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Hello everyone!
So happy to be here.
I know first hand how wonderful it is to have the support of a forum like this.
I joined a forum to help me quit smoking 10 years ago and it helped me tremendously to learn from others about their journey and to know the ups and downs I might face.
I am so grateful to have found a place to communicate with people who are going through similar challenges.
I was diagnosed in July.
I had never even heard of pulmonary hypertension before that day.
Since then I have learned a lot about how I got to this place.
It was brought on by sleep apnea, which I didn’t even know I had.
I thought that even though I hadn’t smoked in years that my shortness of breath at night was payment for sins of the past.
Turns out it was sleep apnea and if I hadn’t been so stubborn and brought it up with a doctor I might have known that.
Now I have right sided heart failure and pulmonary hypertension.
I am on oxygen 24/7 and use a cpap at night.
I now take a handful of pills each morning and several at night.
I am struggling to keep working at my job and can feel the effects it has on my health when I get too tired.
I am searching for some answers and maybe some suggestions as I go through this journey.
But I am also here because I recognize the power of having friendships with people who can offer a smile or a pat on the back when needed and that may need that for themselves and hopefully I could provide that.
Thank you so much for being here.
I will make good use of this forum.
Sorry I rambled a bit. -
6 Replies
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Welcome, Susi,
First off, congrats on quitting smoking. I am sorry to hear that you now have sleep apnea and PH. It sounds like you are still fairly new to PH. Do you see any improvements with wearing your mask at night and your medications?I know some PH patients do continue to work, some cannot, others work part-time. If your current job is physically demanding, I would think of looking for other places to work that may fit better with your schedule and health.
You are so kind; yes, we all need places like this to share. I like to say we share the good, the bad, and the ugly, lol.
Please do ask any questions, and thanks for jumping right in. I am sending you smiles and a pat on the back from Texas.
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Thank you Jen.
I am seeing a big improvement in my sleep with the mask.
I can actually sleep on my back again.
For a long time I had to sleep sitting up in a recliner.
I appreciate your welcome. -
Hi Susi,
So glad you found this forum it really is a great support and I have learned so much through others on the forum. In the past I have stayed away from groups like this – not sure why, maybe I thought I would be judged or did not want to get too close. I was so wrong. There is no judging only support and caring and yes, you do get close and that means you can be vulnerable and that is okay!Like you I had been a heavy smoker and assumed as my doctors did, I was paying the price. It took several years to finally be diagnosed with PAH and Sclaraderma. It was not my years of smoking – my lungs were clear (to everyone’s amazement) and my heart strong.
I searched for the right team and have been on aggressive meds that have worked! For someone who never took any medication except maybe for a headache. I now have AM/NOON/PM pill boxes. Well can’t argue when they work.
PH/PAH really zaps your energy and it certainly has slowed me down. Fortunately I am retired (76) but I did do a lot of volunteer work. I realize I am unable to keep doing so I make sure I stop around 3 or 4 pm and know I am really only good for a few hours and not every day.
I hope you can find a way to still work, but dial it back so you can let yourself rest.
Again, so glad to hear from you. Please take very good care and whenever you need some pats, looking for answers or just a big air hug ????.
Carol
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@s-steppins I am so sorry that you were diagnosed with PH but so happy you found us. As @cdvol3gmail mentioned, we all have a strong bond here. No one is judgmental, only supportive. We might not share the same experiences but we all understand the struggle. Never hesitate to ask questions, share your experience or vent whenever you need to. Welcome!
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Thank you all very much.
What a nice welcome.
I am already learning from this website. -
Excellent, @s-steppins, this is why we are here. We want to support others on their PH journey. So, thanks for the kind words. I look forward to reading more from you, too.
Have you been in other online PH groups?
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