just depressed!

[karen547]

Now dont get me wrong I am so happy for anyone that is or has gotten a transplant! I just am having a hard day. I am so upset that nobody in my family that are healthy and able has not nor will they step up and at least be tested! I mean am I being selfish?? I just want a normal life for once before its to late to enjoy it ya know!?? I'm 24 and this kidney stuff is really upsetting me today for some reason. maybe its the holidays, i dont know. Just needed to vent.luv ya guys!

[dwcrawford]

You can't help but be hurt.  You can't help but be depressed.  And Christmas time doesn't help at all.  That's why you have to fight the sadness and make it as normal as possible.  Sometimes pretending will help.  Would it help you to know that, since my dianosis slightly over a year ago and since I started dialsysis, that no one in my family has even called to ask me how I'm doing with it or how I feel about it (oh, I've had two calls from family asking for "you know what" cause old uncle Danny doesn't care.  Yes, I am older than you, a lot, but I think basically we all have feelings about wanting support.

Hope you feel better and do have a good holiday, in spite...

[lou]

Hi Karen, wow I read your post and thought I could have written that - its exactly how i feel!

Am also having a really shit day. I am 29 and found out today my tube has to be pulled on and having a new one put in friday. I completely broke down on the nurse when she told me. I just feel like I want a normal life again too. It feels so unfair sometimes doesn't it? especially when you see friends and other young people just getting on with their lives without all these worries.

 I also am on the list and waiting. I had some family members get tested but none were a good match or with my mum ruled out on medical grounds. Guess we just have to stay positive and hope it wont always be like this and that phone will ring one of these days.

Anyways sending loads of love from across the pond!! (I'm in UK)

Lou x x x x

[galvo]

Christmas time can be a real downer. All I can say is that when you log on here you are among people who understand and care. Don't know if that helps any, though. I do hope you have a merry Christmas. Make sure you come here on Christmas Day so that we can all share a big group hug.

[karen547]

I'm crying now too! I am so happy I found this site! You all make living with this disease not so bad. I know one day that phone will ring but it seems as if it never will sometimes.

[monrein]

Karen, I hope that tomorrow will feel like a better day...some days just need to be gotten through and today sounds as if it may have been one of those.  It does suck to feel that your life is on hold (I've been at this since I was 26) but I hope that you won't let that feeling take you over since each day only comes to us once and so we've got to keep on with living WHILE we wait for our REAL lives to begin.
Hugs to you and Merry Christmas. 

[cariad]

Sorry you're having a rough time of it right now, Karen. My family doesn't even know I need a transplant. I feel I am sparing myself a lot of emotional pain by just never knowing how they would react. You're brave to put yourself out there and face whatever results.

Hope you feel better. 

[dwcrawford]

Damn, that's a really good poin Cariad.

[okarol]

  I really feel for you Karen. You're Jenna's age, and it's tough to deal with dialysis, especially when it can seem so hopeless at times. We did have one family member offer, but the rest seemed oblivious. That's why I reached out beyond our community to find a donor. It can be done, and I will help you if you need it. Sending you some LOVE!

[looneytunes]

Oh Karen, I'm sorry that you are feeling so tough right now.  And I don't believe you are being selfish at all.  Just questioning (and who wouldn't?) the obvious.  Why would a healthy person who loves you not offer to be tested as a donor.  But, I'm sure they have reasons and possibly those reasons are based in fears of their own. 

I'm not sure which is worse....well meaning folks who make a spontaneous offer and then never follow up or those who don't mention it at all and sooner or later just fade away because they are too uncomfortable being around someone that has such a need and they are afraid to be a donor.  But, when it is time for you to receive a kidney, it will happen.  Just keep the faith and keep on smiling.   

[Hanify]

Sometimes I think it's good to have a bad day and let it all out!  Do you have someone you really cry on the shoulder of?  Hoping tomorrow you feel better.

[Brianna!]

Karen, I understand. No one is coming foward to offer a kidney to me, either. And you're not being selfish! Of course you just want a normal life! I'm sure everyone here does.

Hugs! <3

[sumodidit]

oh Karen, dont feel bad at least you have a chance for a kidney transplant once you find that right donor. My point is that both my parents have medical issues so thats a negative and I have had some friends offer me a kidney but when the doctor comes back scratching his head like this is a tough one here, since you have a rare disease we cannot recommend transplant because we dont know how your disease would react. Overall a 5% success rate on transplant so my doctor recommended no transplant. Even though you are depressed and feel bad, still look at it as a blessing because it can always be worse. I have accepted dialysis and I would believe I am one of the strongest person in the clinic where I am at, but inside I wish it is a different story, I am depressed, I wish I had a regular life, but it is what it is and I gotta roll with what I got. So now I am content. I wish you the best in finding a donor and even though you are in your situation remember you are still blessed!!

[RichardMEL]

Hey Karen.. *hugs* I think I understand your point totally - if they'd put their hand up and be tested- even if it was negative - you couldn't ask for anything more.. the fact is they know you have a need but won't take that step. The thing is that it is their right, no matter how hurtful that is to you, to make that choice. For some people it could be very scary to consider something like that.. others may be ignorant of the real need here, or the good it would do to you.

My brother and sister both tested (bless them) and it didn't work out, but I'm not bitter about that. They did all I could expect of them and it's not their fault. When I feel sad that I haven't gotten a transplant yet and wonder when it will be and being sick of having life on hold.. I try to think about all those folks on dialysis who do NOT have transplant as an option and have to deal with D for the rest of their lives. That gives me perspective. At least I have the hope of a transplant in some time - even if it is more years - to change my life, at least for some time hopefully - for the better. Some of these guys don't. I see a guy at my unit every so often. he's in his early 50's I'd say - definitely not old. He has been dealing with dialysis for *16* years and right now due to complications is nowhere near the transplant list. This bloke comes in with a smile, and a joke, and no matter what shit he is going through he is always friendly and has a great attitude.

When I feel down I think of him, and all the others (some on this site) who do not have the option of transplant as a treatment option. And the others, like Zach, who do it by choice.


 

[Jean]

Karen, I just want to say I feel bad that you are feeling depressed. I have no advice, nor can I help you, except for   

[jennyc]

 

It is horrid having this at a young age. I can sympathise with you, no one in my immediate family is healthy enough, and dad was only born with one kidney to begin with. So i totally get how your feeling and it's not selfish to want happiness.

anyway.... lots of 

[billybags]

karen547,I feel like crying with you, I think every one on here has crap days. I feel for you young people who just want a normal life. In a way my husband and I are lucky he is 69 and been on dialysis for a year now. There is no chance for a donor. Things are really looking up now, technology is getting better, you hang in there and one day you will be able to do the things you want. Keep the faith.

[Goofy]

I have also dealt with the same issues.  No one in the family stepped up.  It took me a while to get over it.  I know some days are harder than others but look at it this way....each day brings new opportunities!

Get the word out to anyone you know; even strangers.  I just had a stranger offer to get tested but she has high BP and overwight so she is out. 

[fc2821]

  and  things improve for you. 
 

[redz812]

karen, it's the same situation in my husband's family...no offers...I want to sever all communication with them but that wouldn't help my husband. Out of 3 siblings only one calls to inquire about him. It is very depressing. But I always say to myself, what goes around comes around. I am angry with them and I taste bile in my mouth just thinking of how selfish they are being.

[Lillupie]

hi Karen,
  I feel as though i am in the same boat you are on. On my birthday (Nov. 6) it really hit me hard. I am 27, have a now 4 year old daughter (was 3 on my birthday), not married, dont have a job because of dialysis.
 It wasnt until this year or late last year did I really start going online with the online support groups. I started with Kidneyfun.com, but everytime I went on there I would hear of someone always read of getting a transplant or this person is going to donate to this person, but then I always wondered what happened to me. Why cant I get a kidney. For the last going on 3 years now not one person I know has gotten tested! 3 people wanted to but I knew right away that they didnt have my same blood type.
 I dont know why people dont want to give us younger people a chance. I pesronally dont understand that.  It sucks. I guess in God's timing that we are just not ready for a kidney? I pesonally dont understand why people cant atleast get tested! They could atleast say "hey atleast i tried", even if they were a match.
 

Lisa

[Plip]

Not selfish...not at all. Yesterday I read in someone's post that they just knew some secret lab was growing the miracle kidneys for us in a petri dish....well when I find that lab....free kidneys all around ! So have you gotten the exact opposite yet...the almost total strangers offering "any" help and a spare kidney...when you know if it came down to it, it would never happen ? I think that depresses me more at this point than not knowing if I get to return to "normal". Anyways, hang in there...I vaguely remember 24...it was an awesome time in life ! 

[RightSide]

I know exactly how you feel.

I've explained to my family and friends what I'm up against, what the average life expectancy for someone in my age group is on hemodialysis, the whole nine yards.  But no one has even volunteered to be tested for donation.

But that's understandable--after seeing what I'm going through, they want to preserve every bit of kidney function that they have!  Why donate half of it away?

And my young relatives have their entire future ahead of them.  I've had my shot at life.  They're only getting started.

[Plip]

Yeah, I know that feeling. I'm up in the air about transplants. I either want it from an unfortunate accident resulting in a fortune for me or not at all. I see my relatives with kids and don't want to put them in jeopardy of cutting their time short or whatever.

[dwcrawford]

I'm with Plip...I've said it before and I won't repeat.  Also with plip in offer came, not from a total stranger, but a most unlikely source. 

Re life expectancy on hemo... I'm not a statistic.  Are you?

Re being 24 or not remembering 24, I'll be 24 in three years (third time around).  Oh Gawd.