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    • #31499
      Roger Bliss
      Participant

      I am having a tough time taking my Tyvaso on time……supposed to do it 4 times a day. I set my alarm on my phone when I am supposed to take it. It works out fine when I am home…..but……I am usually on the road and can’t stop when the alarm goes off. I shut the alarm off…..then forget to take it when I stop. If I hit the snooze on my alarm it goes off every 5 minutes and drives me nuts. There isn’t a way to extend the snooze to a longer time.

      I would appreciate any ideas or tricks you use to take your meds on time.

    • #31509
      Jen Cueva
      Keymaster

      Hi @wheeldog, this is an excellent question. I do use my phone alarms as I take meds 4 times per day. I can relate to hitting snooze and then forgetting. It drives my hubby nuts when he is home, LOL.

      I suggest adding another alarm about 30 mins after your original one, which will cover you for some time. That or add a time that you think will help. My default snooze setting is like 9 minutes.

      May I ask what phone that you have? There are a few thrid party apps that you can use to help with this snooze issue. I have not used any of these yet.

      The other suggestion I would think of is to figure out a schedule that works best for you. Is it possible to take it with you since you are driving most of the day? You have to space them out, but tweaking the schedule may help you during the workweek.

      I hope that others who use other systems work. I use a pillbox for my pills, so I know if I missed a dose. I know with Tyvaso; this is more complicated.

      Does anyone have any other suggestions for Roger?

      • #31531
        Roger Bliss
        Participant

        I have a Samsung 8 rugged Android. The default snooze is 5 min. If you can change the default…..I haven’t been able to figure it out. Might try setting several 15 min apart. If you know of some apps for my phone let me know.

        Can’t set a schedule as I don’t have one for work. I have to be at work anytime between 7 am to 10 am depending on what the contractor needs. Naturally, if I don’t have to be to work till 10……I sleep in.;-) I set my alarms for every 4 hours after I take my first dose.

        • #31554
          Colleen Steele
          Keymaster

          @wheeldog I have a Galaxy S9 and I think mine only allows a 5 minute snooze as well. Setting 15 minutes apart sounds like a good idea except it will become a pain after you have taken your meds and keeps alarming. What about getting a kitchen (egg) timer? Not as easy to carry around though.

    • #31547
      Jen Cueva
      Keymaster

      Hey @wheeldog, I get it about your work schedule. I am happy to hear that you will sleep in if possible.

      I am not familiar with Samsung and Android, but I found this to see if this may help on your phone. If not, I am hopeful that other Android users can assist you here.

      If you are more like me,You Tube is more helpful. See if this helps.

      • #31562
        Roger Bliss
        Participant

        I checked out you link…..thanks. The info was over my head. Gonna have to let my wife figure it out. If she can do it i am sure one of the kids in the neighborhood can figure it out.LOL

    • #31586
      Jen Cueva
      Keymaster

      Oh no, @wheeldog, I am sorry that those links were a bit confusing to follow. Like you, these little kids nowadays are much more tech-savvy than me.

      Was your wife able to help with that? Did y’all find a better solution? If so, let us know, as I am certain that others may need that tip, too.

      Those darn alarms can be annoying when needing them 3-5 times per day. Add in those snooze alarms, and as my hubby says, it will drive someone bonkers, LOL.

      But, we must find ways to make sure that we stay on our schedule. When I worked in a nursing home, we had a 1-hour window for all medications. Our med passes took 2 hours some mornings, depending on the unit.

      This is why we are out, and I did not bring my meds; I set a snooze about twice before setting a separate alarm between 30 mins and 1 hour. This is so when I get home if I forget, that alarm reminds me.

      • #31593
        Roger Bliss
        Participant

        I got my dump truck deal figured out……mostly. When the alarm goes off I unzip the bag that holds my deal. Then I keep my load count sheet on the seat next to it. So when I get back to the pit…..I notice the zipper open and take my meds. So far so good.

        Haven’t tried it in my pickup, but think when my alarm goes off I can put the bag someplace in the way. That way I will find a place to pull over when I get a chance. I will have to test that one to see how it works.

        • #31599
          Jen Cueva
          Keymaster

          Hey @wheeldog, I love your creativity! Using this bag with the zipper open is a great reminder to take your meds. I bet this will work as long as you can find a nice spot in your pick-up truck, too, maybe near something that you grab before you get out, in between the seats if you have a console, or something similar.

          How are you feeling this week? I do not doubt that you will figure something out. Hopefully, this new reminder will work, and you will start feeling some results soon.

          Again, thanks for sharing your creativity with us all.

        • #31604
          Roger Bliss
          Participant

          I am doing ok. Got an appointment on the 31st to see how much fluid is in my lung and if it needs to be drained.

          Hope you are feeling good too!

          Work is fairly slow.  State Fair started last Friday so we will get a lot of rain the next 3 weeks. It seems to happen that way every year. lol

        • #31605
          Colleen Steele
          Keymaster

          @wheeldog how are your lungs feeling? Are you thinking they will need to be drained?

          I haven’t been to our State Fair since my oldest was a Sophomore in HS. Are you going to venture out to it? There are 2 vendors I look for when I go…funnel cake and because I’m a big kid at heart – cotton candy.

          When I lived in WI corn on the cob was also something I really enjoyed at the fair. It was the best around!

        • #31610
          Roger Bliss
          Participant

          If I had to guess my lungs will probably need to be drained. When the pharmacy nurse was here she said my right lung wasn’t working as well as my left.  I’ll know for sure on the 31st when I visit my doctor.

          Doubt if we will go to the fair. Covid is making a comeback up here. My wife gets her first vaccine tomorrow, and with my CLL, it is questionable if the vaccine I got last winter, works on me. When we have gone in the past…..I head off to the oyster bar first……then the corn on the cob, seafood booth. I gotta be careful as I need to eat gluten free and don’t trust some of the food booths. I realy miss the Gyros!!! My wife hits the cream puff type stuff and other sweets. Bottom line is we both eat too much junk and feel like crap the next day.lol

        • #31616
          Colleen Steele
          Keymaster

          @wheeldog it’s hard to resist the not so good for you foods, at the state fairs. My husband and sons love Gyros but I’m not a fan. However, I am a HUGE seafood lover! In fact, when I visited my parents in NJ this month we had dinner at my all time favorite seafood restaurant at the shore. The wait was 2.5 hours so we sat on the pier and enjoyed fresh oysters and baked clams their bar. My youngest son, who went with me, felt like he had died and gone to heaven. I don’t even want to think about all the calories I consumed that day.

        • #31631
          Jen Cueva
          Keymaster

          Hey @wheeldog, I am getting hungry for more seafood as I read your food list from the state fair. I have never had seafood at a state fair. Like @colleensteele, I would go for cotton candy, but I enjoyed those red candy apples instead of funnel cakes.

          I love seafood, minus oysters, so that I would enjoy those foods, @wheeldog. I tend to like my seafood with a nice cold beer. I also enjoy gyros; only of the meat is sliced thinly. Yes, my hubby says I am a tad picky with my food, LOL

          Please keep us posted on your appointment tomorrow, the 31st. I am sending you extra positive thoughts and prayers your way.

        • #31653
          Roger Bliss
          Participant

          My wife had to go to Anchorage today, so she stopped by a specialty seafood place and got me a dozen of the good Alaska oysters. They were just like the ones at the fair…..yum.

          Doctors appointment went well. Gonna get my lung drained next Tuesday. The episode with my ambulance ride was a result of internal bleeding caused by my cancer meds. Took a blood test (for oncologist) yesterday and got the results today. Not any/much difference from when on cancer meds. Hopefully that will keep up. Got another appointment on the 14th to check the results from my lung juice. I have an appointment with my oncologist Sept 9th via video to confirm my interpretation of the blood test.LOL

        • #31659
          Jen Cueva
          Keymaster

          Hi @wheeldog, what a nice treat that your wife stopped to get you those Alaskan oysters. Do they have a less salty taste than the Texas gulf oysters? I am not a fan of oysters but have had some smoked oysters with several different toppings. It is mostly the texture that gets me. I have tried oysters in California at times, and they have a totally different taste, but that texture remains, lol.

          I am happy that your appointment went well for the most part—excellent news on the labs after stopping the cancer meds. It is also good to know the cause of that episode causing the ambulance ride. I hope and pray that this continues for you.

          I am sorry to hear about fluid in your lings again. We can only hope that the fluid that accumulates is much slower and longer between draining it with your lung function.

          Please keep us posted on that and your virtual call with the oncology team on the 9th.

          Enjoy those oysters. I have ceviche, shrimp, and grilled fish many times while in California. I enjoy seafood there and when here along the Gulf Coast, too.

        • #31670
          Colleen Steele
          Keymaster

          @wheeldog what a good wife you have, bringing you fresh oysters home! Now I’m craving them. @jenc I never noticed a difference in taste compared to location. Do you mean compared to how they are prepared?

          I’m sorry to hear that you have to endure another lung draining. You do feel better afterward though, right? Really happy for you that your recent labs showed good results and that you have answers regarding the event that led to an ambulance ride.

          Thank you for keeping us updated!

        • #31673
          Roger Bliss
          Participant

          Yes, I can breathe much better after they drain my lung. My lung getting used to it’s new found space makes me cough quite a bit. Doesn’t bother me that much, but if I go out in public, it freaks people out as they think I have covid.

        • #31677
          Jen Cueva
          Keymaster

          Hi @colleensteele, about the oysters, I mean the location determines the flavors most often. Some are saltier or smoother than others.

          Here is something that I found online that I wanted to share that may help explain what I am talking about. Here the oysters are most often eaten raw on the half shell, smoked, or fried. They smoked them and added many flavors and toppings. I hope that you enjoyed those fresh oysters, @wheeldog. What is your favorite way to eat them? Raw?

          BTW, is the area in Jersey where your parents are located safe in the flooding?

          I hope that they can get this under control, and you won’t need it as often. Do you think that coughing is more after your Tyvaso treatments? Or in general? @wheeldog, I bet that your breathing improves a bit after draining that extra fluid.

        • #31691
          Colleen Steele
          Keymaster

          @jenc my parents are fortunate in that their area seldom gets hit hard, but it is a mess in towns around them and the tri-cities. Major roadways are flooded really bad in parts of NJ and Philly, but that isn’t the worse of it. Multiple areas got hit by tornadoes. A friend asked on social media, “When did NJ turn into Kansas?”.

          One crossed a major road in the town I grew up in and two of my friends are lucky to still have their homes – their neighbors weren’t so lucky. So far I have only read about property damage but not loss of life. I pray that is the case.

    • #31700
      Jen Cueva
      Keymaster

      Oh, @colleensteele, I am happy to hear that your parents are safe. I am sorry to hear about your friends and their neighbors. These natural disasters certainly can come in and destroy things quickly.

      Yes, homes and items can be replaced. Yes, it is a horrible loss, but if they have their family and safe, that is most important. I can relate to these people and will keep them in my thoughts and prayers.

      Unfortunately, I heard a few deaths this morning. I’m unsure where that was since I only caught the end of the story as Manny was watching the morning news.

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