My
two kids, Billy Bleifer (11) and Andy Bleifer (10) and their friends,
David Levy (11) and Mattie Levy (7) got up last Saturday and decided
that they wanted to raise money for charity. Billy said the only
charity he could think of was the Pulmonary Hypertension Association
(PHA). I told him that was a great cause to raise money for. Andy
said, "Mommy, I hope the money we raise will make it one
week sooner that you can get off the pump." (I have been
on Remodulin for 6 1/2 years). They started selling PHenomenal
Hope wristbands and roses for $1 each. We have a large rose garden
in the front of our house and their friends, who live across the
street have one as well. After a few hours of doing that, they
decided to wash cars to raise more money. All in all, their Saturday
was spent raising over $60 for PHA.
On June 21, Congressmen Lantos and Brady held a press conference to publicize the reintroduction of the PH Research Act. The PH Research Act is crucial because it will fund ground breaking medical research dedicated to finding treatments and possibly a cure for PH. In addition to the two Congressmen, other speakers included PHA board member Carl Hicks, PH patient Charity Tillemann-Dick and Michael Hart, the father of a young PH patient.
The New UNOS Lung Transplantation Allocation System
Lung
or heart-lung transplantation is an acceptable therapeutic option for
patients with advanced lung diseases, including patients with pulmonary
hypertension in whom all other therapies have been exhausted. However,
the supply of donor lungs is scarce relative to the demand.1 Among patients
in the United States awaiting lung transplantation, unlike among those
awaiting heart, liver, or kidney transplantation, priority for organs
as they become available has been based on accumulated waiting time on
the list, not on severity of illness or clinical status. Under the old
system, donor lungs were allocated based on the time accrued while on
the waiting list, after taking ABO blood type, size, and geographic location
into consideration.
"Even for people with bad lung disease, bronchitis, end-stage emphysema and asthma, the mere effect of focusing on a basic body function like breathing can be restorative," said Michael Silver, a specialist in pulmonary and critical care at Rush University Medical Center.
Pulmonary
Hypertension - A Patient's Survival Guide The premiere information resource
for people dealing with PH -- they have ARRIVED and are ready to
ship!!!
The author, a PH patient herself,
knows what it is like to live with the disease. She talked to many
other patients, doctors, and researchers while writing the Survival
Guide. Dr. Ronald J. Oudiz and a team of physicians with a deep
knowledge of PH edited the book for accuracy.
New edition contains a chart
of 15 drugs used to treat PH; results of recent
clinical trials;
in-depth discussion of PH secondary to other diseases
or conditions;
a new chapter on what to eat if you have PH; and much, much more!
Andromed announces conclusive clinical study results on Androflo(TM)
MONTREAL, June 15 /CNW Telbec/ - Andromed Inc. (TSX Venture Exchange:
AD), an innovative medical technology company, is pleased to announce positive
results of its multi-centre clinical study on Androflo(TM), an accurate, non-
invasive and non-obtrusive respiratory rate monitor. The results of the study
show that the Androflo(TM) may be the first truly reliable clinical tool for
continuous monitoring of patient breathing, without requiring the use of a
facemask or nasal cannulae. Based on the study's conclusive results, Andromed
will submit a 510(k) premarket notification to the FDA and expects to receive
marketing clearance by the fall of 2005.
The
information provided on the PHA website is provided for general information
only. It is not intended as legal, medical or other professional
advice, and should not be relied upon as a substitute for consultations
with qualified professionals who are familiar with your individual
needs.
Lung
or heart-lung transplantation is an acceptable therapeutic option for
patients with advanced lung diseases, including patients with pulmonary
hypertension in whom all other therapies have been exhausted. However,
the supply of donor lungs is scarce relative to the demand.1 Among patients
in the United States awaiting lung transplantation, unlike among those
awaiting heart, liver, or kidney transplantation, priority for organs
as they become available has been based on accumulated waiting time on
the list, not on severity of illness or clinical status. Under the old
system, donor lungs were allocated based on the time accrued while on
the waiting list, after taking ABO blood type, size, and geographic location
into consideration. 
