I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: karen547 on December 15, 2009, 02:39:45 PM
-
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!
-
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...
-
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
-
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.
-
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. :thx;
-
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.
-
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. :)
-
Damn, that's a really good poin Cariad.
-
:cuddle; 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!
-
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. :grouphug;
-
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.
-
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
-
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!!
-
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.
:cuddle; :cuddle; :cuddle; :cuddle;
-
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 :cuddle;
-
:cuddle; :cuddle; :cuddle;
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 :cuddle;
-
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.
-
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.
-
:grouphug; and :pray; things improve for you.
-
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.
-
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.
:grouphug;
Lisa
-
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 ! :boxing;
-
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.
-
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.
-
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.
-
I gave a kidney to my daughter. It was over nine years ago and I still haven't noticed any ill effects. In fact I'm already older than my father was when he passed away, and I've outlived a brother - so I'm not buying the argument that my time is going to be cut short.
I do also read things like the following:
"Current research indicates that kidney donation does not change life expectancy or increase a person’s risks of developing kidney disease or other health problems."
http://www.umm.edu/transplant/kidney/qanda.htm
-
I think there is a better chance of all this holiday food killing me! :)
-
I really believe in organ donation and wish there were more donated... I feel the same way.... I wont take a kidney from my daughter who is only 24... she hasnt even had kids yet.... but I will take one from one of the healthy older adults that I know..... but I never asked either.... I would rather truely get one from a desease person..... but that can take a long time... wish I could start growing my own.... I dont think that will happen in my life time but it will happen as long as the religous people dont abuse that too like they are trying to do with abortions...... Growing organs will be the next great accomplishment ........ they have already started and some organs are used now...we just need more acceptance...
-
Well, for god's sake eat then. But please respect other people's feelings and opinions.
-
Well, for god's sake eat then. But please respect other people's feelings and opinions.
Yes we all need to respect others feelings........ I am not hungry.....
-
I don't see how Plugger posting about his personal experiences and beliefs as a donor is at all disrespectful of other people's opinions. :waiting;
If we want more people to donate and get more people off dialysis, we need to hear from the donors. I personally want to hear the stories, because my husband is going to (hopefully) be donating to me, and the thought of something happening to him is really terrifying. Intellectually, I know that donation carries very few risks, probably similar to the level of risk I undertook to have children, but I still find the donor experiences helpful. Thanks, Plugger.
When I ask my husband if maybe I should just wait it out on the list, his response is an exasperated "Oh, shut-up, will you?" (Welsh humor)
-
Somehow or other two or three of you people will take offense to anything I write. That is neither vitriolic nor passive aggressive. I'm just stating that I agree with another poster and that I want my opinion respected just as you all do and as I'm sure the other poster does. I'd bet that on any subject you could find experts, doctor, organization, surveys, statistics etc. to say anything you want it to.
-
Dan no offense taken....... I was just stating that I was not hungry.... :rofl;
-
Tye, it has nothing to do with your comment. There is a person who is constantly calling me down in posts. I try to avoid things that person posts in but don't always manage to. I think all deserve an opinion and all are respected. What I resent more than anything is the implication that people on dialsysis have less of a quality of life. People can go hunting or trapping for kidneys if they are comfortable with it.
-
There is a person who is constantly calling me down in posts. I try to avoid things that person posts in but don't always manage to. I think all deserve an opinion and all are respected.
Dan are you referring to me? Perhaps you should just say so. I am a pretty easy person to avoid around here, but if I know you don't wish to hear from me, then I will happily not reply to your posts. This discussion, of course, was started by someone else, and I felt I had something valid to say to her. When another poster is talking about his own experiences and is admonished to 'respect' others, I have every right to state my opinion and inform him that I found what he said respectful and helpful. I still don't see where the comment about respect came from, but I did not reply because I was offended. Your comment made it sound like you found Plugger's comment offensive and that he was not respecting the opinions of others. If that is not what you meant, then it's not what you meant. The original poster appears to want a transplant, and would apparently appreciate a live donor stepping forward, so discussing his experiences hardly seems out of place here.
I never displayed any lack of respect for your opinions on the matter. I have heard you: you do not want a live donor.
What I resent more than anything is the implication that people on dialsysis have less of a quality of life. People can go hunting or trapping for kidneys if they are comfortable with it.
I missed the part where anyone said or implied that people on dialysis have a lower quality of life. Kids on dialysis do - that is just a fact, at least it was when I was a kid on dialysis. Whether someone does better with a transplant or dialysis as an adult is individual. It seems to me that you are taking people's choice to pursue a transplant very personally.
"hunting and trapping for kidneys" is a deliberately provocative and disrespectful phrase. This does not seem to reconcile with your comment that everyone should be respected (a belief I share with you, by the way).
-
I believe everyone should follow their own desires and beliefs. One poster said he gave to his daughter. Who wouldn't give to a chld, parent or sibling? Another poster made a comment with which I agreed. Then the caca starts. Things posted in the past have included requiring dialysis health care works to give a kidney. Other such suggestions led to my rude comment of "trapping and hunting". Yes, I'm referring to you. You seem to have made it your mission, for the past few months, to tell me what I can and cannot say. If I am rude to a poster, let him or her call me on it. I realize that you consider yourself better than most people but it still isn't your place to do so. We all can't travel in complete class and eat in exquisitve restaurants, though some of us would like to and some of use are possibly as close to being brilliant as others of you are. Surely this is not PASSIVE agressive. Yes, in response to a post about appetite (question of mine). I can afford it, I am able to do it and in a position to do it. Without those snide superiors remarks I could have read good things in that post of yours.
All I know is there are people around doing dialysis for years. They didn't die in five years. Personally I've been counseled that I will do well either way I choose and it isn't necessary to make up my mind at this point. I've been very lucky in all this. Dialysis is NOT fun. It is just that I tend to try to make the best of it. Sometimes I wonder if all the "just depressed" people would be less depressed if there weren't so much negativity to dialysis.
-
Patients can choose to stay on dialysis or get transplanted. They can also choose to post their feelings or not.
But since this thread is about being young and depressed, let's keep it on topic or I will lock it. Thanks.
okarol/admin
-
I am 46 and have been through depression on and off for years. It sucks and dialysis can make it worse.
-
I think most people on dialysis or with any chronic disease faces depression at some point. For some it is worse than others. As for to have a transplant or not have a transplant it is a personal decision and everyone is entitled to their opinion. Please people respect other people. It makes life a lot easier.
-
Well, I had a reply typed but deleted it because it continues off on this tangent. I feel that I have been misunderstood and maligned for things that I did not actually do, but I want to respect the rules of the forum, so I'll stop there. Sorry for the wandering off topic, Karol. :)
Karen, are you feeling any better? Hope so. :cuddle;
-
Depression is a miserable thing especially when such issues as you have are present too. I hope you work out the all the problems and get what you need. Most of all, I hope you can manage your depression and not let it take charge of you. I apologize for getting off topic as I realize this is a most serious issue.
I will say that my email is on the profile and anyone who needs to get a message to me without disrupting here, feel free to use my email.
-
Sadly depression at any age is devastating. It seems to go hand in hand with chronic illnesses, which is to be expected I suppose. Karen, I hope you can get some support and things get better for you. :cuddle;
-
Hang in there Karen. Remember that you are not alone in your feelings of depression. We know what it's like for you. Feel better soon.
-
Hi Karen, you have every right to get upset. Come and vent more often. Not only are you dealing with your health, but your Mother has been going through so much. That has to add to all your worries. Kidney failure shouldn't be a part of the life of someone in their 20's. When you start aging, you expect some problems with your health, but no one expects young people to cope with such huge problems. You know you have many here who admire your strength and we are here for you. :cuddle;
-
Thank you everyone! I was just in a funk I suppose that day! I was just thinking about all of the things we all on IHD have to go through and it just got me upset. Another thing that is semi unrelated thats bugging me is this drama that is going on between my sister and my mom and her husband and somewhat my dad. The day she called and told us no to the transplant, my dad got really mad and upset. He has since apologized, but my sisters husband has not said one word to him , or any of us for that matter... he hasnt since they got married really either.... yeah hes a winner!! anyway my mom is upset because she wants Brett (the husband) to talk it over with my dad so we all can move on! My sister wants all of us out there for next X-mas, but how or why should we when Brett clearly doesnt want us out there. I dunno, it seems like since my sister has gotten married shes all about brett brett brett and completely has forgotten about us in the process.