The Listing Committee - Scripps

The Organ Transplant Waiting List

In the United States, more than 84,000 men, women and children are waiting for organ transplants. Their struggle to live depends on a complex and technologically-advanced organ allocation system that links patients with organs donated by strangers.

Subjected to intense scrutiny by the federal government, the public, and the medical profession, no other aspect of modern medicine is more analyzed and debated. Such scrutiny is essential. Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

In 1984, the National Organ Transplant Act established the Organ Procurement and Transplant Network (OPTN), a national organ sharing system to guarantee, among other things, fairness in the allocation of organs for transplant. Since 1984, the nonprofit United Network for Organ Sharing (UNOS) located in Richmond, Virginia, has operated the OPTN, under a contract with the Division of Transplantation in the Department of Health and Human Services. UNOS maintains a central computer network containing the names of all patients waiting for kidney, heart, liver, lung, intestine, pancreas and multiple-organ transplants; the UNOS "Organ Center" is staffed 24 hours a day to respond to requests to list patients, change status of patients, and help coordinate the placement of organs.

Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

Transplant Journey

Transplant Journey Website - stories of donation and transplant

Above I posted some photo's and interesting links for you. The first phot is of the Call Center at UNOS. I have found some interesting things to share with you this weekend as we head into fall but first let me share with you about my status for being listed at Scripps.

They did present *me* before the transplant committee last Monday and they came back with a YES, we will list you at Scripps....(YIPEE!) conditional upon completing and clearing a couple more tests...

They would like a colonoscopy... I am excited about THAT one.... but at this point you might as well look there as well. LOL

They also would like to check the status of my heart again with a 2D Echo.... no big deal as long as I pass. That test last year lead to a stress test and an angiogram to which I had to spend the night in the hospital in order to have a transfusion of platelets and plasma before undergoing the heart catheterization.

My Dr's at Loma Linda are also going to be ordering at least a stress test in November so we are working on trying to co-ordinate what everyone needs so I only have to do it once.

Sounds easy until you get the insurance company involved and then it comes down to who needs to place the order for which tests so they know who to pay, etc, etc.

So, I spent much of the last week on the phone, sending e-mails, faxes and heading to the hospital for (which is why I haven't posted yet).

I want to say to fellow patients and caregivers...MAKE SURE THAT YOU ARE PROACTIVE in making sure that the tests you need done get done in a timely manner. What I mean by this is ask if there are other options for completing the tests or lab work that might get them done sooner.

At Scripps, for example, they are the transplant center ordering the procedures but they aren't the closest to me geographically and they were also backed up to December on the colonoscopy. Now, this is something that doesn't HAVE to be done THERE... I am the one who wants it sooner so I have to be the one to MAKE it happen sooner. It isn't' a problem to find out what you need to do, you just need to take control of the things YOU CAN in your health care. Think about what needs to be done and why, Ask questions, Make phone calls.... In this case for example I have an order from Scripps scheduling both procedures, an order and referrals from my primary care doctor so I can have it done other places and My Dr's at Loma Linda are also looking at it and working on their schedules as well as calls to my insurance company for prior approval for the various places.... That way I can choose what is the faster, better choice for me so I don't have to wait 3 months for one test....

What I am saying here.....is open your mind, look at the options and make something happen.. Don't just wait around...It is your health. Your primary concern is YOU...They have lots of patients... All my health care providers have been very appreciative that I help in the process. Don't worry that you are being a pain...you are not...and even if you ARE.....so what! Just remember to thank everyone that helps you and ask nicely...you will be surprised at the help you can get with a pretty please, a smile and a thank you!

So, this is GREAT NEWS! I am NOT on the list officially yet...as in my name is not in the hat yet but it is ready to be thrown in as soon as I jump through the proper hoops.... Kind of reminding me of the kids board game *CHUTES AND LADDERS*. I will let you know when it is official and we are packing bags.

Regarding packing bags.......There isn't too much that the patient needs to bring to the hospital for the first couple of days as they will be in surgery, recovery and ICU etc for awhile. The people who REALLY need to pack are the people that will be waiting for you and the further away from home you are the more you should think about this.

Immediate Family and Friends who are most likely to be in the waiting room a lot will need a few things. Comfortable clothing, a few changes, a blanket, medications, toiletries, laptop, cell phone, chargers, magazines, crosswords, etc... Lists of phone #'s. any folders of things that have been prepared, places to stay, copies of advance directives....

Ok, well I am off to have a late Sunday breakfast with Joe and Joey....more to share about our get away cruise next....today, I promise!