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Author Topic: Here's a tip for the people on the waiting list.  (Read 3581 times)
Krisna
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« on: November 18, 2007, 06:37:16 PM »

So, this is how I kept my perfect match for so long.  Any time I needed a blood transfusion my Nephrologist would order blood with the white blood cells removed.  That would keep my body from reacting with the transfused blood and building antibodies.
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Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
Romona
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« Reply #1 on: November 18, 2007, 07:27:48 PM »

Something to remember! :thx;
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goofynina
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He is the love of my life......

« Reply #2 on: November 18, 2007, 10:07:39 PM »

Thanks for the info Krisna, i'm gonna have to pass that word to some of my friends at the clinic ;)
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....and i think to myself, what a wonderful world....

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2_DallasCowboys
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« Reply #3 on: November 19, 2007, 05:06:35 AM »

Thank you for this info, I bet it can be
invaluable to many people.

Anne
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KT0930
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« Reply #4 on: November 19, 2007, 06:16:24 AM »

My coordinator told me about this when I was listed this time. I just wish I had been told years ago when it would have made a difference to me!
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
donnia
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me and my donor Joyce

« Reply #5 on: November 19, 2007, 06:21:24 AM »

Great  info!   I will remember that!
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #6 on: November 19, 2007, 01:37:01 PM »

Thanks! I'll make a note of that. At the rate my anemia is getting worse, by the time any of my doctor's decide to finally treat it, I'll need a blood transfusion. I have before.   :P
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...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
stauffenberg
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« Reply #7 on: November 19, 2007, 02:13:44 PM »

Think of the poor dialysis patients in the days before EPO, who would have to receive blood transfusions all the time to keep functioning.  It's a wonder that any transplants ever worked in them, given all the antigens they would build up from these repeated transfusions.

Generally, it is always a good idea to avoid transfusions if you can, since in addition to the antigen increase which is the price of the typical transfusion, the blood supply is never perfectly secure, and you could get some infection from another person's blood that was not caught on their pre-donation screening.  Some of these infections, like Hepatitis or AIDS, can threaten your ability to have a transplant.
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BigSky
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« Reply #8 on: November 19, 2007, 02:54:55 PM »

Think of the poor dialysis patients in the days before EPO, who would have to receive blood transfusions all the time to keep functioning.  It's a wonder that any transplants ever worked in them, given all the antigens they would build up from these repeated transfusions.

Our unit used Deca to treat anemia and only used blood as a last resort.

To this day I think they should use a combination of Deca and aranesp if a patient wishes.  However doctors hear the word steroid and freak anymore.
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Krisna
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« Reply #9 on: November 22, 2007, 10:32:50 PM »

Yeah, my unit uses EPO for mild anemia but in my case there have been countless times where something came up in surgery of on my access or the third transplant where I had surgery and after surgery and then the kidney had to be removed and I needed another transplant.  I needed lots of blood by my transplant clinic thought enough ahead to give me transfusions with both blood from my dad and later on blood that had the white blood cells spun out of them.  I know there's a term for it but I can't for the life of me, think of it!  You just never know what will happen.  I think it's worth it to at least ask abt.
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Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
stauffenberg
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« Reply #10 on: November 23, 2007, 10:50:18 AM »

If you know you have surgery coming up and you are not in danger of severe anemia because of being on dialysis, you can avoid raising your antibody levels by having blood transfusions from another person by instead having your own blood extracted and stored prior to surgey.  Then, if and when you need it during or after surgery, you can just have your own blood back with no risk of unscreened infections or of increasing antibodies.
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Krisna
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« Reply #11 on: November 23, 2007, 07:00:34 PM »

If you know you have surgery coming up and you are not in danger of severe anemia because of being on dialysis, you can avoid raising your antibody levels by having blood transfusions from another person by instead having your own blood extracted and stored prior to surgey.  Then, if and when you need it during or after surgery, you can just have your own blood back with no risk of unscreened infections or of increasing antibodies.

Yeah, unfortunately most of my surgeries which require me to need transfudions are always emergency.  If I were seeking another transplant my dad would donate to me or my doctor would just me the blood without white blood cells.  I haven't needed a transfusion in quite some time now. 

I've had so much happen to me over the years it's tough to remember all the good tips I have so I like to get them up here when I remember!  lol
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Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
angela515
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i am awesome.

« Reply #12 on: November 23, 2007, 08:50:03 PM »

Great advice! I try to avoid transfusions unless my life depends on it,  :lol; Sometime last year when I had monthly labs done, I was very anemic, and the doctor wanted to admit me right then and give me a transfusion.. I was like, no.. I pretty much don't want one since my PRA was 0% and I wanted to keep it that way. So she understood, and said she would try everything to not have to, and asked me to wait around awhile and get more labs done, so I did, it was a couple points higher and she said I could go home but they were going to draw daily labs until it's up to where they want it, and increased my EPO and started me on iron infusions... and said if it didn't go back up, I will have no choice. So great advice, because you can't always turn it down.  :thumbup;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
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