So incredibly frustrated!!!!

[sarahmanda]

I just had my 4-year dialysis anniversary. I've been experiencing some intense frustration the last few weeks. I'm at a very small clinic (10 chairs, 18-25 patients at any time), so we all know each other pretty well. Quite a few, including two I ride transit with, sign off really early about half of their treatments...I'm not talking 30-45 minutes, I'm talking about 1:30-2 hours early, on a regular basis. In my 4 years, I can probably count on one hand the number of times I've signed off early, just because I wanted to. Yes, I've signed off early to go somewhere (typically for a dr appt out of town) or because I got sick (clotting, nausea, etc.), but maybe once or twice because I wanted to go home. They seem to suffer no punishment/ails other than perhaps feeling bad. If I decide to get off, my "incompliance" is reported to my transplant coordinators and it affects my transplant chances. I end up getting reamed for hating this place.

Also, I'm becoming more and more frustrated that I haven't so much as gotten a call for transplant. Any time I talk to my coordinators or doctors they tell me how great I'm doing and how I should be "called soon". I'm young (28), relatively healthy (other than ESRD, obviously) and have been listed for almost 3 years. I don't know how many more times I can answer "are you any closer," "does no one in your family match," and all those other annoying inquiries. So many nights I go home and either scream or just cry.

My head RN is of no use, we share our social worker with the hospital and he's basically useless, I see my neph about 45 seconds twice a month. I basically have no one to talk to.

What do I do? How do I deal???

[jeannea]

Always start with a deep breath. Let's look at things.

I was 40 when I started dialysis and I was way younger than everyone. At your age, you really must feel like an outsider. You probably have more in common with your techs. Personally, I kept to myself. I would greet other patients next to me but then I didn't chat with them. I watched tv, did crossword puzzles, read, slept, and went home. Now this is a personal preference but you may want to try it and see how you feel. I know it must feel awkward.

Now for the people stopping early. They are probably not on a transplant list. They probably do not care much about their health. I suspect they feel rotten all the time. Then they come to dialysis so full of toxins that they feel lousy during the treatment. So they quit. I am surprised the doctor hasn't said something. It is their right to stop treatment but some centers then say your chair should go to someone else. This is hard but you need to focus on your health. You are finishing your treatments because you want a long life. You haven't given up like those guys. You may need a mantra or something. Say I am here for me! or whatever works for you.

I don't know where you live. In many places 3 years is an average wait time. No one can tell you if you're at the top of the list because the list is more complex than that. I suspect they ask you about living donors because you seem so anxious. They want you to have a transplant.

Now, what do you do? Come here. Ask questions. Vent a little. Also, please look into getting a therapist to talk to. Not a social worker but a psychologist. I got one around your age and it has made an amazing difference. It is so comforting to have someone focus on you for an hour. Also consider asking your doc for an antidepressant script. A lot of us take one and it is helpful.

You can do this. Cry if you need to then get up the next day and try again. You are strong.

[Simon Dog]

Have you ever considered home dialysis?   If you are the type of person who can deal with the additional responsibility, it would free you from having to deal with the staff; you would be in more control of your home treatments; and your compliance would be an issue you work out with the home support RN.  The home support RNs tend to be the best the clinic has to offer, and will help you with any problems that interfere with keeping on your treatment plan.

[Michael Murphy]

When I started Dialysis my Doctor sent me to a clinic attached to the closest Clinic attached to a hospital,  since I would not start dialysis for three years after he felt I should.  However I realized that the only one hurt by not being compliant is my self.  Is Dialysis fun, NO!, is living on dialysis easy, again No!.  I am replacing 168 hours of Kidney function with 12 hours and 45 minutes of Dialysis.  Any less time and the toxins that are killing me don't get removed.  I have learned top cope by channeling my rebellion.  I only worry about Dialysis one week at a time.  Every Friday I loudly announce I am not coming back again this week.  Every now and then a Nurse not paying attention will argue with me and that is just the icing on the cake.  Next week is next weeks problem.  The other reason to ask about live donor is that the outcome is better with a live donor instead of a cadaver donor.  I don't think I am lucky to be on dialysis,  I feel that I am lucky that dialysis exists to keep me alive.  The people in the center do not need me to complete my 4:15 session.  As long as life is fun and it is, I want to keep on top of the dirt.

[cdwbrooklyn]

I just had my 4-year dialysis anniversary. I've been experiencing some intense frustration the last few weeks. I'm at a very small clinic (10 chairs, 18-25 patients at any time), so we all know each other pretty well. Quite a few, including two I ride transit with, sign off really early about half of their treatments...I'm not talking 30-45 minutes, I'm talking about 1:30-2 hours early, on a regular basis. In my 4 years, I can probably count on one hand the number of times I've signed off early, just because I wanted to. Yes, I've signed off early to go somewhere (typically for a dr appt out of town) or because I got sick (clotting, nausea, etc.), but maybe once or twice because I wanted to go home. They seem to suffer no punishment/ails other than perhaps feeling bad. If I decide to get off, my "incompliance" is reported to my transplant coordinators and it affects my transplant chances. I end up getting reamed for hating this place.

Also, I'm becoming more and more frustrated that I haven't so much as gotten a call for transplant. Any time I talk to my coordinators or doctors they tell me how great I'm doing and how I should be "called soon". I'm young (28), relatively healthy (other than ESRD, obviously) and have been listed for almost 3 years. I don't know how many more times I can answer "are you any closer," "does no one in your family match," and all those other annoying inquiries. So many nights I go home and either scream or just cry.

My head RN is of no use, we share our social worker with the hospital and he's basically useless, I see my neph about 45 seconds twice a month. I basically have no one to talk to.

What do I do? How do I deal???

I know how you feel and you are entitle to feel that way.  However, do not stay that way.  I've been on dialysis for 15 years now.  I was in-center for 11 years and home now for 4 years.  I feel like you sometimes but try not the entertain the thoughts.  I really can't say that life is bad because I've been working for the whole 15 years and I been travelling different places and enjoying my life in spite of dialysis.  This is the cards that were dealt to us so we have to play them as well as we can.  Yes it's hard sometimes especially when you have plans after dialysis.  I can understand the people in you clinic signing off early although I do not suggest it's a good idea.  Mentally, it can be rough but we have to tell ourselves that things will get better and they will. 

Also, I've waited 7 years before I was called for a kidney just to find out I could not receive it because my veins were damage from high blood pressure.  Yes, I lived in pain for sometime because of it but it did not stop me from living my life.   You can live a healthy life on dialysis.  A lot of people do and they do not want a kidney. They feel they will live longer on dialysis.  If you set your mind to being on dialysis because you want to live and not to live to be on dialysis, you will see a big different in how you feel.  Don't rush the call because you want to get a good match so it does not reject quickly.  Be patient your kidney is coming and when it happens we will rejoice for you as well as yourself. 

Stay strong!!   

[obsidianom]

I just had my 4-year dialysis anniversary. I've been experiencing some intense frustration the last few weeks. I'm at a very small clinic (10 chairs, 18-25 patients at any time), so we all know each other pretty well. Quite a few, including two I ride transit with, sign off really early about half of their treatments...I'm not talking 30-45 minutes, I'm talking about 1:30-2 hours early, on a regular basis. In my 4 years, I can probably count on one hand the number of times I've signed off early, just because I wanted to. Yes, I've signed off early to go somewhere (typically for a dr appt out of town) or because I got sick (clotting, nausea, etc.), but maybe once or twice because I wanted to go home. They seem to suffer no punishment/ails other than perhaps feeling bad. If I decide to get off, my "incompliance" is reported to my transplant coordinators and it affects my transplant chances. I end up getting reamed for hating this place.

Also, I'm becoming more and more frustrated that I haven't so much as gotten a call for transplant. Any time I talk to my coordinators or doctors they tell me how great I'm doing and how I should be "called soon". I'm young (28), relatively healthy (other than ESRD, obviously) and have been listed for almost 3 years. I don't know how many more times I can answer "are you any closer," "does no one in your family match," and all those other annoying inquiries. So many nights I go home and either scream or just cry.

My head RN is of no use, we share our social worker with the hospital and he's basically useless, I see my neph about 45 seconds twice a month. I basically have no one to talk to.

What do I do? How do I deal???

I know how you feel and you are entitle to feel that way.  However, do not stay that way.  I've been on dialysis for 15 years now.  I was in-center for 11 years and home now for 4 years.  I feel like you sometimes but try not the entertain the thoughts.  I really can't say that life is bad because I've been working for the whole 15 years and I been travelling different places and enjoying my life in spite of dialysis.  This is the cards that were dealt to us so we have to play them as well as we can.  Yes it's hard sometimes especially when you have plans after dialysis.  I can understand the people in you clinic signing off early although I do not suggest it's a good idea.  Mentally, it can be rough but we have to tell ourselves that things will get better and they will. 

Also, I've waited 7 years before I was called for a kidney just to find out I could not receive it because my veins were damage from high blood pressure.  Yes, I lived in pain for sometime because of it but it did not stop me from living my life.   You can live a healthy life on dialysis.  A lot of people do and they do not want a kidney. They feel they will live longer on dialysis.  If you set your mind to being on dialysis because you want to live and not to live to be on dialysis, you will see a big different in how you feel.  Don't rush the call because you want to get a good match so it does not reject quickly.  Be patient your kidney is coming and when it happens we will rejoice for you as well as yourself. 

Stay strong!!   

Welcome back Brooklyn. I missed you. You havent been around here much lately. You always keep me positive with your great attitude. Whenever I get tired of dialysis your positive vibes help a lot.

[PrimeTimer]

Hope you find renewed strength from being on the ihd site. Whatever you do, DO NOT read any of BobN's "Bob's Blog" posts!      (hee, hee...hope you cheer up soon, sarahmanda).

[sarahmanda]

Always start with a deep breath. Let's look at things.

I was 40 when I started dialysis and I was way younger than everyone. At your age, you really must feel like an outsider. You probably have more in common with your techs. Personally, I kept to myself. I would greet other patients next to me but then I didn't chat with them. I watched tv, did crossword puzzles, read, slept, and went home. Now this is a personal preference but you may want to try it and see how you feel. I know it must feel awkward.

Now for the people stopping early. They are probably not on a transplant list. They probably do not care much about their health. I suspect they feel rotten all the time. Then they come to dialysis so full of toxins that they feel lousy during the treatment. So they quit. I am surprised the doctor hasn't said something. It is their right to stop treatment but some centers then say your chair should go to someone else. This is hard but you need to focus on your health. You are finishing your treatments because you want a long life. You haven't given up like those guys. You may need a mantra or something. Say I am here for me! or whatever works for you.

I don't know where you live. In many places 3 years is an average wait time. No one can tell you if you're at the top of the list because the list is more complex than that. I suspect they ask you about living donors because you seem so anxious. They want you to have a transplant.

Now, what do you do? Come here. Ask questions. Vent a little. Also, please look into getting a therapist to talk to. Not a social worker but a psychologist. I got one around your age and it has made an amazing difference. It is so comforting to have someone focus on you for an hour. Also consider asking your doc for an antidepressant script. A lot of us take one and it is helpful.

You can do this. Cry if you need to then get up the next day and try again. You are strong.

Thanks. I have considered a therapist, but around here, it's hard to find one that doesn't know your whole family (I'd like a little anonymity...I don't want them to know my story before I even open my mouth) without driving two hours away. As for the antidepressant, I've been on Zoloft since I was about 10 (before they decided not to give it to children) and a few months ago my primary upped my dosage...it's helped some, but I think I may talk to him about either upping it again or adding/changing to another pill.
I won't lie, I cry...more than anyone in my life knows. Not every day, or even every week, but a lot when no one is around or when I'm in the shower. It does help...until I walk into dialysis early in the morning with the swollen "cry face" and it looks like I drank 40 gallons of water over the previous two days, haha

I got on here pretty often when I was first on dialysis, but somewhere along the way, I dropped off...I've gotta get back. This really is the greatest group of encouragers I've found!

[sarahmanda]

Have you ever considered home dialysis?   If you are the type of person who can deal with the additional responsibility, it would free you from having to deal with the staff; you would be in more control of your home treatments; and your compliance would be an issue you work out with the home support RN.  The home support RNs tend to be the best the clinic has to offer, and will help you with any problems that interfere with keeping on your treatment plan.

Oh how I wish home hemo was an option! Being from such a small place, we aren't able to opt for home dialysis as none of our 2 RNs or 3 techs have any kind of training in it. Besides that, I live in a small apartment with nowhere to accommodate home dialysis. And I can't fathom the thought of sticking myself...when I was younger and my doctors were convinced did become diabetic any day (which I never did...showed them ) my dad had to prick my finger to testy blood sugar because I couldn't even push the button.
This is one if the (many) times I wished I lived in a bigger city.

[sarahmanda]

I know how you feel and you are entitle to feel that way.  However, do not stay that way.  I've been on dialysis for 15 years now.  I was in-center for 11 years and home now for 4 years.  I feel like you sometimes but try not the entertain the thoughts.  I really can't say that life is bad because I've been working for the whole 15 years and I been travelling different places and enjoying my life in spite of dialysis.  This is the cards that were dealt to us so we have to play them as well as we can.  Yes it's hard sometimes especially when you have plans after dialysis.  I can understand the people in you clinic signing off early although I do not suggest it's a good idea.  Mentally, it can be rough but we have to tell ourselves that things will get better and they will. 

Also, I've waited 7 years before I was called for a kidney just to find out I could not receive it because my veins were damage from high blood pressure.  Yes, I lived in pain for sometime because of it but it did not stop me from living my life.   You can live a healthy life on dialysis.  A lot of people do and they do not want a kidney. They feel they will live longer on dialysis.  If you set your mind to being on dialysis because you want to live and not to live to be on dialysis, you will see a big different in how you feel.  Don't rush the call because you want to get a good match so it does not reject quickly.  Be patient your kidney is coming and when it happens we will rejoice for you as well as yourself. 

Stay strong!!   

I know the last thing I want to so is to rush the transplant. I've had two living donors tested and one rejected before he even really got started. My mom and boyfriend were both matched, blood wise, but my mom's was rejected because of her amount of function wouldn't be entirely adequate for me (but I've switched transplant centers...we should probably get her placed for paired donation) and my boyfriend was rejected because of PTSD after 3 tours in the Air Force. My other friend that offered was told there was really no point in him applying because of his medical history.

I've got two sisters, but neither had been tested yet. My older sister has to lose quite a bit of weight before they'll even look at her application, but has kind of given up on the whole "dieting/working out" thing  My younger sister won't even put her name in the hat until my older sister is out so she won't offend her...which, I'll admit, pisses me off! I know now that all I can do is wait.

Sorry if I've seemed so negative throughout I posts. I'm generally a pretty positive person, but I just feel like it's easier to rant to people who have an idea of what I'm going through. Thanh you everyone for the amazing advice and optimistic attitudes! 

[cdwbrooklyn]

I just had my 4-year dialysis anniversary. I've been experiencing some intense frustration the last few weeks. I'm at a very small clinic (10 chairs, 18-25 patients at any time), so we all know each other pretty well. Quite a few, including two I ride transit with, sign off really early about half of their treatments...I'm not talking 30-45 minutes, I'm talking about 1:30-2 hours early, on a regular basis. In my 4 years, I can probably count on one hand the number of times I've signed off early, just because I wanted to. Yes, I've signed off early to go somewhere (typically for a dr appt out of town) or because I got sick (clotting, nausea, etc.), but maybe once or twice because I wanted to go home. They seem to suffer no punishment/ails other than perhaps feeling bad. If I decide to get off, my "incompliance" is reported to my transplant coordinators and it affects my transplant chances. I end up getting reamed for hating this place.

Also, I'm becoming more and more frustrated that I haven't so much as gotten a call for transplant. Any time I talk to my coordinators or doctors they tell me how great I'm doing and how I should be "called soon". I'm young (28), relatively healthy (other than ESRD, obviously) and have been listed for almost 3 years. I don't know how many more times I can answer "are you any closer," "does no one in your family match," and all those other annoying inquiries. So many nights I go home and either scream or just cry.

My head RN is of no use, we share our social worker with the hospital and he's basically useless, I see my neph about 45 seconds twice a month. I basically have no one to talk to.

What do I do? How do I deal???

I know how you feel and you are entitle to feel that way.  However, do not stay that way.  I've been on dialysis for 15 years now.  I was in-center for 11 years and home now for 4 years.  I feel like you sometimes but try not the entertain the thoughts.  I really can't say that life is bad because I've been working for the whole 15 years and I been travelling different places and enjoying my life in spite of dialysis.  This is the cards that were dealt to us so we have to play them as well as we can.  Yes it's hard sometimes especially when you have plans after dialysis.  I can understand the people in you clinic signing off early although I do not suggest it's a good idea.  Mentally, it can be rough but we have to tell ourselves that things will get better and they will. 

Also, I've waited 7 years before I was called for a kidney just to find out I could not receive it because my veins were damage from high blood pressure.  Yes, I lived in pain for sometime because of it but it did not stop me from living my life.   You can live a healthy life on dialysis.  A lot of people do and they do not want a kidney. They feel they will live longer on dialysis.  If you set your mind to being on dialysis because you want to live and not to live to be on dialysis, you will see a big different in how you feel.  Don't rush the call because you want to get a good match so it does not reject quickly.  Be patient your kidney is coming and when it happens we will rejoice for you as well as yourself. 

Stay strong!!   

Welcome back Brooklyn. I missed you. You havent been around here much lately. You always keep me positive with your great attitude. Whenever I get tired of dialysis your positive vibes help a lot.

Thanks Doc for your kind words it means a lot to me since I been going through some things.  I've taking on a new role at work and it keeps me busy. However  I do think about you guys. I need support as well because it's hard when your family don't understand what you dealing with. I'm good and staying strong as always.

[obsidianom]

"Thanks Doc for your kind words it means a lot to me since I been going through some things.  I've taking on a new role at work and it keeps me busy. However  I do think about you guys. I need support as well because it's hard when your family don't understand what you dealing with. I'm good and staying strong as always.  "

We are here for you . Working on dial,ysis is no picnic. I admire you for that. Its not an easy life. I had to cut back my office hours by more than half to do dialysis for my wife. I cant imagine working full time on dialysis like you do . You are an inspiration!
If there is anything you need, just YELL!!!