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Naynay99
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« on: July 16, 2020, 11:42:35 PM »

Hey. Itís been pretty quiet here lately. But wanted to share whatís going on w me with ppl who understand. Earlier this week I got a kidney offer call out of the blue!  Right on the same day of my current kidney tx 31st bday!  Crazy timing. 

I turned it down bc it didnít sound like a very good kidney.  Donor was Hep C + IV drug user, with history of drug use and high blood pressure, creatinine of 2.8. KDPI was like 60. And only a 3/6 match I think.   

I am confident I made the right call and my dr agreed.  Iím fairly young, not on D yet, and doing okay atm. But it was still hard to say no, worrying what if I donít get another offer for years.  The coordinator seemed pretty confident that I would  get another offer soon, esp if willing to consider a Hep C+ kidney, so Iím staying hopeful.  I guess at least it gives me hope they havenít completely forgotten about me (for a while amidst the pandemic and rising covid #s they pretty much stopped doing tx here). 

Anyway, wouldnít it have been cool for my new kidney to have had the same bday as my old one?!    Ah well.
Iím sure thereís a better one out there for me.  (saying that sounds pretty fcked up, like Iím just waiting for some poor soul w good kidneys to drop dead.,.)  I suppose this is what waiting feels like.  Wish me luck that my next call is THE call.   

Hope everyone is okay and staying healthy. Itís very quiet here lately, I stop by every now and again to read stuff.  I have been pretty isolated trying to stay safe myself.   Living alone, pretty much my entire social life has been cut off, which is hard.  Never felt so alone or cut off from the world.  But recently I have gotten to see a few friends by meeting up somewhere outdoors and hanging out while being 6 ft apart w masks on.  I think my cats and I have become codependent, we spend so much time together!  Lol
Take it easy.
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kristina
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« Reply #1 on: July 17, 2020, 03:22:12 AM »

Hello Naynay,
Perhaps you have done the ďright thingĒ for yourself by listening to your instinct!
Instinct is sometimes all we can rely on and for me it has always been an important factor in my survival (touch wood it continues like that for both of us!)
I wish you the best of luck and hopefully the ďright kidneyĒ comes along soon for you and please take great care to be at your healthiest when this most important call comes along.
Good luck and best wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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MooseMom
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« Reply #2 on: July 17, 2020, 10:59:12 AM »

I turned down 3 or 4 really funky kidney offers before the "right one" came along, precisely because of the reasons you've given, NayNay.  You are fortunate that you have the luxury of time, given that you are not on dialysis.  When I turned down offers, I figured that those kidneys would be a better fit for someone who was in a more desperate situation than mine.

It has indeed been very quiet here on IHD lately, and I hope everyone is doing OK.  So, thanks, NayNay, for checking in with an update.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
iolaire
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« Reply #3 on: July 17, 2020, 11:09:12 AM »

I'm glad you received a call to turn down Naynay99.  I think a creatinine of 2.8 would leave you in a worried state constantly so it seems like a fair offer to pass on especially when you are doing good.  Also glad you posted as those calls were so stressful.

I'm glad you are able to start do the outside social distancing thing with friends.  I have to imagine the staying hope is isolating by yourself - even with the cat companionship. 

Even with there being two of us, my wife gets fairly stir crazy, so doing happy hours every few weeks outside spaced out with a few single folks and another couple has been enjoyable.  We only every meetup with one single or couple so it seems fairly safe.  We usually have it BYOB for snacks and drink so we don't need to share stuff, which actually makes it easier overall to host.  But at July 4th it was more of a potluck but still with spacing.

Tonight we head over to the couple's backyard for a virtual wine tasting.  We picked up the four bottles of wine over lunch and each couple will have their own laptop to watch the wine tasting.  That should be a nice evening despite the 90* weather that feels like 98* after sundown!

Its hard to tell if the cats enjoy us at home.  They come for loving during the day, especially during video meetings, and otherwise sleep the day away when not demanding food!
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Simon Dog
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« Reply #4 on: July 18, 2020, 03:45:39 PM »

I congratulate you on what seems to be a smart move.

You do not even lose you place on the list, and it is unlikely you will wait years.

I was on D for 6 years 3 months and 5 days but, even so, I would have declined the offer you received (and the center I am using is not yet on board with Hep C + plus is OK - we'll cure that later if you or your insurance can afford it).   I might have taken a KDPI 60 but not with that baggage from that age donor.

This sort of situation is why it is important to think this out ahead of time so you can react instantly and send that kidney on to another home immediately if it is not the right one for you.
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Naynay99
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« Reply #5 on: July 19, 2020, 03:07:56 PM »

Yeah, Itís tough to turn a kidney offer down but I feel pretty good that I made the right decision.  There were too many strikes against it. I want a good one, for this to be my forever kidney to last me another 31 years like the first one.   

As a kid no one ever told me that a transplant didnít last forever, that it wasnít really a cure.  I naively believed that after my tx  I would live a charmed life bc I had my one big bad thing happen to me at age 12, like I got it over with early, and so it would be smooth sailing from there.  Stupid I guess, but I suppose kids still believe that life is fair... 

I get the being prepared so when u get a call u itís easier to make a decision.  But tbh this all still feels like just a hypothetical that Iím not sure I believe will really happen.  Idk. When I was first listed it was always on my mind and my heart would skip a beat anytime the phone rang and I saw it was one of my tx centers. I was crushed when a potential live donor changed their mind.   I was scared of being away from my phone for a second.  I couldnít live like that.   So now I am still hopeful but try not to get my hopes up too much.

 Idk.  Other people going thru this always seem much more wise and rational and together than I. Me, I am a fcking hot mess disaster walking around trying to act sane so the tx social worker wonít think Iím too crazy and kick me off the waiting list...

(Oh, re the Hep C+ thing, my tx center just recently started using them.  They make sure your insurance preapproves the DAA meds needed to treat it before hand.  My dr said considering taking one could shorten wait time a lot, and since a lot are from donors from opiate OD, they are often from young otherwise healthy ppl w good kidneys)

Sorry for rambling, I am kind of freaking out atm trying to figure out what to do re my job when school starts up again w this pandemic not under control.   My dr thinks teaching is too risky right now, and idk if they will let me work from home. So I may be forced to take a leave of absence or take a huge risk going into the classroom every day. Sigh.
 Well hope all are well and staying healthy. Take it easy.
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MooseMom
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« Reply #6 on: July 21, 2020, 11:46:34 AM »

 :cuddle;

There are few things that will make you a fcking hot mess disaster than waiting for a new organ.  It's not that hard to appear "much more wise and rational and together" on a computer screen.

And covid makes everything just that much hotter and messier and disastrous.

Please keep us updated on any new news, or any old news, for that matter.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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