January 2, 2021 at 8:11 pm #28505Becca mParticipant
I haven’t introduced myself yet. This has been a hell of a journey which started with being misdiagnosed for a year, got a cat scan June 20, Disgnosed with advanced sarcoidosis June 20, started prednisone but no improvement, then had to manipulate my primary to send me for echo because no believed me I couldn’t breathe, echo showed ph in aug 20, pulmonologist told me “I’ll tel you when to worry about ph”, and I self referred to the ph clinic in Denver. Denver dr did another echo which showed slightly enlarged right heart and ph is worse with pressures over 54. Long story short a month into testing to determine type of ph including lft vq scan etc I come up pregnant. I’ve been told by 5 doctors to terminate because I only have a 50% chance of survival. Anyone been through this? I’ve wanted to be a mom and I never thought it would happen. I was not trying. I’m 35, I was told 4 years ago I had no eggs left. This is my worst nightmare. I could really use some kind words or advice.
January 4, 2021 at 2:59 pm #28510Jen CuevaKeymaster
Hi @rmance85, welcome to the forums. This must be a tough decision educated as not to get pregnant. My heart aches for you. You mention that your 5 doctors say not to keep it. They should have your best interesting mind, h but it would be best if you also felt like you trust them enough.
I was diagnosed almost 16 years ago. At that time and continuously, I am reminmded that pregnancy is not an option. Each person is different, so your medical team would be the best to get accurate information from. Maybe they can make a Pros and Cons list for you. It is not only not safe for you; it is unsafe for the baby, too.
I am sending you a big hug from Texas. I wish that I knew what to say or do to make this a bit easier to do. It’s overwhelming and heartbreaking, I am sure. Please do keep us posted.
January 4, 2021 at 4:20 pm #28515GabrielaParticipant
Hello Becca!! I’m so sorry about the whole thing. First welcome to PAH world i guess? and second I’m sorry again but European and American guidelines advise against pregnancy because of the strain it would put in your heart, in few words. It would be great if you could find a physician that explains to you step by step every change in pregnancy and hemodynamics and why it’s so risky. Hopefully you will be able to find someone you truste and can help you with this difficult times.
January 4, 2021 at 4:55 pm #28517Colleen SteeleKeymaster
@rmance85 my heart goes out to you. I teared up reading this. Being diagnosed with PH is a horrible shock but finding out that you are also finding out that you are pregnant…I can’t imagine.
I searched a little and found two articles that might help you. One is about a young mother published by the PH Association. I don’t this person but maybe you can find a way to contact her through them.
The other article was published by PH News.
I wish I could help you more than this. You will remain in my thoughts and prayers.
January 4, 2021 at 8:37 pm #28520Becca mParticipant
Thank you for sharing the success story. I’ve only ever seen one other. The part I’m struggling with is not knowing anyone that has gone through this. I don’t want to die but I don’t want to take a life. I’m 8 weeks plus. My baby is nearly fully formed. I’ve heard of a woman who had mild ph and had no negative effects from pregnancy or birth. It’s a gamble. I’m still in need of a right heart cath and biopsies. Each dr has an opinion. One told me he thinks I would survive because my heart survived when I gave birth to my son 8 years ago. I’m not a socia media person so I don’t even know where to find support. Thank you all for relying. I’m feeling really alone.
January 5, 2021 at 10:12 am #28526Jen CuevaKeymaster
Hi @rmance85, I am so sorry. This pulls at my heartstrings each time I read this. You were given some excellent information from @gabyghuerta and @colleensteele. I hope you can talk with your medical team again and develop a plan as time moves along here. Do you have a “gut” feeling? I am happy that you did not have any complications with your son.
I am wrapping my arms around you with hugs from Texas.
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