Op versoek het ek gister se plasing vry vertaal in Engels vir Asemdief se FB blad vir diegene wat dit wil deel vir Engelssprekendes. Verskoon die foute. Het dit goed gedink om dus ook hier te deel
In regards to a link that I've shared yesterday that stated:
"We have almost no data guiding doctors as to what the target oxygen level should be for patients with PAH. Medicare and Insurance have set a saturation level of below 88-89% for reimbursement.
This means that if you have an oxygen saturation above 89% then your insurance is not likely to pay for your oxygen therapy. This threshold is taken from a very old study involving patients with COPD (another type of chronic lung disease) and did not include patients with PAH. Nonetheless these are the rules and your doctor has no ability to change these guidelines".I would like to share the following thoughts with everyone involved to whatever extent you or a family member/ friend is affected by this outdated criteria by which specialists decide if you are allowed to receive supplemental oxygen or not.
When will specialists really begin to listen to their patients and do research outside the outdated guidelines for the use of O2, but rather do their research based on what the patients are experiencing?
Idiopathic PH patients need to be tested outside clinical hospitals too!
The holters used by specialists to monitor your heart's functioning over 24 hours or more are already well known. During sleep apnea tests and with stress echocardiography, your oxygen consumption and cardiac output are measured, but again - unfortunately in clinical hospital settings.
Imagine how much vital information can be collected for patients that experience worsening shortness of breath due to all the external influences in society and the environment.
What difference would it make if you have a device that monitors everything such as your location, the altitude, being in large shopping areas, busy city traffic, during forest fires, even church services and so much more!
If wearing a holter during these conditions then proves that your oxygen levels do noticeably deteriorate, it would mean considerable progress.
Imagine the wealth of data that could be collected if there were equipment available such as the fit bit watch with a built-in GPS that sends a report to your medical team with all the readings to monitor and document your breathing and O2 levels during these environmental influences.
Can you imagine what this could mean for thousands of other patients who are currently unable to receive supplement oxygen because the authorities are still making decisions about the use of 02 where your condition was not even taken into account?
I would like to conclude with the following: What difference could it make in the future if our medical students start to explore the world of patients in real life situations and maybe do a thesis following these patients disease progression.
Maybe then those who are currently fighting in the 02 war, can maintain a better quality of life with the help of supplementary oxygen as needed because of environmental influences beyond their control. Influences that are currently not even being considered!
