| LDO Home | General | Kidney | Liver | Marrow | Experiences | Buddies | Hall of Fame | Calendar | Contact Us |

Author Topic: 23 Year old possible donor for boyfriend  (Read 5126 times)

0 Members and 1 Guest are viewing this topic.

Offline Halpal90

  • Top 200 Poster!
  • *
  • Posts: 9
  • I'm new!
23 Year old possible donor for boyfriend
« on: April 26, 2014, 02:53:06 PM »
Hello ,
I have been reading all the discussions and I thought I would throw out my concerns and questions I have no been able to find. I am currently in the process of being tested for my boyfriend. He is 26 and is going to dialysis 3 days a week. I have passed many test my blood type O matches, and the tissue typing I passed with a 4/4 none of our antigens reacted to each other. I also had a few blood test last week and all my levels came back great. The case worker I have been assigned is pretty positive about my results so far. I have a regular urine test next week and then this is where I'm lost ... I don't know what is next? From my research I'm assuming the kidney function test and the intravenous pyelography test ? I'm such a planner and I like to know what to expect next. My case worker is more of the person that like to be in the moment and focus just on the next appointment.

I'm stressing out a little bit I don't want me or my boyfriend to get sick before we are able to progress. I guess my main fear would be that one of us get sick and our antigens change.... and I am no longer a match. Is that possible? or have I received the wrong information.

I am 100% healthy with no medical issues of any kind. I don't think there would be any issues with further testing. But it is very possible. I just don't want to get my hopes up. Has anyone else experienced anything similar to this?

Offline Clark

  • Administrator
  • Top 10 Poster!
  • *****
  • Posts: 3,018
  • Please give the gift of life!
    • Living Donors Online!
Re: 23 Year old possible donor for boyfriend
« Reply #1 on: April 26, 2014, 03:39:13 PM »
Best wishes! You're setting out on a unique path. We're more likely than most to understand and support you, no matter what you encounter, but it'll always be your own experience. Try to recall what you learned already from the transplant center. If you feel your, or their, next step(s) are unclear to you, at any time, try to speak directly to your independent donor advocate. You should already have contact information for an individual with that responsibility for you. If you do not, that's your next step, whether or not they think it is. Nothing more should happen until you know the identity of that person, how to reach them, and have spoken to them directly. Among your initial conversational topics, I recommend explaining your desire for explicit confirmation of your, and their next step(s) on an ongoing basis. This isn't unreasonable, and you may have revealed a weakness in their new candidate intake procedures.

That's process. Details vary for each transplant center, so what tests, in what order, when, are all unknowable until they reveal their procedures to you. As I said, considering how far along you already are, someone may have dropped the ball with you. This should have been laid out in writing, and you should already have been asked for your informed consent for testing you've already had, before the tests were performed, including the knowledge of their purpose and where they fit in the context of all you may face. Again, best wishes. Negative crossmatch, type O, and a 4/6 HLA match all are very promising. The blood levels you mention are likely creatinine and BUN, also encouraging.

Your feeling of increasing stress is normal, reasonable, and something to consider. Doing honest self examination of what is causing your stress, whether or not understanding it eases it, will guide you through your own judgement, balancing, and acceptance of the risks you've already starting taking. There are more to come, each one more challenging in its own ways from the earlier, until donation surgery itself. Then they start to tail off, but one of the hardest, and most important to face responsibly, is that they will continue for you from now on, for the rest of your life, whether you donate, or not. This is why I hope you've already got the IDA contact info. If you're deferred after setting out on this path, for whatever reason, you face risks associated with that. If you're not deferred, and become a donor, there's a growing awareness of the lifelong increased personal health management practice we must responsibly undertake.

I've spoken of risk and responsibility. Try not to let that overwhelm you at any time. There's always risk, or, rather, some more or less quantifiable probability of a range of potential outcomes for everything we choose to do, or not do. What of rewards, or the probabilities of positive changes? These are just as important to consider carefully. Take the full measure of enjoyment from the prospect. The reality will be what it is, and you've already changed the odds of what changes lie in store for you and your boyfriend. Bravo!
Unrelated directed kidney donor in 2003, recipient and I both well.
620 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline CK

  • Top 10 Poster!
  • *****
  • Posts: 219
Re: 23 Year old possible donor for boyfriend
« Reply #2 on: April 26, 2014, 04:10:05 PM »
I haven't heard of people getting sick and their antigens changing, but I'm not an expert (and anyway, where I donated, they said antigens were really no longer the important measure- my recipient and I only had one match and actually have different blood types).

They will do a bunch of tests to ensure everything is in working order: I had to do a glofil kidney function test, a stress test, a CT scan, a pulmonary function test (I have asthma)-but it differs at each site.  It shouldn't take more than a few months if you are healthy-so as Clark said, if you don't feel you are getting good information, ask someone else.

I donated to my boyfriend, who is now my husband, two years ago.  It seems like forever now, and yesterday at the same time.  My then-boyfriend got a cold a week before the transplant and it was touch and go whether we'd be able to do it then...but it went off without a hitch.

Best wishes.  It's very nerve-wracking, but you will enjoy watching your boyfriend get well.

Offline Halpal90

  • Top 200 Poster!
  • *
  • Posts: 9
  • I'm new!
Re: 23 Year old possible donor for boyfriend
« Reply #3 on: April 26, 2014, 04:20:04 PM »
Thank you Clark for the reply! I appreciate all of your input.

I am being tested at the University of Minnesota. I have been assigned a LPN that has been talking to me over email to schedule my appointments from the Transplant Center. I'm Assuming she is my donor advocate as well. I did initially fill out paperwork about myself, and my medical history. I have not signed anything to authorize testing, but I'm not sure that is necessary for there procedures.

When she called me last week to tell me about my HLA she told me none of our antigens had reacted and that was a really good thing. So waiting for this urine test next week... is my next step. I will try and get a more clear plan as to what other tests need to be done. I would like (like most people) try to get the rest of the testing done on the same day. I hope that this process keeps moving forward. And from other posts it seems like the donor has to really push to keep moving this process along. I don't want to seem overly pushy to the advocate but like I said I would like a more laid out plan.

I fully intend to donate if I turn out to be the best candidate :D. This is definitely a learning experience for me, and for my boyfriend. I never knew the process of any of this. And seeing someone that you love and care for decline in health because they need a kidney has been really hard to watch. But we are both very involved with his treatment and future care. We will continue to push for this new experience. And I am open to any advice anyone has for me.

CK:
Thank you for reading my post, I'm glad you were able to donate to your now husband. I'm so looking forward to watching him regain all of his strength. It's hard to watch someone struggle so much. But we are staying positive. I try to keep only good thought for the both of us. Sitting in Dialysis with him 3 days a week for 3:30 hours a day has been really eye opening. The Doctors at the U already told the both of us that this wont be his only kidney he ever gets because of his age. I want him to live a happy productive life where he is fully capable of doing everything he wants to achieve. We are taking this day by day and I am very excited and hopefully the candidate for him. Thanks again for your reply. I think in the following few weeks I will be leaning heavily on everyone here for advice and encouragement.

-Halpal90

Offline Fr Pat

  • Top 10 Poster!
  • *****
  • Posts: 983
Re: 23 Year old possible donor for boyfriend
« Reply #4 on: April 26, 2014, 06:49:01 PM »
Dear "HalPal",
     Hi. Just to clarify one point. It is possible for the recipient to develop new antigens between the time of the initial testing and the surgery (especially if he/she gets a blood transfusion.) So they always run a "final cross-match" a day or two before the surgery to make sure that everything is still O.K. Although it does not seem to be common, there HAVE been cases where a transplant that seemed to be a sure thing had to be cancelled the day before because of failure in that "final cross-match". (in the "cross-match" portions of the donor's and the recipient's blood are actually mixed to watch for a bad reaction.) The good news is that in such a case it is still possible to arrange a "kidney swap"  in which you would donate to someone else, and that person's incompatible donor would give to your boyfriend. Big computer data-bases now make such swaps easier, and as kidneys can now be safely transported the door and recipient don't even need to be in the same State. So, take it a step at a time, but keep in mind that there still may be some bumps in the road.
     You can also get some more details about the testing process by clicking the information line on kidney donation at the Home Page of this site.
     best wishes,
        Fr. Pat (donor, 2002)

Offline elephant

  • Top 10 Poster!
  • *****
  • Posts: 378
Re: 23 Year old possible donor for boyfriend
« Reply #5 on: April 28, 2014, 10:02:27 AM »
Dear Halpal,

Do keep in mind that if another donor comes forward (a family member, for instance) you would be able to be the "next" donor for the future.  Since you are quite young, you could be "on deck" for a long time and he would know there was a kidney waiting in case of rejection.   

If you do move forward as the donor, think about the conversations you'll be having with the psychologist and social worker as a part of your donor testing.  Every donation has it's own interpersonal dynamics.  For instance, I donated to an elderly parent.  My siblings did not volunteer.  My husband was concerned about my health. You would be donating to a boyfriend who you may or may not remain with. Your family and his family will have their unique concerns.  Each donor needs to evaluate the issues that impact their donation. 


Love, elephant

Offline Halpal90

  • Top 200 Poster!
  • *
  • Posts: 9
  • I'm new!
Re: 23 Year old possible donor for boyfriend
« Reply #6 on: April 28, 2014, 10:28:31 AM »
Fr Pat:The Kidney swap has been an option given to my boyfriend but he has many other options at this point, currently he is on the list for a cadaver kidney. As well as having family and friends tested. There are a total of 9 people who are willing to be tested. And as of today 2 have started (which would include me). From what I've discussed with my patient advocate she is pretty confident about my health and my ability to donate. But there are many more tests ahead. 

Elephant: Thank you for replying, my boyfriend has 9 potential people to be tested, and is on the cadaver list. Because of his age they are pushing to get this done quickly. I have thought deeply about my choice to donate and I still stand firmly that if I am able to donate I will. If for whatever reason down the road things do not work out with him...so be it. This is a gift. It is not something I would ever dangle above him. I want him to live a happy & productive life. Our families are extremely supportive and are helping us both stay positive through all of this.


-Halpal90

Offline CK

  • Top 10 Poster!
  • *****
  • Posts: 219
Re: 23 Year old possible donor for boyfriend
« Reply #7 on: May 03, 2014, 09:59:19 AM »
Halpal, I made the same decision when I donated to my boyfriend: that I was going to do it without concern about whether or not we stayed together.  I would have given it to a family member or friend as well, and it was the right thing to do at the moment.  And that it was a gift without strings attached; I never wanted him to feel obligated to me in any way (though periodically he says that he can never re-pay me for everything I've done for him).

I never had to watch him go on dialysis and that was a big motivator for me, to avoid that.  He got to the point where he was just about to need it (he waited a long time past when most people would have gone on it) and then we did the transplant.

Your BF is lucky, out of 9 people he should find a match.  I was the only one tested and even though I have a different blood type,  they were able to do a ABO incompatible transplant that they expect to get 25 years from.  That should take us to our golden years, and hopefully by then there will be advancements in artificial kidneys.

I hope your BF realizes how lucky he is. :)

Offline Halpal90

  • Top 200 Poster!
  • *
  • Posts: 9
  • I'm new!
Re: 23 Year old possible donor for boyfriend
« Reply #8 on: May 03, 2014, 02:09:57 PM »
CK:
Thanks for getting back to me. Your story is amazing, and I hope that we have similar outcomes. Oh he knows he is lucky haha and is very grateful. Just trying to keep him motivated through all of this. Dialysis has been taking a toll on him on the last week and he has been getting very discouraged. But He knows that it not a forever thing.

Halpal90

 

Copyright © International Association of Living Organ Donors, Inc. All Rights Reserved