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  • after a couple of days on it i am able to feel alive – and am capable of having more energy, etc. right now i am on 3 a day going on down was on the 4 a day..not experiencing any side effects to speak of at this point. i wish it didn’t have a negative side to it.

  • will get a confirmation on Tuesday after the doppler.. Then will ask my advanced cardio doc for referral to vascular – no doubt will be at Hackensack University Hospital….not looking forward tho on a first name basis with all the valet parkers there

    • Good luck Rosemary, we will be thinking of you and sending you good thoughts. I hope they can give you some answers. I know finding answers can be both a relief and seem like “another thing to add to the list”. I love when the valet guys recognize me! They know right away that I need the wheelchair with the oxygen:)

  • Rosemary Martin posted a new activity comment 1 year, 7 months ago

    my pulmonologist arranged for me to have a doppler – will do so Tuesday afternoon to see if it is truly vascular. not looking forward to adding another doctor to the mix

    • Hi Rosemary,
      I hope your vascular doctor is well versed in PH and that yiu get some answers! They did a study fir me with a doppler on my legs after exercising and saw the difference in pressures in my legs and blood flow after exercise. It was pretty interesting. They did this because of my leg weakness.

  • sometime ago we had discussed the swelling of our feet and the rednes encompassing our foot. I went to a dermatologist last month who took a culture – she didn’t buy that it was a product of the feet swelling, etc. I had my followup today..culture was negative. Today she took a biopsy. Now this gets interesting she rubbed the redness and it…[Read more]

    • HI Rosemary,
      Thank you for this update. My dermatologist said it is vascular for me too and without the proper oxygen and blood flow the redness can happen. Rubbing it would increase the circulation in that area temporarily which is probably why you noticed a change. I’m interested in hearing more about their thoughts. Does it cause pain for you…[Read more]

      • my pulmonologist arranged for me to have a doppler – will do so Tuesday afternoon to see if it is truly vascular. not looking forward to adding another doctor to the mix

        • Hi Rosemary,
          I hope your vascular doctor is well versed in PH and that yiu get some answers! They did a study fir me with a doppler on my legs after exercising and saw the difference in pressures in my legs and blood flow after exercise. It was pretty interesting. They did this because of my leg weakness.

  • i have attributed my sometimes Lauren Bacall voice to inhaler and nebulizer use. It is not always there but it can come and go.

  • wow…glad you got it figured out . we should all read all of the literature on our drugs. I usually read only so far – or check it out if there is some sort of issue.

  • Rosemary Martin posted a new activity comment 1 year, 9 months ago

    they certainly did help with the ankle cramps

  • blood work showed high levels of salt. I confessed to my treatment of the ankle cramps with pickles. Big no, big no. I suggested Gatorade. Never full of salt.
    At any rate today and tomorrow i am to take 60 mg of the toresemide. After that 30mgs a day. More blood work to be done on Monday. Mentioned a whole bunch of stuff i shouldn’t be eating…[Read more]

    • Did pickles actually help with ankle cramps? They are my weakness! Also…Hot Cheetos.

    • Sometimes my body CRAVES pickles lol! Especially around my period time ! That and ice cream, even one right after the other hahahaha. Gross I know ! … But Rosemary, I’m sorry that they found such high levels. Have you been eating other things with hidden salt in it or was it the added sodium that you think set it off? I hate that our food has to…[Read more]

  • i do drink a lot of water but not enough. i go for blood work again tomorrow..will see what this shows..thinking the cramps could also come from dehydration.

  • my journey started with my pulmonary doctor – he sent me for tests – showed on echo – i went to a cardiologist who sent me to a specialists who deals with PH.

  • last appointment Doctor has me doing the 30 torsemide M – W – F – 20 on the other days along with sporanactone. Was doing ok – when suddenly feet began to swell again..They were perfect for a few weeks but rash was still there. I have terrific ankle cramps several times in the course of the night. I read that eating a pickle would help. I did…[Read more]

  • had my cardio appt yesterday…blood tests showed dehydration. now back to 30 mgs of teremeside (sp) M – T- W – in between 20 mgs. along with spironolactone – btw will be 3 weeks tomorrow that my feet are no longer swollen which he attributes to my overall feeling of well being – still red tho…blood work every 2 weeks still on the digoxin as well.

  • Rosemary Martin posted a new activity comment 1 year, 10 months ago

    last night..got into bed had the black box, the cannula etc. wires crossing taped on the floor went to sleep and then the alarm started…seems that the cord that was charging the black box must have come out as there was no charge left in the box. i got up and rehooked myself to old faithful. I never appreciated my concentrator more than i…[Read more]

  • Rosemary Martin posted a new activity comment 1 year, 10 months ago

    yes, whole night with it on..will see what happens tonight..trying to keep records of my numbers with it.

    • You’re doing an excellent job! Keep us updated.

      • last night..got into bed had the black box, the cannula etc. wires crossing taped on the floor went to sleep and then the alarm started…seems that the cord that was charging the black box must have come out as there was no charge left in the box. i got up and rehooked myself to old faithful. I never appreciated my concentrator more than i…[Read more]

  • therapist showed up at 8PM last night – bringing the correct size cannula. However, at first attempt the smaller size would not fit into where it was supposed to go. i then found out the unit i have is a test for improvements. It is not the original NIOV etc. at any rate she found the right one in her truck. i have to have it hanging behind…[Read more]

    • Was this your first night using it correctly? Sounds exhausting! I hope you’ll see improvement once you’ve settled into the routine. Definitely hoping it helps rather than drives you mad!

      • yes, whole night with it on..will see what happens tonight..trying to keep records of my numbers with it.

        • You’re doing an excellent job! Keep us updated.

          • last night..got into bed had the black box, the cannula etc. wires crossing taped on the floor went to sleep and then the alarm started…seems that the cord that was charging the black box must have come out as there was no charge left in the box. i got up and rehooked myself to old faithful. I never appreciated my concentrator more than i…[Read more]

  • the company had called last week to reschedule an appointment for late yesterday afternoon to bring the correct size cannula and to check me out. They never showed. Said they called..It is now on again for today. At this point , i cannot rely on their customer service at all. It is bothering me if i were ever to become dependent on that…[Read more]

    • Rosemary,
      I’m glad you have a backup in the process but I’m so sorry you are dealing with the frustrations of a company being hard to communicate with. I’ve had my share of running around in circles with oxygen companies or equipment companies and sometimes it takes just being overly pushy and persistent (which most days i don’t even have the…[Read more]

  • Rosemary Martin posted a new activity comment 1 year, 10 months ago

    day 2 – no one called for followup – i turned machines back on was sitting at computer things were going well i- then a short beep beep coming out of the little guy low PIP – so i looked it online – i don’ now how to correct. i moved the concentrator numbers up and down – then i discovered that one of the possible causes is an ill fitting…[Read more]

    • Rosemary,
      It is so frustrating when our equipment prevents us from getting a good night sleep. I hope they can get the right size for you and that it will be a better fit and won’t disrupt your sleep as much. Keep us posted on how it is going.

  • They delivered my NIOV late yesterday afternoon. The box cord goes directly into your existing concentrator. Along with that comes the small unit that goes in a sling to be carried. Lots of wires – hose is too thick to fit under my bathroom door. I was doing ok with the guy there (they will call again when i get home from work to see how it…[Read more]

    • Rosemary, thank you for keeping us updated on your journey with the NIOV. I wonder why the alarm sounded. Hopefully you can get the settings tailored to your needs so it doesn’t go above 6 liters, and doesn’t alarm if you lower it. I’ve read a bit more about this system (linked above – let me know if I’m referencing the wrong NIOV), and it’s…[Read more]

    • day 2 – no one called for followup – i turned machines back on was sitting at computer things were going well i- then a short beep beep coming out of the little guy low PIP – so i looked it online – i don’ now how to correct. i moved the concentrator numbers up and down – then i discovered that one of the possible causes is an ill fitting…[Read more]

      • Rosemary,
        It is so frustrating when our equipment prevents us from getting a good night sleep. I hope they can get the right size for you and that it will be a better fit and won’t disrupt your sleep as much. Keep us posted on how it is going.

  • my pulmonary is scheduled at 3 months. however, that gets cancelled when i go for not feeling well, etc. Lately, no idea when next scheduled is.

    cardio has upped it..in the beginning it was like 3 months..new it is monthly..and i can wait 2 weeks now for new blood work. starting to get bruised from this weekly stuff..will see cardio in 2 weeks

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