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Rebecca from Michigan
Member
Username: Rebecca734
Post Number: 14
Registered: 01-2008
| | Posted on Sunday, October 03, 2010 - 02:50 pm: | 
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Hello everyone, I haven't written in a while but have been in contact via email with several on the forums. I donated to my brother 2 years ago. Everything was fine at first but now my brother has been having a lot of difficulty. He was acted thankful but his actions did not. He threw me a party of thanks and all of his friends were invited. I think it was a celebration of life for him but I have been reminded how much the party cost via his wife. I donated out of my home state. My brother was very aggressive pre transplant and I always thought it was out of fear but now I am not sure.
On a happy note my daughter got married two weeks ago and it was a wonderful beautiful wedding! I have attached a picture.
Becky
His kidney is now failing. He has had trouble with the ureter, and now the kidney. He was told they think they over immunosuppressed him. But hard to say. He told my sister that I wrecked his life. He has had 2 strokes since the transplant and i thought possibly that his aggressive behavior could be from the strokes but it is hard to tell.
As you can probably read between the lines I am very sad. Sad that the transplant has not been a success. Sad because my brother has behaved so poorly. I called him on our two year anniversary and said "Happy Sidney day",(Sidney was the name of the kidney). All he could say was oh... is it that day.
I still love donation an feel that outcomes can be positive but we should be prepared if they are not.  |
Hostess Rise
Board Administrator
Username: Rise
Post Number: 14524
Registered: 05-2003
| | Posted on Sunday, October 03, 2010 - 04:46 pm: |
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Hello Rebecca
Thank you so much for sharing your story. I have thought about you often and it is good hearing from you
Who is in this picture? Is this your daughter or you? Beautiful family.
About your brother, this is very sad for him. How in the world could his wife say such horrible words to you. Sounds like she is the one who could be responsible for your brothers thoughts. When one is ill the caregiver needs to step up to the plate and make sense of it all. Instead she is punishing everyone with her nasty tongue. What she is saying is not true at all. She probably told her husband not to go for the transplant.
If I were you, I would ignore all comments.
Anger and lack of appreciation is not going to help your brother. Hopefully he will realize this before it is too late.
sending you a beautiful hug filled with love and appreciation from all of us here.
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Chad
Member
Username: Horace_mann
Post Number: 125
Registered: 12-2008
| | Posted on Sunday, October 03, 2010 - 05:15 pm: |
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Rebecca – I’m so sorry for how things have gone with your brother, both in terms of his kidney failure and in terms of how he has treated you. When we are sick, stressed or tired we often say things that are completely disproportionate to reality. I’d dare say we’ve all done it at one time or another. Those who endure the struggles associated with organ failure and their own mortality have traveled a road, sometimes repeatedly, that only they can understand. There’s frustration, disappointment, discouragement and depression that sneaks into conversations and unfortunately spills over onto the very people who care the most for their welfare.
Yes, his life has been difficult but you didn’t wreck it. Be assured your courageous gift of life is seen by those who love him and love you as precious and life affirming. It’s been 2+ years since the transplant – that to me is a success. Would he have had those two years without it? The transplant road is at times rocky and fraught with its own set of risks and complications. Anyone on either side of a transplant, donors and recipients, has to at some point agree that traveling that road is better than the alternative. Sometimes that juncture in life fades so far into the past that the agreement is sadly forgotten.
Congratulations on the marriage of your daughter! She has a wonderful, selfless and brave mother who stepped forward when few if anyone else would. Part of the radiant smile I see on her face comes from the knowledge of the wonderful thing her mother did and the kind of person she knows her to be and I second the motion!
| Chad - non-directed kidney donor Oct. 2007 |
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max
Member
Username: Max
Post Number: 26
Registered: 09-2010
| | Posted on Sunday, October 03, 2010 - 05:21 pm: |
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Hi Rebecca,
Sometimes when things get turned upside down, people don't always think before they act and or speak - I knew this to be true - because I come from a very dysfunctional family. I'm always amazed at how cruel people (and sometimes even more so - family) can be.
I'm sorry you're going through this - It brings to mind my ever unanswered question - "why does bad things happen to good people"
I agree with Rise - just ignore all comments -
I would only add - that it's times like these that the Serenity Prayer has helped me get through some of life's - 'muddy waters' . . . . .
max
"We are continually faced with great opportunities brilliantly disguised as insoluble problems." |
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Rebecca from Michigan
Member
Username: Rebecca734
Post Number: 15
Registered: 01-2008
| | Posted on Sunday, October 03, 2010 - 05:56 pm: |
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I agree sometimes bad things happen to good people. And I know I am a good person. I look at the medical issues and emotional issues but being still human it hurts. I just want to take a back seat now.
My daughter's wedding was stunning. It was such a wonderful day. Those who missed it missed seeing such love. It was sad it was scheduled during all this family turmoil. But it has brought such joy. It was the most elegant, beautiful, love and friendship filled event that I have experienced in a long time.
I can only hope that my brother is getting therapy as he progresses through his trials. If he is relisted he should have someone to help him. And as you all remember I tried so hard to lose weight to donate before he had to go on dialysis. But that may have been the path he needed to follow to appreciate organ donation.
His wife is very self centered.And has not understood that my brother has 2 elderly parents (78 and 86) that are struggling through all of this also. They have been abusive to their needs having a son sick. But my parents have given up. They know they can not help or love. Sad but true.
I wish my brother the best and I still believe in donation. It doesn't have to be like this. I wanted the fairy tale but got the horror story.
Becky |
Alinds
Member
Username: Alinds
Post Number: 19
Registered: 09-2010
| | Posted on Sunday, October 03, 2010 - 08:06 pm: |
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I am so sorry you are going through this, Rebecca. In my darkest moments after transplant when I was very sick I secretly thought I regretted getting the transplant...it was just illness talking and even as I thought it...I knew it wasn't true. (btw, I do NOT feel that way now!!!) No matter what terrible things our minds tell us when we are going through this journey, it is important for recipients to NEVER visit their ill feelings upon their donors, who, in my opinion, are angels on earth.
You really do embody the definition of the selfless donor, who gave despite not getting the "reward" you deserve, which is eternal gratitude. By posting here, you are also helping other donors who might struggle with issues of not feeling appreciated, although your situation rises to a new level in my opinion.
I hope your brother gets the help he needs, but at this point I think you are wise to stay away from the negative energy and take care of yourself. The love you felt on your daughter's wedding day is what it is all about...and I am so glad you have that to focus on.
All the best...and bless you for donating. |
Heather
Forum Leader
Username: Heather
Post Number: 3084
Registered: 05-2003
| | Posted on Sunday, October 03, 2010 - 09:49 pm: |
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I am glad you posted here Becky. Hopefully some of the older donors will also see this and respond.
Will be responding to your email soon! Hang in there, ok?
Heather
Forum Leader - Living Organ Donation
Heather's Blog
EC Illinois, USA
Kidney donor to dad 12/1/99
Rush-Presbyterian-St. Lukes, Chicago
DONATE LIFE |
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LadyDi
Forum Leader
Username: Ladydi
Post Number: 2456
Registered: 03-2008
| | Posted on Tuesday, October 05, 2010 - 03:05 pm: |
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Becky,
I have no advice as I have not experienced such a situation. Just wanted to let you know that I hope things resolve for you. No matter what your brother or his wife think, you did the right thing and should have no regrets. All the best and congratulations on the wedding.
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Robin
Forum Leader
Username: Mamaru
Post Number: 701
Registered: 06-2008
| | Posted on Tuesday, October 05, 2010 - 08:24 pm: |
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Hi Becky,
I'm so sorry that you're dealing with something that should be uplifting no matter the outcome. You donated to your brother out of love and to be a donor for someone is a blessing.
I do understand both sides however. I live with the man I donated a kidney to..my hubby. It was 2 yrs in June and we have some similarities. Mike had 3 serious strokes 6 wks post tx and thank God has recovered. We've had many good times but trying ones too. Mike now has a type of "rejection" that MD's are so baffled with. They're not sure if it's a rejection if at all and its not text book. He has no donor antibodies and we've tried a round of IVIG. It looks like it's helped some but we had to accept that we don't know what will happen. Then again, no one ever knows for sure. We take each day one at a time and were happy that he's doing OK and his creatinine is 1.3-1.5. We pray it stays there. I'm smaller and donor mass makes a difference.
What I'm trying to say is even though he's my spouse I do have to work hard to keep his emotional state up. He's now on a small amount of pred (was steroid free) and he's moody and I accept that. There are days that he questions why things happen and why some don't. You are not your brother's keeper and it's sad that he blames you. I hope things turn around soon. I understand and feel or you. Life is what you make of it and not everything works out as planned. I'm proud of you for being your brother's donor!
Please keep us posted. If you need to vent, I'm here.
Forum Leader - Living Organ Donation
Husband had a Bone Marrow Transplant 09/08/1993. Diagnosed with CML that went into a blast crisis and became ALL.
Donated a kidney to husband 6/26/2008
Husband and both kids have PKD
I WANT TO BE REMEMBERED FOR THE LIFE I GAVE AS WELL AS THE LIFE I LIVED
I found this on a website and its so true
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Robin
Forum Leader
Username: Mamaru
Post Number: 702
Registered: 06-2008
| | Posted on Tuesday, October 05, 2010 - 08:27 pm: |
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Becky, oops forgot to tell you that I laughed when I read you call the kidney you donated "Sidney" + we call ours "Squidney".
Also, congrats on your daughters wedding. The PIC is beautiful.
Forum Leader - Living Organ Donation
Husband had a Bone Marrow Transplant 09/08/1993. Diagnosed with CML that went into a blast crisis and became ALL.
Donated a kidney to husband 6/26/2008
Husband and both kids have PKD
I WANT TO BE REMEMBERED FOR THE LIFE I GAVE AS WELL AS THE LIFE I LIVED
I found this on a website and its so true
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CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 4000
Registered: 03-2008
| | Posted on Tuesday, October 05, 2010 - 08:56 pm: |
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Speaking of kidney names, mine's name is "Dim sum."
By the way, folks, this is post number 4,000!!
| There are not too many things in life worth working my butt off for, but my health is one of them |
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Rebecca from Michigan
Member
Username: Rebecca734
Post Number: 16
Registered: 01-2008
| | Posted on Wednesday, October 06, 2010 - 03:38 pm: |
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I was talking to one of the nephrologist here at the University of Michigan today. She has offered to take care of me with follow up. I am her mother's vascular nurse specialist so it is great. She was telling me today that they have identified a virus that can be causing uretral stenosis and renal failure. It is called BK virus nephritis after renal transplantation. I looked it up and it does sound similar to the pattern my brother is experiencing. I think he is in a major depression. My sister who is a therapist states ...Greg is dying that is all I can say. I know Greg is angry that this is happening. I feel horrible also. It is just a hard situation and hopefully time will improve. Clinically I cannot understand why my sister is stating that he is dying. Why can't he go back on dialysis and be relisted. We have information control going on and it is hard not to be privy to this information. I know it is out of frustration and anger but hopefully this will pass.
As always I appreciate all of your for your thoughtful comments and support.
We should start a page with all the names of donor kidney's. It would be fun to see them listed.
Pray for my family. They could really use prayers for understanding, acceptance and hope. |
Robin
Forum Leader
Username: Mamaru
Post Number: 704
Registered: 06-2008
| | Posted on Wednesday, October 06, 2010 - 09:03 pm: |
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Becky, you have my prayers and I hope your brother will start accepting how lucky he is that you donated a kidney. You did this out of love and you are not getting any love in return. It could be a BK virus but most centers test for that if someone has symptoms and is not doing well post transplant.
I agree that he does sound very depressed. His life is not what he pictured it to be after a tx. It might be a good idea for him to look for help maybe some therapy and possibly an antidepressant.
Life isn't always black and white and there are gray area's that we don't understand or know how to deal with. Life is a challenge and we make the best of what we've been dealt. Good and bad....what's the alternative to living? I hope he see's this and although medically speaking he's having some major issues, it could be worse.
I sure hope that he starts feeling better both physically and emotionally. You need to try and look the other way and stay up beat. It's hard but you can do it.
Forum Leader - Living Organ Donation
Husband had a Bone Marrow Transplant 09/08/1993. Diagnosed with CML that went into a blast crisis and became ALL.
Donated a kidney to husband 6/26/2008
Husband and both kids have PKD
I WANT TO BE REMEMBERED FOR THE LIFE I GAVE AS WELL AS THE LIFE I LIVED
I found this on a website and its so true
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