Being presented tomorrow to get on the "list"

[robertscz]

my transplant coordinator just called me and said she is presenting me tomorrow and doesnt see any reason to be turned away!  i got a little bit lucky in the fact that i am only 35 years old and do not  have any other health issues, so the only tests i needed to complete were a heart echo and an abdominal scan.  both came back perfectly fine.  so she should be calling me tomorrow morning with the good news! 

the even better news for me is, i have 2 donors that have already been blood tested as matches, and once i am approved my insurance will give the go ahead for both of them to go through their health screenings!  assuming that nothing comes up with them, the surgeon that i am going to said that i can be transplanted within 6-8 weeks!!!  so this is all very good news considering i just went into kidney failure and onto dialysis this past june.  getting everything done by xmas would mean only about 6 months of my life needed to be altered which when i read some of the scenerios on here is not half bad. 

so my fingers are crossed that everything goes smoothly tomorrow morning and that my fiance and my co-worker get their work-up done in a timely manner with no issues!  finally some light at the end of the tunnel and something to keep my head up and look forward to! 

robert

[iolaire]

Congratulations. 

I had a very easy transplant (deceased donor), one thing I was left feeling is happy that my wife was not in the hospital at the same time.  Should both your donors be viable I'd pick the coworker (assuming that person has their own support network) to leave your fiancé mobile and able to help care for you.   Honestly my wife didn't have a ton to do but as I was very weak arriving home it was good to have her mobile and able to take time off from work to drive me to the clinic twice per week.  I'd hate for your primary care giver to have some complications and both of you having a hard time at once.  (If you have an additional support network nearby that could care for the both of you then that probably would not be an issue.)

[robertscz]

Congratulations. 

I had a very easy transplant (deceased donor), one thing I was left feeling is happy that my wife was not in the hospital at the same time.  Should both your donors be viable I'd pick the coworker (assuming that person has their own support network) to leave your fiancé mobile and able to help care for you.   Honestly my wife didn't have a ton to do but as I was very weak arriving home it was good to have her mobile and able to take time off from work to drive me to the clinic twice per week.  I'd hate for your primary care giver to have some complications and both of you having a hard time at once.  (If you have an additional support network nearby that could care for the both of you then that probably would not be an issue.)

actually, my dad lives down the street from us as well lol and works from home so he will be able to take care of both of us if needed.  i will take the one that the dr's tell me is going to be a better match if both test out ok.  can i ask you why you ended up going with a deceased donor if your wife was a possible match?  or was she not and at the time you were thankful that she was not?  i got a little confused by your post so i apologize. 

[iolaire]

can i ask you why you ended up going with a deceased donor if your wife was a possible match?

Very fair question.

I did not ask my wife to get tested but she was willing.  I also have a brother who I hope would good match but he would probably need to do some health maintenance to get to a point where he can donate.  He had appendix issues years ago and still has stomach pain.  I did send him the information to get tested but didn't pressure him to move forward.  (Hopefully now that he has insurance he will take care of whatever problems he has.)

I've felt like I'm healthy and dialysis is was good so if I was ever going to wait for years for a kidney it should be now.  I really had low urgency for the transplant.  But I also know that 15-20 years from now if my transplant fails I might not have as much freedom, my health may be worse, I might have difficulties with dialysis and at that point I might have much more urgency. 

A few months ago I would not ask others to donate (and accept the risk to their bodies) because I have the freedom to wait, in the future I might have much more need and need to reach out across my network to ask for a donation.

It will be years until I learn if that was a bad choice, but so far it seems to be ok.  My dialysis remained easy, I never stopped urinating, I was able to keep my labs under control  except for the PTH which was out of range even with Sensipar, and I was healthy enough to continue traveling internationally for fun.  And so far my deceased donor transplant is going as good as I could ask for.

[Xplantdad]

Hey Robert, thanks for the good news text today. Congratulations!

Sorry I haven't been on this site in a few days but was going to catch up tonight. As always-you've got my number if you have any questions! 

[robertscz]

can i ask you why you ended up going with a deceased donor if your wife was a possible match?

Very fair question.

I did not ask my wife to get tested but she was willing.  I also have a brother who I hope would good match but he would probably need to do some health maintenance to get to a point where he can donate.  He had appendix issues years ago and still has stomach pain.  I did send him the information to get tested but didn't pressure him to move forward.  (Hopefully now that he has insurance he will take care of whatever problems he has.)

I've felt like I'm healthy and dialysis is was good so if I was ever going to wait for years for a kidney it should be now.  I really had low urgency for the transplant.  But I also know that 15-20 years from now if my transplant fails I might not have as much freedom, my health may be worse, I might have difficulties with dialysis and at that point I might have much more urgency. 

A few months ago I would not ask others to donate (and accept the risk to their bodies) because I have the freedom to wait, in the future I might have much more need and need to reach out across my network to ask for a donation.

It will be years until I learn if that was a bad choice, but so far it seems to be ok.  My dialysis remained easy, I never stopped urinating, I was able to keep my labs under control  except for the PTH which was out of range even with Sensipar, and I was healthy enough to continue traveling internationally for fun.  And so far my deceased donor transplant is going as good as I could ask for.

thanks for the response!!  i wansnt trying to be rude in questioning you, was just curious is all!  and i understand how you feel about "asking" for people to get tested.  i could not do that either, but i told anyone that i was close to if they wanted to spread the word than i would not tell them not to.  my fiance is one of those w 1500 "friends" on facebook and wrote up a nice letter with a picture of us that really traveled well online.  my dad also made a flier explaining the situation and that went well also in our community.  i actually had over 10 people that we know of who started the process, but the hospital will only do work-ups on 2 at a time.  so i have been very lucky with the support i have received but totally understand your view of not having it in you to actually ask people, because i couldnt do that either. 

Coordinator called this morning with the good news that i am added to the list and my donors may now be tested, so hopefully its not too painfully long of a process for them to go through theirs and we can plan the surgery shortly. 

Bruce, thanks for the kind words yesterday, i will keep you updated!!! 

[iolaire]

Coordinator called this morning with the good news that i am added to the list and my donors may now be tested, so hopefully its not too painfully long of a process for them to go through theirs and we can plan the surgery shortly. 

That's good news!  A good side effect of your donors being tested is they get a very good pre-screening for risks they might not be aware of.

[robertscz]

Coordinator called this morning with the good news that i am added to the list and my donors may now be tested, so hopefully its not too painfully long of a process for them to go through theirs and we can plan the surgery shortly. 

That's good news!  A good side effect of your donors being tested is they get a very good pre-screening for risks they might not be aware of.

do potential risks that may come up affect them being able to be a donor, or can they be addressed prior??

[iolaire]

do potential risks that may come up affect them being able to be a donor, or can they be addressed prior??

This will be one of the best heath checkups they have ever had. Yes, some issues come up that can be fixed, others like pre-diabetes probably will mean they can not be a donor. I would not worry a lot about that if they are young and healthy.   But the good factor is it will be an early warning if some issue is found.

[robertscz]

do potential risks that may come up affect them being able to be a donor, or can they be addressed prior??

This will be one of the best heath checkups they have ever had. Yes, some issues come up that can be fixed, others like pre-diabetes probably will mean they can not be a donor. I would not worry a lot about that if they are young and healthy.   But the good factor is it will be an early warning if some issue is found.

ok.  my co-worker is going to go ahead with the testing first, the hospital called today and said basically 1 at a time.  my co-worker is 44yr old and my fiance is 27.  so the thinking of the hospital is that my co-worker can give hers to me now, and then in 20+ years if i need another one, my fiance will be in her mid 40s as well..... as apposed to the other way around, 20+ years my co-worker would be too old to give me a second kidney.  and she has been getting regular bloodwork done for the past years with no issues... not on any blood pressure/cholesterol meds and not heart issues that she knows about.  so hoping that this turns out to be the one, she is going to do the 24hr urine test next week and then will head to tampa general the first week of Nov.  hopefully things go as planned i will be set up for surgery end nov/ beginning dec.  thanks for that quick responses!  im super nervous now because its totally out of my control.... drives me nuts!!

[Xplantdad]

do potential risks that may come up affect them being able to be a donor, or can they be addressed prior??

This will be one of the best heath checkups they have ever had. Yes, some issues come up that can be fixed, others like pre-diabetes probably will mean they can not be a donor. I would not worry a lot about that if they are young and healthy.   But the good factor is it will be an early warning if some issue is found.

Robert-Exactly what Iolaire said! It's literally been a lifesaver for some folks I know...that were signed up to be potential donors-but found out that they had life altering illnesses that they weren't aware of. With all of you being young, there shouldn't be any issues \

Let us know what's going on...

[Xplantdad]

do potential risks that may come up affect them being able to be a donor, or can they be addressed prior??

This will be one of the best heath checkups they have ever had. Yes, some issues come up that can be fixed, others like pre-diabetes probably will mean they can not be a donor. I would not worry a lot about that if they are young and healthy.   But the good factor is it will be an early warning if some issue is found.

ok.  my co-worker is going to go ahead with the testing first, the hospital called today and said basically 1 at a time.  my co-worker is 44yr old and my fiance is 27.  so the thinking of the hospital is that my co-worker can give hers to me now, and then in 20+ years if i need another one, my fiance will be in her mid 40s as well..... as apposed to the other way around, 20+ years my co-worker would be too old to give me a second kidney.  and she has been getting regular bloodwork done for the past years with no issues... not on any blood pressure/cholesterol meds and not heart issues that she knows about.  so hoping that this turns out to be the one, she is going to do the 24hr urine test next week and then will head to tampa general the first week of Nov.  hopefully things go as planned i will be set up for surgery end nov/ beginning dec.  thanks for that quick responses!  im super nervous now because its totally out of my control.... drives me nuts!!

You are right...it's out of your control

Deep breaths and relax...it will all work out no matter what. Don't give in to the nervousness...."YOU GOT THIS!"

[robertscz]

So Carrie, my donor passed the 24hr urine test, her coordinator called and said "ur kidney function is great you will do just fine with one kidney"! So they sent her a schedule for when she goes to Tampa.. It is only 2 days long and the only "tests" are an ekg, a chest xray and an abdominal scan... That's it! The test are meetings with Dr's, social workers, psychologists... But I was shocked when she got it stating only those 3 tests... She is in excellent health, my fellow pe teacher so fingers crossed that things may be looking better each day!!

[justagirl2325]

Excellent news and yes there's not much testing for donors.  I will be donating soon to my husband, I had to have a CT scan with dye (that was the worst) but other than that not too bad at all.

[iolaire]

Sounds good!  Best of luck for the next steps. 

[Xplantdad]

Robert, great news !