Time Frames

What considers a disease to be fatal or terminally?

A friend of mine, who is also suffering from Pulmonary Hypertension, and I were discussing a controversial topic the other day.

What considers a disease to be fatal and terminally?

Just to explain what I am up to I need to go far afield.

My friend was diagnosed in spring of 2013 and her doctors predicted that she probably wouldn't witness Christmas that same year because of the severeness of her disease.

She has an amazing doctor. Well, most of the PH doctors are truly, really special. They have this empathy many other physicians have lost.

Back to my friend … she took part in a study and received a certain medication in a very short titration phase and this medication literally saved her ass.

She was lucky to experience Christmas of 2013. And she even celebrated Christmas 2014, 2015, 2016 and 2017 also.

She is living with PH for 5 years now, although she was given the worst prospects and was doomed.

So this brings up a scientific assessment and a pragmatic question:

1. SCIENTIFIC: Even doctors can't predict or rate the severeness of the disease. Every patient is different, there are no such things as rules for everyone, medication for everyone or a general outlook. Every person is different and needs her/his personal mix of medication & dosis to be treated.
   Which makes things a lot more complicated as doctors need to juggle with meds and doses and this takes up a lot of time until every patient's individual therapy is found. And some patients are lacking this extra time. In reverse others, who were given only a short time to live are still around due to competent doctors, the perfect therapy and just pure luck.
2. PRAGMATIC: You tell others who are not familiar with PH that you are suffering from a fatal disease and that you are terminally ill. Do they expect you to die within a certain timeframe? Like with cancer patients, where the doctors often can considerably estimate way better how long a patient still has to live.
   How long is this timespan for someone suffering from PH? From which time on do others don't believe you anymore, cause „you are still around and alive“?
   Do they possibly think that you are actually exaggerating your condition to make them feel sorry for you?
     

To get back to the beginning of my blog and to the conversation I had with my friend, she told me, that at the beginning, shortly after she had been diagnosed with PH, she told her friends and relatives about her condition and that she was terminally ill.

Now she is joking, that sometimes she feels the need to say sorry to her friends that she is still around. She worries that some of them may think she is a liar and is only exaggerating.

So, do you understand what I mean? Being terminally ill and suffering from a fatal disease doesn't mean you only have to live days, weeks or months. Sometimes, when medication works good for you and you are lucky that maybe the size of the right ventricle is decreasing, you have a few more years on your bill. You never really know WHEN you have to die. It could be tomorrow but sometimes it can also be years away.

This disease is considered to be fatal and terminal because there is still no cure to heal it. All the medication we receive are only meant to make life more bearable and to increase the quality of life. Also, the amount of stays in hospital should be reduced due to the medication. The overall outlook is still the same.

Unless we don't get a lung (or sometimes even heart-lung) transplant we are cursed to die way earlier than a healthy person due to the fact that the heart will at some point fail.