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Author Topic: Kidney-less  (Read 4028 times)
lizabee
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« on: November 02, 2009, 02:54:02 PM »

I got a call from the transplant surgeon today, he said that the results of my CT show that there is not enough room for a new kidney.  I now have to have the left one out also.  Has anyone had BOTH kidneys out?  I just healed from the last surgery, which was very difficult (kidney was "cemented" to colon)...I am not looking forward to this again, and I feel like I'm never going to be well.
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calypso
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« Reply #1 on: November 02, 2009, 04:26:27 PM »

You made it through the first kidney removal, why wouldn't you make it through this one? For all we know it could even go easier on you. I know the feeling of wondering if you'll ever get better when things have been rough for a long time, when that happens I say to myself "This too shall pass"

Just think, it could be worse, they could have gone ahead with the transplant and jeopardized the new kidney. But it's a good sign they want to get it right.

Hope everything turns out alright.

 Random thought of the day: Have you eaten an apple lately? Eat an apple (if your diet allows), you'll feel better.
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"The very powerful and the very stupid have one thing in common. Instead of altering their views to fit the facts, they alter the facts to fit their views ... which can be very uncomfortable if you happen to be one of the facts that needs altering.
-Doctor Who, "Face of Evil"

"The trouble with the world is not that people know too little, but that they know so many things that ain't so." - Mark Twain

"Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that." -Martin Luther King Jr.
Lillupie
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« Reply #2 on: November 02, 2009, 07:54:58 PM »

Can you please help me here? I feel so stupid. I Dont understand as to why you need BOTH kidneys taken out??!! I thought when your kidneys failed they shrunk, so there is room. You already took one out, why another? Does not make sense.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Melissa
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« Reply #3 on: November 02, 2009, 08:32:22 PM »

SO sorry Lizabee.  I can imagine how you must be feeling.  Based on what I have read about you so far, I think you are very strong in spirit, as well as physically and you will come through this operation with flying colors.  It sounds like you have already been through the roughest, and now you do know what to expect....stay strong and keep us posted.  In the long run it will probably be better to have it out anyway, so you will be all "fresh" and roomy for your new kidney when it is ready! 
Oh...I do know a few people with no kidneys, they are ok....

Calypso - love the random apple thought.  I have one everyday and I think you are right, they DO make you feel better!  At least while you are eating it!

Lillupie - there are so many things that can happen to kidneys to make them fail and they all change and affect your body differently.  My native kidneys shriveled as you say once they failed, but my transplanted kidney got infected and grew a lot, so it had to come out after it failed. 
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Lillupie
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« Reply #4 on: November 02, 2009, 09:26:48 PM »

Yes I agree with you. But I just have never heard of someone getting both of their native kidneys taken out.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Wallyz
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« Reply #5 on: November 02, 2009, 09:26:56 PM »

Can you please help me here? I feel so stupid. I Dont understand as to why you need BOTH kidneys taken out??!! I thought when your kidneys failed they shrunk, so there is room. You already took one out, why another? Does not make sense.

Lisa

Its sounds like she has polycystic kidney disease (PKD), in which cysts grow in the kidney, causing them to enlarge to several times normal size.
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Wallyz
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« Reply #6 on: November 02, 2009, 09:27:23 PM »

Yes I agree with you. But I just have never heard of someone getting both of their native kidneys taken out.

Lisa

It happens often with PKD and renal cancers.
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lizabee
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« Reply #7 on: November 03, 2009, 09:56:01 AM »

I do have PKD and my kidneys are huge, the one I just had out was the size of a small baby, and that one was the smaller of the two.  They just did another CT too see if there was enough room and there wasnt.  When they took the other one out, this one decided it could take all the spare room and spread out!
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pamster42000
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« Reply #8 on: November 03, 2009, 04:13:30 PM »

After my daughter, Sarah had her first kidney transplant she got really sick. Come to find out her old kidneys were causing her to get really ill. It also happened after her second transplant. The non-functioning  transplanted kidney was making her ill. In both cases she had to have the non-functioning kidney {s) removed.

We were also told the original kidneys would shrivel up  but apparently in some people the non-working kidneys may cause problems.

This isn't really related to the subject but just wanted to pass the info along.
« Last Edit: November 03, 2009, 04:21:20 PM by pamster42000 » Logged
whiskeyfrank
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« Reply #9 on: November 04, 2009, 03:50:36 AM »

Ive just (2nd October) had both my kidneys removed as they were growing at an enormous rate due to APKD. My surgeon would and could not carry on with my live donation from my mum as there was simply no room. My lungs were half collapsed, my adrenal glands have been destroyed by pressure, my spleen is crushed (but OK now) and my stomach was crushed. I had 9% function left on removal.

Since they have been taken out i lost 23lbs (11kg) of kidney mass, (i tell people i had twins, oh and I'm male!) i can now eat normally, although restricted and i feel much better even though I'm on dialysis. And i don't look pregnant anymore

Sometimes kidneys keep growing as mine did, the surgeons didn't think the risk of keeping one in would be worth it as there was a chance of the left over kidney failing more quickly and then possible infection. They also felt that it would give a better chance for my donor live kidney if they mass was removed.

I had my op on the 2nd October i was out of hospital in 7 days and back to my office last week (after 3 weeks). I now work 3 days and 2 half days a week to fit in dialysis, and although not exactly ready to start a marathon, I'm 70% fit.

Its a very big operation having both out and I'm still very, very bruised after 4 weeks as they use some big metalwork to move bits around but there just bruises and I'm working round them. Ive also got a 24" scar!!

In my case they didn't work so there was little point in keeping them.
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PKD - diagnosed 1986
Fistula added July 2009
Bilateral Nephrectomy Oct 2009
Fistula Failed Oct 2009
HD started Oct 2009
Live donor from mum Jan 4th 2010
mum and me both great

Started a blog on my condition from stable now to Living Donor transplant (hopefully)

My Blog - http://pkddiary.blogspot.com/
lizabee
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« Reply #10 on: November 04, 2009, 07:19:09 AM »

Im glad to hear that you are doing so well, did you have both out at once?  I have PKD too and both of mine were huge, the one they already took out was badly infected....now this one is only coming out because there isn't any room...thanks for the posts, they are making me feel a little better about all this
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whiskeyfrank
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« Reply #11 on: November 04, 2009, 08:54:29 AM »

Yes both at the same time, i figured get it out of the way - neither worked and both kept getting infected so, out they came.

Like i said i had both out, as well as the adrenal glands and a few other "bits" and I'm back at work after 3 weeks, so its possible to get back to normal quickly, if painfully!

I used to live in Michigan - Auburn Hills, when i worked for FMC! - of now interest just thinking aloud.
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PKD - diagnosed 1986
Fistula added July 2009
Bilateral Nephrectomy Oct 2009
Fistula Failed Oct 2009
HD started Oct 2009
Live donor from mum Jan 4th 2010
mum and me both great

Started a blog on my condition from stable now to Living Donor transplant (hopefully)

My Blog - http://pkddiary.blogspot.com/
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