ll throw him in the back of the ambulance. I took the easy way out and off I went.

      Turns out it was nothing serious (most of the time), and I don’t think it was related to PAH. They did tests and a couple hours later I went home. They said it was “near-syncope”.

      When the ER doc called my doc…..it got his attention and I have an office visit Tuesday. Hopefully that won’t get canceled. I’ll update then.

      Gonna have to take a few days off work…..which is probably good for me.

      • #30840
        Colleen Steele
        Keymaster

        @wheeldog to be honest, that very much sounds like a PH episode to me. Very similar to a few experiences my son had. My guess is the excitement of the moment, physical activity and (was it hot), pushed your PH to the limit. I’m with your wife, I would have made you get in that ambulance too!

        Please update us on how things go on Tuesday. And if you still don’t hear from the nurse by then maybe the doctor can work some magic to get things going, especially after having an episode.

        I’m not sure why you weren’t notified of our responses. I have noticed random forum notifications sometimes go to my spam box, maybe that happened? I tagged you in this message. If you don’t receive the notification let me know and I will ask our IT person about it.

      • #30846
        Jen Cueva
        Keymaster

        Hi @wheeldog, I agree with Colleen. It does sound like this was related to your PH. It sounds like you overdid it a bit, and that often happens. Passing out or almost passing out is common, and I have had those episodes, too.

        That was earlier in my PH mostly, but off and on, I still have those issues. I think we women will have to agree. I am happy that you did take that ambulance ride.

        Please try and take it easy this weekend. My husband works on trucks in the heat, and it’s tough on him without PH. So he often takes cool off-breaks.

        I hope that your doctor can get the Accredo nurse your way to start your meds; some are doing virtual visits. But with teaching of new meds, I am unsure of what they may do in your area right now.

        We care about you and want to support you as much as we can.

        I hope that this will get to your email. Also, we updated our website last week, so maybe they had a glitch if it was then. Please do let one of us know if you are still not getting them.

    • #30848
      Roger Bliss
      Participant

      @jenc

       

      @colleensteele

      Got those notices ok.

      Guess you are probably right…..I over did it. Heat didn’t have anything to do with it though. Was in the 60’s. I had a flannel shirt over a tee shirt. My hands were so cold the Fingertip Pulse <b>Oximeter</b> wouldn’t work in the ambulance…..had to put a deal on my ear. That’s one thing nice about this area of Alaska…..it rarely hits 80. Usually high 60’s low 70’s.

      Other than the “near-syncope” diagnosis, they said my lung needed draining again. That’s interesting as I just had it done a month or so ago. Guess I will have to wait for Tuesday to get the whole story.

       

      • #30857
        Jen Cueva
        Keymaster

        Hi @wheeldog, my guess is you are probably back out working today.

        I am happy to hear that you are receiving the notifications again. I also give you kudos for tagging us both.

        You’re resting some or were over the weekend, correct?

        Ughh, that pulse ox and pre-syncope certainly mimic PH to me. I am sorry that you are holding so much fluid so fast. I hope and pray that Tuesday, tomorrow, you will know more as you talk to your doctor. Please keep us posted. We are here to support you.

        • #30859
          Roger Bliss
          Participant

          Actually, I am not back to work. Still not feeling right. Went to the neighbors outdoor wedding reception just down the street Saturday. Was standing around talking to folks and after 10 or 15 min started feeling woozy……had to leave. Got a lymph node in my back acting up. Usually that only happens when I get into some gluten. Still have to figure that one out. I don’t remember getting into anything with gluten.

          Hopefully, I’ll get some answers tomorrow at my doctors appointment.

        • #30860
          Colleen Steele
          Keymaster

          @wheeldog I have to say I agree with @jenc, all of what you are experiencing sound very much like PH to me. I’m concerned for you and hope your doctor can figure things out and come up with a treatment plan to help you.

          Cold can be as much as an issue for PH as heat. If you are having PH episodes to begin with and feeling cold, let’s just say the one doesn’t help the other.

          As you know, draining the lungs will help but I hope they figure out why it happened again so soon.

          Thank you for the update. I’m praying things turn around for you!

        • #30868
          Jen Cueva
          Keymaster

          Hey @wheeldog, I am concerned, as Colleen says about these episodes. I hope that you get much needed answers today at your appointment. It will not surprise me if your doctor wants to admit you to drain the lungs and monitor other PH-related symptoms.

          At the least, some testing would be a possibility, too.

          Thinking of you today, sending you positive thoughts and prayers.

    • #30877
      Roger Bliss
      Participant

      @jenc

       

      @colleensteele

      Had my appointment today……didn’t learn much. The report from the fluid in my lung didn’t have hardly any information. The doctor called the guy who analyzed the fluid on speaker phone. Basically, he said there was too much blood in it to see anything. They made plans for tests on the next batch where they could figure something out with all the blood. The doctor is concerned as to why it filled up so fast and is trying to figure it out. I have an appointment on Monday to draw more fluid out.

      Nothing new on what caused me to be woozy. Still don’t know why I coughed up blood after my last lung draw. He upped my Tadalafil from 1, 20 mg tablet to 2 a day. Hopefully this will help.

      The doctor called Accredo Pharmacy on speaker phone to find out when the nurse would be in contact with me. He also made a crack if the call was coming in ’21 or ’22. The gal said probably a month. Didn’t know if she was being sarcastic or not??? At that point I didn’t much care. I have about had it with all the BS.

      I have another doctor appointment Tuesday. Doubt if the results of the lung fluid will be ready by then???

       

       

    • #30954
      Roger Bliss
      Participant

      @jenc

       

      @colleensteele

      Another update.

      Sunday a nurse from Accredo showed up and got me started on Tyvaso. So far so good.

      Got my lung drained yesterday. They pulled out 2 liters of fluid. The doctor said there was more in there, but didn’t take it out. If they take too much fluid out it could leave enough of an air space to collapse my lung. It’s a real mystery why so much fluid came back so fast.  Every one seems to think the fluid is associated with my cancer.

      Sent an email to my oncologist in San Diego requesting an on line appointment to discuss this. If it is cancer related, I’ll probably head south and let them check me out.

      Got an appointment with the local doctor here this afternoon. Doubt if I will learn much as it is too soon for yesterdays test results to be completed.

      • #30961
        Colleen Steele
        Keymaster

        @wheeldog I’ve been thinking about you and wondering how things were going. Appreciate the update.

        One thing I’ve learned throughout this journey is that any progress is big progress because there are times when you will feel like you aren’t making any.

        Once Accredo showed up I hope you found them helpful. They were always great whenever they visited my son. Congratulations on finally getting started on Tyvaso! Also good to hear you got the lung drained.

        Perhaps it is the Cancer causing the fluid build up but if they decide it isn’t, I hope they will look further into the PH and options to keep it at bay. In any case, at least they are being proactive one way or another in trying to help you.

        • #30976
          Roger Bliss
          Participant

          The nurse from Accredo was outstanding. They flew her up from Portland Sat night and she showed up around 10:00AM Sunday. She stayed about 3.5 hours explaining things. She set me up with a local nurse to monitor on a weekly basis.

          The local doctor figures the cancer meds might be causing it. He will get with my oncologist in San Diego to discuss it. He wants to get an x-ray Thursday and get another x-ray next week to see how fast it fills up.

          Got to admit I feel really feel good now. Slept better last night than I have in a long time. Been a “good boy” too didn’t go to work for the last couple of days. Coughing up very little blood.  Before getting my lung drained didn’t do much for my breathing. This time it did……go figure. It is my understanding that Tyvaso takes a few weeks to kick in. Don’t know how much it contributed to me feeling so good???

        • #30982
          Jen Cueva
          Keymaster

          Hi @wheeldog, thanks for sharing your positive experience with the Accredo nurse. I have also found them very helpful when starting a new treatment.

          It sounds like you had enough time to learn about Tyvaso and ask any questions that you may have.

          I have not been on Tyvaso but most often I hear complaints about a scratchy throat and cough after treatments. Do you notice that at all?

          Overall, I am grateful that you are feeling much better. I hope that they find out more about your lungs filling so fast from your doctor in SD.

          I hope that Tyvaso works well for you. Most people notice a difference within the first few weeks on most medications. But, of course, we are all different.

          I always questioned if Tyvaso works faster as it is inhaled. It should get to your lungs much quicker than oral medications. Please keep us posted on how you are doing as you titrate on Tyvaso.

          Also, let us know what you find out from the cancer doctor. Take care and we are here to support you.

        • #30987
          Roger Bliss
          Participant

          I already had a cough when I started Tyvaso….so hard to tell if it is causing anything??? Don’t have a scratchy throat. I am only on 3 puffs 4 times a day. As I work my way up to 9 puffs things may change?????

          Had a video appointment with oncologist in SD on the 15th. Local doctor got in touch with him and now he moved the appointment to the 7th. Kinda makes me go hmmmmmm.

           

        • #30992
          Colleen Steele
          Keymaster

          @wheeldog I’m happy but not surprised that the Accredo nurse was extremely helpful. My son had one who in addition to the occasional home visit as needed, she would go to his grade school every year before school began in September, to educate his teachers and staff about PH and his treatments. If she didn’t do that I don’t know if they would have approved him continuing to attend school. How awesome is that?

          Ordering from Accredo can get a little frustrating sometimes but the nurses are fantastic!

          I’m really so happy to hear how well you are doing right now. Getting better rest is a big sign that things are going in a better direction! May it continue!

    • #30988
      Carol Volckmann
      Participant

      <p style=”text-align: left;”>Hope Tyvaso works for you Roger. If ever you need help the Accredo Nurses over the phone 24/7 are great. I have had a few emergency situations and, of course, they happen on a weekend night! Do not hesitate to call them no matter the time or even though you may not think it is an emergency. They are there for you.</p>
      Good luck on the 7th. Sending you positive vibes that you have some answers and a positive plan moving forward. 😊

       

       

      • #30991
        Roger Bliss
        Participant

        Thanks for the concern and information. So far I have had good luck dealing with the nurses and pharmacists.

        I’ll give an update after my appointment.

        • #30999
          Jen Cueva
          Keymaster

          Thanks, @wheeldog; I appreciate your updates. I am a bit curious about your call with your oncologist. But knowing it is a week sooner is a plus, too.

          Please do try to rest more in between your working. I hope that the Tyvaso continues to be effective for you.

          I agree with @colleensteele and @cdvol3gmail-com. The Accredo nurses have always been awesome.

          Enjoy your weekend. Is Monday a holiday for you and your company?

        • #31012
          Roger Bliss
          Participant

          The jury is out on how the Tyvaso is working. So far no bad reactions to it. In the past draining my lung has had little impact on my breathing. Then again I never had this much taken out before. I have read Tyvaso takes a few weeks to work. So I honestly don’t know what is causing me to breathe better???

          I am only working for my longtime good customers. Haven’t taken on anything new, so I am not working too hard now. I am finding out the hard way I not as tough as I was 20 years ago.;-) I am sending others to other companies. Was able to take today off.

          Everyone will be shut down Sat & Sunday. Most places are shut down Monday for the holidays. If one of my good customers needs something Monday I will help them out.

        • #31015
          Colleen Steele
          Keymaster

          @wheeldog PH comes with a lot of statistics about everything, including medication. Some people respond to things out of the common range. My son was often one of them. So, who knows, maybe Tyvaso has started working faster for you than it has for others. That is just my theory though. But hey, if it has started working already then maybe that means you will feel even better in a week or so.

          I think you are being very wise with how you are handling work right now. This way if you experience any new symptoms or side-effects, you won’t have to play a guessing game of whether it’s due to pushing yourself at work, or if it’s the Tyvaso.

          Keep updating. We like hearing from you.

        • #31021
          Jen Cueva
          Keymaster

          Hi @wheeldog, I hope that the combination of draining that fluid and the Tyvaso is helping you. Tyvaso is inhaled, so as I mentioned, it most likely would be absorbed quicker than, say, oral medications.

          But @colleensteele is correct; everyone reacts differently to treatments. The time one person may feel the benefits of Tyvaso can be longer than others.

          I am happy to hear that you are slowing down a bit with work. I know it is not your first choice, but making yourself and your health a priority. Kudos to you; I am very proud of you for doing that.

          Enjoy a relaxing 4th weekend. Is that what your plans are? I look forward to hearing more as you can update us.

    • #31048
      Roger Bliss
      Participant

      Had a video appointment with my oncologist today. I am going to drop the cancer drug for a month or two to see if it is causing my lung to fill up. My last blood test showed everything close to normal. Hopefully I can stay off them for good.

      The nurse showed up last night for my Tyvaso. I’m doing well on 3 puffs every 4 hours and moved up to 6. She will stop by again next Tuesday.

      Going in for a x-ray tomorrow to check on the fluid in my lung. Will have a doctor appointment on the 21st to see if I need to be drained again.

       

       

      • #31056
        Colleen Steele
        Keymaster

        @wheeldog it sounds like you have a good doctor. I’m sure neither of you feel comfortable stopping for cancer drug for a while but you really do need to figure out whether it’s that, PH or something else causing your lungs to fill up.

        My sister-in-law has breast cancer and was having similar problems (she doesn’t have PH though). They gave her a break from the treatments and ended up placing her on something else. She is doing better now. I’m praying things will improve for you too.

        Yay for the good news! So happy to hear Tyvaso continues to do well by you!

        Good luck with the x-ray and future appointment. Really appreciate the updates. Keep them coming.

    • #31189
      Roger Bliss
      Participant

      6 breaths turned out to be too much moved back to 4 for a while…..just moved up to 5, we’ll see how that goes. If I take too much, I get short of breath. I carry it in my dump truck to get my 4 hour treatment. The guys at work razz me about my electronic bong. LOL

      Had a Dr appointment yesterday. My lungs need draining again. Got an appointment to do it tomorrow. My next Dr appointment is Aug 31th. If it comes back after quitting the cancer drug for that long, they want to put a scope in my body cavity to see whats going on. I’m not too crazy on doing that.

      So far I haven’t seen much improvement from Tyvaso, but it is supposed to take 6 weeks or so to see any progress. Patience isn’t my strong suit. 😉

      Had a local nurse visit me for 2 weeks. She lived about 15 min from our place. She was great, however she had too much on her plate and had to quit. I hate to see her go. Tried to do a video conference with the nurse from Portland on Tuesday…..couldn’t get it to work right. She if going to fly up here on Aug 10th to check on my progress and see if she can get the video program working right. Gotta be a LOT of money in these drug companies to be able to afford these trips.

      Whenever I have been sick or hurt in the past I have been able to “walk it off” and get back to normal fairly quickly. It hasn’t been working with this PAH, so it’s pretty frustrating.

       

       

    • #31193
      Jen Cueva
      Keymaster

      Hi @wheeldog, I am happy to see an update, but sorry it isn’t more positive. I was hoping that the Tyvaso was going to help you. Someone times if we have too much medication, it can make us feel worse instead of helping. Don’t give up!

      I am hopeful that decreasing to 4 puffs will be better for you, and you will notice some benefit. That is too funny about the guys calling it your “electric bong,” laughter is a good thing. It sounds like they are jokesters like you.

      Sorry that you could not get the video to work. I hate to hear that the fluid is back; that is certainly a huge factor affecting your breathing, I am most certain. I hope and pray that once they drain it, it stays away.

      Flying for treatment is expensive. I, too, have had to do that in my early years with PH.

      I can feel the frustration as I read your update. Knowing you and the hard workingman that you are, this has to be extremely difficult. I am sending you hugs and prayers from Texas.

    • #31202
      Roger Bliss
      Participant

      Had my lung drained today. They took 2 liters out. The good news is there was no blood in it. My best “guess” is the cancer med was causing the blood.

      I am optimistic that the Tyvaso will work out after I take it for a while and my dosages get higher. I am at 5 now.

      I am glad the nurse is flying to me. I am not all that excited about flying south. The plan is to winter in AZ this winter. Hopefully, I will be stable with the PAH by then. If not my oncologist can fix me up with someone at UCSD.

      • #31216
        Colleen Steele
        Keymaster

        @wheeldog it must have been a relief to hear that at least there was no blood this time around. Still, having your lungs needing draining is no fun. I hope you won’t need this again any time soon, if at all.

        We have friends who use to always winter in AZ. They loved it so much that when they retired, they moved and live there year round now.

        Thank you for keeping us updated on how you are doing.

        • #31224
          Roger Bliss
          Participant

          Sounds like you and Jen need more support than me. You guys are much too young to have serious health problems.

          The way it’s supposed to work is your “check engine light” comes on in your 50’s. Sometimes you fix it…other times you let it go, but nothing serious should happen no matter what you do. When you hit 60’s that’s when the red light comes on and you really gotta fix that.

          I hope you both can shake off your health problems. Thoughts and prayers for both of you.

          Between getting my lung drained and the lung meds, I am doing pretty good. I was able to go down in the basement and back up without getting out of breath…..well not too bad.

        • #31229
          Jen Cueva
          Keymaster

          LOL, @wheeldog, my hubby, the diesel mechanic, says he feels defeated when he cannot fix my “check engine light” from my PH and other health issues.

          You are so kind, thanks. I feel better at home, just a bit of stuffiness and congestion, so no complaints here.

          I’m thinking of you and hope that they can figure out why you are accumulating that fluid so quickly.

          Are you working Monday through Saturday or Friday? Please listen to your body and take breaks.

        • #31250
          Roger Bliss
          Participant

          Actually when it’s busy we work 7 days a week. Drive for 6 and wash/grease the truck and do paper work on Sunday. July and August are slow months. It will pick up in September and October.

          Everyone shuts down for the winter at the end of October.

        • #31255
          Jen Cueva
          Keymaster

          Hi @wheeldog, I hope that you are taking advantage of the slower months when they happen. Otherwise, it sounds like you are nnn-stop.

          You crack me up with your descriptions. I am happy that you keep a cooler in your truck and snacks. Staying hydrated and eating, as you know, will help keep you healthy as you can be.

          You sound like you would run circles around me, so no old guy on your end. Keep taking care of yourself, and know we are here for you.

          I hope that your wife is also doing well.

        • #31268
          Colleen Steele
          Keymaster

          @wheeldog I had to laugh at the “check engine light” comment. The closer I get to 50 the more those lights are turning on. I could be dealing with a lot worse so I can’t complain…well, maybe a little but not too much. Thank you for the kind thoughts and prayers. Much appreciated!

          It does sound like you are doing a bit better. Being able to take a walk with a friend and go up and down the basement is actually huge considering all you have been going through. You sound happy and I hope things just keep looking up for you.

    • #31205
      Jen Cueva
      Keymaster

      Hi @wheeldog, are you noticing any difference with your breathing after that 2 liters of fluid was drained off?

      I am grateful to know that there was no blood. I hope and pray that this fluid stays away. Do they have you on a fluid restriction?

      My apologies, I read that you were flying there, and they were paying, LOL. I am happy that the nurse is flying to you. I do love that and have not heard of that before. You will have to let us know how that goes next month.

      Please keep us posted. What can we do to support you as you deal with this and titrating Tyvaso? I wish that I could drive your truck and do deliveries for you. LOL

      • #31210
        Roger Bliss
        Participant

        I can breathe better after the drainage. It takes a day or two for my lung to settle down with all its newfound space.

        Once they figure out how to prevent the fluid from returning, and the Tyvasco kicks in, I should be good to go.

        I will be back to work tomorrow…..gotta keep moving.;-)

    • #31226
      Jen Cueva
      Keymaster

      Hey @wheeldog, I bet that you can breathe a bit better after having that fluid drained. I am also certain that you are busy back at work.

      As you mention, once they figure out why and how to stop this fluid from accumulating in your lungs, you should feel some relief. That and the best Tyvaso dosing for you will help.

      Maybe when you are resting after a busy workday, you can update us. Are you staying hydrated and taking breaks?

      • #31249
        Roger Bliss
        Participant

        I am doing good!! If I felt like this all the time I would be a happy camper. I keep a cooler ant the truck so I have lots to eat and drink. Slow day and got off early Went on a mile walk with the neighbor. Did a brisker pace than normal as the “old guy” didn’t go. He had to crank his oxygen up another notch. We both did good.

    • #31235
      Jen Cueva
      Keymaster

      Hey @terry, how are you doing? I have had you on my mind, and thinking I had not seen any updates from you. How are you doing?

      I know that we had chatted in messages a few times, and your name popped up as I was scrolling, so I wanted to check in on ya. @mknevada, did you start on your PH medications? How is that going for you?

      • #31259
        Meghan Nevada
        Participant

        Hi Jen – Thanks for reaching out. Hope you are feeling better! I am on triple therapy – Tadalifil, Opsumit and Uptravi. I finished my titration of Uptravi mid June so I have been at the max dose for about a month and half now. Glad to be done with the titration as the side effects were not fun. I don’t get them so much anymore which is nice, just occasional jaw and leg pain. Happy to be at the top of the mountain on from a dose perspective, as is my doctor. We’ve spoken about cardiac rehab so I have been doing some research on that. I think I might wait until my next heart cath and echo before starting to see what the effects of the Uptravi have been on my pressures and right heart health. Going to explore the forums to see what other people’s experiences have been with cardiac rehab.

        • #31260
          Colleen Steele
          Keymaster

          @mknevada here is a link to a previous post about cardiac rehab. It is helpful for everyone when we revisit old topics so please feel free to ask questions or comment to this topic. I will also tag you there and ask others to share their experience.

        • #31265
          Meghan Nevada
          Participant

          Thanks Colleen, I agree! There were a couple to choose from so I actually just posted in the forum about rehab lol.

        • #31273
          Jen Cueva
          Keymaster

          Hi @mknevada, I am happy to hear that you reached the max dose of Uptravi. I am also on that dose. I, to continue to get that nagging jaw pain as well as leg pain.

          I use hot soaks in the bath and heat to help my leg pains. My doctor also started me on gabapentin twice per day when I started having leg pains. I am now taking it 3 times per day, and it does help me.

          An Accredo nurse told me that some have tried taking a sip of something cold before their first bite of food to help lessen the jaw pain. She told me a few weeks ago. I forgot about that until I read your post.

          I love that “top of the mountain” referring to the max dosage. That is a great way to think of it.

          I did pulmonary rehab when I was first diagnosed. Unfortunately for me, they were not the best, so I feel like I did not get as much out of it as some do.

          But, I have many PHriends who have excellent results with cardiac and/or pulmonary rehab.

          When are you scheduled for your next echo and RHC?

          Thanks for the well wishes; I am feeling better.

      • #31271
        Terry
        Participant

        G’Day Jen or is it Megan I am replying to .Never quite sure which reply button to press .The top one or the bottom one. I’m doing great. What bliss its been not to see a doctor for a month or so . After stopping the tadalafil I reckon I got around 41% hearing back in left ear but it comes and goes.
        Busy Sept./Oct coming up with Rheumatology for my GCA and decision as to whether I can cease taking Methotrexate as I have not had a relapse for over twelve months . Cardiologist check up re lad stent, Ophthalmology check up regarding damage to eye from GCA and lastly PH doc with tests to see how I’m progressing on macitentan only.
        Hang on, then I have to see my tax accountant and be told the real bad news.
        Mate ,it’s  good to hear you are back home but don’t go trying out for the Paris Olympics in the back yard  just yet.

    • #31274
      Jen Cueva
      Keymaster

      G’Day, @terry, it was me, Jen, so you are good.

      It sounds like you are doing pretty well. I would say with no doc visits. But your Oct/Sept certainly sounds like you will be making up for lost time, huh?

      Interesting about the hearing relating to tadalafil. But grateful that you do have some of your hearing back. No relapses in 12 months. Do you think the reason could be Methotrexate?

      I am certain that you and your rheumatologist will make that call.

      Have you been out on the water lately? How’s your beautiful bride?

      Oh yes, the great tax struggle. You are not alone, my friend. Wishing you good luck that he doesn’t hit you too hard.

      Thanks for the good wishes; no Olympics for me anytime soon, hehe.

    • #31292
      Terry
      Participant

      The PH doc. advised  he had one other patient who experienced hearing loss when taking tadalafil . On reflection the hearing loss has been in the left ear which used to cause me trouble when flying ,you know not popping back to normal after landing .
      My breathing difficulties started around 8 months into reducing the Prednisone  when I was put on Methotrexate to help get off the Prednisone without GCA relapses.
      Both the PH doc.and Rheumatologist are wary of me being on the drug as seemingly its counter to pah treatment.

      Yep still sail once a week weather permitting and loving every minute.

      Now the boss is back on her clotting tabs after getting the second Astra jab things a looking up , hell I’m being kept on my toes so she must be getting better.
      Keep smiling and say hi (g’day) to everyone you pass on the street .

       

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