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| | (1 recommendation so far) | Message 1 of 10 in Discussion |
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Hi ! My name is Debbie I have PKD and PLD. I had a kidney transplant in Sept. of 2003. The kidney is doing great. Its the compilations with other things I am having problems with. I am hopping someone can let me know if they have gone through the surgery I am about to have. I am about to have half of my liver removed and the other half the cysts will have the tops cut off. At the same time they will be removing lots of mesh from past surgerys that is dammaged. Then they will reconstruct my abdomal wall with human mesh less chance of infection. I am very nervious about the surgery because the Doctors are just saying that is a HIGH RISK. I ask for numbers and all I got was we never did any thing like this befor. Also if I dont have the surgery I was told things with me will get worse and the surgery will have done in a emergancy and that would be even a higher rish. Thanks for any help any one came give me . Debbie |
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| | (1 recommendation so far) | Message 2 of 10 in Discussion |
| | From: lbinki | Sent: 5/30/2007 1:23 AM |
Why are they saying you need this done? Are you in pain? I don't understand
the reason. Sounds unusual. Id get a second opinion from a reputable center.
Good reason to be afraid. I have very large kidneys...my native ones are still
with me...and cystic liver as well...I deal with pain and infection but don't
think Id ever let them cut half my liver out and mesh? I know
theres going to be a lot of good info given here. So happy you found this
site. They've helped me so very much...Take your time making any decision.
Linda
Hi ! My
name is Debbie I have PKD and PLD. I had a kidney transplant in Sept. of 2003.
The kidney is doing great. Its the compilations with other things I am having
problems with. I am hopping someone can let me know if they have gone
through the surgery I am about to have. I am about to have half of my liver
removed and the other half the cysts will have the tops cut off. At the same
time they will be removing lots of mesh from past surgerys that is dammaged.
Then they will reconstruct my abdomal wall with human mesh less chance of
infection. I am very nervious about the surgery because the Doctors are just
saying that is a HIGH RISK. I ask for numbers and all I got was we never did
any thing like this befor. Also if I dont have the surgery I was told things
with me will get worse and the surgery will have done in a emergancy and that
would be even a higher rish. Thanks for any help any one came
give me Debbie
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Yea I am in a lot of pain. I have been going from Dr to Dr and test after test in the past year and the cysts get bigger and bigger. Last Nov they almost lost me because I had gang green in my bowel , the mesh has holes in it and the bowel got intangled in it. I was so full of infection. My body startrd to close down. Thank god I am here today. I am also glad I found this site and thank you for responding to me. Debbie |
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| | | From: Bridget | Sent: 5/30/2007 3:46 AM |
| Debbie , this is the link to a wondeful site for PLD. Linda is the hostess there and she is just terrific. And is also very knowledgable about PLD and should be able to answer any question you might have. If not she will do everything she can to help find the answer. She is also a member here. Many of our members here also belong to her support group. I personally have no experience with your situation but I did want to let you know that we are here for you. If there is anything you might need please don't be afraid to ask. Welcome to our family here. Bridget / hostess |
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| | | From: barb | Sent: 5/30/2007 7:42 PM |
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Debbie, this surgery IS high risk, and not only for the complexity of the operation. Since you are on immunosurpressants, ANY surgery is riskier for you. Your surgeons never did this before? Or, have they but not the hospital? Good luck with it.
Barb
-----Original Message-----
From: miss-misty-smom1 < [email protected]>
To: Polycystic Kidney disease chat & community < [email protected]>
Sent: Tue, 29 May 2007 7:31 pm
Subject: New member
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New Message on Polycystic Kidney disease chat & community
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From: miss-misty-smom1
Message 1 in Discussion
Hi ! My name is Debbie I have PKD and PLD. I had a kidney transplant in Sept. of
2003. The kidney is doing great. Its the compilations with other things I am
having problems with. I am hopping someone can let me know if they have gone
through the surgery I am about to have. I am about to have half of my liver
removed and the other half the cysts will have the tops cut off. At the same
time they will be removing lots of mesh from past surgerys that is dammaged.
Then they will reconstruct my abdomal wall with human mesh less chance of
infection. I am very nervious about the surgery because the Doctors are just
saying that is a HIGH RISK. I ask for numbers and all I got was we never did any
thing like this befor. Also if I dont have the surgery I was told things with me
will get worse and the surgery will have done in a emergancy and that would be
even a higher rish. Thanks for any help any one came give me Debbie
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Debbie, Liver resection is a high risk surgery and not something to be taken lightly. You need to be evaluated at a that is VERY familiar with liver resections, especially in transplant patients. Before I'd let just any surgeon touch my liver, I'd get a second and third opinion at least! One of the best centers in the world for liver resections for PKD/PLD patients is the Mayo Clinic in Rochester. Dr. Nagorney is considered THE expert surgeon. I would highly recommend contacting his office and/or Dr. Vincent Torres (also at Mayo; he's the nephrologist on the team) and asking them to evaluate your case before letting someone touch your liver. Liver ressection is a high risk surgery and not something to be taken lightly. You only have one liver and there's no alternative if something goes wrong (there's no dialysis option for the liver). The liver isn't something to let the unexperienced surgeon near, especially not a polycystic one. And it's not something they can learn about by reading a text book. Right now it sounds like the doctors are trying to scare you into having the surgery right now without giving you the whole picture...like they don't know what they're doing. Please, get the second opinion now. You can contact Drs. Torres and Nagorney at no cost and they will review your CT scans and other tests as well without you needing to make a trip to Rochester MN or pay a penny. They're dedicated to PKD and PLD patients and working hard to help find a cure and effective treatments. Please don't let your doctors scare you into a surgical procedure none of you are ready for. Best wishes, Ruth |
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| | From:  pkdLin | Sent: 5/31/2007 12:55 PM |
| I don't have anything to add except that often members will ask how I deal with dialysis and I feel bad because I know I don't have it bad, in spite of dialysis and some aches from other things I'm relatively pain free. I feel so bad for a member like you who has so much pain and problems. I'm not familiar with the surgery but yes it does sound highly risky, for many reasons. I would go with Ruth's advice!!! Lin. |
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They have done all the surgery befor on PKD & PLD pacients but not all on the same person at once. I have been to Albany Med, Westchester Med and Colmbia. All has seen the lasted CT and confured. They all agree that doing this in a controled surger is the best way to go. If I should end up with the bowl stuck in the mesh then the sugery would have be done in a emergancy and the risks would very high risk because of the fact the infuction would be allready their. It's a hard choice to make. I am at the point that I can't do much of anything with getting out of breath. My stomac has two hernias combined that I look and feel 9 months pregent. Boy ! Do I get look from people. What is that 52 year old doing being pregent? Yes people do come up to me and say somthing. A friend of mine has even given my liver a name. Amanda. The girl I did not have. I have to have fun with it or I will get crazy. Again I am glad I found this group and thank all of you for you suport. Debbie |
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| | | From: barb | Sent: 6/1/2007 2:27 AM |
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Debbie you arte seeing doctors at some very fine medical centers. I feel confident that you are doing the right thing. It's best to undergo surgery, especially complicated surgery, when you are healthier.
Barb
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Debbie, It's encouraging to hear they are familiar with the surgery and not rushing into this. And I do understand the concern about the bowel getting tangled in the mesh; you defintely don't need that kind of emergency on your hands! But I would still call and ask Dr. Torres and Nagorney if they could review your records and provide an independent review. Your case is so unusual they may be able and willing to consult with your surgical team and provide some additional guidance on the intracies of the procedure from their very experienced perspective. It's only a phone call; it can't hurt to ask. I wish you and "Amanda" well; please keep us posted on how you're doing. Ruth PS I love that you've named your liver. I've done the same with my kidneys, Fred and Ethel, and my 3 liver tumors (unrelated to PKD; they're Huey, Dewey and Louey), but can't find a good name for my very large liver...somehow Oscar, of Sesame Street garbage can fame, is the only name that seems appropriate at this point. Think of the insensitive people who question you on the street as an opportunity to educate someone new about PKD and PLD; chances are they've never heard of the disease. They're asking out of ignorance and obviously need to learn about PKD and PLD and know that not all large-bellied women are pregnant! |
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