advice and help

[Ohio Buckeye]

Hi Emma
Most of us have been where you are now and can relate to
how you are feeling.  Frustrations, fear of the unknown and the
future is normal.  We are here to help each other through this
time and will be here for you as well.  This site and family has been
such a blessing to me.  Everyday I find I have to check in to see
how everyone is doing.  As someone else has said "We'll get
through this together".  Many of us have family that for one reason
or another don't come forward to offer a kidney.  Give your
brother time, and possibly try to get on the transplant list.

[keefer51]

Emma, when i was on dialysis the first time i had two small children and a wife. I had to have an operation to have my son which is when my kidney failed. My one brother did donate his kidney to me. We were lucky and had the support of family and friends. Like most people however they think a transplant cures you forever. Mine lasted a little over ten years. I was in another state at the time i knew something was wrong. I moved back to where my family is and went on dialysis again. No one in my family even thought of being tested. I didn't expect them to. I had many friends in the other state i lived in and almost every one of them would say "Hey man I'll give you one of mine" Well when i wrote them and told them what was going on i never heard back. I have been approached by my other brothers girlfriend about donation. I told her the facts and told her to look up more on transplants. That was a year ago. Some people family or not just don't want to do it. I now have a girlfriend who has been tested and is a fair match she and I are going through the process to see if everything else is OK. Most people look at me and say how good i look for being on dialysis. Some even can't believe i am. Try not to be too hard on your brother. I am just so grateful some would even concider donating.

[Lucinda]

Hey Emma

I am in the same boat.....getting ready to start on dialysis.  The thing I find the hardest is that my family don't get the "tired" thing at all.  They all think that the way I am feeling is normal and that everyone gets a little tired.  They have no understanding or concept of how bad you can feel.  There are just things I can't do in one day anymore like a full day in the office, then home to washing and cleaning, feed the dogs and take them for a walk, go out to dinner with clients and then come home and be sexy for the husband.  That kind of energy is really a thing of the past but try and explain that to them!!!  I have been offered kidneys from friends but I am going to give hemo a whirl and see how I go.  Hope it all works out well for you.  Pop in here anytime you need  a shoulder.  Cheers, Cindy. 

[EMMA]

Thank you everyone...

[Lulu]

Hi Emma - Just wanted to let you know I feel your pain. I am in the same position. Had CKD my whole life and have made it over a decade past when Docs said I would have to start dialysis and get a transplant. Now, as you say, it is immanent. And yet, my Mom still refuses to discuss my illnesses and my brother doesn't even acknowledge that I am ill. My mom called last month (2nd time this year  ) and I told her I was going to have to start dialysis and get a transplant. Her exact words to me were "Oh, I Thought your kidneys got better." I was so hurt, to the point of anger. WTF?!!  Even people who know nothing about kidney disease know that it gets WORSE!! I honestly am past even trying to get through to my family. I have to take care of myself now. The worse my illnesses get the less I talk with my family. I don't know why, but they just can't emotionally handle it. I often feel like an island and the last few years I have just stopped calling my family altogether.  I have the same mood swings about the dialysis and transplant, some days I am on top of it and am ready. Other days I am a basket case. Some days I sleep almost a whole day away.  Just wanted to let you know I am here for you. I am sorry that your brother won't donate. It is a crappy feeling.