The first successful heart/lung transplant was performed by Dr. Bruce Reitz at
Stanford University Hospital in 1981. Since that time, the procedure has been greatly improved and in 1997 there were
250 transplants performed at 94 heart/lung transplant centers. Heart/lung transplants are performed on patients who
will die from end stage lung disease that also involves the heart. Alternative therapies for these patients have been
tried or considered. According to the International Society for Heart and Lung Transplantation, the leading reasons
people receive heart/lung transplants are:
- Primary Pulmonary Hypertension – 30%
- Congenital Disease – 28%
- Cystic Fibrosis – 15%
- Emphysema – 5%
- Idiopathic Pulmonary Fibrosis – 3%
- Alpha-1-Antitrypsin Deficiency – 3%
The Organ Procurement & Transplantation Network (OPTN)
waiting list had 200 registrants for a heart/lung transplant as of January 3, 2003. According to UNOS, the average length
of time that a candidate spends on the list is 612 days. The number of patients waiting for a heart transplant on January
03, 2003 was 3900 and the number of those waiting for lungs were 3834. So how does UNOS decide whether to give someone
a heart and two lungs or give one person a heart and two people a single lung?
It is somewhat strange to be going to a pediatric cardiologist,
but the adult cardiologists do not have that special training in Congenital Heart Conditions like a pediatric Cardiologist.
Many of the adult cardiologist’s I saw told me they did not feel qualified to treat me. One doctor in Toledo referred
me to Dr. William Suarez, at the Northwest Ohio Congenital Heart Center, located at Mercy Children’s Hospital in Toledo,
OH. He is the best! After thorough testing and a cardiac catherization he felt a heart and double lung transplant
was needed. Dr. Suarez gathered all of my medical data and sent it out to 5 of the best hospitals within the U.S. who
perform heart and lung transplants. From those hospitals that responded to Dr. Suarez’ referral, I choose the
Cleveland Clinic.
That began my transplant testing. Wow, I never realized
I had so many body parts that could be examined by a MRI! Every organ in my body had to be tested and given a clean
bill of health before I could be approved for the transplant. Eighteen months later I finally made it on the “List”.
So now I continue to be tested every other month at Cleveland Clinic, and wait until I receive that special phone call.
Please check out the rest of my web site and read all about
the National Transplant Assistant Fund (NTAF), and how they have been helping transplant patients such as myself for 20 years now. They really are a wonderful
organization with a very dedicated staff.
Also take a look at the Cleveland Clinic Foundation (CCF). The US News and World Reports prestigious “Best Hospitals Survey” have ranked the CCF, “Best
Heart Center in America”, for 8 years in a row. You can also find out more about Congenital Heart Conditions at
the CCF web site.
I would love to hear from you, please send me an email at
JillNegaard@helpjill.org.
How to Help: Contact the NTAF for on line contributions at
www.transplantfund.org/contribute.html, or call the NTAF at 1-800-642-8399 to make a donation with your credit card. Or you can mail a check to:
NTAF - Heart/Lung Transplant Fund
Suite 230
3475 West Chester Pike
Newtown Square, PA 19073
Be sure to print in the memo section “In honor of
Jill Negaard”. Remember - your donation is tax-deductible to the extent allowed by law.
Become an Organ / Tissue Donor by sharing your wish with your
family. They will be the ones who make the decision in the event of your death. Sign and carry a donor card.
