In Joe's case he has chosen to be a Bridge to Transplant (BTT); meaning, he currently has a Left Ventricular Assist Device (LVAD) that optimally will help him live long enough to receive a heart transplant. Thankfully, he is well enough to make it to this target at the current time. Our 30 days came and went without the "gift" so we live each and every day on the 1B list, wondering if today will be that day when the phone rings and they tell us "We've got a heart for you". I wish I could tell you that this is an easy journey, it's not. It's emotional and stressful and you do almost anything to keep your mind from wandering to transplant thoughts. There are approximately 3,200 people per day waiting for a heart transplant. In 2010, approximately 2,000 people were lucky enough to receive this gift of life. We have done this chapter, as a living document, to provide information that might otherwise not be available. If there is something in particular you would like to know and can't find it - contact us, and we will gladly find it for you within our means.
Transplant Patient Information: has been created to help patients and their families through the process of organ transplantation and to provide the information needed to make knowledgeable healthcare decisions. (UNOS pdf file)
When you are listed, your heart will be coming from one of the states incorporated in the region where you are located.
UNOS's Interactive Regional Map: from this link you can see how many transplant centers are in your region, how many transplants are done per region/state/transplant center.
UNOS Status Categories:
There are 4 categories of heart transplant candidates with UNOS listings:
1A - Has a vad of some type, a total artificial heart, intra-aortic balloon pump or an extracorporeal membrain oxygenator. The 1A status lasts for a 30 day timeframe. (This gets more detailed in the link below)
1B - Has a left or right ventricular assist device (LVAD/RVAD) or continuous infusion of intravenous inotropes (Dobutamine, Milrinone, Dopamine)
2 - A candidate who does not meet the criteria of a status 1A or 1B
7 - a candidate who is considered temporaily unsuitable to receive a thorasic organ transplant (weight loss issues, other health concerns)
For the complete status jargon click here.
UNOS has a wonderful website, and if you have the time you can find lots of interesting information there. For example, the have a factsheet regarding the Theological Perspective on transplants - giving and receiving. I learned alot on this factsheet.
Joe and I hope that our blog helps people with their journeys. It is not always easy to find the information you so long for, and people in the medical world are sometimes not so helpful and tell you all the rosy stuff you long to hear without the reality that comes along with the packet. Our mission through our blog has been to let people know they are not alone on this journey - We are all just like you.
Transplant Patient Information: has been created to help patients and their families through the process of organ transplantation and to provide the information needed to make knowledgeable healthcare decisions. (UNOS pdf file)
What Every Patient Needs to Know
Partnering with your Transplant Team: The Patient's guide to Transplantation
UNOS Region Information:
There are eleven regions in the United States. They are broken down as follows:
- Region 1: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Eastern Vermont
- Region 2: Delaware, District of Columbia, Maryland, New Jersey, Pennsylvania, West Virginia, Northern Virginia
- Region 3: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, Puerto Rico
- Region 4: Oklahoma, Texas
- Region 5: Arizona, California, Nevada, New Mexico, Utah
- Region 6: Alaska, Hawaii, Idaho, Montana, Oregon, Washington
- Region 7: Illinois, Minnesota, North Dakota, South Dakota, Wisconsin
- Region 8: Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming
- Region 9: New York, Western Vermont
- Region 10: Indiana, Michigan, Ohio
- Region 11: Kentucky, North Carolina, South Carolina, Tennessee, Virginia
UNOS's Interactive Regional Map: from this link you can see how many transplant centers are in your region, how many transplants are done per region/state/transplant center.
UNOS Status Categories:
There are 4 categories of heart transplant candidates with UNOS listings:
1A - Has a vad of some type, a total artificial heart, intra-aortic balloon pump or an extracorporeal membrain oxygenator. The 1A status lasts for a 30 day timeframe. (This gets more detailed in the link below)
1B - Has a left or right ventricular assist device (LVAD/RVAD) or continuous infusion of intravenous inotropes (Dobutamine, Milrinone, Dopamine)
2 - A candidate who does not meet the criteria of a status 1A or 1B
7 - a candidate who is considered temporaily unsuitable to receive a thorasic organ transplant (weight loss issues, other health concerns)
For the complete status jargon click here.
UNOS has a wonderful website, and if you have the time you can find lots of interesting information there. For example, the have a factsheet regarding the Theological Perspective on transplants - giving and receiving. I learned alot on this factsheet.
Joe and I hope that our blog helps people with their journeys. It is not always easy to find the information you so long for, and people in the medical world are sometimes not so helpful and tell you all the rosy stuff you long to hear without the reality that comes along with the packet. Our mission through our blog has been to let people know they are not alone on this journey - We are all just like you.
Love the blogg! The information is wonderful. We, too, are on the Bridge to Transplant. For whatever reason, my husband, Jim, the LVADer, is handling this so much better than me, the caregiver or "wingman" as you call it. I love that term! I am a nervous wreck; every time the phone rings, I jump-thinking it may be THE call. We live 4 hours from our Transplant Center- 4 hours and 5 mountains separate us from them. Trying to decide whether to live in our RV all winter close to the UVA Med Center in Charlottesville, VA is the big decision we are facing now. Neither of us really want to do it, but I FEEL that we HAVE to do it-just in case that call comes. I keep hoping we will get the call before Thanksgiving (we are 1A at the moment, too) Then I KNOW we'll have to move it to Virginia because we will have to go to the Transplant Center weekly for a certain period of time.
ReplyDeleteWe have a 5 month old grandson we don't want to leave. We have 15 dogs (yes, this "wingman" also rescues dogs" that I don't want to leave, etc. etc. but Jim is more important than what I "want" to do at the moment.
Thanks for the information on Organ donation. I intend to check it out. I simply don't understand why everyone isn't listed as a donor. When folks give me their reasons, it sounds so lame to me at this time.
Again, thanks for the blog. Keep up the good work!
Big decisions to make, for sure. You can also join the facebook support groups that are out there - always someone to answer questions, or just listen when you have to speak. LVAD Caregivers and LVAD Friends are two of them that we all hang out on. Thanks for liking the blog, it's cathartic for me. Love that you rescue dogs - we have three - but only one with us. Miss the other two horribly.
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