Cant take it anymore.

[Lillupie]

Im sick to my head of dialysis every single damn day. Im so sick and tired of bill collectors calling me for money that I do not have. I want to eat normal food. I do not want to spend all day long making food from scratch. (I HATE LEFTOVERS, so dont suggest that). I have been doing this for 5 years. My antibodies are high from pregnancy, transfusions, lupus, etc. It seems as though I am constantly getting the door shut in my face. Noone wants to step forward to even get tested in the 5 years I have been waiting. Everyone knows how much I hate dialysis. Ive lost a few friends on facebook because they get the impression that Im using facebook to ask for a kidney, and how dare I do that. But im desprate!
 Im 29 years old and so many people since I have started get a kidney and off this hell hole. And what about me? Why cant I get one? I am begining to feel that God doesnt want me to get off of dialysis.  If that is the case I thnk I would rather jump off of a bridge then to continue on with this utter nightmare. I would rather have my legs and arms cut off then to endure this. Atleast people who have their legs and arms cut off can have a grilled cheese, or lasagna.

Every transplant center I go to wants me to get a live donor. Pretty  much beccause I would reject any kidney that comes along. I dont understand for me why no human being is willing to step forward. I have been waiting for 5 years.

Lisa

[MooseMom]

You know, Lisa, I think about you a lot.  To me, you illustrate perfectly the anguish and frustration of ESRD/dialysis, and your situation shows me how unfair life can be.  I wish I could offer you words of comfort, but I'd be a hypocrite in doing so because to be honest, if I were your age and in your situation, I would be so angry that I wouldn't be able to think straight.

I can't answer why no one will be tested for you.  No one offered to test for me, either, but since I am not 29 and haven't been on D for five years, I didn't care that much.  But I was baffled by why no one would take the opportunity to at least see if they might be able to save someone's life.

More and more people are using social media to find living donors, so don't let the opinions of others deter you.  They're just feeling guilty because they don't want to face the fact that they are not big hearted enough to consider donating, so they blame you for making them feel uncomfortable.  I know Okarol is using social media to find a donor for her daughter, and LarryG found a donor on Craigslist.  So I think you should use FB MORE to find a donor.  Maybe others on IHD can come along and give you more advice in this regard as I despise fb and wouldn't go near it!  LOL!

[smcd23]

Lisa, I don't personally feel your pain, but my hubby does, and through him I get a pretty good idea of what you're going through.

I was the only person who tested to be his donor, and was accepted. Kidney problems and diabetes run in his family - his sister was willing to test, she has stones and is too small. His brother couldn't even complete the preliminary testing, and then asked for a medical reason to not donate (we're not 100% on that part, but pretty darn sure). When he had his rejection issue and I had to go up to the hospital while he was in surgery, his friend was here. When I got home, I was telling his friend how I'd trade places with him in a heart beat, and his friend said he would too. I wanted to scream "Then why the EFF WON'T YOU GET TESTED?! Why won't you, who is so willing to trade places with him if you could, do something to stop this?" But I didn't, I just cried. Our neighbors said they'd get tested, they haven't called yet. His cousin said he'd get tested, but his uncle (cousins father) talked him out of it. Seriously? You'd rather your nephew die? I have choice words for him.... As for people unfriending you on Facebook because of asking for a kidney, or seeming like they are? Forget them! Seriously, you don't need anyone in your life like that. If they won't take the time to try to understand what you are going through, how frustrating it is, and trying to support you, then don't let it bother you and don't let their negativity and lack of compassion bring you down.

He has now had 2 failed kidneys, both presumably rejection (mine was ruled thrombosis, but they now suspect the clot was part of rejection, and the 2nd one definitely rejected) and while they have a plan for next time, if the next one doesn't work, he is out of luck.

He often tells me how sick of dialysis he is, sick of the pills. He's currently on in center hemo using a catheter so there are no needles, but he won't do another fistula, he can't, he has clotted off 3 of those and has no other place to go. We were doing PD at home before this most recent transplant, but he hated setting up the machine, hated all the waste and boxes. He has told me several times that he wants to give up, that he thinks he is God's punching bag. Sometimes, I feel that way for him.

The food thing is a pain in the butt, I hate it. I have a hard time losing weight because I refuse to buy and cook 2 separate meals - one for him, one for me.

You're not alone. Tony will be 28 in a few months. He's been dealing with this for as long as he can remember, whether it was from the cause or from the fallout of the original problem not being fixed. He's never been able to do the things a "normal" person can do. I know he also feels a lot of guilt for throwing so much on me as far as housework etc, and also not being able to do normal things like take a family vacation because we don't have the $ since he can't work. It sucks.

But you know what I do? Every day I remind myself that there are people far worse than you and him. People that have no hope, have no chance of getting better and having some "normal" years. Just the other day a friend of mine told me one of her Navy friends, who was 25, was in hospice. He was diagnosed with hodgkins lymphoma and there was nothing more they could do for him, and he had called to thank her for being his Navy family when he was enlisted. He has a 5 year old son and a wife, and he has to say goodbye to them. At 25. No other choice. So as much as ESRD/dialysis sucks, it could be worse. I remind Tony of that in tough times. So just try to think of the positive - as much as dialysis sucks, you get the opportunity to spend time with your family and friends. You get to live. It will be a long road, I am sure, and I know it gets hard, but keep the positive things in sight, don't forget about them. And if you ever want to talk, send me a message. I promise I am by no means Polly Positive, trust me, I have often thought how much easier things would be if hubby did stop dialysis and let nature take it's course, but I try to keep things in perspective, at least.

 

[lmunchkin]

Sorry Lisa, I just don't have the words to comfort you!  I can send        &          your way!  I can only imagine!

Love you Lisa,
lmunchkin
 

[limonman]

 I know how you feel. I've known for years that I would need a transplant and lots of people said they'd help.
 I've been on dialysis for eight months and all I hear now are the crickets chirping. No one has stepped up.
Turns out I don't have any friends or family who care if I live or die. I always thought I was well loved. Talk about depressing!
I recently started home PD so that has helped some.

I'm on FB with "need kidney" in my name. Like playing the lottery but at least it's a chance.
There's always the .45 as a last resort.
  Good luck to us both.

[Jean]

Honey, you go ahead and use every and any avenue to advertise your need. You have every right to do so and no one can tell you otherwise. You have been thru a lot and always ahve come out of it, so for now, put the mean people aside and go on your merry way. A donor will come forward for you. You should be near the top of the list by now, so, there is a light at the end of the tunnel.    for you!!!

[chiawana]

Lisa, my husband feels so lost sometimes, and it's frustrating that I don't know how to make things better for him. He hates dialysis, too. We've had a few friends call about being donors, but for some reason or other they weren't suitable. He has no full blood siblings (two half-sisters, one is deceased, the other is a drug user). So family is a pretty dismal prospect. There are days he thinks it's not worth it, he'd just rather say "screw it" and give up. He's 52. There are a lot of things, though, that he wants to do before he's done, and that's what keeps him going. Do you have a dream that you could pursue in some way? He's working on a book of his photography, and he has other ideas for books that he wants to write. I hope you can find something that will distract you from the misery of dialysis and help you focus on what you have to offer. I'm sure you have many talents and potentials - let the world see that in you 

[jbeany]

If they can use facebook to tell you how many beers they had last night, they've got no right to whine when you talk about something that actually matters!  I think you should feel free to plaster your page with whatever message you want.  Take a look at Jenna's site (Okarol's daughter.)  There are stats, stories, links - all kinds of things that do not involve being tagged at the local bar with a drink in their hands.

 

[Sax-O-Trix]

What is your actual PRA?  Have you asked family members directly if they would consider donating?  Sometimes that is what it takes for someone to take that awfully scary step to begin the donor process...   Have you double or triple listed?

[Whamo]

    Everyone on this board feels like you do at one point or another.

[KatieV]

Every transplant center I go to wants me to get a live donor. Pretty  much beccause I would reject any kidney that comes along. I dont understand for me why no human being is willing to step forward. I have been waiting for 5 years.

I would encourage you to look into a paired donation program.  Ask your team about getting listed with the National Kidney Foundation.  Of course, that would require you bring a living donor into the circle, but your donor wouldn't have to match you.

I would definitely continue to post on Facebook.  If you are losing friends over it, perhaps they really weren't your friends.  When I get to the point where I can receive another transplant (at least 5 more months - "drug testing" in progress), I will be posting regular updates about my status.

It may feel hopeless, but miracles DO happen!  My brother had antibodies to 99% of the population, but got a great match after waiting years and he is doing wonderfully.

[Rain]

Lisa,

I know how you feel.  I'm 28 years old and have been on D for 5 years.  D was suppose to be temporary, my father was suppose to donate his kidney to me and i would continue living my life. Well it turns out he had a growth on one of his kidneys, so he wasnt able to donate.  While my father was going through the process to be a donor I had family and friends say they would step up if it didn't work with him, well when it didn't work out, they all changed there mind.  And that hurt me.  after that i paired down my friends to be people I trust, it's a smaller group but it works.  A friend recently got his blood type checked to see if he could be a match and he wasn't, but I applaud his efforts. 

I was depressed for years and my boyfriend made me realize something last year, why am i waiting around putting life on hold when i should live.  And that is exactly what I've been doing.  When i look back on my life I want to be proud of everything I've done and all the risks I've taken.  And because of that, this summer has been amazing. 
Hang in there, I know D does suck.. some days I wish I could just take off on vacation without all the planing and getting in center scheduled else where. But this is our life, and we got to make the best of it.

[MommyChick]

Hey Lisa,
I know exactly how you feel... Im 29 & have been on D for 7 yrs. It does suck !!! You hope for a match right away & you wait & wait & wait... My antibodies are 99% so I can really relate.
I would continue what your doing with FB & other options because the only way you'll hopefully get a match sooner is by putting yourself out there & letting people know they should save a life & donate! If you do have people d-friending you because of your CKD then I would say they weren't your true friends to begin with!!! 
As far as food goes goes... maybe I shouldn't be saying this but I have learned that a little none renal here & there doesn't hurt me, especially if you eat it the night before doing dialysis. I used to be very very strict on myself back when I first was diagnosed & its enough to drive you crazy if you do that all the time. There are some foods I just wont touch, but as long as I limit my intake I have been doing great, plus keeping active helps too.
I also believe that God only gives us what we can handle!
So we must all be some pretty good fighters in this chat to be dealing day in & out with CKD 

~ Marna

[kyshiag]

You are strong and loved 

[Lillupie]

Thank you Moosemom for thinking of me! That is really nice of you

iSmcd23, Thank you so much for standing by your husbands side. People like you and my husband keep us going. Please always stand by his side. I know its got to be hard for you at times. Would you be willing to set up the cycler for him at night??

Chiawana, I too like your husband feel as though its not worth it, at times. I also wonder is this how the rest of my life is going to be? That its never going to get any better then this?

Limonman, yup me too! I have told my husband dont let me near a loaded gun, or I will be done with dialysis finally, for good.

Sax-o-trix, my PRA is over 80%, which makes me angry. When I started dialysis it was 60%, now over 80, even harder for a kidney. Every person that knows  me in person knows how much I hate dialysis. People either say "I have kids what if they need a kidney", I hear noone wants to go through surgery.

KatieV, how long did your brother wait?

People did not just flat out defriend me based on my needing a kidney. Ive gotten yelled at about using Facebook to get a kidney. One told me "I like my kidneys".
everything I want to do, now does not include dialysis. Ive lived my life on dialysis. I did start to write a book, I just dont know how or have the money to publish it. Ive graduated from college (biggest mistake of my life), went to Sicily, and Germany, and took a road trip from Michigan across the US (second biggest mistake of my life), and got married. Now I want to be able to work a full-time job, not volunteer, to be able to pay back my debt and loans, and a not to have to worry about cooking everything from scratch. Ive realized that cooking everything from scratch is not only time consuming but, very expensive. Ive heard cook your meals ahead of time, and freeze them. I dont really have room in my freezer, and I hate leftovers. Usually they are gross or just dont heat good.

[KatieV]

KatieV, how long did your brother wait?

People did not just flat out defriend me based on my needing a kidney. Ive gotten yelled at about using Facebook to get a kidney. One told me "I like my kidneys".
everything I want to do, now does not include dialysis. Ive lived my life on dialysis. I did start to write a book, I just dont know how or have the money to publish it. Ive graduated from college (biggest mistake of my life), went to Sicily, and Germany, and took a road trip from Michigan across the US (second biggest mistake of my life), and got married. Now I want to be able to work a full-time job, not volunteer, to be able to pay back my debt and loans, and a not to have to worry about cooking everything from scratch. Ive realized that cooking everything from scratch is not only time consuming but, very expensive. Ive heard cook your meals ahead of time, and freeze them. I dont really have room in my freezer, and I hate leftovers. Usually they are gross or just dont heat good.

My brother waited 3 years between his first transplant (a fiasco thanks to a medical error) and his second.  Those three years were horrible for him - 72 days straight in the hospital, multiple shorter visits, migraines every dialysis session, not eating, etc. 

His surgeon told my parents: "Most people think of a transplant as a train; you miss this one and another one will be along eventually.  But, for Samuel, his transplant was like a comet.  You may only see it once in your lifetime". 

Do you have a crockpot?  You can get little ones (I have 3 different sizes) to reduce leftovers.  It's super quick to toss a piece of meat in (roast, chicken drumsticks, etc) with some spices or sauce.  Then it's ready when I get home from work.  We've been doing a lot of grilling lately too.

I have been trying to "clean up" my diet this past week.  It's all too easy to go to a boxed meal or frozen something.  I'm on home hemo and get on it as soon as I come home from work.  My husband then makes dinner and he doesn't want anything that takes a while.  Then I wonder why my phosphorus has sky rocketed.    

[smcd23]

Smcd23, Thank you so much for standing by your husbands side. People like you and my husband keep us going. Please always stand by his side. I know its got to be hard for you at times. Would you be willing to set up the cycler for him at night??

Sax-o-trix, my PRA is over 80%, which makes me angry. When I started dialysis it was 60%, now over 80, even harder for a kidney. Every person that knows  me in person knows how much I hate dialysis. People either say "I have kids what if they need a kidney", I hear noone wants to go through surgery.

People did not just flat out defriend me based on my needing a kidney. Ive gotten yelled at about using Facebook to get a kidney. One told me "I like my kidneys".

I did help him with his cycler when he was on PD when he needed it. I was just much slower than he was and I think it annoyed him.

I cannot believe what some of those "friends" have said. To be honest, if I saw someone campaigning for a kidney and it bothered me (which it wouldn't/doesn't) i would just ignore it. To come out and say those things is just awful. My response to the kid thing is, because people have asked, is "well then id hope some kind person would be willing to donate as I have to his father" And the reality is, the child probably won't need a kidney. Unless there is some genetic condition in the family that strikes young, the child wouldn't need one until well into adulthood when the parent would be too old or unhealthy to donate anyway. I point these things out - like if I needed one now, my mom would be the only compatible person in my immediate family, and she now has type 2 diabetes, so she's out. Dad is too heavy (and wrong blood type) and brother is wrong blood type but I suppose we could do a paired exchange. Too many what ifs, people need up start living in the now and not the hypothetical future. And they need to grow up and say no thanks instead of making excuses. Ugh I'm so irritated for you right now, didn't  mean to rant there, sorry.

Bottom line is yes, this life sucks a lot of the time but if people don't want to accept you for who you are, and don't want to stick by you, then forget them!

And I'm still trying to figure out the food thing over here, if I come up with anything I'll let you know ;-)