Newbie here and questions

[stauffenberg]

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.

[keefer51]

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!

[tweetykiss]

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.......

[keefer51]

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.

[tweetykiss]

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".....

[keefer51]

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.

[tweetykiss]

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.....

[keefer51]

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

[tweetykiss]

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.....

[keefer51]

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.