Pulmonary Hypertension

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Does anyone have a child or grand child born with PH? .

Does anyone have a child or grand child born with PH? .

He was born past due and weighed 12.7 pounds. He had low blood sugar. He was diagnosed later in the day and was transferred to a better hospital that could give him the medication he needed. Does anyone have experience with new born PH? Im worried he didnt get enough oxygen to his brain before they caught it.

Is anybody on Volibris - ambrisentan

Is anybody on Volibris - ambrisentan

My ph team are putting me on volibris because the pressure is to high in my right side of heart it is 64 but I also have fibrosis which is mild and stable and this tablet can flare up my fibrosis so not to keen to take, not sure what to do. Have been told I have to take a gamble as it can’t stay this high ? Any input would be grateful !

Is Tracleer available in Canada and covered under private drug plans?

Is Tracleer available in Canada and covered under private drug plans?

A myPHteam Member said:

Yes, Tracleer is available in Canada. I was on it but was switched to Volibris. While I was on it my Blue Cross Medavie would paid for it if my NS… read more

posted almost 2 years ago

I don’t understand PH. My husband had a liver transplant 7/16

I don’t understand PH. My husband had a liver transplant 7/16

Never had pressure before transplant. His pressure is 45 in right ventricle. I can explain all about transplant don’t understand PH. Thank you Susan Bleacher

A myPHteam Member said:

So sorry about your husband. Hope he is doing well. Our daughter was on a waiting list she didn't make it. Take care of each other and God Bless you… read more

posted 7 months ago

Has anyone tried stem cell therapy for PH?

Has anyone tried stem cell therapy for PH?

A myPHteam Member said:

My understanding is that they haven't gotten that far yet. Apparently there are companies out there who say they do them, with "some" success, I do not… read more

posted almost 2 years ago

I have IPAH and COPD but not related(?)

I have IPAH and COPD but not related(?)

I was diagnosed with SLEEP APNEA and IPAH but dr says the sleep apnea did not cause my PAH
How can he be so sure when its the only thing they picked up ??

A myPHteam Member said:

Is PAH related to Emphysema? Can Emphysema become PAH?

posted 4 months ago

Iloprost

Iloprost

anyone on iv iloprost. What are some of the side effects. My daughter has lost a lot of weight, loss of appetite and vomiting. She initially was doing ok - after a few months, lost a lot of weight and feels extremely tired.

A myPHteam Member said:

In sorry

posted over 1 year ago

Does blood thinning drugs make your energy level low..?

Does blood thinning drugs make your energy level low..?

I was on two different types of blood thinner,warfarin for about 4 days,but because of where I live,the monitoring was a problem,so the doctor switched me to xarelto,I was diagnosed with Afib,and needed to keep my blood at a certain level..both blood thinner drugs made me so sick and exhausted,I couldn't even get out of bed..I stopped taking xarelto and put myself on low dose aspirin..today I have a bit of energy to finish filling out My PH..

A myPHteam Member said:

I have been on Xarelto since it became available and have never had a problem with it causing low energy, in fact I have never had any problems with it.… read more

posted about 1 year ago
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