Returning member facing darkness.

[geoffcamp]

Hi all!  It's been a LONG time since I've posted or even been to the boards. Probably close to 10 years. Glad to see it is still up and running. Anyway, I've returned because after a failed transplant in 2001 I have been back on hemo dialysis. Quite frankly I'm having a really difficult time now. I was laid off from a great job in 2099 and have been trying to live on social security and sponging off my loving parents. My prognosis for a new kidney is slim (very high antigen count). I find myself sinking into darkness day by day as financial problems mount, relationships dissolve and feelings about any positive future are nonexistent. So I figured I would return and maybe get a kick in my ass to find a way to make it thru this. I've never been one to complain, whine or bitch. I usually just take it all inside and doing that has significantly strained any and all relationships I used to have. I'm short tempered and negative and people simply don't want to be around someone like that. I'm beginning to think that all this time, money and energy to keep me alive is futile. I cannot support myself, and at 43 years old it drives me crazy. Dialysis has become a burden routine that I just do. I can't see a point why most days. I'm tired feeling weak and looking for a way to see hope. Physically if you met me you would never know what's really going on in my life. I drive I'm in pretty good shape but its all a mask. I feel like inside I'm being eaten away. These last few months have been the worst of my life and I can't see how this will ever change. I'm single live alone and I don't communicate with other well about my issues. Since I've been on dialysis long term on an evening shift (I usually start dialysis around 5pm) I rarely see doctors and I have no relationship with any social workers. I am still currently listed on the transplant list, have been for 10 years plus!  I searching for a reason for my life. Without work, friends and loosing hope with everyday that passes. So bring it on people. Give me a kick in the ass and help show me I'm not the only one who has felt this way and there is some reason to continue. Tell me how you guys do it day after day after day. At least I feel a little better just venting how I'm feeling. G.

[amanda100wilson]

Hi, Geoffcamp.  I too have been on dialysis the second-ti e around for teyears, also have a failed transplant and high antibody level ( it's antibodies, not antigens).  I do home haemo using a NxStage machine.  There are two options as I see it to improve your quality of life on haemo. The first, is home haemo, either with a NxStage or conventional machine.  The trouble is, most units require that you have a care partner.  I don't know if there is someone that you know we'll enough to train with you as a nominal partner (not sure about conventional machines but NxSage you can do yourself.  Obviously you have to be able to I sent your own needles.  A buttonhole is made, and that is lessainful to insert I to than using sharps.  The other option is to find out if one of your units does nocturnal is ceyou ate likely to get longer dialysis.  Longer dialysis is either via home haemo or nocturnal in-unit, equates to improved quality of life.  NxStage allows you to do the treatment that a ti e that suits you. How you feel on longer, more frequent dialysis when compared to traditional in-unit, is the difference between night and day; more energy, less aches and pains, better control of phosphate and potassium, less dietary restrictions and fluid intake restrictions.  If you feel better, your psychological status will probably improve.  However, dialysis patients are more likely to suffer depression than the general population.  I am sure that it is a combination of the rigors of doing dialysis and all that it brings with it, combo Ed with the fact that our brain is 'bathed in a toxic soup' because of our non-functioning kidneys.  Your post suggested that you may be suffering from depression.  Having been there with that, I can tell you it is a vicious circle,  Depression leads to social isolation, leads to depression and so forth.  I hope that you aren't one of those guys who do 't believe in mental health help.  A little bit of counseling may not come amiss either,where you can talk a out how you feel in a non-judge mental setting.  Ate there any support groups in your area?  That  another option, although I caution you, that if it is I e with just PD Patients, you may find that they lack understanding, as PD is very different than haemo. With its own set of different concerns.  By the way, would PD be an option for you?  Can do it at home, during the night, if you use a a machine, and again, it gives a,better quality of life than in-unit haemo.

[CebuShan]

I haven't been in D for nearly as long as you but I definitely can understand the feelings of hopelessness.
Amanda is right. If you can do D at home, it is well worth it. I started using Nxstage last September and I still can't believe how much better I feel!  It really is like night & day.
I don't have any words of wisdom to offer!     but I did have a very wise friend once say to me (long before the ESRD) that every morning you face a choice: you can get up and choose to dread the day or get up and choose to welcome the day. Some days I literally look in the mirror and say "I will be happy today". Then I go out and smile at people and hold doors, etc. It makes me happier to make someone else happy.
Hope you keep coming and you get the shove that you need!   

[Relentless]

I feel you. I am 35 and single and have been on dialysis for 3 years now. I just started to go on disability 6 months ago. I just moved back into my parents 1 month ago . Before all this I had my own house, drove a 2010 Mercedes Benz and was making about 100 k per year working for my bank. I finally had to quit because of my dialysis and I could no longer travel for my job. Working 5 a.m. and coming home at 10 p.m. after dialysis was too much for me.  I passed out 3 times at work due to exhaustion and I finally decided to go on disability due to decline in health until transplant.  There have been many times felt like a loser or giveup, but what can u do. Stopping dialysis is not an option for me. I have hope in NEAR future that they will come up with something better then dialysis for kidney and I don't want to miss it. I guess sometimes life gives u lemon and u make lemonade. U are not the only one tht feels this is way I promise u.  I bet u 90% of people knows exactly how u feel and at one time gone thru wht ur going thru or going thru samething u are right now. Don't give up hope. Hope is wht keeps "us" alive and have "us" waking up ever morning to go on dialysis.

[jeannea]

Don't completely give up hope because of high antibody levels. Mine were 97% and I got another transplant this year. It can happen.

I can understand the depression. I rely on meds and therapy. Can you maybe find something in your life that makes you happy and doesn't cost much? Then make sure you do that often. I don't know you but maybe taking walks, volunteering at the museum, a small group at church, etc.

I'm sure it's hard. I won't kick your ass. Sending you sympathy and encouragement instead.

[MaryD]

I've found that when I keep track of the days when I feel revolting/OK/good/bloody fantastic, that the good/bloody fantastic days outnumber the bad days.   Hang in there!

[galvo]

No wise words for you, Geoff, but I sure do emphasise wih you. The best I can do for myself is bumble through one day at a time. Simplistic, maybe, but a I'm still here and mostly smiling. Keep posting here. The folks here do understand.

[Rerun]

Hi Geoff      I'm glad you are still around.  You need to keep coming to this site.  It really helps to help others and sometimes to see how good you have it....

Here is your kick in the ass   

Please come back everyday.  Always something new...

Rerun   

[BobN]

Geoff, hang in there buddy.  There are times when we all feel like dialysis has got us whipped.  We have to work to make things better.

The best thing you can say about dialysis is that it beats the crap out of the alternative.

Keep your chin up and let us know how you're doing.

[okarol]

Jenna's 6 year transplant is puttering out. She has 100% antibodies so that just means we have to work harder to get a transplant. If one of the lovely people through facebook/craigslist/twitter don't match, we hope someone may be willing to enter a paired donation swap through the National Kidney Registry. If that doesn't work, she will undergo desensitization to lower her antibodies so she will have more options with donors.
DON'T GIVE UP! Make a new plan! 

[kitkatz]

One step at a time....That is all do everything one step at a time.
I am fourteen years into hemodialysis.

It has be taken slowly and do some fun things for you.

[kit78]

I understand you're pain.    If we could only see what lies ahead of us.   If you lived in the area I'd meet for a cup of "Ice" and a few laughs!    Hang in there, miracles do happen!  Here's a great big hug    sending you love & light.

[geoffcamp]

Thank you all for the information and kind words. I'm going to start coming back here as often as I can. It really is a GREAT place to talk about all the issues we face and when your overwhelmed as I'm sure all of us get from time to time you can't beat talking to people that are going thru the same things you are!  Sometimes it's easy to think I'm the only one in the world dealing with this but being here I see we all are in the same boat!!  I'm trying to get things on track and find things to do that I enjoy and give me some fun times but it gets harder and harder. Over a decade on dialysis is so very draining not only physical but emotional as well. On the home dialysis topic, I tried PD and I did not like it at all (personal preference) and I live alone so I don't think I could do home hemo. But I'll look into the options. I am all out of space for fistulas or grafts (all have clotted) so I've been working with a cath for a few years now. I'm trying to find a better option but that's what I'm stuck with for now. Any way thanks guys and I'm going to make it a priority to get more involved on the site. Nice to see rerun and some others that were there at the genesis of this board. Just goes to show what a good forum and tool this site is!!  More to come! 

[MooseMom]

I'm really glad you have found your way back.  To try to rebuild my shattered psyche, I tried hypnotherapy, biofeedback, counselling, psychiatric visits and just about everything (except meds), and the only thing that EVER made me feel better was/is the people on this forum, particularly those I met in person during a meetup in Las Vegas over a year ago.  So I know the value of IHD, and I hope you will return whenever you need us.

[Bajanne]

It was great seeing you post again.  It has been a while!!  Okay, I forgive you.    Please don't leave us again, or I will have to personally come and inflict that kick in the ass.
I am sure you have seen from the posts that we all go through this, to varying degrees.  But the dialysis is keeping us alive and who knows what is waiting for us down the road, if we just keep going.
A big hug from your IHD family.

[del]

   This is a great support group!!!

[Rerun]

Geoff didn't you have a horse Avatar?  Where is your horse.  I love horses and before my set backs in November I was going to this Ranch and taking lessons on a horse just so I could ride (I don't need the lessons) HA  Anyway, just a thought.  Go ride!

               

[kevno]

geoffcamp

I have been thinking very hard what to say to you. I am not around on this site, to busy kicking my kidney problems. Going out playing snooker/pool. Trying to keep my leg, by walking. Keeping my brain busy with other things rather than renal problems. If i stopped to think about what my problems are I may have given up. But that is not me, from your old posts it is NOT you. This so called darkness you will get through it. In the past this site (its not like a normal site, its like a group of friends) as helped me through a lot of dialysis problems. They will help you to,

Remember (renal patients never give up!!!)

Kevno 

[geoffcamp]

Rerun,  I did have a horse avatar. That was in Lake Tahoe. It was an amazing trail ride!!  Me and a friend were the only two in the group and at the time we both had our own horses and are experienced riders. The ride was supposed to be just a slow walking tour but the guide ran us thru some tests and she decided we had skill. It turned out to be the best ride of my life. I'm from South Carolina and Florida. It's FLAT!!!  Needless to say the trails there were about 6 inches wide straight up or straight down with rocks and trees everywhere. She took us up to a plateau where you could see almost the entire lake but we had to get a full gallop up to get up to this site!!  Going up was fun not too bad.... going down not so much!!  The horse in front of me kicked up and almost kicked my horse so mine reared up a little going down about a 12 foot straight drop!!  I think their horses were not used to having that kind of adventure but all in all it was amazing!!  I was on hemo dialysis then too. I did dialysis in Carson city. Great trip!!

[geoffcamp]

OK I'm out of my bitching and moaning period!!  I have stuff to do. I'm going to seek out some help to keep the blues spells away and work on some New Years resolutions!  I have to say though the longer this goes on the more I seem to slip into isolating myself. I have not dated in a year and I'm at a point in my life where I'm serious about looking for someone to share my life with. I just have no clue where to begin!!  But I guess that's pretty normal for anyone in their 40s single and looking!!  I counted my blessing including my amazing family who has done so much over these years to help and support me!  I really am a lucky guy!!  So I'm changing my outlook and moving my focus and seeking out some professional help to see how much better things can get!!  Thank you all for your kind words of wisdom. And I will be checking in here more and more I promise!!  Y'all will probably get fed up with me quickly!!  LOL! 

[okarol]

  Love to see you!

Just FYI, my friend's sister said that the ratio of 40-somethings is twice as many women looking for a relationship as men. She was using online dating so I don't know what it's like in the real world, but I wish you luck!