Patient and Family Care 2018-07-25T14:21:13+00:00

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  • Alex Joy
    Post count: 2
    #8165 |

    Good Evening !
    Hope all is well 💚
    I am a Resiratory Theraphy clinician and I would like to know as a health care provider the most significant needs of the patient, family and loved ones battling with Pulmonary Hypertension . My goal as a clinical is to be the best health care provider that I can possibly be . Gaining knowledge not only from text books but from a 1 on 1 encounter .
    Thank you so much for responding !

  • Ava
    Post count: 29

    Hi Alex,
    Thanks for stopping by!

    I think the biggest factor is letting patients’ families and the wider community know that just because a PH Patient may not ‘look sick’ it doesn’t mean they are well! I have been diagnosed with Idiopathic Pulmonary Arterial Hypertension and Right Heart Failure for 3 years now. I don’t require supplementary O2 and am on oral meds. I am 45 years old and look fit and healthy (I’m not overweight etc), so there is no obvious indicator that I have any health problems. Yet fatigue is a major issue for me – I have to take a LOT of rest breaks when I do things other people would consider ‘normal’. And it’s not just that I ‘feel tired’ – pushing myself when I am really fatigued puts me at risk of getting light-headed and fainting (due to lack of oxygen to the brain), or at a less extreme level, being unable to think clearly or being physically clumsy and accident-prone (also due to lack of oxygen).

    Like anyone, I have good and bad days, but I know that if I try and push too hard on bad days, it will make me worse over the next few days, which leads into a cycle until I’m too fatigued and unwell to do anything. Unfortunately, to a lot of people, this makes it appear that I am ‘lazy’ – and I’ve heard other PH Patients express the same problem.

    I keep a fairly strict routine which allows me to function reasonably normally, which is easier to do because I live alone. For example, I am always better in the mornings, so that is when I am most active and do chores like shopping or cleaning. I also prepare and eat my main meal in the middle of the day, because by evening I am far too tired to cook. Similarly, I always prepare extra meals and freeze them so no matter how tired I am (eg. After a morning out shopping) I always have something healthy – and quick – on hand. Patients may need help identifying ways to make changes to their pre-diagnosis routines – and as I mentioned, help in explaining to families why such changes are necessary.

    I tend to say that my day is ‘over’ by mid-afternoon. I often need a nap at that time, but some days it may just be that I am on the sofa reading, knitting, or watching mindless tv. And I will do very little activity from that point on. Simply because if I try and do more I am useless the next day.

    A FitBit (or similar) with a heart rate monitor is a useful tool in explaining to people why I get fatigued. I can do as few as 4 or 5 thousand steps in a day but my FitBit will show that I was ‘running’ (due to an elevated heart rate) for 8 or 10 or even 12 hours each day. Seeing that graph can sometimes help people to see that you aren’t ‘exaggerating’ or ‘being lazy’, but that your heart is actually working twice or three times harder than normal.

    Anyway, I hope that gives you something to think about. I’m sure others will have other experiences they can share.

    • Alex Joy
      Post count: 2

      Good Evening Ava !
      Thank you so much for responding ! You have definitely given me great insight and knowledge from a patients perspective and I appreciate you for that .
      One thing that I’ve notice that is common in individuals that are living with PH is that they don’t “appear to be sick “. Unfortunately people tend to judge others by what they see without any knowledge on what’s actually going on in their bodies and assuming that everything is okay because “they look normal“.

      As clinicians and students , we have to do a better job at informing our local communities about PH .

      People parish because of lack of knowledge , and I truly believe that if we take more time to educate those that may not know and help those individuals that live with this disease ( daily routines , home care etc ) over time we can see a much greater respect .

      Thanks again !

    • Mistylynn
      Post count: 4

      Hi Ava, thanks for sharing your story. I really needed that this afternoon. Two major differences I noted is that I am currently on oxygen 24/7 and morbidly obese, but your sharing your schedule really helped me. I’m pretty new to this and trying to understand how to make the most of my energy hour to hour and I think trying what you do might really help me. Even before diagnosis, I noticed that if I pushed hard for a day or an event then I would want to sleep for days after. I really need to start acknowledging my limits and trying new ways to cope. Again, thanks!

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