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| | |-+  I think I am actually feeling pretty okay atm
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Author Topic: I think I am actually feeling pretty okay atm  (Read 772 times)
Naynay99
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« on: June 14, 2018, 12:14:23 AM »

Hey.  So I spoke to my brother and he back pedaled on getting tested as a possible donor.  I know he is concerned that his girls could end up with whatever illness shut down me and my sisters kidneys, and that they might need a kidney someday, so he doesnít want to ďwaste itĒ on me, which is understandable.  But he wonít say that.  He wonít say anything much at al. 

So I have written him off as a possible donor, and have made peace with that bc having false hope was worse than having none.  Anyway I donít want his kidney now anyway, bc I would feel forever guilty if my neices ever did get sick and he couldnít give them a kidney bc of me. 

I honestly never really believed he would donate when he offered, so I am not all that surprised. I donít mean to sound ungrateful, I know just the gesture of offering is a big deal.  But I think the whole thing was just giving me anxiety and would have mucked up whatever good relationship we have now.

But considering all of that, I am actually feeling pretty okay at the moment.  My parents are coming up this summer to visit bc I didnít want to travel so far away from my tx center.  So Iím excited to see them.  My best friend is helping me check local stuff off my bucket list this summer.  Iím going to lots of concerts.   And I have only 2 weeks of work left till vacation.   

Physically i still sort of feel like crap, but look forward to having more energy this summer to exercise since I wonít be working all day and be so tired.  I am still following this crappy pre dialysis renal diet where I canít eat much of anything.  But Iím doing a decent job sticking to it and I have been slowly losing some weight which is a plus. 

Anyway, my moods are not always the most stable so Iím sure I will freak out again, but at the moment I am doing pretty fuucking okay with dealing with all of this.  Still overwhelmed and all but I am focusing on just trying to enjoy still being dialysis free and live day by day for now.  It is my 29th kidnaversary next month and it still has some fight left in it so I suppose I should too.   

No real purpose for this post, no need to reply.  Iíve been reading other ppls posts lately which is helpful but havenít been writing anything bc I havenít really had anything useful to say.   Idk.  Anyway just wanted to check in and say hi and wish u all a good week.  Take care.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: June 14, 2018, 04:23:06 AM »

Thanx for your update Naynay, I'm glad to hear you are doing not too bad, are still pre D and that you have quite some things to look forward to.


Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Marilee
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Hubby's a PD Person - I'm 'support'

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« Reply #2 on: June 14, 2018, 06:28:29 AM »

I get what you're saying about being 'forever guilty' with a living donor's kidney. My hubby has refused all offers because he doesn't want A) the donor kidney to fail just like his own did and it would be his fault; B) the donor to get something like diabetes down the road and need that kidney themselves. He also fears the surgery and the anti-rejection meds. He's resigned himself to finishing up this life on dialysis (or that bio-mechanical artificial kidney that they're working on at The Kidney Project https://pharm.ucsf.edu/kidney, if at all possible in the future).

I'm glad that you've made peace with your brother and that you're 'treading water' right now, and doing the diet & getting good results! Yes!
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
MooseMom
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« Reply #3 on: June 14, 2018, 08:01:28 AM »

There is certainly something to be said for receiving a kidney from a cadaveric donor.  No guilt, no need for hero worship, no lifelong emotional and psychological ties.
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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."
Naynay99
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« Reply #4 on: June 14, 2018, 08:40:03 AM »

Yeah. I would probably gladly accept a live donation from a good friend, though, as there is no history of kidney disease in their family.  Also there is no obligation for a non relative to do so, so I would feel like they were doing it just bc they truly wanted to and not bc they felt there was some weird familial expectation or something.  Idk.

I will say that while there are some crappy side effects from the anti-rejection meds, they arenít so bad.  Then again I wouldnít have had a teenagehood or adulthood without them so maybe my perspective is unique. 
anyway thanks for the support.  Take it easy. 












Sp mod Cas
« Last Edit: June 17, 2018, 09:44:03 AM by cassandra » Logged
GA_DAWG
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« Reply #5 on: June 14, 2018, 09:31:50 AM »

Marilee, I have the same thoughts on a living donor. I would forever fear they would develop kidney problems, or have a child that needed a kidney. I made clear I would not accept one from my kids. I am the only one with kidney failure in the family that I know of, but kidney problems are pretty common as is high blood pressure that I never knew of before this started.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #6 on: June 17, 2018, 06:32:46 AM »

Great attitude Naynay99. Now just keep remembering that one day you will get a kidney. Hopefully a live donor, but if not, a dead one will do.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
kristina
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« Reply #7 on: June 18, 2018, 02:12:54 AM »

Dear Naynay,
I agree with Paul about your great attitude and your time surely will come and hopefully soon.
Best good-luck-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.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Naynay99
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« Reply #8 on: June 18, 2018, 12:33:24 PM »

Thanks Paul and Kristina.
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