I've been waiting and waiting....

[TurtleSB]

Hello, all!
I am in the process of being tested to see if I'm a match for my sister.  I live in Michigan, and she lives in Georgia and her doctors are at Emory Hospital.  The kidney transplant coordinator there sent me blood tubes, and I had my blood FedEx'd down to Emory over 7 weeks ago now.  The paperwork I filled out said this step should take 3-4 weeks.  I did call the coordinator at the 4 week mark just to make sure they HAD my blood, and nothing went wrong with the shipping process.  She said they did get it, and were still testing.... Can someone tell me how long the initial bloodwork process normally is?  I'm getting very anxious!  I know they eliminated at least 5 people so far, 4 of them being after I submitted my blood.  I'm hoping this is a good sign for me??  Any advice would be appreciated 

[rogermims]

Have your blood tested at the doctor of your choice and send them the paperwork. Most transplant centers do it that way anyway. Ask them to send you a form approving the billing for the bloodwork.

[TurtleSB]

I've already filled out all the paperwork, and I already did the blood work - they've been testing my blood for over 7 weeks now... I'm just waiting to hear the initial results if I'm a match.  I understand there's plenty of other tests to be done in the future, in the event I am a match for my sister - I just have been waiting so long, and haven't heard anything yet!  I guess this means they haven't ruled me out yet, which I'm thankful for.  How much longer do you think it will take for the blood test results?

[Jewels]

7 weeks seems like a very long time to me, I would definitely follow-up!  I have heard it can take 4-6 weeks but I think it is usually much quicker.  I had to do the same thing and have my blood drawn in Seattle and Fed-ex'd to Detroit.  I heard that I was a match in less than 2 weeks (I did have to call them.)  Sorry this is taking so long for you, I remember the anticipation and waiting is so hard.

Wishing you the best of luck and a smooth process moving forward.
Julie

[sherri]

I also Fedexed my samples and my results were back in a week or ten days. they told me 3-4 weeks and I was happy I would have some time to research about transplant and get questions answered. As it turned out they called me sooner than I had hoped. I think my brother was pushing on them to get the results really soon. I then wanted to give myself a week to organize my thoughts and talk it through with my husband before giving an answer and the coordinator contacted me. Maybe you can use this time to research, learn more about transplant, plan etc.

 You can also ask to speak to an administrator in the department and find out exactly where you are in the process. This is also a good time to evaluate a hospital as you will potentially be a patient there so see how good they are at communication and keeping on top of things. If something got lost, it happens, but they should be forthcoming with what the problem is. You can also ask for an administrator or patient advocate at the hospital and sometimes they can intervene for you. Has your sister been satisfied with her treatment there?

Good luck waiting and hope you get your results soon.

Sherri

[CK]

When I was undergoing testing, my recipient's nephrologist told me to bug them continually as the process can move slowly otherwise.

I'd keep calling them if I were you.  7 weeks is plenty long enough. When I go for follow-up appointments, they have my blood work up to the doctor in a couple hours.

[cupid]

When I fedex'd the blood, I had the results within one week. I seriously think you should keep calling and bugging them.

[Fr Pat]

     It has been reported that some transplant hospitals may may deliberately delay giving test results to potential donors, in order to give the potential donors plenty of time to think it over and perhaps just gracefully back out by not asking further about the test results. The hospital MIGHT be thinking "If this person REALLY wants to donate, and is not just being pressured to do so, she/he will take the initiative to ask about the results". So, as noted elsewhere above, politely but insistently asking for the results as often as needed, or asking for a clear date of when the results will be available, may be a wise option.
  best wishes,
     Fr. Pat

[TurtleSB]

Thank you everyone, I really appreciate your comments.  I definitely will call again.  I do know that there was an unusually large number of people that signed up for the testing process for my sister, and they said they can only test 5 people at a time.  I did feel better after the transplant coordinator said they were working on my blood, and I know of 3 people (one being my husband) that were notified of not being a match just in the past couple of days. The anticipation is killing me!!

[cupid]

Yes, the waiting truly is the hardest part. Especially when you go for the further testing-you wait for the results praying that nothing is wrong with you-and once again, you have to wait. Good luck to you-and know whatever the results, you are doing an awesome thing by being tested and willing to donate.

[Fr Pat]

     Remember also that if you are not a match for her, but are otherwise medically suitable to donate a kidney, you can arrange a "swap" in which you give your kidney to another patient in a similar sitituation, and that patient's incompatible donor gives a kidney to your sister. Sush swaps can be arranged through the large data bases at www.paireddonation.org or www.kidneyregistry.org
    best wishes,
   Fr. Pat

[theburts26]

We sent our blood to Tampa on January 24th from Portland, Oregon and found out on February 10th that we were matches....Tampa General has been fantastic, but we followed-up with them regularly through email and over the phone.