Kinda new to all of this, so just a little bit of venting with a few questions

[MandaMe1986]

Well I am not to sure where to start.  About 6 months or so I along with my doctors decided to stop treatment.  I had done so much, I had been on prednisone for 8 years, been through 3 diffrent series of cytoxan (cyclophisphamide), Cellcept (mycophenolate mofetil), rituxan (rituximab), and cyclosporin. And that is just the major stuff I have tired.  But it wasn't helping I was still dumping way to much protine.  When I stopped treatment my protine level was 3 grams.  And that was low.  I am due for another check up soon, I am in the process of moving hospitals.  So I am just kinda waiting.  I know I am close, I feel it.  I guess one of the main questions I have for all of you is how dose it effect you physically?  That is the part I am scared of the most, I have a set of 3 year old twins.  Somehow in the mist of everything I got pregnant and was lucky enough to have two healthy, beautiful babies.  I love them so much.  I feel so bad they have to see me like this.  Children shouldn't ever have to see there parents like this, and it is all because I was selfish.  I told myself when they were born I was going to make the best out of the life I could give them. And I have, but this last year has been so hard. It has gotten to where they are scared for me to leave the house if I say I am going to the doctors.  They don't know if I am going to come back.  At the moment I am really angry, from the time I decided to stop treatment to now I have felt so much better.  I have been able to go to the park with my children, and play with them on the floor.  And there was a time not to long ago when I couldn't do either.  I found out about a year  ago because I had been taking prednisone for so long it was starting to eat at a bone in my back, and because of all the chemo I was starting to lose the lining in my stomach.  And sense I have stopped treatment in a lot of ways my body is starting to repair itself.  I still hurt all the time, but it isn't nearly as bad as it was .  So I am happy.  But now that I know I am closer to dialysis I am afraid that its going to get just as bad again.  Am I over reacting?  How many other parents are there out there?  What do I need to expect?  Right now I feel so alone, I don't have anyone around me I can talk to.  So anyone out there that can give me even the smallest advice, I would be most grateful.  Thanks

[Rerun]

Manda, I don't have children so I may not be the best person to respond.  Conventional dialysis which I call in center 3 days a week for 3 to 4 hours is hard on you.  On dialysis days you are really wiped out.  I don't know if you are eligible for a transplant with Lupus?  If I were you I'd ask my doctor about PD (Peritoneal Dialysis).  That is where you use your Perineum lining as the dialyzor.  This can explain it better then I can:
http://en.wikipedia.org/wiki/Peritoneal_dialysis 

The PD will give you more freedom and you can do it at home.  With "twins" OMG you need to be at home and feeling as good as you can.

I'm sure others with children will post more.

Best of luck!                   

[paul.karen]

Rerun THANKS for that link.

[MandaMe1986]

Thanks so much, I will look up more on PD. I have read up a little, but I need to really get my act together.  But yeah thank you.  Well when I first got sick  they told me right up front that I will not be eligible to be on a transplant list, and if I do get on I won't move up on it.  He did tell me that if I have a family member who would be willing to give me a kidney, we could talk.  But as of right now, I don't know how I would feel about taking something like that from someone. My mothers seems to to think that when I get that bad, that I will change my mind. But I am not sure.  There is a really big risk, and I don't know if I can let anyone I love go through that.  It is bad enough I have to go through it. You know.

[RichardMEL]

Dear Manda,

It's a tough situation you are facing but I don't think it's anything you can't handle. You've been through so much already in a way dialysis (of any sort) may even seem like a relative walk in the park once you're stable. I know a young lady who has a youngish daughter (6 or so when she started) and she's a single mother so the daughter is often taken care of by her grandmother (or picked up from school, or whatever, when her mum is doing in center). I think kids are more resilient than they are given credit for and can handle things perhsps in some ways better than adults. The important thing is that you WILL be there to spend time with your kids and that's what dialysis will give you. There will be days when you will feel wiped out and a sad sack on the sofa or whatever, but your kids will work with that. I have another friend - another single mum (though she's just become engaged to a nice guy it seems) and has 3 kids from 10 to 6 in age. She's had MS and heart issues over the past 6 or so years and has often spent days in bed. How did the kids react? They help wherever they can around the house!! Of course it is stressful for them and they don't like seeing their mum not well, but they try to not be very demanding of her because they know some days she just can't give them as much as she wants (though she's been much better in recent months since she had some radiation therapy which is great).

Nobody wants to have their kids see them unwell and struggling but for some it's a fact of life, and the kids will probably be OK - specially if they see it's helping you. The older they get the more they can understand just what is going on and why you have to do what you can do.

You might definitely want to consider carefully your mom's offer. If successful a transplant could certainly give you a much more normal and active life and I think that's what your mom would want for you. I absolutely understand your concerns about taking something from someone you love, specially with potential complications etc... however remember that your mom is seeing it as a gift to potentially make your life that much better.. you would do the same for one of your twins wouldn't you? I'm sure you would - without a second thought.

Hang in there!

[Rerun]

I'm not sure this is true, but I've heard that if Lupus took your native kidneys it would also take your transplanted kidney.  Plus, the last thing you need is your immune system suppressed.  Although I may be wrong on this.  I don't have Lupus.

[MandaMe1986]

Dear Manda,

It's a tough situation you are facing but I don't think it's anything you can't handle. You've been through so much already in a way dialysis (of any sort) may even seem like a relative walk in the park once you're stable. I know a young lady who has a youngish daughter (6 or so when she started) and she's a single mother so the daughter is often taken care of by her grandmother (or picked up from school, or whatever, when her mum is doing in center). I think kids are more resilient than they are given credit for and can handle things perhsps in some ways better than adults. The important thing is that you WILL be there to spend time with your kids and that's what dialysis will give you. There will be days when you will feel wiped out and a sad sack on the sofa or whatever, but your kids will work with that. I have another friend - another single mum (though she's just become engaged to a nice guy it seems) and has 3 kids from 10 to 6 in age. She's had MS and heart issues over the past 6 or so years and has often spent days in bed. How did the kids react? They help wherever they can around the house!! Of course it is stressful for them and they don't like seeing their mum not well, but they try to not be very demanding of her because they know some days she just can't give them as much as she wants (though she's been much better in recent months since she had some radiation therapy which is great).

Nobody wants to have their kids see them unwell and struggling but for some it's a fact of life, and the kids will probably be OK - specially if they see it's helping you. The older they get the more they can understand just what is going on and why you have to do what you can do.

You might definitely want to consider carefully your mom's offer. If successful a transplant could certainly give you a much more normal and active life and I think that's what your mom would want for you. I absolutely understand your concerns about taking something from someone you love, specially with potential complications etc... however remember that your mom is seeing it as a gift to potentially make your life that much better.. you would do the same for one of your twins wouldn't you? I'm sure you would - without a second thought.

Hang in there!

Thanks

[MandaMe1986]

I'm not sure this is true, but I've heard that if Lupus took your native kidneys it would also take your transplanted kidney.  Plus, the last thing you need is your immune system suppressed.  Although I may be wrong on this.  I don't have Lupus.

Yeah its ture, thats why he said talk.  My doctor seems to think that now I know what I have I can keep it at bay.  My biggest problem was that my kidneys were already to far gone when I found out I was sick.  So I don't know, I just wouldn't want someone to give me a kidney and then, kill it too

[pelagia]

  you have an awful lot on your plate.  I am sorry that I have little to offer from experience except as a mom.  I agree with RM that kids are resilient.  At 3 they are about as time-consuming as they will ever be.  Give them as much time as you can even if it means letting some other things go.  Does your mom help with them at all?

[MiSSis]

Dear Manda,

I'm so sorry to hear about all of the problems you're having.  I was diagnosed with Lupus at age 24 and that was 30 years ago.  I did receive a transplant from my twin brother in 1980 and it was successful for 3 1/2 years but as you mentioned, lupus did return and take that kidney also.  I opted for peritoneal dialysis and did that for 4 years while waiting on a transplant list.  In Dec 1987 I received a 2 antigen-match kidney from a cadaver donor that lasted almost 16 years.  The lupus did not affect my second transplant.  Talk with your doctor to see if they can determine just how active your lupus is.  Immunosuppressants can help to diminish the effects of lupus so I don't think it should not be an automatic denial for a transplant.  I don't know what other health problems you might have that could affect their decision however.  I've now been back on PD for 5 years and am feeling great.  I'm also hoping to start proceedings soon for a third transplant and if all goes well, my husband will be my donor.  I understand your feelings about having a living donor and it can be a hard decision to make.  This site has a wealth of information on all types of dialysis as well as organ donation.  I'm sure you'll find plenty of information and a wealth of support from the members here.  Best of luck to you.

[swramsay]

Hi Manda,
I'm touched by your post and your situation. I don't have lupus but I certainly can relate to battling for life with a child. My child (now 10) was born 4 years into my fight with bladder cancer - and it's been one hell of a fight. However, I have just dealt with it every step of the way. I try not to suck my family into the day to day battle because I wast things to be a normal as possible. That's just me. I don't talk about the 'sickness' - unless my son asks. Then I will tell him enough to satisfy him for the moment. I don't avoid it, i just don't focus on it. I focus on the normal parts. That helps me to keep my head above water and to just keep going. After all these years, my son knows his mother is strong and is a fighter. He knows what it means to do whatever it takes. I can sometimes see how this has shaped a part of his character in a great way. There are great lessons and blessings to be gained in situations like these. I live for my son so I can totally relate to your love and concern for your children. Just do what you need to do so you can be here for your children and they will be gain in ways you could never have forseen.

[Chris]

Well to inform you, patients with Lupus can have a transplant. Angela515 has Lupus and has had a transplant. She also had some other medical problems posted in the forum, but she is doing well. She also has 2 kids. Hopefully she will see this and give some  input. But when you do look for a transplant center, ask if they are using the steroid free plan of medications to avoid the problems you have had with prednisone and cyclosporin.

The way it sounds from this post, dialysis maybe a walk in the park sort of speak. I was on hemo in center and felt real tired when I first started dialysis. Overtime I was just just wiped out and took a rest after treatment for a couple hours unless I had something to do.

Good Luck.

[shan22]

Im so sorry to hear what you are going through, but hoepfully I can offer you some insight. My mom has been on dialysis for about 4 years, Im now 24 years old. She has had kidney problems since I was born, it was a miricle she had me, just like you had your beautiful children. I dont really remember when I was that little what she went through, I do know that 24 years later she is still with me now. You children will grow and love and support you. It is scary for children you are right Im scared all the time for my mother (she hates that I worry ) but its natrual for a child to be concerned about there mother. Im recently a new mother to a 2 month old and again I cant imagine what you are going through. It sounds like you are a very strong women who can get through it. Im with my mom all the time and see the affects dialysis has on her. She is very tired SOMETIMES on dialysis days, other times she has more energy then I do> It really depends on how much they take off of her, that determines how she feels. However on her 4 non dialysis days she is a normal person that wathes my son, shops,and goes through everyday life. Just stay positive and try to make the most out of the situation. So yes you will be scared but you can do it. Im sure everyone reacts to dialysis different but if you can have twins, you can do anything! They need there mommy! I hope this helped out a little..... good luck

[twirl]

wish I add some words of great wisdom
but I have none
my children are older and they still do not understand how awful I can feel
my children are my strenght and I love them dearly
my husband is alright   
you may feel better on dialysis
I have more energy and I do not sleep as much
good luck to you
I am a twin
I never had twins but I wanted them

[nursewratchet]

Children (especially at three years old) don't know what they don't know.  They will live this life with you, and this will be their "normal".  They won't know for a long time that everybody isn't on dialysis.  It will become part of their life, and yours.  As they grow older, they will understand, and help you more.  They adapt better than adults do.  You'll do great, and you should start to feel better after your treatments start.  PD would be great for you.   

[MandaMe1986]

you have an awful lot on your plate.  I am sorry that I have little to offer from experience except as a mom.  I agree with RM that kids are resilient.  At 3 they are about as time-consuming as they will ever be.  Give them as much time as you can even if it means letting some other things go.  Does your mom help with them at all?

Not so much, my mother and I have never really been all that close.  The one that helped the most was my father. So it all has changed a little.  I am lucky they have a good dad.  He steps up when needed.   But thanks.  How old were your kids/kid when you started daliysis?

[MandaMe1986]

Thank you to everyone who posted, I would love to reply to everyone, becasue you all said something that helped.  I think I will always worry about my children.  I love them so much.   But I can see that this site is going to help a lot. Thanks to everyone.  I did look into PD, and to everyone to brought that up, I think info is going to help a lot.  Being able to do something at home is what I need.  If I could have done the Chemo I was on at home I would have loved that.  And to MiSSis thank you, I have been really worried about the whole transplant thing. 

Once again thank you everyone

[swramsay]

As far as support, online support groups have been my sole support. My oncologist has been a rock for me these past 4 years. I have no support from extended family - they live on the other side of the country or as in my sister's case here locally, she is unstable mentally and has disowned her entire family (including wishing me dead soon from cancer...ugh). My husband, thankfully, takes care of everything financially so I don't have the burden of that (which is huge) but emotionally, he's like adding fuel to a fire. The less involved he with my fight emotionally and physically, the better. Sounds bad, I know but we make it work. It's a choice. A bladder cancer support group (http://blcwebcafe.org/listinfo.asp) has saved my life, given me invaluable information and has pointed me in the right directions many times over the past several years. I know, as I have entered this new chapter of dialysis, this group will be same. I am very grateful. I know the pain of the forbidden dark thoughts of leaving our children. At those times I pray for faith and the wisdom to see the bigger picture. Hang in there.