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Wow, your pre diagnosis story is a lot like mine. I had been complaining for years about my shortness of breath and was ignored and placated, so I blamed myself. When I finally went into full blown heart failure it was too far advanced for just oral medication. In the 6 years since diagnosis I’m on o2 24/7 and on 3 different medications one which is IV and I’ve been on death’s door 3 times. Please remember to advocate for yourself if you feel your being dismissed get a 2nd opinion.

Very good video.

I was diagnosed at age 11. I’m 52 now and my heart has normal function. I’m on Veletri and tracleer. Sotatercept was released in March in USA. The first drug that treats the disease and not just symptoms. I hope to start it this year. The side affects of my current meds are dibilatating. My life expectancy was age 18.

I think Cereno Scientific drug cs1 is much better❤

I think Cereno Scientific drug cs1 will fix this❤❤❤

I learned you are very confused

Thanks for sharing this ..! I’ve also been diagnosed with…!

Hello Kate, I have just watched your video. A lot of what you said resonated with myself. I am still coming to terms with having PH. I do not push myself physically, and take one day at a time. Take care.

This see seems much better than the one my doctor has. They make me put this band with a probe on my head and then we walk until a set time. If I can’t finish, then I have to start again. Which makes zero sense because then I try to control my pace so I can finish. Because if you have PPH you already have limited exercise ability 🤷🏼‍♀️🤦‍♀️

I hope you are still ok Scott. I really do. I have pulmonary hypertension and finding out can be a shock. The first time I found out I was worried about not being around to see my kids grow up. I hope you are still going strong.

this is something i will have a converssatioon with my specialists about

Good on you and thank you. CTEPH patient here, 1yr post PTE. Doing much better now. Love & good health to all PH patients and care teams worldwide.🤗🫁🫀

I am sick with pulmonary artery hypertension. Can I come to UK to get treatment? I am from Algeria 🙏

Legends! 👌🏽

fantastic

I hope you are doing better 😞🙏I been having shortness of breath for like 5 months ago I first went to the emergency room and an ecg and chest X-rays and on my diagnosis said tachycardia right heart enlargement chronic pulmonary artery hypertension to be honest I’m scared

I was diagnosed on august 2023 with this terrible disease at the ER 😞😪I’m scared

I been out of breath for the last 5 months my belly is swollen like if I’m 7 months pregnant 😞my legs my face are also retaining lots of fluid my husband took me to the emergency room on august of this year and that day I was diagnosed with tachycardia right enlargement of the heart chronic pulmonary artery hypertension and on October I was also diagnosed with Non alcoholic fatty liver disease I’m so scared 😟

I hope you start feeling better ❤🙏I been diagnosed with chronic pulmonary artery hypertension at the ER I will demand a right heart cath this time I already had a left heart cath a week ago for a blockage in my heart i been having difficulty breathing and I’m scared

Oh, Carole, this was my story too: Diagnosed with asthma when I was 50, and put on asthma medication that didn't quite work. 10 years later, I went to a lung specialist and said that I felt I was getting enough oxygen when I breathed! She listened to me, and with tests, was able to diagnose it as IPAH. Things have been so much better, these last 7 years, with the specific PH medications that I am on. Thank you for sharing your story. Much love to you ♥♥♥

Annoying that’s my word as someone with PH its annoying. 💜

Sending all the wishes in the world and the best of luck!

❤❤ beautiful you my dear friend 💖💖💖💖💖💖💖💖💖💖

❤❤

I live with this every day I went for 2 and a half years with nobody listening to me , I end up in ICU before being diagnosed with PH I am now on oxygen 24 hours a day and use a wheelchair out of the house. It is a complete life changing disease of which there is still little understanding, I am still trying to come to terms with it all, however I now have an excellent team of experts around me but nobody knows what the future holds. Good luck to you Julie x

Hi does anybody know with this drug,will dr allow patient to get pregnant?i was diagnosed when i was 25 years old but not im already 32 and wanting to get pregnant

Excellent presentation! Thank you

I was diagnosed this year with PAH and my life changed forever, I though 6 months was harsh but you say 8 years? I can't even imagine a life with these horrible symptoms for 8 years. sorry your symptoms are still harsh. are you doing Tyvaso? you can pro with echo eamination,CT etc....

Hi I have pah I'm on 4 medicines for pah altogether I take 17 pills a day how are you doing now?

Ive got a 10month old daughter in very bad condition we must try this before its too late is it possible ????......

interesting

Hope it’s ok I posted this on the pah support group. Having just been diagnosed at the start of the year this is exciting news

Thanks so much , my wife watched this and has started walking as an exercise again. She was previously afraid to do so. She is feeling the benefits.

Thank you My husband of 30 yrs has this and we are young..I went on goggle and got scared with the life expectancy numbers..How long have you had this if you don’t mind me asking

Thank you for these great tips! ❤

I am diagnosed really fast, I'm still doing many things just can't hurry. Using stairs also tiring but 5 minutes later I'm fine. The doctors I met they give me sign i'm still fine. There was no "scary words" maybe because I'm still look okay. Just feel hurt smtimes

Diagnosed last year but I felt the symptoms about 10 years ago, I also have ASD. Just accept it. I feel more ease now. Life still go on, but now I just take it slow every single step. One I feel rush, then it getting worse

They always try to say that most any problem is fro anxiety or just being unfit, if you are a woman…not the way most men are treated

Please let me know about pregnancy with PAH (mild to sivere)

Super explanation

This is excellent! Thank you so much. I found it very helpful, particularly differentiating activity and exercise. Also the advice of varying walking speeds rather than stopping to ease the breathing. We are all different, as you so clearly explain, so we gently learn our own limits and scope. My activities, exercise capacity & quality of life have vastly improved since beginning to include exercise a year ago. From a Walking 6 minute result of 99 I have gradually improved to 275 & fully expect it to be a higher number on the next clinic visit! Thank you for your work and encouragement!

Thank you so much Carol, this has been extremely useful and interesting!! ❤

I hope you are doing well.💐

🔥 Promo`SM!!

How do I get onto a trial

Will there be any side effects?

I hope someone has taken over from Dr Morells research as he was so valuable to finding a cure for Ph!

I have ASD, ASD and PH are like best friend. I got the asd diagnosed and PH at the same time, no need long time. But i already felt it about 7 years ago bcs when i feel tired/ less breath, i think i need a moment to break then i back to normal and think i'm getting older, it's normal right when u are getting older you are easily tired

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Shame on that benefits system 🤔