I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: The Noob on November 22, 2011, 05:43:20 PM
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tx nurse called us today, wanted to tell us before thanksgiving. DH is now officially on the LIST!
thank God is all i can think to say. and now we wait.
long road getting here, 18 months of a mountain to scale. wait list in ohio is 18 months to 2 years. we are still undecided about SIL donating, will discuss it some more with him.
home hemo going wel if i can keep DH settled. i am weary of being the waitress. worn out all the way around.
however, get to go to ultrasound in the morning to see my new grandbaby, daughter is 5 months now. might get to know gender?
i need a day off, a bath, and some respite. other than that i'm ok.
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It would great, Noob, if he got the call and you would NOT need your SIL's generous gift!
Grandbabies are simply wonderful. I'm so happy for you!
And just simply congratulations for this good news. Now get some rest!
:flower; :flower;
Aleta
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thank you! yes i am hoping to come back tomorrow and post Pink or Blue..LOL
and even more so on the list thing. he is a fine young man. but want to make sure. toledo is so slow. but great docs. i asked tx nurse today if we went ahead with donation how long till surgery, she said february???
i was trying to avoid this because my daughter will be heavy into pregnancy then, it will be the worst part of the winter in MI and who will stay here and tend to everything while we are in the hospital? the baby is due in april. i will not put them through that when they're having their first child. just won't do it.
some of you here won't agree with me about SIL, but i want to make sure he is not taken advantage of in any way. and that he really understands it all the best he can.
i feel so sorry for my hubby, he posted the news on his FB, and not one person said a word. none of his former co-workers, many he had trained, most he had worked with long years, some over 20 yrs, on the ambulance and in the fire service. and not a word. even worse, none of his own children on his FB said a word either.
screw em i say, to be blunt. they don't care who does all the work or makes the sacrifices, as long as it ain't them.
:rant;
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I agree with you, Noob, that having your SIL donate right when your daughter is in the last stages of pregancy is a bad idea. I don't think any of you would be comfortable with that. I don't know if there will ever be a perfect time for your SIL to undergo surgery; it's just all around bad timing. The good thing about NxStage is that it will keep your husband in better health for when your SIL and your daughter have a bit more breathing space.
What a gut wrenching experience for your husband to have had no response from anyone to his good news. Maybe people are busy with Thanksgiving coming up; maybe lots of his ex coworkers are travelling or something. I'm so sorry.
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YAY!! :yahoo; :2thumbsup;
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ah mom, if it were so. but this is on his FB..and they are all posting other things, right after he posted the news. even his kids posted things after that. not a word. at the least they could say "good news" or something.
i've found that the response so often we've gotten when telling others about his CKD is:
Fear...Guilt...Blame
fear they will be asked to do something. guilt because they refuse/ignore/don't want to be supportive or anything else..and then blame..us..for the latter.
my side of the family is the opposite. when a nurse told us 2 years ago that we'd really find out who our real friends/family were..she wasn't kidding.
just as well don't you think. no time or energy for such nonsense and no i don't feel sorry for them or make excuses. they all recently took a long vacation in FL..but couldn't scrap together 50 cents for a dollar store card for their dad.
screw em..nuff said..
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Well, Noob, I kinda know how you feel. I don't have any family close by, but my husband's family are all here in our small town. He is pretty much estranged from his parents. His father is nice enough but is a coward, and his mother is batshit crazy. His ex-wife is a manipulative liar (I've never met her, but this is what her own sister has told me), and two of his kids haven't spoken to him in 7 years. Now, I personally don't want any of these people to be calling me up and making thoughtful enquiries into my health, but not once has any one of them...not even his own parents...called to ask my husband if there is anything he might need in light of our circumstances. He has had no support from any single person in his family, and they are literally a five minute drive away from us! So I feel badly for your husband like I feel badly for mine. People are sometimes just really crappy, and there's not a damn thing you can do about it except to protect your own feelings, and if that means surgically removing them from your own life, then so be it.
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oh so well said Mom!
hey i am going to be knitting BLUE booties..*grin*
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Congrats on the boy!!!!! :2thumbsup;
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new grandson..4 months away!
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Great news about the list and the baby boy!
I really think that many people do not even know what it means to be "on the list." It's some mysterious, esoteric and vague idea and they really do not know the significance of it. Most people think you magically get on the list for an organ bank the moment you are diagnosed with kidney failure. And they don't know what to say or ask. I hope DH keeps posting on FB, keeps educating family and friends.
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Yay! We have an IHD grandson on the way! Noob, you DO know that ALL grandpunkins are to be shared here on IHD, right???!!!! :yahoo;
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Lovely scan of new granson, Noob. Grandies make the world go round.
And congrats on your hubby making the list. Word of advice - get ready: my experience is you can never be ready enough. Best of luck!
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thank you so much! :grouphug; :grouphug; :grouphug;
just sitting here finish rest of treatment and did bunch of cooking for big dinner tomorrow. may you all have a peaceful holiday!
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Fantastic news about both the List and the baby, Noob!! How exciting for you all!
About the live donation; obviously February would be too soon, but I'm assuming a date could be set for late summer or early autumn if everybody was still willing to go ahead? Of course, you could have a 'safe word' so that if SiL finds the need to 'pull out' too great (because of baby, etc) nobody feels too disillusioned or guilty. Now that he's on the List though this is something you can all talk about again when the baby is here.
;D
And I'm so sorry that none of his friends or family reacted to the news when posted on FB. Give him a BIG *huggle* from me ... and have one yourself, too.
:cheer:
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thank you family.. :grouphug; :grouphug; :grouphug;
thank you Nxstage. we had a wonderful family day. hubby felt good, helped me cook, he made deviled eggs and homemade apple pie from scratch, plus had and kept both wood stove going and we cooked dinner in that. we had a great meal and he and the menfolk went to gun range after. he chopped some wood up and it was a warm peaceful wondeful day. this would not be possible without Nxstage.
as for the "other" family members, they are well versed in all the dialysis and donating issues and so on. they are just self centered. no other description. some of them and some of former co-workers work in the medical field and are quite familiar with all the issues too. i personally only have peeps on my FB who are rel friends/family. no time or energy for anything else.
hubby and i have come to an agreement that he will most likely wait on the list kidney. he is very concerned what he would do after tx as far as work, insurance, etc. he feels so very good now, he doesn't mind waiting.
heres a pic of our family meal..what a blessing! and again, thank you :grouphug;
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Love the photo Noob! That food looks amazingly divine; my mouth is watering!
;D
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If hubby is doing well physically and emotionally on NxStage, then I think you would both be more comfortable waiting for a cadaveric kidney. I suspect that you would never feel really good about having your SIL donate under these circumstances (ie with a baby on the way). If your husband were to become really ill and time became an issue, I'm sure SIL would still be happy to donate in an emergency, so at least that could be a good back-up plan. I don't know if you/hubby would be interested in ECD kidneys, but if his health were to deteriorate, that's an option. But this is the beauty of more frequent and better dialysis. It is a much, much better bridge to transplantation, keeping him healthy until the perfect deceased kidney comes along.
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:thumbup;