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Author Topic: I'm new, and I'm a living donor  (Read 2818 times)
eroomk
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« on: April 17, 2010, 09:07:09 PM »

Hello everybody,
I am brand new to this site.  I know the site will be very helpful for me.  I am a caregiver and living donor. My husband went on the donor list April, 2007.  No calls.  I didn't know "living" donor existed.    I donated my kidney to my husband who I am desperately in love with on September 10, 2009.  We were a very strong match.  Almost 6 months later my husband suffered acute failure and we were told yesterday that the transplant team is almost certain he has no functionality in his transplanted kidney.  My husband spent over a week in the hospital getting heavy doses of steroids in an attempt to save his transplanted kidney.  :( it didn't work.  He is so very sick.  I don't know how I fell upon this site, but was hoping I could gain some insight on how I can best support him.  He is on dialysis and he is so very sick right now it just brings me to tears.  I may have misunderstood the doctor, but yesterday he said that it is unlikely my husband would receive a donor kidney and that he would need to search for another living donor.  Does anybody know what that means?  I will surf around your site, hoping to find out.

So,... that is my story and I am praying for a miracle.
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galvo
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« Reply #1 on: April 17, 2010, 10:28:24 PM »

G'day eroomk and :welcomesign;. As I said in reply to another post of yours, I have no experience in the transplant area but there are those here who have. I'm sure you'll be hearing from them. I hope things improve for you.
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Galvo
monrein
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« Reply #2 on: April 18, 2010, 04:00:24 AM »

My heart goes out to you both as this is such a huge disappointment after so many high hopes.  I'm so sorry.  I'm not sure about the doctor's reasons for saying what he did but maybe it has something to do with high antibodies.  I'm very glad that you found this site and I hope you will find it helpful for information and support...you both need support, even though your husband is the one with ESRD, it affects families.   :welcomesign;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
looneytunes
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Wishin' I was Fishin'

« Reply #3 on: April 18, 2010, 05:36:42 AM »

Hello eroomk and welcome to IHD.  This is a great siite for caregivers as well as patients as there are some wonderful people on here who will help you in any way they can.   Read and learn, ask questions or just rant if you need to.  As a caregiver to one with ESRD, I agree with Monrein, this disease affects families and taking care of him means taking care of yourself too. 

I'll be looking forward to seeing you on the boards!   :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
Rerun
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Going through life tied to a chair!

« Reply #4 on: April 18, 2010, 07:30:06 AM »

Eroomk, welcome to IHD.  Unfortunately some people reject transplanted kidneys.  It is a very low time for the recipient.  You are wonderful for giving him a chance at life.  Instead of saying "it didn't work" say "it worked for a little while".  I would think he could go back on the waiting list but yes a living kidney is always better.

Hope you find help on this site.

Rerun, Moderator
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Choosin2bHappy
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« Reply #5 on: April 18, 2010, 11:13:36 AM »

Hello eroomk..

God bless you.. I am new here too..and you WILL learn so much and meet so many supportive and caring people.
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kellyt
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« Reply #6 on: April 18, 2010, 05:53:17 PM »

I am so sorry about the rejection, but very happy you found this site.  You will learn more than you ever imagined.  I, too, don't know how I ended up here and I joined almost immediately.  Never a regret.  :)

I received a living donor Nov 2008.  I have not had any bouts with rejection and pray I never do.  I hope your husband can find another living donor quickly.   :cuddle;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
thegrammalady
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« Reply #7 on: April 18, 2010, 05:59:45 PM »

welcome, this is a very good place to land, glad you found us. you will find answers to many questions and good support. the people here are wonderful.
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s
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
paris
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« Reply #8 on: April 19, 2010, 07:15:51 PM »

Welcome to IHD.  You are an amazing wife and we think living donors are true heros.  I am so very sorry he is rejecting the kidney.  The emotional strain must be hard for both of you.   You will find great information here; from other transplant recipients and from those on dialysis.  And you can get both prespectives---the kidney patient and the caregiver.   We are very glad you found us. I hope we can give you some answers and support.    :cuddle;


paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
eroomk
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« Reply #9 on: April 20, 2010, 05:52:06 PM »

Wow, what a very warm welcome from all of you!  Thank you.  It lifted my spirits.  I know we need to adjust to the new "norm", and the individuals on this site have already given me perspective and insight to the challenges ahead.
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Jelena
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« Reply #10 on: April 20, 2010, 07:31:25 PM »

Dear eroomk,
welcome to this site! I myself am a caregiver and hoping to be a living donor to my husband who is on home dialysis. I am so sorry for yours and your husband's kidney failing. I have no doubt that it is a huge disappointment. This is also my great fear (and I am sure a fear of everyone else's), but am aware that these things happen, as much as getting ESRD happens. I don't know the right words to make you feel better, but be assured that this is a great site, people are wonderful and information abundant. And I am sure your husband will get better, yes he will be on dialysis, but he will get better. I didn't believe it myself when my husband got sick, but he looks and feels great now. And so will yours.  :2thumbsup;Many  :pray; and  :cuddle;
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Jelena
eroomk
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« Reply #11 on: April 22, 2010, 02:34:20 AM »

Thank you Jelena,
Maybe I can just love him to health!  I was pleased to hear it will get better.  I am sure the physiological and emotional aspects are componded and aid to not feeling well.  Every transplant patient should fully understand renal failure does not equal symptoms. Nobody told us that was a possibility. Based on the biopsy, he was well into acute failure before he started having headaches.  We didn't know this could be a sleeper creeper action but it was. 
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MooseMom
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« Reply #12 on: April 22, 2010, 01:04:11 PM »

Welcome to you, eroomk.  I am so sorry that the transplanted kidney is not working.  I don't even want to imagine the heartache you must both be enduring, but I know that you will find a lot of support and understanding here on IHD.  Did you ever find out what the doctor meant when he said your husband wouldn't receive another donor kidney?  Did he mean a cadaveric kidney?  Maybe once you get a full explanation from the doctor, you will find that there is some hope after all.  Do press him for information, OK?  In the meantime, know that we are here for you.  Best wishes to you both.  Maybe you could show us to your husband and he could join IHD?  Maybe we can help him, too.
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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."
Jean
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« Reply #13 on: April 22, 2010, 01:49:01 PM »

 :welcomesign; to IHD and I am so sorry for the road you are walking. I would say long and lonely, but if you are ever lonely, turn to us, that is what we are here for.
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One day at a time, thats all I can do.
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