Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: tina on January 23, 2014, 01:27:10 AM
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Hello all. I have spent some time reading the threads on this board, but this is my first post.
I began the testing process last Friday 1/17 to be a kidney donor for my mom. I am trying to familiarize myself with what all the tests are and what they mean. I was told my mom will be difficult to match because her antibodies are high.
I did the 24 hour urine, EKG, chest x-ray, glucose, and they took a LOT of blood. 30 tubes! Is this common to take so much blood? I know they asked if I was interested in doing a paired exchange if I was not a match with my mom. Are they trying to match me with other people at this time?
Now I am anxiously waiting for the results of these tests. As we wait, my mom's kidney function is deteriorating rapidly and she may have to start dialysis soon. She was hoping for a pre-emptive transplant, but we don't know if that will be possible now.
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They take a lot of blood because they are not only checking to see how well you match, but also testing for all sorts of communicable diseases to make sure nothing bad gets passed along with the transplant. And I hate to tell you, but they will probably take some more later! So, just take it a step at a time.
best wishes,
Fr. Pat
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Dear tina,
That sounds about right. But really it isn't a lot of blood, just a lot of tubes.
I did a pre-emptive donation to my Dad. We were able to get through the testing process very quickly by continually reminding people that we were doing a pre-emptive transplant.
Make sure you are current on your gynecological checkup and mammogram, as required by most donor programs. People over 50 have other tests required, that are not done by the donor program.
If you are not compatible with your Mom, the paired donation process might take a bit longer. You might also want to discuss plasmapheresis, which densensitizes the recipient.
I wish you both well. Keep us updated.
Love, elephant
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Thank you both you for your responses. I will keep you updated.
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Do they take all that blood in one sitting? How does it work? Or how long does 30tubes process take? Weeks? Months?
I started the process of testing and only had to give like 4 tubes sent over to the doc.
Keep us updated on your process. Im interested as to know what to expect for me when I get the full green light.
Take care
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@Stpfan44 They took 20 tubes first, then I had to wait about an hour for the results of the blood sugar test. Then I drank the glucose solution (yuck!) and had to wait another 2 hours for them to take 2 more tubes. They later called me and said the lab had missed some tests so they sent 8 more tubes overnight for me to take to my local lab (I live about 30 miles away from where the transplant will be done). So they had intended for me to do all 30 that day but it didn't work out that way.
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When I was tested, I remarked on the 18 tubes of blood and the phlebotomist told me there are 96 tubes in a pint (or whatever the measure is) that you give when you donate.
So no worries. If you aren't a match for your mother, then they may try to match you with someone who has a potential donor who doesn't match him/her, and then you swap.
What is your blood type? What is hers?
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Yeah I figured it wasn't that much if it was all together. Just seeing one tube after another being filled looks like a lot! I am O+ and I can't remember right now what my mom is, but I'm pretty sure it is A+.
I was hoping to hear something about the test results yesterday but that didn't happen. The waiting is hard.
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I pray it works out for you to be a match but if not you can still help your mom. Assuming you are healthy enough, you can donate in her behalf so that she receives a kidney from someone else. It's called a paired exchange which the transplant center arranges or a kidney chain through NKR. In any case, it's kind of nervewracking to wait on each step and I wasn't even giving to someone I knew. Let us know how it goes.
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Yes, they asked if I was interested in a paired exchange and I said yes. Still waiting for the results. It's been 11 days now and the wait is painful. I was told I would know sometime this week. My mom has to have the catheter inserted on Thursday so she can start peritoneal dialysis. She's not doing well so I hope this will make her start feeling better.
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Dear Tina,
I do hope you get results soon. Throughout the testing process I would find myself worrying that I would be rejected as a donor, even though I knew it was not something I could control. By offering you have already given a loving gift.
Love, elephant
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Hi tina,
Sorry about your mom - she's lucky to have you willing to donate!
My daughter is on PD and is doing fine. She does manual exchanges during the day and as yet has not decided to do the nighttime cycler.
I hope it helps your mom to more stable health and feeling better so she can be ready if all progresses forward for a transplant.
Best of luck to you both!
Karol
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Good Morning. My name is Jack. I wish to be an altruistic paired kidney donor. I live in the Midwest and have recently recognised the urgent need for organs. I am a hospice worker, inveterate athlete, and situated perfectly for this decision. Any suggestions on where to begin? Thanks. I'm excited to be able to make a difference.
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1Love, start by contacting a local transplant center. You can find ones near you at http://optn.transplant.hrsa.gov/members/search.asp. Best wishes!
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It has been 2 weeks today since I did the tests. I was told 1-2 weeks to get the results, even checked in with them on Monday and was assured someone would be calling me this week. Now it is nearly 4p.m. on Friday so it's doubtful they will call, even though I left a message asking them to call. I just think they could have at least let me know why it is taking longer than anticipated. It's frustrating just leaving my family hanging like this.
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Well it turned out they did call shortly after I posted this. I am not a match with my mother. Not only am I not a match, I found out some possible health problems that would preclude me from donating anyway. My blood sugar indicates I have a high risk of developing diabetes, especially with my family history. My cholesterol was also high. Looks like I have some things to work on so I won't be needing a kidney transplant myself someday.
Thank you all for all your responses. You have a wonderful, supportive community here.
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Dear Tina,
I am sorry for the disappointing news. It must be very hard on you both. But I imagine that it has meant a lot to your mom that you were so willing to help.
So, use the new information well and do your best to take good care of yourself. You've got the information and the tools now to really be able to do a lot to help prevent future problems.
If you might be interested in helping out in a more indirect way, the National Kidney Foundation has a lot of volunteer opportunities. They do a lot of work at educating the public about kidney disease (both how to help prevent it and how to spot its first symptoms), encouraging people to sign their after-death donation cards and also to be aware of the possibility of living donation, fund-raising for further research, etc. They set up public information tables here and there, run kidney disease screening clinics, hold "kidney walks", etc. So, you can still help a lot of people indirectly. Info at www.kidney.org
So can also see if you can donate blood regularly or not, and also be sure to keep your after-death donation permission up-to-date. Even persons unable for health reasons to become living donors still can have many organs and tissues that can benefit others after death.
Thanks so much for sharing your story.
Fr. Pat
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Best wishes, Tina. You and your mother are welcome here, regardless of your decisions or health status. As someone who, even for a brief time had the courage to offer to be a living orgn donor candidate, you are among the people we hope to support. Please recognize the risks of the situation you know find yourself in. Please do take care of yourself. Best wishes to you both.
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It has been 2 weeks today since I did the tests. I was told 1-2 weeks to get the results, even checked in with them on Monday and was assured someone would be calling me this week. Now it is nearly 4p.m. on Friday so it's doubtful they will call, even though I left a message asking them to call. I just think they could have at least let me know why it is taking longer than anticipated. It's frustrating just leaving my family hanging like this.
Yup, that kind of stuff used to drive me bananas. But I tried to remind myself that the transplant coordinator at my center was attempting to do the work of 2-3 people on a budget insufficient for one. Certainly, you don't have to assume that there's necessarily some problem with you or your tests. It could just be that they're swamped.
Good luck, Snoopy
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I have a new appreciation for the work load of transplant coordinators. But I do try to remember the other side as I take care of patients. Always trying to balance!