A couple of questions

[pattydotty]

First, I would like to thank you all for being such a wealth of information and support.

I have a couple of questions for those who have gone through the process or are close to going through?

Anyone out there donate to someone they did not know well? I am in the process of being matched for a former co-worker's son. Neither know at this point. It is difficult to explain how I came to this point.  I would be interested in hearing other's stories.

I just had my CT scan, and will have all of my other appointments today ( sw, surgeon, nephrologist). How soon after this should I expect to hear back?

How long did it take to have the surgery after being told you were the match?

Last question (for now)
If done laporscopically, how long were you out of work? Did anyone have a hard time from their employers???

I know, a lot of questions. It is just feeling very real and lots of questions are popping up.

Thank you! PattyD

[Clark]

Dear Patty,

  Best wishes! My recipient is the spouse of one of my spouse's co-workers, and while I had met her before, we didn't know each other well.  I was in contact, via the spouse-spouse connection, every step of the way. Your call on how much disclosure is appropriate, with whom.  Like anything else, once shared, it can travel farther than ever imagined.

  Hope your testing isn't too troubling, but try to get results either directly from the testing person in real time, or get a commitment from each one to send them to your primary care physician or you.  Don't assume this will happen automatically, or that anyone will call you. Ask when will be reasonable to call to follow up, and if the longest stretch is, say, three days, call both your PCP and the transplant center in three days. Tell them both you're talking to the other, and that the testers all assured you the results would be available.  Yes, take a notebook.  If you haven't started a file yet, now's a good time.  Your treatment during testing, including disclosures of potential side effects, consent fot each and every one, responsiveness of the transplant center staff, and complete sharing of information with your PCP in real time are all revelatory of the respect and dignity these professionals hold for you.  Be candid that you're evaluating then just as they are evaluating you.

  "Matching" is essentially a moot point these days.  0 of 6 HLA mismatch is no longer a deferral, and even blood type difference can be either suppressed or dealt with via paired donation.  Each of these carries a different risk profile and ethical decision weight for you and your potential recipient, but this just reinforces that the time between when you set foot on the path to donation and when you might become a donor is extremely variable, and dependent on a lot different possibilities.  For me it was 19 months, relatively long. Most are in the six month range, I believe.  Ask the transplant center to disclose if they require a "cooling off" period, how long it is, and a what stage(s) in the process it occurs.  If they don't disclose it and stop taking your calls, it can be a very discouraging head game, and, again, indicative of the respect and dignity with which they regard donor candidates.

  I had a hand assisted left side retroperitoneal laparoscopic nephrectomy nearly 10 years ago.  I was out of work for two weeks and then another two weeks of mornings only.  My employer had an amazing policy of open ended full pay and benefits for recovery from living kidney donation.  I don't know why, or if it still does, but the fact that they did, 12 years ago, when I asked, is why I've been so outraged to hear of how poorly treated some donors have been since.

  Again, best wishes.  You're amazing, and we know just how amazing you are.

[elephant]

Dear PattyD,

I had a very short time between my first blood test and laparascopic donation, but it was a pre-emptive donation to avoid dialysis, so everything moved fast.

I was out of work for 3 1/2 weeks, but really could have used another week at least.  I was placed on Family Leave & Short Term Disability, so I only used a week of vacation and lost no pay.  However, my days of for testing and checkups after also chewed up vacation days and couldn't be attached to the disability leave. 

Keep us updated on your progress

Love, elephant

[Fr Pat]

Dear Patty,
     Hi. I gave "non-directed" to an unknown person, so that is different from giving to someone slightly known. (My story is in the "experiences of other living donors" section of this site.)
     Some hospitals may be deliberately slow in communicating test results and planning the next step, in order to give the potential donor plenty of time to think it over and back out gracefuly. So if you still want to go ahead and don't hear from them for a few days, call or send an e-mail asking about it so that they know you are still interested.
    Here are a few thoughts I have gathered over the years from reading the experiences of many donors, that you might want to keep in mind.
--- You might want to clarify in your own mind what you might (consciously or unconsciously) be expecting after the donation. Some donors found that they had been expecting (or even counting on) a lot of gratitude from the recipient or a life-long bond with the recipient. This often happens, but not always. So if you decide to go ahead and give the gift, be careful not to have any "strings attached" in the form of emotional pay-back from the recipient.
--- Keep in mind that while kidney donation is rather safe it iS major surgery and has its risks. Some donors have had short or long-term ill effects, physical, mental or financial from the donation. So a donor has to be able to freely accept the risks.
--- You might want to clarify in your own mind ahead of time how you would feel if it turned out that you did not LIKE the recipient once you knew him. What if his beliefs, life-style, etc. were very objectionable to you? Would you still be willing, or would it depend on whether the recipient was "nice' in your mind? It can be wise to have your head clear on this BEFORE meeting the recipient.
--- Recovery time varies a LOT from one donor to another. Some return to work quickly (2 weeks) while others need months. And lingering fatugue and efect work performance for weeks/months even when you return to work. No one can assure YOU of how YOU will recover. So, hope for the best but have your back-up plans in place in case you MIGHT have a longer recovery.

     Hope some of this helps. Reading over past topics here will be helpful. Feel free to keep asking questions. There is no such thing as a dumb question. It's only dumb to NOT ask questions.
     best wishes,
   Fr. Pat

[Oldnslow]

I donated to my brother so I cannot address the discussion of not knowing the recipient.

Work was very supportive.  Especially when they found out our insurance did not have to pay.

I went back to wrk after 3.5 weeks.   In retrospect, too soon.   Fatigue was real and the weight limitations must be adhered too.  Even though colleagues are supportive, they cannot realize how pooped you really are. 

Not everyone will be supportive nor Approving .  Some will think you are a hero.   In the end you need to make up your own mind and find your motivation.

Major surgery, not minor.  Real risks.   Doesn't always turn out peachy.

I' m glad I helped my brother.  I don't think I could have been comfortable with myself if I had not.  More sure now then before.