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Author Topic: Missed transplant and family war  (Read 2873 times)
onestronglittlelady
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« on: April 17, 2011, 12:18:40 AM »

I just need to vent, and get some advice from people out of my family circle. Long story short, 5 years ago when my first transplant started to fail my sister offered hers. She was tested and a confirmed match. Last Nov. when my function was low enough to do dialysis or the transplant, my sister hit me with some sad news. The entire family knew she was acting weird, and thought it was the medications for her restless legs and ADHD. Actually she had been abusing prescription pain medications, and aderall. She is finally in rehab, but can't donate until she is out of rehab for 5 years. Yes I'm sad, that I am on dialysis, but thankful she is getting the help she needs, and didn't die of an overdose. Now my family can't let it go and they bring it up all the time. I forgave her a long time ago, and accept everything happens for a reason. I just don't know what to do when others in the family start saying bad things about my sister.
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Chris
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WWW
« Reply #1 on: April 17, 2011, 03:04:17 AM »

Well if I could, I'd use duct tape on some of my family, I need peace and quiet!
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
boswife
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us and fam easter 2013

« Reply #2 on: April 17, 2011, 06:06:37 AM »

Families are tough...  I have a great one but for me, when one has a prob with another, i let it be 'their' problem.  I can say its the hardest thing in the world for me as i am the 'peacemaker'/'problem solver' of the rest of my surroundings, but for family, i've found that an opnion on one or the other is thought to be taking sides and thats not what it is.  It's just saying what i feel, sooooooooooo, i generally just nod and listen as..................this too shall pass.  WEll, hopfully for you as well.  Im sorry about the 'lost transplant'.  that has to be hard on you in all directions espacially since you already know what a transplant gives.  I hope for something else to come along and save the day  :flower;   Im glad your "onestronglady" as you will get through this too, i just hope things settle sooner than later  :pray;   :cuddle;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
jbeany
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Cattitude

« Reply #3 on: April 17, 2011, 10:17:36 AM »

Ouch, that's a tough one.  I'm glad you've been able to let it go, for your own piece of mind. 

I get how hard it can be when family or friends think they need to maintain that righteous indignation on your behalf, though.  I've got friends still livid about how my ex ran off when I got sick, or still complaining about how my step mother took off with every dime of my dad's money after he passed, and didn't even return most of my mother's belongings to me.  I've let go of the anger because I couldn't live with it and be whole.  But they seem to think they wouldn't be supportive if they let it go as well.

All I can say is keep reminding them how you feel about it and also reminding them that trying to load guilt onto her isn't going to help her stay clean.  She needs to know that they all love her.  "Sis and I have dealt with that between ourselves.  We're at a good place and we're supporting each other.  I need you to let go so you can support her too."

A similar conversation has helped me with some of my family and friends.  Some of them, however,  just won't ever let go.  I just nod and change the subject when they get started.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

rsudock
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will of the healthy makes up the fate of the sick.

« Reply #4 on: April 17, 2011, 08:31:52 PM »

So your family is still upset with your sister for having an addiction problem and messed up your chances for a transplant right? These family members that are sooo quick to judge, have any of them stepped up to be tested for you in your sister's absence?
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
onestronglittlelady
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« Reply #5 on: April 18, 2011, 10:48:37 PM »

Thank you all for helping me with some new ideas. When things don't go as planned, I accept that it is all part of something I may not see, and it may be for reasons I don't understand. I do my best to stay positive no matter what, as science has proven negative feelings = negative life. I have too much sunshine for that! Hugs to all the wonderful people here!
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greg10
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« Reply #6 on: April 19, 2011, 09:55:05 AM »

.. Now my family can't let it go and they bring it up all the time. I forgave her a long time ago, and accept everything happens for a reason. I just don't know what to do when others in the family start saying bad things about my sister.
If I were you, I would have a private conversation with each member of the family and express your feeling about the matter and stress to them that you accept the situation and you have forgiven your sister.  Tell them to stop criticizing your sister and tell them that it is probably for the best that your transplant is delayed - you never know what advances in transplantation immunology have enstore for you and that a transplant 5 years from now could result in better compatibility and fewer drugs to supress your immune system.
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
KrazeeBrod
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« Reply #7 on: May 28, 2011, 09:06:13 PM »

I agree with Greg10... the only difference being, I would have a "family meeting" rather than one by one (if that is what he was suggesting) and quietly but firmly ask them to stop their behavior.  Your donor obviously has a problem of her own and they need to be supporting BOTH of you, not criticizing and trying to make her feel guilty.  Their behavior, in my opinion, is self-serving, especially if they are not stepping up to the plate and offering to be tested for a kidney donation.

Just my opinion. Good luck!
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