family...

[bluesgirl]

I don't know if Im feeling a bit depressed today since I just had a visit to a "D-place", the one I will probably be going to.
Anyway, the question of transplantation came up, and we talked about having someone who might be willing to give a kidney. My grandparents are too old, my father has had cancer and I don't have big social netowrk. My sister I don't think would be willing since she has never seemed to like me much and we are not very close. Then we came to my mother  and I told the doc about her and the doc said she sounded like she might be a viable donor. I came home and said what the doc had said about transplanting people with my disease 8 she said it was usually entirely possible.) I do have an unsolved issue regarding feverattacks that can come up to 3-4 times a week though, but the doc said that that would of course be looked into carefully before I was allowed a transplant.
I have talked to my mum before about transplants, and she has seemed not very interested, and when we talked now she said that she wanted to see what would happen with my fever, but even if that was to be solved she sounded less than enthusiastic...She said that she would have to make sure that everthing was ok and talk very carefully with the doc and blabla, but yet she has not tried to find out anything about transplantation it seems.
I feel terrible, because I feel a bit bitter that she a) is not offering B) seems not to want to even consider it seriously even when we talk about it, yet you hear people who have been given kidneys by friends and even anonymous donors.
Do I have a right to feel the way I feel or am I supposed to feel guilty about it?

[MooseMom]

You have a right to feel any way you feel.  Period.  No question.  End of story.   

[jbeany]

Of course you have the right to the way you feel!  We all want the unconditional love and support of our families.  We don't always get it, but we certainly want it.  There's no need to feel guilty about being disappointed.

[willowtreewren]

Go right ahead and feel bitter.....

You are hurting and that is understandable.

But don't let it define you. Try to let the negative feelings go if you can. I find that if I allow myself to wallow in them for a bit, I can then package them up and move on. I hope you can, too.

 

Aleta

[RichardMEL]

I agree that you have every right to feel however you want so don't feel bad for that (wait, I just said you have every right to feel how you feel then said don't feel bad. oh crap!  ).

I just want to focus for a moment on where your mom might be coming from. From what you wrote it sounds like she wants to be certain that the best chance for success could be had by solving any issues (eg: the fever thing) first, then consulting with the professionals about what's best for you both - which actually seems pretty reasonable to me. Of course I wasn't there and I don't know her, or what tone she used so I accept your saying she didn't sound enthusiastic and that can be a let down.

I will just relate my own story that is sort of along these lines. Prior to going on D the issue of donation came up of course, and I only have a small family. The only viable option would have been my sister. Mother/father too old/own medical issues and my brother is incompatable. Now down here we were told you can't force the issue or even talk lots with family about it lest it be felt you're trying to influence them by laying a guilt trip or something, so it might be dicsussed but I knew I had to be rather circumspect and let others (eg: mum!) do the talking for me. Anyway when I was pre-D, and for all intents and purposes "normal" my sister too seemed very uninterested in donating or considering it.

Then I started dialysis. She came to visit me a few times and saw what it was all about. She saw the fluid restrictions, she saw the machine, she saw the other patients etc. Suddenly what had been a concept was absolutely real for us and she could see I was in this difficult situation.

She stepped up and got tested. I did not talk to her further - she came forward herself. I admit I was surprised, but so proud and happy.

As it turns out she got to the final hurdle and was knocked back by the evaluation comittee - but that was hardly her fault. She did all I could ask/expect of her and came forward when it counted.

Perhaps your mother is in a simular situation - it's all a bit "unreal" for her rather than a reality.

The other thing is that donating an organ isn't like giving $100 to a mate. It's a serious (and for some - scary) undertaking. If this is the first time she's been confronted with this as a real option then fear may well be driving her. She doesn't know enough about it. She needs to know more, to be comfortable with the situation and the potential risks, etc. That again seems like a reasonable response.

What *I* would do if perhaps just give her the number of the transplant co-ordinator and just say "If you've got questions about how this could all work, or what's involved, here's the number - think about it and give them a call"

it might take a bit of time for the concepts to sink in the brain and for her to become more comfortable with the idea and she just may make that call.

All you can do is provide whatever info she asks for, and if she doesn't ask or act - try to not be bitter towards her about it (I know that's hard!). I admit when my sister didn't come forward initially I was a bit disappointed, but I also knew I had to respect that everyone makes their own choices and I shouldn't hold it against her.

I do hope things work out though.

 

[okarol]

I am sorry. It's very disappointing. 
My side of the family has kidney disease so there wasn't even a mention of anyone donating.
I tried to be tested but am the wrong blood type. My husband is disabled with chronic pain issues and NSAIDS have done some kidney damage.The doctors would not consider him.
My husband's brother and niece did offer, were found unsuitable, but we were grateful for the offer.
We had someone from the church offer, and 2 women from my volunteer group. No match.
I just want to say this: just because people are around does not mean they are willing, or healthy enough or even a match. So when you hit an obstacle, try to keep going.
It was at this point I turned to the internet. You can read our story here http://ihatedialysis.com/forum/index.php?topic=2167.0
There will be possibilities if you're willing to put your story out there.
I am happy to help if I can  - please let me know.

[bluesgirl]

thanks everyone. I think Richardmel may be on the right track. of course it's scary for her too, I just get so frustrated. No one in my family has come forth and even elected to get tested. This xmas ( although granted I was feeling a lot better then) my extended family would say things like "when you have your health back" or "when you get better..." or "hope you get well soon," like what I had was a common cold. I know I probably should see it this way and that they were probably just being kind, for which I'm glad, but I still felt irked about those expressions, as if none of my relatives realized that this is a life threatening disease that you don't get "your healt back" from.
Also, my mum and I have always been relatively close, what with her calling me and checking on me every day, but now, even though she's a nurse, she doesn't seem to try to find out anything about the disease or dialysis...she has said things like " won't it be nice when you get on dialysis, perhaps your fever will go away..." now, I know it's probably mean of me to feel irked about her saying that, but NO  I really DON'T think it will be "nice" to go on dialysis. It's like she doesn't realise that it's a treatment that also breaks the body down and potentially makes you feel very tired and bad as well. I mentioned to her that a dialysis patient I met the day before yesterday likened a treatment to " a marathon race for the body", she just said "oh." She also doesn't really want me to go on home or self-care, because as she said "won't it be nice to be in there and have someone take care of you and do things for you a bed to lie in while you have treatments..."
She is also inclined to to seem to want to blame me when I get my fever episodes. At some point she blamed my prescious animals, but nowadays she says thing slike " oh did you let yourself get cold again, that 's probably why you get the fever!" or "perhaps you didn't take your meds on time and that's why you got your fever..." ( there have been plenty of occations where I did take my meds on time and still have gotten a fever) or "oh ,but of course you get a fever when you go out into the rain, don't do that!" it's as if now she blames me for trying to live  a normal ( as normal as I can) life and not going into hiding and just staying at home...She's not focusing on "oh how frustrating the disease must be" or blames the disease, rather she sometimes blames me for "making myself sick" even though what I'm doing is just everyday activities.
I don't know, maybe I'm just being a bitter (old ) hag ( I'm 30 my the way) but sometimes I just feel so alone with my grief and my emotions...

[bluesgirl]

thank you okarol. I'm in Sweden though, so I don't think the program is avaiable for me.

I am sorry. It's very disappointing. 
My side of the family has kidney disease so there wasn't even a mention of anyone donating.
I tried to be tested but am the wrong blood type. My husband is disabled with chronic pain issues and NSAIDS have done some kidney damage.The doctors would not consider him.
My husband's brother and niece did offer, were found unsuitable, but we were grateful for the offer.
We had someone from the church offer, and 2 women from my volunteer group. No match.
I just want to say this: just because people are around does not mean they are willing, or healthy enough or even a match. So when you hit an obstacle, try to keep going.
It was at this point I turned to the internet. You can read our story here http://ihatedialysis.com/forum/index.php?topic=2167.0
There will be possibilities if you're willing to put your story out there.
I am happy to help if I can  - please let me know.

[MooseMom]

I'm sorry, but I can't keep quiet about this a minute longer, and I apologize here and now if anything I am about to post offends anyone.  That is certainly not my intention.

Donating is scary, but you do everything your power to save the life OF YOUR CHILD.   If it is impossible for you to donate to your child because of medical issues of your own, then that's that...fair enough.  But to be a nurse and to not bother to educate yourself about dialysis when your child is facing renal failure is unforgiveable.  I don't care about "fear"...you overcome your "fear" and save your child's life!  I'm just stunned that this is even a question!  Look at all Okarol has done to help her daughter survive!  She couldn't give a kidney, but my God, the woman everything in her power to help her child.  That's what mothers DO!

I'm sorry, bluesgirl, but there is something seriously wrong with your mother.  But you probably already know that.  I am truly gobsmacked by how she is reacting to your situation.

Really, is there anyone on this board who would not do everything possible to help their child survive a chronic, horrible illness?  What am I missing here?

[okarol]

Really, is there anyone on this board who would not do everything possible to help their child survive a chronic, horrible illness?  What am I missing here?

It is very sad, but it's not the first time we've heard of this here. I will never understand. 

[MooseMom]

This is not something I want to understand.

[rsudock]

I agree with Moosemom here...that's why my mother and I have issues!

xo,
R

[MooseMom]

I agree with Moosemom here...that's why my mother and I have issues!

xo,
R

I'm not surprised.  I can understand a sibling or a cousin hesitating, but a parent?  A parent not even making the effort to learn about her child's illness and the consequences of treatment?  No no no no...that's just not right under any circumstances.

[tyefly]

Very sad....  its happens to the best of us....  I have support with some family while others dont have a clue...

stay strong....

[galvo]

bluesgirl, no need to feel alone any more. You are now a member of the IHD family, and you couldn't find a better lot of understanding, caring people.  from the other side of the world.

[texasstyle]

I imagine you feel that "if they loved me, they'd donate a kidney to me". and you're feeling short changed. Don't. Just like you are dealing with so many emotions as a CKD patient, the other person would have so many to go through to. Sometimes it's not even the fact of wanting to donate or not, but from a very realistic standpoint that God forbid, what if something happen with the donors kidney health later in life? They would be down one less kidney. I thnk mosts donors always have this at least cross their mind. Of course each persons decesion to donate regardless is thier own. I would probably hurt my parent would donate also, but everyone deals with issues differently. They have to deal with thiers the way they see fit. You have a family here too. Sorry you are feeling this way. I hope tomorrow is a better day for you xox

[bluesgirl]

to be fair, she has tried to research the fever-episodes a lot, since docs don't seem to either care or really know what to do. She's amde a list in her head about things I shouldn't do, in case it gives me a fever, things like not showering with the nozzle on the tube or being in the bathroom when the dryer is on, and then if I do those things, she pretty much acts as if I only have myself to blame for "making myself sick..." the fact that I'm jsut trying to live a normal life and find it unfair that I seemingly cant' doesn't seem to want to register. Alos, as I said it's as if she doesn't realize that dialysis isn't a treatment where you lie in your bed and rest and people serve you with sandwhiches, or like having a bloodtest done. Perhaps she doesn't really WANT to face that it's a strenuos treatment and you can feel quite sick from it. She didn't evne know that for instace you have fluid restrictions...I asked her today whe I called her if she has read up on dialysis,what she know about it, she said "other than it being a treatment to clean the blood, no I haven't read up on it." Perhaps I'm making things bigger than they are, I don't know...and as I said, she has a tendency to yell at me sometimes rather than being supportive. Like this xmas, when I had forgotten to take my meds, because my brain had somehow blocked the fact that I needed to take them (wierd feeling but that's how it felt, denial I guess.) She chewed me out and said that "how stupid do you have to be to forget to take your meds, you've had disease for several months now, you should be used to it!", (rather than saying, oh, that's not so good, But what's done is done, I'll remind you to take them when we get home.) Then when I started crying, she said something along the lines  of "oh, your crying, why are you crying?" and then she wouldn't own up to her coments really hurting me but just put it on me saying " well, if yot took it that way, I'm sorry..." in a tone that said I was being silly and she wasn't sorry at all.
Perhaps she's as frightened as me and  I AM just bitter and holding grudges, but there have been times when I've had to comfort her, because she's so sad for me, something which I really don't have the capasity for...I want someone to take care of me and comfor me... and  now that I'm on a roll, I really feel the need to tell someone that may have been though the same things as I am going though how I'm feeling about things...
I also found out yesterday, that it's just about time to start D- this coming week or the next as I now have a creatinin level of 800 and something....   

I'm sorry, but I can't keep quiet about this a minute longer, and I apologize here and now if anything I am about to post offends anyone.  That is certainly not my intention.

Donating is scary, but you do everything your power to save the life OF YOUR CHILD.   If it is impossible for you to donate to your child because of medical issues of your own, then that's that...fair enough.  But to be a nurse and to not bother to educate yourself about dialysis when your child is facing renal failure is unforgiveable.  I don't care about "fear"...you overcome your "fear" and save your child's life!  I'm just stunned that this is even a question!  Look at all Okarol has done to help her daughter survive!  She couldn't give a kidney, but my God, the woman everything in her power to help her child.  That's what mothers DO!

I'm sorry, bluesgirl, but there is something seriously wrong with your mother.  But you probably already know that.  I am truly gobsmacked by how she is reacting to your situation.

Really, is there anyone on this board who would not do everything possible to help their child survive a chronic, horrible illness?  What am I missing here?

[rsudock]

to be fair, she has tried to research the fever-episodes a lot, since docs don't seem to either care or really know what to do. She's amde a list in her head about things I shouldn't do, in case it gives me a fever, things like not showering with the nozzle on the tube or being in the bathroom when the dryer is on, and then if I do those things, she pretty much acts as if I only have myself to blame for "making myself sick..." the fact that I'm jsut trying to live a normal life and find it unfair that I seemingly cant' doesn't seem to want to register. Alos, as I said it's as if she doesn't realize that dialysis isn't a treatment where you lie in your bed and rest and people serve you with sandwhiches, or like having a bloodtest done. Perhaps she doesn't really WANT to face that it's a strenuos treatment and you can feel quite sick from it. She didn't evne know that for instace you have fluid restrictions...I asked her today whe I called her if she has read up on dialysis,what she know about it, she said "other than it being a treatment to clean the blood, no I haven't read up on it." Perhaps I'm making things bigger than they are, I don't know...and as I said, she has a tendency to yell at me sometimes rather than being supportive. Like this xmas, when I had forgotten to take my meds, because my brain had somehow blocked the fact that I needed to take them (wierd feeling but that's how it felt, denial I guess.) She chewed me out and said that "how stupid do you have to be to forget to take your meds, you've had disease for several months now, you should be used to it!", (rather than saying, oh, that's not so good, But what's done is done, I'll remind you to take them when we get home.) Then when I started crying, she said something along the lines  of "oh, your crying, why are you crying?" and then she wouldn't own up to her coments really hurting me but just put it on me saying " well, if yot took it that way, I'm sorry..." in a tone that said I was being silly and she wasn't sorry at all.
Perhaps she's as frightened as me and  I AM just bitter and holding grudges, but there have been times when I've had to comfort her, because she's so sad for me, something which I really don't have the capasity for...I want someone to take care of me and comfor me... and  now that I'm on a roll, I really feel the need to tell someone that may have been though the same things as I am going though how I'm feeling about things...
I also found out yesterday, that it's just about time to start D- this coming week or the next as I now have a creatinin level of 800 and something....   

I'm sorry, but I can't keep quiet about this a minute longer, and I apologize here and now if anything I am about to post offends anyone.  That is certainly not my intention.

Donating is scary, but you do everything your power to save the life OF YOUR CHILD.   If it is impossible for you to donate to your child because of medical issues of your own, then that's that...fair enough.  But to be a nurse and to not bother to educate yourself about dialysis when your child is facing renal failure is unforgiveable.  I don't care about "fear"...you overcome your "fear" and save your child's life!  I'm just stunned that this is even a question!  Look at all Okarol has done to help her daughter survive!  She couldn't give a kidney, but my God, the woman everything in her power to help her child.  That's what mothers DO!

I'm sorry, bluesgirl, but there is something seriously wrong with your mother.  But you probably already know that.  I am truly gobsmacked by how she is reacting to your situation.

Really, is there anyone on this board who would not do everything possible to help their child survive a chronic, horrible illness?  What am I missing here?

My baby bro is on dialysis and does really well with it (ie He has accepted his life on D) anyway when I started I was having a VERY rough time and my mom tells my sister "What is R's problem? Neil does fine with it. Why can't she accept this?" Trust me Bgirl I know exactly what you are dealing with. Another thing my mom says "Well what does R want me to do? Kill myself so I can give her a kidney?" My mother is off the hinge somewhat and over the top! Instead of saying "I love you" "I'm sorry that you are sick" or "How can I help you?" It is just constantly defending herself and her terrible parenting over the years. (of course my siblings and I turned out amazing so, she must of did something right)

Hang in there...   I feel for ya!!!

xo,
R

[MooseMom]

I imagine you feel that "if they loved me, they'd donate a kidney to me". and you're feeling short changed. Don't. Just like you are dealing with so many emotions as a CKD patient, the other person would have so many to go through to. Sometimes it's not even the fact of wanting to donate or not, but from a very realistic standpoint that God forbid, what if something happen with the donors kidney health later in life? They would be down one less kidney. I thnk mosts donors always have this at least cross their mind. Of course each persons decesion to donate regardless is thier own. I would probably hurt my parent would donate also, but everyone deals with issues differently. They have to deal with thiers the way they see fit. You have a family here too. Sorry you are feeling this way. I hope tomorrow is a better day for you xox

I just can't entirely agree with this.  You are not necessarily wrong, but this is your CHILD we're talking about here.  Of course a donor would have many emotions to deal with, but a parent should deal with them effectively, get over themselves and spare their child the suffering caused by dialysis and the prospect of early death.  Those of us with CKD face fear every day, yet we get on with it...we can't put a spin on it or deny it or run from it. 

Women who go through pregnancy and childbirth face a statistically much higher risk of death than a woman who donates a kidney to her child.  I can't believe that a mother would willingly take a higher risk to HAVE a child but not take a lower risk to SAVE that same child.

I don't care about a parent's "issues".  That's too damn bad.  You brought this child into the world, and you have a duty to save her if you can.  If you have some compelling reason that you cannot even be tested, then you sit down with your child and you TELL her and EXPLAIN to her why your "issues" are more important than her life.

The whole "I may need that kidney later, so I won't donate it now" in the absence of any real evidence that current renal function is in any way impaired or may be compromised smacks of something that makes me uneasy.  At what point does one become comfortable with having one kidney?.  It feels like it is a conjured up fear by those who don't really want to donate, and that's certainly fine, but be honest about it.  There is no sin in feeling fear.  But not many people are brave enough to tell their suffering loved one, "I'm afraid."  But there are many, though not enough, altruistic donors who do not use this excuse as a reason to keep from being a hero.  Self-preservation is a very strong human instinct.  But so is the instinct to save your child.  Well, at least it is in some parents, obviously not all.

I understand the anxiety that comes in considering donating to a stranger, a family member or even to a spouse.  But I truly do not understand the refusal to donate to your child....that's a whole different ball game.

I don't know the whole family dynamic involved, but it sounds like in the cases of both bluesgirl and rsudock, it's not merely a matter of mothers who refuse to be tested, rather, it is a case of mothers who are completely unsupportive in any way.

(I just want to be VERY clear here.  I am NOT disparaging ANYONE who might be able to donate to a sick loved one but who really does not want to.  It must be very hard indeed to wonder if you are somehow secretly being expected to donate just because you happen to be a family member or a spouse of someone in need of a kidney.  Your reasons are your own.  Your body is your own, and no one should ever expect you to undergo surgery just to relieve someone else's suffering.  Your fears don't have to be justified if you do not need them to be.  You have complete freedom over your body.  No one should ever pressure you into doing something that frightens you.  But in my heart of hearts and soul of souls, I DO believe that if you refuse to donate to your own child (barring medical impediments, of course), then you surely must feel something very close to shame.)

[bluesgirl]

[/quote]

I don't know the whole family dynamic involved, but it sounds like in the cases of both bluesgirl and rsudock, it's not merely a matter of mothers who refuse to be tested, rather, it is a case of mothers who are completely unsupportive in any way.

([/quote]

She does help me with practial things, coming up and helping me stort things out, like the renovation of one of the rooms in my apt. She also calls the doc for me from time to time and helps me with authorities. She listens to me when I'm sad, although she can't say much to help. I ust wish she wouldn't hae this other side to her.

[MooseMom]

I'm curious, bluesgirl.  What do YOU think is going on inside of your mother's head?  Why do you think she is not educating herself about your condition?  Most of us can at least hazard a guess as to what someone else MAY be thinking; often, our gut instinct is correct.  So what is YOUR gut instinct?  Do you think she is afraid of what she might learn?  You do seem to suspect that fear is at the heart of her behavior; do you have a strong impression of exactly is frightening her?