Just diagnosed with a terminal illness

[thisismethen]

A few weeks ago I was diagnosed with PAH. I'm 38. Although it is treatable it is terminal. Google says I have 5-7 years but my doctors say maybe over 20 years, but they also don't seem to want to talk about prognosis, just keep telling me how treatable this is and how my life can go back to normal now I am medicated with a few changes. But I'm left wondering how long I will feel this normal for before the medication loses its effectiveness, or how long I have until I am stuck in my house with oxygen.

I have been taking each day as it comes and taking comfort in the fact I feel ok now on my medication, I can breathe and I am able to be more active than I was before my diagnosis. But I can't help my thoughts drifting to the word terminal. I am terminally ill and I know what is going to kill me in the end. I have two little boys to live for and I will do that as best as I can, but how long can I live happily pretending that I don't know the horrible end I'm going to have - the medications, the inability to get around independently, and my eventual early death?

I'm not sure what my question is...does anyone have experience of this disease? How do others cope knowing they are terminally ill but currently feel ok?

My mum has PAH, diagnosed for twenty years and in hindsight obvious before diagnosis. My mum is not a tough, battling, robust sort yet she is still here in her late seventies and has only recently depended on oxygen at night. My understanding is that drug advances are continuing and that possibility stem cell treatments might be an option in the future. Of course your diagnosis is a horrible shock and very worrying if you have young children but I hope others can come on and say it’s certainly not game over and that you will have a good quality of life.

No experience sorry @thisismethen just wanted to offer a virtual handhold and reiterate what you already know, you need to listen to your Doctors and ignore google

Thank you so much for your replies. It means a lot.

It is amazing to hear that

Sorry, I posted too soon.

@Colinthedaxi thank you for sharing about your mum. That gives me so much hope! I aim to do what I can so that I have a similar future...

I appreciate you both posting so much 🙏

I have no experience either and it must be a real stress for you. On the other hand if the doctors are saying you could have 20 years, that is so much time for new treatments to be available and prolong your life into 20 plus years!

No.experience of what you are going through,but wanted to send you a handhold. Hope u can find joy in every day. Take care.

I don't have the same illness as you but buried my mother from dilated cardiomyopathy 2 years ago and a year ago found out I inherited it from her. Like you, Google says about 5 years to live and my cardiologist won't discuss this, says medication is amazing and live my life! This was so hard to accept at first and seeing how my mother suffered and finally died is forever etched in my mind. But the medication I am on is helping so much; I feel so much better from taking it. I am 50 and my children are teenagers and young adults but I still fear dying and not seeing them grow up even more. But the feeling of despair has lessened with time. I have my moments/days where I feel depressed and sad and the diagnosis is never far from my thoughts. But I can't let it 'rule' the rest of my life. I am alive at the moment and nobody knows what's around the corner in life. Be gentle and kind to yourself and take each day as it comes. Your doctor is correct, medical improvements are coming through on a daily basis and you are already benefiting from the medication you are taking. Give yourself time to grieve the diagnosis (that's what it felt like to me) and then try and be positive to live your life despite your illness and not with it (that's how I cope).

Get in touch with the Pulmonary Hypertension Association. They will be able to share a lot of experience and put you in touch with others who have it. (I don't but know some people who do).

https://www.phauk.org/

I'm very sorry to hear of your diagnosis OP, but it seems it will be manageable for a good while, possibly decades.

Once the initial shock has passed, concentrate on living life to its fullest and at the same time taking care of your condition.

I can see it must be a shock, but it sounds like you will be with us for a good while longer, so you can enjoy more inflation, taxation, useless politicians, pointless wars, you know, all the good stuff.