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    • #13143
      rosemary martin
      Participant

      Yesterday, was weekly blood test – Showed slight decline in potassium – now i am to eat a banana every day. Everything else remains the same. I asked if i could increase the water pills as my feet are still swollen when i get up in the morning. No other changes were prescribed other than the banana. Tuesday i go for the blood gas, chest xray and pft at the hospital. So far this is what i need to see if medicare will pay for the NIVU – After the hospital have a meeting with the NIVU people at pulmonary’s office.

      Keep smiling,

    • #13005
      rosemary martin
      Participant

      btw medicare has now approved it…but i have to go thru rigid testing to qualify.

    • #13003
      rosemary martin
      Participant

      Brittany – i am a WHO 3 – and there isnt any medicine specifically for PH for my group. Cardio feels i have to stay above 90 on oximeter..Pulmonary thinks this will help. best i can say at this point til i get all the facts …it is a non invasive ventilator. similar i guess to the trilogy. communitysurgical.com/ventilation

    • #12984
      rosemary martin
      Participant

      once a month was wishful thinking..it is now once a week at HUMC heart center..opens at 7:30 will be there b4 i go to work.
      also saw pulmonary yesterday. that i put under oxygen

    • #12983
      rosemary martin
      Participant

      here is the latest in my sage – as of this morning am taking torsemide instead of the lasix.. 30 mgs. necessitates me splitting a pill to make 30..seems to be working much better – also gave me spironolactone – now i need blood work once a month. told me not to eat bananas and celery which i was doing. my last test last week showed up a bit on the potassium. who knew that xtra potassium could be a bad thing..

    • #12982
      rosemary martin
      Participant

      not quite on topic but an offshoot….My pulmonary doctor wants me to get NIOV. Have no idea how it will work..it is said to enhance oxygen use. Anyone use i?

    • #12750
      rosemary martin
      Participant

      For the past 3 weeks i have spiraled downhill. Since i still work, i spend my weekends on the couch with my feet elevated hoping to reduce the swelling and the rash. I used to go out to dinner at least once a weekend. Of course, i am older than dirt – i just hate to admit that my life as i once knew it..is over.

    • #12744
      rosemary martin
      Participant

      Beverly how was the pressure in the heart determined?

    • #12710
      rosemary martin
      Participant

      No thought of going to the beach on a sunny day. However, I am determined to get into the pool. This is a community pool so i can not run hose lines for people to trip over. The best idea I’ve had so far is to use the portable (which only goes to 4 not continuous) in trouble already in a 6 pack cooler and have it float along with me as i try to exercise with a noodle. The past few weekends (i still work) i have done nothing buy lay on the couch with my feet up.

    • #12665
      rosemary martin
      Participant

      i was beginning to get a bit frightened….was thinking celulitis? or worse? Do you do anything for it?

    • #12661
      rosemary martin
      Participant

      along with the swollen feet, does your feet turn red and rashy looking?

    • #12482
      rosemary martin
      Participant

      Medicare pays for my portable and my concentrator – I have Inogen -i had to be grandfathered in because NJ was no longer covering Inogen. Go figure – my portable goes up to 4 – they do have a 5 liter one…4 liters is not enough for me will get doctor to send another RX to get the 5.. I am trying to ascertain if one of the local carriers here have similar products. I am resisting tanks as i am still working..hard enough with a hose running down the hallway here…hah

    • #12481
      rosemary martin
      Participant

      Rick, have you tried calling the pulmonologist office and pleading with them to get you in earlier or to see if they could alert you if they have had a cancellation? Did one of your doctor’s recommend this doctor? If so, perhaps they could make a call for you.

    • #12479
      rosemary martin
      Participant

      I have nothing to add; but want to thank you all for your sharing.

    • #13200
      rosemary martin
      Participant

      yesterday did the testing at the hospital…chest xray – long PFT – blood gas – then went to meet the people from NUIVU. will take a few days to see if i qualify – however, i did a trial with the machine…makes no sense to me – the higher she put it the lower my numbers got????? the item that looks like a radio will go on any oxy concentrator. this will fill tanks, etc. wondering if i could shoulder a 6 lb tank..the smaller device is what will connect to the tanks and give you more oxy..if i qualify they will give me the radio device – no tanks on this trial – to see if connected to concentrator if it boosts me. can’t immagine what my PH specialist would say if i reach only 80 on pulse oxy..i would think it could be very beneficial to those who run around with tanks..

      waiting to see what my pulmonary doc has to say…he wasn’t there yesterday for this meeting

      will keep you informed

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