im moving up on the list! (something positive)

[Lillupie]

So,
 I called my transplant coordinator today. And got some good news. Im moving up on the list. My name has come up on the Gift of Life or UNOS computer. Like, for my group/antibody type/blood type (anyone know what im talking about) I am at #144 on the list. I know its not that close but my name has NEVER come up before that I would have a number  attached to it.
 She says I should get one at the end of this year or next year.

What places have you been told you were at during your wait?? Like some of us are told, we are at the top of the list. Or you are numnber 12, so, like there are 12 people a head of you?.
 And my coordinator admits that one of my friends has tried to contact her about donating to me, but she needs to lose some weight.

So, wow this is exciting.
I mean im encouraged. Whoo hoo
Lisa

[looneytunes]

Sure sounds like good news Lisa.  Hope it happens soon for you.  You are young and have a great future ahead of you.   

[Ang]

here in australia to the best of my knowledge they won't tell you where you are on the list,which i think is a
good thing and better.

its a surprise when the call comes.
you don't have alot of time to panic and guaranteed your gonna forget something at home

[Jie]

The kidney allocation in the U.S. is a little more complex than just a list. The list is for the waiting time. If someone has a perfect match with a kidney, he or she will get it, no matter which position she or he is on the list. A DR match gets a point worth of 1 year of waiting time, and 2 DR matches get two years of worth of waiting time. So, the list is different from each kidney. However, if one has a long waiting time, eventually, she or he will come up to the top for most kidneys. 

[Jean]

That is such good news!! I am happy for you, best wishes!!!!   

[okarol]

Seems odd to me that they'd give you a number. It's just not that simple and I think whoever told you that needs some education. Yes, maybe for wait time you are the person who is ranked 144, but it means nothing if your antibody and antigen mix doesn't hit as a match.

This is from: http://www.organtransplants.org/understanding/unos/

Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word "list" is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor's blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the "list," is different each time.

The other major guiding principal in organ allocation is: local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization (OPO), which is responsible for coordinating all organ donations. With the exception of perfectly matched kidneys and the most urgent liver patients, first priority goes to patients at transplant hospitals located in the region served by the OPO. Next in priority are patients in areas served by nearby OPOs; and finally, only if no patients in these communities can use the organ, it is offered to patients elsewhere in the U.S.

[texasstyle]

I hope you get it soon! Imagine when you fianlly get the call... Ok, so I don't know how exactly a kidney transplant works but for a liver (and I'm thinking there may be some things between the 2 similar ) they give you a MELD score. That tells just how bad your liver is. The higher the number the closer you are, but the sicker you are too. For a kidney remember there's dialysis in the mean time. Also, your area, may have a lot to do with how quickly you get one. I recently read that many waiting for TP's are actually on a "2 area" list and don't know it.  I think the length of time you are on dialysis reflects how high on the list you are also.  I agree that being number "12" doesn't mean you automaticlly get one after 11 people if everything doesn't add up. When the time is right, you will get your kidney. You want evrything to go perfectly!

[okarol]

How sick a patient is only applies to liver, heart and lung transplant.

For kidneys it is quite clear: blood type, body size, tissue match and wait time.

[Lillupie]

yeah,
 Im just going by what they told me. I understand that 143 people may not be in front of me in that correct order. But in my antibody category that is where i am at. I might be an O+ but noone matches my specific antibody then im still waiting longer.
Its all in Gods timing. But Im surprised that its to the point of a number. My coordinator says that they dont tell you where are you at on the list until your name start to pop up. I guess as I get closer (as my understanding), you are the back up person. Say if I were number 3 (instead of 144). The very first person at the top would be the first to get the call, for whatever reason it passes them, then it is the next person that it would be a fit/match for, I guess they continue on down, but obviously not that far down, lol, yeah, unless it is a perfect match.
 It is going on 5 years I have been waiting and this is transplant number 1.

The bad thing is my boyfriend and I are talking about getting married sometime. He orginally wanted to wait until he got out of active duty in the Army, because for the next 3 years starting in September he will be startioned in Kentucky, so we would be living in Kentucky instead of Michigan. So, yeah, and I pesonally dont want to wait 3 years to get married.

Lisa

[okarol]

I hope your miracle comes soon. Good luck! 

[willowtreewren]

Rooting for you, Lisa! 

[mykey711]

I've been on at Michigan for over a year and recently got on in Indiana. My time moved to Indiana because their list is shorter. I'm O positive too.. Maybe I'll register in Ohio which also has a shorter list than Michigan.

[Poppylicious]

Yay!  And brilliant news about your friend too, even if she does need to lose a bit of weight ... maybe she'll come through for you.

 

[HouseOfDialysis]

I'm happy for you, Doll! Good luck.

If I had to chart my position, I'm probably in the middle 70,000s somewhere.

[Pam]

Lillupie......I'm in Mich also. I've been on the list for 1 yr. May 12 , I got my first call of a posssible kidney. I didn't get it. I was #8 on the list. It is good to know that when they do call it means we're in the system. Good luck to you!
Pam.

[Jie]

Getting marriage is good news, not bad news. There are no reasons to delay the marriage because of the transplant center issue. There are two options to deal with moving: finding a good center near you in Michigan, either (1) transfer the waiting time to the Michigan's center, or (2) keep the list in the current center and start a new list in the Michigan center; this way, you have multiple lists. If you want to do the transplant in Michigan, option (1) is the best. If you can do transplant in either center, option (2) is the best.

[Lillupie]

Getting marriage is good news, not bad news. There are no reasons to delay the marriage because of the transplant center issue. There are two options to deal with moving: finding a good center near you in Michigan, either (1) transfer the waiting time to the Michigan's center, or (2) keep the list in the current center and start a new list in the Michigan center; this way, you have multiple lists. If you want to do the transplant in Michigan, option (1) is the best. If you can do transplant in either center, option (2) is the best.

Actually there is,
 My one and only source of support would be my then husband, now boyfriend, in Kentucky. IF I keep  my listing in Michigan, going to Kentucky would be hard to get to Michigan in a short peroid of time. Its about a 10 hr drive from Ft. Campbell. Plus we are not sure how relaxed the military is on him taking time off to take me to the hosptial all the time being that he would be my one and only support. We were debating on getting married sooner or later. In 3 years he wont be active duty and can be here in Michigan. THere is also the issue with my daughter. She would need to be cared for too. Kentucky would not be completely out of the question if I didnt have a child. I just didnt think it would be that soon for me to get a transplant, or the possibility of getting one. I do have a lot of antibodies.
 He will only be stationed there for 3 years. If I get a transplant before then and  healed and up on my feet before then I suspose we could get married thebn.
Yeah, I dont like putting it off.  But I think it is a answer to a prayer.
Lisa

[Jie]

Of, sorry, I am mixed up your locations, Lisa.

You can do the same way by replacing Michigan with Kentucky. It sounds like you would like to have a transplant in Kentucky. There are two transplant centers in Kentucky:  Jewish Hospital, Louisville and University of Kentucky Medical Center. Both have about average results and the first has a few more transplants a year. Both have very good waiting times. You probably have a very good chance to get a kidney within 2 years. If you have had about 2 years of waiting time, you will be at the top when you transfer your waiting time to either center in Kentucky. So prepare to be married and then get a kidney during the honey moon...

[mykey711]

I agee Lisa. In Kentucky, you'd be higher on the list and their wait time is shorter than Michigan.