I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: tweetykiss on June 02, 2007, 06:05:38 PM
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My husband's creatinine levels just started going up in January and in recent weeks rising rapidly......early last week it was 3.1 and when the did the biopsy the next day it was 2.8 and yesterday it went up to 3.7.....do I need to worry and get alarmed?
The GP said the biopsy claims BP problems but now he does not think so since his BP was low yesterday and he thinks he may have lupus or some infection of anti immune thing and and may need steroids........
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Does anyone know the answer to this since I am freaking out over here about my husband?
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I am sorry, i wish i can help you Twitty, Please give it some time, it being a weekend, i am sure someone will give you some answer soon. Take care and Good Luck :cuddle;
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I think patience is the key here. Patience with your doctor and patience with the entire situation. I think the bloodwork fluctuates depending on what your husband was eating or doing at the time. Answers will come.
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I know when they have my husband fast for diffrent things his creatine always jumps up they said it's normal. I know how you feel i alway's freak when it happens and then it alway's comes down a little. Hang in there :cuddle;
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Tweetykiss hang in there. :cuddle; If he needed to be dialized right away I'm sure the doctors would have done it. Sometimes creatine is like that it will go up but then go down again. Hubby's did that a few times. His creatine was 1700 before he started dialysis. Don't know what that would be on your scale. Keep watching his results though.
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There are two scales for measuring creatinine, but since one is exactly ten times greater than the other, it is simple to tell them apart and to figure out their relation to each other. (In 1985 an international scientific convenstion established the so-called 'SI' units so that all medical data would be on the same scale, but many countries get into the bad habit of forgetting the right units to use.) Dialysis is usually initiated based on patient symptoms, and some people have been known to tolerate creatinine levels as high as 1000 (or 100) and still be functional. However, anywhere between 800 and 1000 is where dialysis usually begins.
Oftentimes the cause of renal failure is difficult to determine, and many cases are simply classified as being of unknown cause. There are a wide range of auto-immune diseases which can affect the kidneys, lupus being the main one, and careful examination of the kidney cell changes by a pathologist should be able to determine which of the many auto-immune diseases is active. The usual treatment is to suppress the immune system, using drugs such as prednisone, azathioprine, and cyclophosphamide, and sometimes the suppression can arrest the decline in renal function, but sometimes it can't. The biopsy can give some indication of how far the damage has progressed so far, but a creatinine of 370 is not hopelessly high.
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Thanks for your replies on this....I hope to get other feedback since I am so new to symptoms and other information relating to this....
Now he says he feels weak so I am wondering if that could be that he has to adjust to reduced food consumption since he always would eat a lot and now his food has been cut at least half.....or is this weakness could be a kidney symptom?
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My daughter's creatinine stayed in the 3 range for a couple of years, then creeped up to 6.2. She was tired a lot but still could function. Then a nephrologist told her at a Friday appointment that we should think about what kind of dialysis to do in the next few months. She was feeling very sick by then, but he seemed confident that she had some time left before beginning dialysis. But 2 days later her creatinine was at 10 and she was admitted for a chest tunnel catheter and emergency dialysis. So it can be steady, and suddenly unpredictable.
The evolution of kidney disease from the initial sign or symptom to development of ESRD may take months or years. However, the rate of progression of kidney failure and the clinical course vary with the specific kidney disease. For example, kidney failure is rapid in diabetic nephropathy, intermediate in polycystic kidney disease, and slow in lithium nephropathy.
-- from Nephrology
Chronic Renal Failure and Dialysis: Chronic Renal Failure - to read more go to http://www.medscape.com/viewarticle/534694?rss
In my opinion, what is more telling are the symptoms. Some people can do well at high creatinine numbers, other cannot. Lack of energy, edema, reduced appetite, itching, muscle cramps, vomiting and anemia are some of the signs of the approaching need for dialysis.
Have they checked your husbands GFR? It appears to be the most accurate measure of kidney function.
I hope you can get some answers from your doctor. Keep asking questions and know that we are here for you!
:cuddle;
Karol
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Thanks for the information everyone......I know I have to watch him at home.......he is mainly feeling weak but he does not have the other symptoms.........
Now Okarol to answer your question about the GFR, according to the GP, he said it is 22 to 30 percent but when I use the internet GFR calculator and punch numbers in, it shows 18 percent GFR so now I am confused as well as scared........
Could his feeling the weakness be because he has to adjust to lower food consumptions or did I already ask that.....if so sorry......
I will read that link you gave me too Okarol
Now I am ready to donate the kidney to him but I was told we are not at that point yet so when is the point of transplant?
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Have you discussed a pre-emptive transplant? This is done before the patient needs dialysis. It may be worthwhile to ask for an evaluation.
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My husband also was weak because his hemoglobin was really low but once he got his epo shot he felt better
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Have you discussed a pre-emptive transplant? This is done before the patient needs dialysis. It may be worthwhile to ask for an evaluation.
Now that you mention it, I will.....the GP told us Friday that transplants are not always guarantees and there are risks too since that involves two surgeries and then the rejection dangers and side effects of the drugs so they are implying that it should only be as a last resort.....now I wonder how bad does it have to be for most when they need the transplant.....
I have the same blood type as my husband but we don't know the tissue matches yet.......
Lola,
Before the biopsy, he has a low hemo too and then they put him on iron but from the Friday tests, the GP did not say anything about hemo and stupid me forgot to ask since I was really freaking.........
What is an epo shot?
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helps bring Iron up my husband gets one every 3 weeks otherwise he's exhausted
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You mention the GP. Is your husband seeing a nephrologist?
Transplant is one of the treatments of renal failure, as is dialysis.
Yes, there are risks with any surgery, but I hardly see it as a last resort.
What is the local wait time for a non-living kidney for your husband?
There's more info here http://en.wikipedia.org/wiki/Kidney_transplant
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You mention the GP. Is your husband seeing a nephrologist?
Transplant is one of the treatments of renal failure, as is dialysis.
Yes, there are risks with any surgery, but I hardly see it as a last resort.
What is the local wait time for a non-living kidney for your husband?
There's more info here http://en.wikipedia.org/wiki/Kidney_transplant
Sorry you had to wait for this reply while you are really helping me...had to step away to do something.......
My husband goes to the VA since he is a vet from back in the 70s (he was in the Air Force then but no combats)......so yes he has a GP there and just back in April when his creatinine went up to 2.7, he got referred to a nephrologist....his crets have been changing a lot since.........we talk to the GP more since he is there everyday and the nephrologist is not........the GP will talk to the neph tomorrow even if that means him going upstairs since he feels this cannot be sat on and I am pulling my hair and missing work......
I don't now the wait time for VA patients here inspite of the fact that I am donating my kidney....they just keep saying "we are not at that point yet".......also the transplant has to be done in Madision, WI which I think is only a three hour drive for us but we will do amtrak and then rent a car there........
Thanks for your info......
Lola,
Is epo for iron too? I admit I was confused by your original post since the late admin's name was epo and then I realized you must be talking about a medicine...sorry but I am just new to this kidney disease thing and already I am getting my socks in a wad........
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BRAND NAME: Epogen, Procrit
Epoetin alfa is a man-made form of a protein that helps your body produce red blood cells. The amount of this protein in your body may be reduced when you have kidney failure or use certain medications. When fewer red blood cells are produced, you can develop a condition called anemia.
Epogen is used to treat anemia (a lack of red blood cells in the body).
More info and warnings here: http://www.drugs.com/epogen.html
It's been in the news lately. Check the news stories section or use the search bar to search for related posts.
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He is on Ferrous Sulfate for his lack of iron.......
I will read about that drug and the others mentioned here........
I just wonder how come doctors tell us to stay away from the Internet.....
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I think they tell you to stay away from the internet because it's difficult to sort out which information is valid or important or biased.
Of course everything you read here is based on different people's experiences or perceptions.
As with anything on the internet, you need to use common sense and to research thoroughly.
The good thing about IHD is that there is a lot of experience here, and lots of support!
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I think they tell you to stay away from the internet because it's difficult to sort out which information is valid or important or biased.
Of course everything you read here is based on different people's experiences or perceptions.
As with anything on the internet, you need to use common sense and to research thoroughly.
The good thing about IHD is that there is a lot of experience here, and lots of support!
I love it here and everyone here has been great to me.....I just wish I joined when the site founder was still alive since he was phenomenal from what I have read.......
I also appreciate everyone giving advice and nothing is sugarcoated which is how I want things to be told...the straight facts so I know what to deal with......
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Tweetykiss, When i was first diagnosed with kidney failure i didn't know what to do. My creatine was 2.8 i felt fine. Due to pressure from familt and friends i went on dialysis. Believe it or not i felt better off of dialysis. After my transplant i of course felt a little better. i lived with my creatine going from 1.8 to 2.6 or 2.8. Sometimes it would go higher depending on what i ate. I also was able to get more BP meds that helped. My doc at the time also uped my prednsone. The four years i went without my meds had done some damage to my kidney but it held stable for 10 years. I was fine until i moved home. It had gone to 3.8. I waited another year to go on dialysis. I have been on for three years now. My creatine right now is 16.7. It goes as low 12.7 and 13.4. I am very tired. But i feel ok. I think diet and blood pressure are a important part. I had several kidney biopsy's that showed a higher creatine. But i never went by that. I was only born with one kidney so when that one failed i recieved a transplant.
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I am sorry Keefer what you had to go through and that you only had one kidney to begin with......how is it that people are only born with one kidney? I am sorry that the transplanted kidney failed after a while....you brother is remarkable to donate that to you and I feel bad that it did last you through current times......
Now it is interesting you feel better off the dials than on it......
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Tweetykiss i was only born with one kidney it was located in my right pelvis when i was 11. Nothing was explained to me as to why. A certain religon i used to belong to said it was due to the fact i was born with "Evil" and that sometimes that happenes so i can suffer. But what the hell to they know. My kidney was always giving me problem as i grew. I wasn't allowed to do anything for fear something would go wrong. No sports, swiming, no contact of any kind where my pelvis was concerned. So i grew up just being able to fish and walk. When i was in my late teens i started to do more things seeing that i didn't want to be paranoid. It wasn't till i was in my late thirties and married that the kidney failed. It was also then i was told that when someone is born with one kidney there is also another birth defect. Sure enough there was. In trying to have children it was determined i could'nt without a operation. I was born without what i call "Vas Tubes. These are needed for the sperm to travel through. It was during this operation that my kidney failed. When i grew older i always thought about this my mother and father drank heavy all their lives. i wonder if this was why i had the birth defect?
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Keefer,
I am so sorry you were born like this and that religion group was wrong about the EVIL part.......now do you know if your mother drank when she was carrying you? If not, you will want to ask someone in the family who is a reliable source. I goofed in my post when I made the statement about your brother donating his kidney....I meant to say that it is bad it did NOT last and I forgot to put the word NOT, (my eyes are not fit for the puter but I am determined to stay on)......it is sad you had to miss sports since that is every boy's thing....now girls like me don't get into it but I can understand how a man would feel about missing all that....
How do you feel with your life now? I am always ears......
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Tweetykiss, I was reading your threads about your husband and started to think that i might have started to rant about myself. I'm sorry. Everytime i read a thread that i see may have something to do with what i have i get excited and start to write a book. I just want to tell you how i envy you and the love you have for your husband. I have a new found respect for spouses who are caregivers to people on dialysis and kidney disease. As i have said before in other threads i understand why my wife left me. She couldn't stand the whole mess. As for how i am now i used to live in nashville and moved back to pennsylvania.I have been here for around 4 years. I live by myself and have no caregivers. i guess you can say i am content. The only possion i own is my truck. I rent the two rooms i live in. I lost everything i own due to having to go bankrupt. I have accepted the way i live now. I have no girlfriend or partner. I go to hemo three times a week four hours each. On my days off i like to fish or go to thrift stores. Dating is of course hard. I wouldn't want to put this on anyone. I hope you have the strength to carry on. If the going gets tough we are always just a click away.
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A kidney transplant is by far the preferred method for treating endstage renal failure. It is so much superior to dialysis that it is now generally recommended that patients declining into renal failure have a transplant before starting dialysis. While there are some risks from the toxic anti-rejection drugs patients with a transplant have to take, the facts are that 1) they live a life which is nearly as healthy as that of a normal person, while most dialysis patients are functionally disabled; and 2) they live two to three times longer than dialysis patients. While the anti-rejection drugs are toxic, they are much less damaging to the body than remaining on dialysis. You should push your nephrological team to arrange a transplant as soon as possible.
If you two are the same blood type, then the HLA tissue type match is not that important, as it has been found that even completely mismatched live donors provide excellent results for the kidney recipient. As long as the patient has not had many blood transfusions there should not be a problem with cross-matching, which tests for pre-formed anti-bodies the recipient might have to your kidney.
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Tweetykiss, When i had my transplant i awoke to the best feeling i had in a long time. I wasn't told how long it would last. For some reason i believed it would last as long as i was alive. I never entertained the thought it would reject. My transplant was textbook. Everything that was needed for a perfect match was there. All blood and tissue match was perfect. I have a tape with the transplant doctor talking on TV about only finding this kind of match in twins. My kidney could have lasted a long time. I will never know for sure. I had gone without the meds needed for antirejection for four years. I remember taking my last pill and saying, "God, if your out there please see a way through this. It's in your hands." I couldn't get insurance at the time. By the time i did get it my creatine was 2.8. After a short time back on the drugs i went to get checked again and it was 0.8. My neph. couldn't believe it. That kidney was working real well. By the way my brother Greg who gave me his kidney is 9 years younger!
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Keefer,
I am sorry that your wife left you......I know that had to be tough on you and the one person you shared so much with was all of a sudden gone from your life....especially when you need at the very least their moral support.....
Feel free to rant here since that is what this site is for......I know I have ranted plenty and here I am not the one even having CKD much less dialysis but I keep freaking out because I am so scared for my husband.....I was almost pulling my hair in the doctor's office yesterday while my husband is so calm and even the doctor pointed that out to us that Mike was easier to deal with.....
Like I said to you before I am all ears if you want to talk more........and you should date....there is no rule that dialysis patients cannot date....you will find the right lady if you look hard enough since if she really cares for you, then she won't mind your situation........you are still young so don't miss out by not having a life partner, lover, and companion.....you will find someone like that if you try......
As far as what I have with my husband.....yes we are very close and I take pleasure in taking care of him........it gives me a lot of gratification.....he is quite independent.....he can buy groceries if it is a light load (I do the big loads), cigs for me, put gas in the cars, and he does some house errands even if I tell him not to saying that "I am not an invalid"........he is quite determined......I do the rest, cook, clean, scrub, pay bills, have a job to go to and the paperwork plus I am also in grad school but I am off for the summer.........I also drive him to his appointments and prepare his meds for the day.....
I know one thing, we said vows to each other and I am keeping mine but I will do what it takes to keep him alive and going.....
I you want to read more about our situation, it is right here..... http://ihatedialysis.com/forum/index.php?topic=3887.0
Now when you got your meds, why the rejection, that is strange........you are lucky to have a brother who was your match since many have problems with that.....I will donate to my husband if need be since I am the same blood type as him.....
Stauff,
Thanks for all your information on transplants....before I let them put Mike on dials I will donate to him.......
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Tweetykiss, A year after my transplant wife and our two children moved to Nashville, Tennessee with her job. We both worked at the same company but i am a printer and they didn't one down there. It wasn't a big deal i quit my job and when we moved she put me under her insurance. I was only working at the newspaper for a week when she divorced me. I was told at the newspaper that the insurance company said i was a high risk. She dumped me from hers. So i spent the next four years trying to get on tenncare [state aid]. I called back to the doctor who did the transplant. He was pissed. He said the only thing i can do for you is come home to Pennsylvania and i can get you the meds. So i had a choice to make. Come back here or stay in Tennessee and see my kids. I mean i thought gosh my kidney failed during a operation to have my son. So i made the wrong decision and stayed. At least i took that chance. I don't regret it though. i have some good memories from the south.
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Keefer,
So when you got on your state aid, they would not give you your meds and is that why you waited for four years, now I may have misread but I thought I read that by the time you got your meds your creatinine had gone down........
Sorry, but it is that doctor's job to prescribe those meds to you regardless of what plan you have....can I ask something a bit personal too......I know you had to have the "man" surgery to have your son but could not have your and your wife gone to a fertility clinic where they might have found a way around to getting your chromosomes so the children could still be your's and your wife's.....if that is too personal, I don't mind hearing "none of your business".....
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Tweetykiss, When i was in Nashville and was dumped from the ex wives insurance i didn't what to do. I hardly knew anyone. I asked around at my job and was told i might be able to go on state aid in Tennessee. I filled out the paper work and submitted it only to be told i was rejected. Through a writer at the paper she put me in touch with several people who were taking state aid to court. There was another guy who had a transplant who couldn't get his meds either. The whole thing was a political mess. Every year i would try again and would be rejected. My transplant doctor back in Pennsylvania wouldn't send me any cause he said he couldn't. He did however tell me to move back to Pennsylvania so he could give me the meds. After trying for the four years in Tennessee the law was changed i believe during the Clinton administration. Human resources called and said i can now get insurance. I was able to see a doctor again. Who then got me the meds i needed. As expensive as Celcept is i couldn't afford it during those four years. When my ex wife and i decided to have children we tried for a year. My wife couldn't under stand why we weren't having a baby. She got checked and was OK. When i got checked it was determined that i had no sperm at all. My doctor said for me i needed a testicle operation. I didn't want to do that for fear my kidney would fail. I told her that and she said i was selfish. So she told me instead of adopting she heard of this procedure called artificial insemination. Using a donor sperm that would have my features we could have a baby that way. So she went that route. My daughter Alissa was born. After six years she tried again but it didn't work. I was then talked into the testicle operation. They took a biopsy of the inside of my testicle and found plenty of sperm. After healing a couple of months i went back in and they extracted the sperm needed to mix with eggs they took out of her. It was then that my kidney failed. The fertilization worked and we had my son. Whether i had my daughter through ivf or not she and my son are my children. I love them both the same. My only problem is i don't understand why they won't talk to me. I feel like i went through too much to warrent this kind of behavior.
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Keefer,
I have to say in all honesty that it was your wife not thinking about you and the fact that you could end up on dials the second you have that operation.......if it were my husband in your shoes (born with one kidney and then needing the surgery to have kids), I would never have him subject to a operation that can cause the one and only kidney to fail......I sure hope you told your divorce lawyer that.......I am sad to say reading all that really upset me since how can people be "me me me me me" like that......now you know she couldn't have loved you that much........she should have had the second child the same way as the first.........you are on hemo because of HER........please excuse me if I sound too blunt.....
She also should have kept you on the insurance so that you can get your meds........you did the right thing of going back to PA, should have done it sooner since your family was being rude to you and then your new kidney would still be working.....sorry your kids don't show you any respect.........That is always a hard thing to deal with.....
It is really bothersome that here your wife is responsible for causing your condition and she left you because you then had it........I hope you let her have it.....
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Tweetykiss, I would love the thought that she would be held responsible for what happened to me. But that kind of stuff only happens on TV. I am a firm believer that there is a winner and loser in divorce. I am not the winner. Nashville Tennessee is a little behind on divorces. The county we lived in had a very gender bias judge. She was famous for really sticking it to the men. I remember talking to people i worked with and every one of them said; "I'm sorry but your screwed. They use a loop hole in the law called "The tender years" law. I think only one other state uses it. Basically it means as a man you give up everything you would get in the divorce and give it to the wife. It is supposed to "benefit" the children. As a man you get every Wednesday for a couple of hours with the kids and every other weekend. Now here is the hard part to understand. I gave 32% of my gross pay to her for child support. All of my retirement, ira's and even my kidney fund money that was raised for after my transplant was given to her. She made over 80,000$ a year and the man she left me for owned his own house building business. She works in medical insurance she works with doctors and hospitals on what to OK for payment. There was something called cobra that would have helped me if i could have afforded it. I layed everything out to the lawyer i had to hire but she just shook her head and said; "Keith, the judge doesn't care about you want she just wants to make sure you can pay the child support. I told her how important it all was to my kidney but the judge didn't care. It was a no win situation. It was just the way things work out sometime. The one thing that helped was a organization i joined called "D.A.D.S [Dads against discrimination] I wish there was something i could do but there isn't. I would love to find out why the kids don't talk to me. I hope when they feel up to it it's not too late
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The judge who ruled in your case is a very cold hearted person......I have also learned recently how cold hearted some people are.....one reason for me coming here......anyway the one you were married to didn't really care about you and wanted to stick it to you when you really didn't have your health and let's just hope that judge never has these kind of health problems or has anyone who has these problems since then if she has any consious at all, she can remember how cold and cruel she was to you..........
Your children should keep in mind they need you too and it may one day be too late for them like when they need you and you should be able to tell them "Sorry Charlie".....
But your wife wanted to have her cake and eat it too.......not right at all......she did have her cake and eat it too which made your life very bad.....
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Tweetykiss, It has been nice to talk with you on dialysis. I hope you can give your husband one of your kidneys. My case is a rare one. Although some people on this site have had a spouse or long term partner leave them. There are some like yourself that have taken this moment in your life and have drawn strength from it. I thing i love about this site is that you will hear many stories pro and con nothing is sugar coated. You will hear these stories and although they may scare you, you will learn from them. When you post a experience you will get two sides to the story. You will get best and worst case scenarios. Don't be afraid that these will happen to you or your husband. But i feel you will keep in the back of your mind and remember the knowledge you acquired here. Thank you so much tweety for allowing me to rant. The things that happened to me down south were surreal. I can now understand what my wife did and why she did it. She was moving up in her job and i was a dead weight around her neck. My daughter put it poetically, "Daddy, Momma acknowledges you to be our father. But will never acknowledge you to be her husband." I think sometimes people do bad things and let the guilt from it run their lives. Keith.