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  • New member wondering when treatment should be started

    Posted by Mendo Bruce on July 21, 2020 at 7:27 pm

    Hi everyone,

    I am a new member with type 3 PH, PH as the result of a lung disease. In my case this is “endstage” emphysema. In 2015 I had a right heart cath that showed a mean PA pressure of 35, last year it was up to 43 and now it is 48. I will be starting treatment when my PH doctor gets back from vacation at the beginning of next month. Can treatments lower my mean pressure significantly?

    How far along were most of you when you began treatment?

    V.R. Peterson replied 3 years, 9 months ago 3 Members · 2 Replies
  • 2 Replies
  • jen-cueva

    Member
    July 22, 2020 at 12:17 pm

    Great question and topic, thanks @mendo-bruce. I was started on PH treatment within months. But many go years undiagnosed before they start treatment.

    Your team chooses each treatment based on other medical issues that you have and the stage of your PH. Some patients have seen a considerable drop in their mean pressures. My pressures were never sky-high. I know some have pressures about 100. My pressures were in the 40-50 range and now after about 15 years on PH treatments, about 38 on my last heart cath.

    Even when the pressures do not drop, some see improvements in PH symptoms. I was unable to walk a few steps from my couch to my bathroom with struggling before treatment. I also was on oxygen 24/7 for a while. I am now on it at night and with exertion. I also use it as needed while resting on my roughest days. Everyone is different, and we all respond differently.

    Do you have any questions about specific treatments?

    I can imagine you are excited as you know that you are starting some treatment, and I am hopeful that this helps your pressures and your lung function. Please do keep us posted.

  • V.R. Peterson

    Member
    July 23, 2020 at 9:36 pm

    @mendo-bruce, my son started treatment the week after he was diagnosed. It would’ve been the same week, but my son insisted on going back to work the rest of the week (so he could make arrangements for somebody to replace him in the grocery store’s meat department). The doctor was quite flabbergasted.

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