Hello

[Fleebee]

Hi my name is Shauna from the UK. I am hoping for a pre-emptive  transplant from my sister. My gfr is around 17 but dropping around 1 or 2 points a month. My sister seems keen but has recently told me she's 'too busy' to contact the transplant coordinator. My train of thought is that if she's too busy to make a phone call, with the best will in the world she ain't gonna be able to donate!  Still love her to bits and my neph says I can be put on the cadaver list . Found it very interesting reading through the threads x

[Darthvadar]

Hi Shauna....

  to IHD....

You'll make lots of good friends here, and will get (and hopefully, give) plenty of support and advice...

I'm 'next door' so to speak... I'm in Dublin....

Wish you luck with the transplant...

God bless....

Darthvadar, Moderator.

[MooseMom]

Hi, Shauna.

Uh, your sister is "too busy"?  Oh my...  That doesn't bother you?  Do you think you'd prefer it if your sister simply told you she didn't want to donate?  I think you are absolutely right in assuming she doesn't want to donate and in getting on the cadaveric list ASAP.  There have been quite a few IHD members who have been strung along by potential donors (particularly family members) who want to donate in theory (and want to be seen as being something of a hero) but not in practice, so your story is more common that you'd think.  I hope that if you do end up facing dialysis, either your sister will decide to go through the testing or that, at the very least, she will be honest with you.

If you DO end up spending time on dialysis, I hope that you will be able to forgive her and will still love her to bits.

Apologies if I sound harsh, but here on IHD, we have a special place for people who say they'll get tested but then don't for all kinds of fantastical reasons. 

[RichardMEL]

G'day Shauna and welcome to IHD!

Sounds like "too busy" is code for "I'm scared/unsure/worried/etc but don't want to upset you" - of course you know your sister and I don't, but it could well be that. This is a huge decision for anyone, and once the reality starts to hit - it's not like loaning some money or saying hey you can crash on my couch for as long as you need... it's a part of her.

I honestly don't know what I would do in your situation at this point (apart from await the cadaveric list)... if it was me I would feel very much to not pressure her about it or anything (and I'm not suggesting in any way that you are, of course). Still, how do you reconcile the idea that she seems keen but then is too busy. Of course "seems keen" can be anything. Sometimes people will say yeah it's a good idea and I'd like to do that when the need is not that "real" or close... yet when things head to "crucnh time" like you're headed now, it all becomes more real and immediate and that good intention becomes "OMG!" sort of thing - for some people anyway.

I guess all you can do is just keep her up to date with where you are at (since she's showed interest) eg: "I saw the doc today. they said my GFR's now 16 and I may need to start dialysis in the next 6-9 months..." and let her join the dots.

Donors always have the option to pull out of it, even as they go into the op, and that needs to be respected - as difficult as it would be for we potential recipients!!! And of course, who knows if/when she is tested how that will go.

Just my humble opinion - one of many - but I recognise this is difficult for you.

I hope her "schedule" clears up.. but more that she can handle things emotionally... as difficult as it is for you I'm sure it's difficult for her too.

Anyway this is  place for you to vent and get this stuff on your chest, get opinions/views and support so welcome again to IHD!

[Angiepkd]

Hi Shauna and  !  Lots of help and support here on IHD.  I am waiting for a transplant reschedule date.  My husband is my donor. Throughout this process I have always said "you find out who your friends are"!  I did not ask anyone, but I had so many people offer to be tested and then find some excuse not to follow through. Some even did the tissue typing, were told they were a good match and then disappeared.  They are better IMHO than the family members who didn't even offer to be tested.  That hurt.  I think I would give anyone in my family anything I had to save their life.  But I try not to judge, since nobody wants my organs lol!  I hope your sister comes through for you.  I imagine it is quite scary for a healthy person!  Best of luck to you!

[Poppylicious]

Hello Shauna, and  from another UK-er.

Sorry that your sister is 'too busy' to make that call right now.  It could be nerves. It could be pressure from someone else (boyfriend/partner). Or it could simply be that she doesn't realise that the sooner she starts getting tested the less likely you'll be to need dialysis (I may be wrong but I think that in the UK you need to be on dialysis to be on the list for a cadaveric kidney). 

Donors always have the option to pull out of it, even as they go into the op, and that needs to be respected - as difficult as it would be for we potential recipients!!! And of course, who knows if/when she is tested how that will go.

It might be useful to let her know that by agreeing to be tested she's not tied into a contract! She can pull out an anytime (as Richard says, right up until she enters the operating theatre) and you don't need to be told that she's pulled out. The Living Donor Coordinator can add some spin to the situation if anybody pulls out but doesn't want their recipient to know.  Also, the LDC and the HTA (Human Tissue Authority) won't/shouldn't let anyone donate if they don't think they understand the consequences or if they think they're not 100% into donating.

Keep visiting!

 

Poppylicious, Moderator

[Fleebee]

Thankyou for your replies. It's good to hear from others perspective.  The other issue with my sis is that she is a complete control freak! I think that she might feel a reluctance to hand the reigns over to her husband!

Either way I will remain positive and face each day as it comes

Ta again xx

[kristina]

Hi my name is Shauna from the UK. I am hoping for a pre-emptive  transplant from my sister. My gfr is around 17 but dropping around 1 or 2 points a month. My sister seems keen but has recently told me she's 'too busy' to contact the transplant coordinator. My train of thought is that if she's too busy to make a phone call, with the best will in the world she ain't gonna be able to donate!  Still love her to bits and my neph says I can be put on the cadaver list . Found it very interesting reading through the threads x

Hello, I do hope your sister has not second thoughts...?

Perhaps it might be a good idea if you have a little talk with your sister to find out how she feels...?

Best wishes and good luck from Kristina...

[Charlie B53]

I can totally understand fears a Brother or Sister may have to being a donor.  Aside from a fear of needles, hospitals, and surgery, the idea of losing a part of your body can be absolutely terrifying.  They may also be wondering 'What IF...'  As in what if I succumb to the same fate as my Brother (or Sister) that is now facing Dialysis, if MY remaining kidney begins to fail.  If I give up one now makybe I won't have the time that it takes for both kidneys to fail.

We are the sum of our fears.  Somebody said that once, or was it 'The sum of all fears' either way it does take a very special person to donate, and sadly there isn't enough people with that kind of courage.

Don't blame your Sister, understand her and tell her that is O.K. to be scared.

Tell her about this site, or maybe not.  Since I am still very new here I don't know if there is a section for donors, other than the Memorial to those deceased donors that have made such an improvement in others lives because they were willing to share their body to help make that difference.  Yea, a thread, or section dedicated to those LIVING volunteers that donated to improve another life, now that would be a place to send potential donors.  Share the confidence and caring for others.

Give her a hug, and tell her that you will continue to love her no matter what she decides.

Wishing you well,

Charlie B

[talker]

Hi my name is Shauna from the UK. I am hoping for a pre-emptive  transplant from my sister. My gfr is around 17 but dropping around 1 or 2 points a month. My sister seems keen but has recently told me she's 'too busy' to contact the transplant coordinator. My train of thought is that if she's too busy to make a phone call, with the best will in the world she ain't gonna be able to donate!  Still love her to bits and my neph says I can be put on the cadaver list . Found it very interesting reading through the threads x

Hi Fleebee
 

Ah, one way or another it will all work out .

Keep the spirit up and 'believe'. 

talker