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Pulmonary Hypertension<br />Online Support Group Pulmonary Hypertension
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05/07/2008 08:54
jendelamer
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 I am 20 weeks pregnant at the moment. When I went for my first exam after finding out I was pregnant, my doctor heard an irregular heartbeat and sent me to a cardiologist. The cardiologist hooked me up to a machine and listened to my heart and said everything sounded normal, but she wanted me to have an echo just to be sure. The echo was taken at the end of february and showed that i have mild pulmonary hypertension. i go back in 2 weeks for my second echo. i am freaking out because i just found some articles that said the morbidity rate for pregnant women with this is 30-50%, and that women may live only 2-3 years after diagnosis. i have been a wreck! i am so scared now and no one can tell me anything helpful.
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05/07/2008 09:19
gevilido
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 First thing you need to do is stay calm and have a healhy baby. While you are at it go to a physician that specializes in PH. I am new to this group also so I don't know if they have the lists here but there is a web site called phcentral that is truthful and reliable. You can get info there on docs all around the world. Most of the info you get on the web is inaccurate. People are living long lives with PH and every case is different. I am not trying to give you false hopes just telling you the truth. My daughter was very sever when diagnosed. She was transplanted and is healthy now. Not everyone needs a transplant. There are medications that can be taken to control the PH. Unfortunately there is no cure. Please see a PH specialist so you get up to date diagnosis and care.

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05/07/2008 15:07
marci1477
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 hi, my name is marci. i have had ph for over four years. the first doctor i went to said i wouldn't make it past 2. i changed doctors and my spirits and i'm still kicking. i've been "dead" twice and recovered. you can read my story if you click on my name. gevilido is absolutely right!! you need to go to a ph specialist immediately. but here is the good news regular ph is caused by something else like sleep apnea and stuff...if you fix the problem then the ph wil go away. pph is primary ph which means that there is no known reason to have it and you are stuck with. testing will define your ph. i have pph because of family heredity. my aunt died at 32 from this over 25 years ago before all the new meds came out. my dad also has it now and he is still living. i can not get pregnant because of the severity of my disease. i was told either have it aborted or die so i'm very careful!! but that is probably not your case being that yours is described as mild...however the pregnancy could make your ph worse so please see a ph doc. soon. god bless always here if you need to know anything... marci


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05/07/2008 15:57
gevilido
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 Marci,

You are so right! I should have been clearer. When I said PH I was thinking PPH which is what my daughter had. There is no family history on either side of PH also. Her's was idiopathic. Good luck getting listed. Victoria had her transplant at Shands in Gainesville Florida and I can't say enough good things about them. I don't want it to sound like the end of all problems because as they say you exchange one set of problems for another but we wouldn't change a thing. Her life is "normal now".

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05/08/2008 07:11
marci1477
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 thank you, i spent 35 days in the hospital from oct-nov 07 and they said I would have to have a transplant within 6 months to a year or i would be dead. so we went to get listed and the second consult they said i was too healthy again for transplant!! thank the lord! there is a window of opportunity for transplants you don't want to be so sick that you can't get one and you don't want to be too healthy either. right now i'm perfectly fine staying on my flolan, Revatio and letaris regimen. i'm only 30 now with a 11 year old boy and 8 year old girl so i'm fighting like the dickens to stay alive. i'm glad to hear your daughter is doing well. transplant is a tricky thing. taking the rejection meds can be just as bad as ph for some so i'm glad it is working out. god bless you and your family...marci

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