Nervous about transplant

[Paul]

If you get a transplant outside a Medicare approved facility (ie, buy one on the foreign market), you do not get any financial assistance from Medicare for post transplant drugs.

I was NOT suggesting anyone do this, I was just explaining why I had thought it possible, from previous posts, that Aaisha.Dar was Turkish.

In Britain it is a criminal offence to go abroad and buy an organ (or even blood).

[SweetyPie]

I think I probably signed the kdpi thing where I wouldn't accept a kidney that is high risk. The team explained everything fairly well. I think it was just a lot if information at once that i probably misunderstood. Im sure if the team thinks its okau for me to accept a kidney from a deceased donor then maybe its okay for me to go along with it.

[Simon Dog]

You need to understand terms of art in transplantation.

"High Risk" means a kidney from someone with unknown health history, a history of drug use, or possible time in a prison shower.

"High KDPI" brings a higher risk of failure at a sooner time, and is separate from "high risk".

A "High risk donor" kidney can have a very low KDPI and vice-versa.

I suspect you signed "no high KDPI" rather than "no high risk donor".   This risk of catching a disease from a high risk done is reported as about 1 in 2000.

[SweetyPie]

Okay then I signed that I wouldnt accept a high kdpi kidney.

[UkrainianTracksuit]

Hi, I just want to reiterate what Simon Dog said. As a younger recipient, I signed a form that stated no High KDPI cadaver kidneys. This was separate from high risk as my first call was for high risk organs. (They did add prostitution and homosexual men to this list as well.) Even if you receive a call for one of these, keep in mind that the organs are safe. Simon noted the small risk as the extra testing is stringent.

[SweetyPie]

Thanks for the explanation. Another reason why I would've preferred a live donor is because I am in school. Being the person I am I like to plan things out ahead of time. Also I have a lot of antibodies so I am wondering how I can get rid of those before the transplant.

[UkrainianTracksuit]

It is understandable that you would like to plan things out since you are in school and not want to lose credits and such. When I became active on the list, I had to turn down a job because I didn't know when the call would come or how long I would be out of commission. That said, I did let my other employers know that I could disappear from work for awhile. I tried hard to find a live donor in the beginning but then when I decided to pursue a double tx, a deceased donor was my safest bet. So far, so good.

That said, when I got the call so quickly, I was unprepared. I packed a bag when I learned I was active on the list but other things I couldn't plan. Now when I see what I packed, nothing makes sense either. If you would like a live donor, you need to actively seek one out and I am sure you already know this and others can offer tips. Then, you can pursue a paired exchanged like you mentioned, even if they are not a match for you. However, the rule of thumb with most transplants is that you can only plan so much and the rest you never can plan, really...

As for your high antibodies, your transplant center will obviously be aware of that and plan a course of action. There are medications that can be given to reduce antibodies (IVIG and plasmapheresis) and there are certain matches that can be made. This is not something you can do yourself and need to ask these questions to your tx coordinator and center to see what their plan is. At this point, make a list of questions and ask, ask, ask! They are the ones with your most concise health information and how to handle your specific issues/questions.

[SweetyPie]

Thank you for the tips. I do feel very unprepared. I am waiting for Monday to come so I can ask these questions and get a better understanding of everything.

[SweetyPie]

Now that I am learning more and more I am thinking about changing hospitals for my kidney transplant. I am orginally at INOVA in fairfax and I for transplant I was evaluated at Medstar Georgetown in DC. INOVA is 20 minutes away from my house and since we have no idea when a kidney could be available I think it would be smart to go to the closest hospital. Also I know about DC traffic very well. I used to go to Childrens hospital and it was always crazy traffic.
When transferring hospitals do i have to get another evaluation done? Im already on the list. Do they need anything more from me?

[iolaire]

Since you were just approved at Georgetown you should need much more testing. You might need a few tests but they can get most of the records from Georgetown.

[SweetyPie]

Since you were just approved at Georgetown you should need much more testing. You might need a few tests but they can get most of the records from Georgetown.

What other tests need ti be done? Do I have to redo any of the tests that would be frustrating. If its a hassle I might of just stay there. Where did you get your transplant?

[iolaire]

Since you were just approved at Georgetown you should need much more testing. You might need a few tests but they can get most of the records from Georgetown.

What other tests need ti be done? Do I have to redo any of the tests that would be frustrating. If its a hassle I might of just stay there. Where did you get your transplant?

Talk to the program to find out what you need. It should be minor if the rest of your tests are recent. 

I do recommend going with the program most convenient to you as you will spend a lot of time heading into the clinic post transplant.

I received my transplant at GW after five years listed at INOVA. I live close to Shirlington. So GW was much closer and I work downtown so once I was back at work it still was close. I'm happy I switched.

[SweetyPie]

Since you were just approved at Georgetown you should need much more testing. You might need a few tests but they can get most of the records from Georgetown.

What other tests need ti be done? Do I have to redo any of the tests that would be frustrating. If its a hassle I might of just stay there. Where did you get your transplant?

Talk to the program to find out what you need. It should be minor if the rest of your tests are recent. 

I do recommend going with the program most convenient to you as you will spend a lot of time heading into the clinic post transplant.

I received my transplant at GW after five years listed at INOVA. I live close to Shirlington. So GW was much closer and I work downtown so once I was back at work it still was close. I'm happy I switched.

Does seem like a good idea to switch. If I switch it would be easier on the family to take me to my appointments. Will talk to them on Monday. Hope all goes well.

[Simon Dog]

Chances are good the new center will accept test records, however, you will still have to go through a process that will probably include a transplant committee review.  You'll be off-list for a while, but the good news is that you will not lose any wait time, and the time you spend waiting to become active at the new center will count.

[iolaire]

Chances are good the new center will accept test records, however, you will still have to go through a process that will probably include a transplant committee review.  You'll be off-list for a while, but the good news is that you will not lose any wait time, and the time you spend waiting to become active at the new center will count.

I stayed on the list through the change of centers.  Once the new program accepts you they send a letter to both the regional network and old center.

[KellosKidney]

Here's how it worked for me (I just had a preemptive live donor transplant last Friday) :