Long distance donor to be has questions

[lclark8307]

My recipient lives in another part of the country. I had my preliminary blood and urine work done here in April. I flew to where my  of recipient lives in May for day long tests. In June I had a mammogram done and repeated my 24 hour urine. Last month I had to fly back to the transplant center to speak with a psychiatrist. We checked with the donor team to see if after the psychiatrist cleared me if there would be anymore tests that I would need to return for and we were told I would not. The informational class I attended told me I would be at the transplant house for four days before the surgery for tissue typing. I was scheduled for August 29 but was told about ten days before I would get a call to schedule yet another set of tests I needed and that I needed to fly there for before the 29th . Does this mean that my tests done in May expired ? I get conflicting answers from different members of the transplant team and am confused. This is a huge cost to my recipient. Are all these trips normal protocol ?

[Fr Pat]

     Some hospitals will allow you to take some tests in your local area and have the results sent to them, or have blood samples drawn at a local lab and sent to them. It might be good to ask them about these options, to possibly avoid transportation costs and time.
     A final "cross-match" is always done shortly beforfe the scheduled surgery, even though the "cross-match" has been done before, to make sure that the recipient has not recently developed anti-bodies which would react against your kidney. (In the "cross-match" portions of your and the recipient's bloods are actually mixed to see the reaction.
      I hope this helps. Don't be afraid to ask them for clear explanations if there is anything you don't understand, or if you have any questions. You need to be well informed.
       best wishes,
          Fr. Pat

[Jewels]

Hello - I donated long distance a year ago, I live in Seattle and my sister/recipient in Michigan.  I did all my testing at my local PCP and a local transplant center in Seattle and they sent all the info to my coordinator in Michigan.  Everything took a little longer and a lot of coordination, but it was important not to have to make numerous trips before the surgery (due to expenses, work, kids, life!)  I flew to Michigan on Sunday, spent the day at the transplant center Monday for final cross-match and to meet with their team (some things were repeated that I had done locally like visit with a social worker, psychologist, etc.) and surgery was Friday.  As much as I would have like to have met the team in person prior to that week it worked best for my family and I to do it this way.  I was also lucky to have a great center to work with locally.

Good luck with the rest of this exciting process and upcoming surgery!
Julie

[lawphi]

I donated long distance and did most of my testing remotely. HLA typing can be done locally.  I assembled my own HLA testing kit and shipped it to Yale.  Four red tubes.  You are good to go.

Your recipient can write off every penny on their taxes.

[jstx]

I also donated long distance. I did most of the testing locally through either my PCP or a local Quest center. I only traveled to the transplant hospital once for an all day evaluation with bloodwork, CT scan, meetings with the transplant team, & a psych evaluation. Then I was good to go until the actual surgery (had to fly there a few days early for pre-op appts, etc). I've not heard of a center requiring a long distance donor to travel multiple times. I would definitely ask why so many trips for you. Not only is it expensive for the recipient (even if they do get tax write-offs for it, but it can be difficult to schedule your life as well.

Good luck with the rest of your evaluation process. I hope you are able to get this all sorted out.

[mintx]

lclarke (and Jewels Too)

I am going through the long distance thing too and we have had a few detours along the road.   My mom is in michigan and after getting the initial approval to start testing we've had some delays.  During this process Mom was told that "Texas does not play well with others" in regards to billing and sharing information.  Unfortunately I have found that to be true. 

I started doing my 24 hour urine and the Quest lab decided after almost a week of back and forth ( before and after my collection) that they cannot bill the transplant center.  I am collecting again for a different lab and am hoping against hope that there will be no billing issue tomrrow.  Our last resort will be to have me complete my tests at the end of the month while visiting my parents in Michigan.  That is not what I wanted to do while expecting to be on the beach. 

After this round I will have to travel to Michigan again (Jewls they changed the process) to meet with the team, the psychiatrist etc.  Then we wait for a group to be pared with. 

So I too will be making multiple trips, luckily most will be combined with visiting family but it's getting so frustrating trying to find people who will do the tests and planning for extra trips cross country.

[Jewels]

Mintx - Sorry to hear the process is not going very smooth!  One thing with the billing you might try (and Rene from Henry Ford worked with me on this) if the local provider sends you a bill, then you send the bill to the transplant center for payment.  So even if they will not bill them directly you should still be able to get them to cover the costs.

They really wanted me to come to Michigan for the day long tests but it just wasn't feasible for me to do so they worked with an excellent local transplant center.  I do not think you will regret going there as once you meet them in person I think it will help the process in the long run and create a comfort level for you when you know the team you are working with.  And a bonus you can incorporate it into a family visit.

Good luck getting this all straightened out!  Message me anytime if you have any specific questions, especially about HF.

All the best -
Julie

[PhilHoover]

Sounds like the medical center that will be doing the transplant surgery DOESNT know what they are doing.

If you aren't comfortable 110%  with their answers, find another center....or encourage your recipient to find another center.