Has anyone ever heard of PULMONARY VENO-OCCLUSIVE DISEASE? If so, PLEASE HELP ME AND MY 5-YEAR-OLD DAUGHTER?
MimiSweetie
my daughter started having fainting spells about a month ago.never would i have dreamed that i would take her to the hospital and eventually find out that the doctors think that she would have this rare,horrible,life-threatening disease,they said that her only chance of survival is a bi-lateral lung transplant.If there are any doctors out there or any families willing to donate, my daughter weighs about 55 lbs and her blood type is B positive, we are located at CHILDRENS HOSPITAL LOS ANGELES, her name is DELAYSIA WILLIAMS.I really need help. GOD BLESS.
It’s entries like this that makes my heart break everytime I read it.
There are numerous funds (that you can find online)
for patients with life-threatening diseases that would cost you little or nothing.
Talk to the administration of the hospital, or the doctors themselves, about what charities or options you have.
It might be a little harder, since it requires a lung transplant. If she’s in good health otherwise, there’s a big chance that she will get a high spot on the doner list.
I hope everything goes well.
Dr. D
Demand this disease to leave your childs body!
Source:
Pulmonary veno-occlusive disease (PVOD) is a very rare illness causing pulmonary hypertension. As you mention, the prognosis is poor. Only lung transplantation has been shown to significantly increase survival. Lung transplantation can occur from cadaveric donors (deceased). Who gets the lung transplant is determined by the severity/prognosis of the disease and the organ availability, not by the amount of time on the list.