I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: drawingdami on January 18, 2016, 03:13:45 PM
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I am angry.
I live in NYC below the poverty line, but somehow am plodding along. But it sucks.
I have battled chronic, severe depression since I was 10.
I have been on dialysis--home hemo--for the last four years. Prior to that I had a living unrelated kidney transplant that lasted for 15 years. Prior to that I was on in-center dialysis. My kidneys failed due to Glomerulear Nephritis caused by no-one-knows. Sometimes I come up positive for Lupus, but sometimes I don't. Whatever caused this is kind of a moot point now.
My mother died when she was 49 of a very aggressive form of MS. She only had the disease for 5 years, and in that time she became a complete quadriplegic and suffered.
I have been waiting for a cadaver kidney for four years. I have been called up 5 times, but no final match.
Lately I have been having bad headaches, blurry vision and an endless period. I found out I have an adenoma on my pituitary gland that is causing all of this.
I also have been having a lot of tingling and numbness in my hands. I am not a diabetic. I go to the neurologist tomorrow for this and the adenoma. But I can tell you: This is the same type of issue my mother had when her MS started.
Like I said, my mother suffered for 5 years. I will not suffer. I will not keep doing dialysis if I am diagnosed with MS. I will be done. With all of it.
But if I don't have MS, I still don't want to do dialysis anymore.
I feel like I can't take another treatment, another angioplasty in my fistula (I've had almost 40 of them), another pill, another doctor, another poke. another prod, another sleepless night with restless legs.
And the itching. The never-ceasing itching, even though my phosphorus and potassium levels are excellent.
I have gone through transplant. I know what that's like. For me it was tough. Better than dialysis, but tough all the same. It is tough, VERY tough to live in NYC and be chronically ill. So if I am honest, I am not all that excited for transplant this time. And it will be a cadaver one, so ... well lets just say, it won't be as "fresh".
I don't want to do this anymore. Yeah, I know people--LOTS of people-- have it a lot worse. But I can only experience my life.
And I hate it.
I feel like I have been doing dialysis for my niece's sake, really. But she is 12 now, old enough to remember me. She has my sister and her dad. Sooner or later, they all would be OK.
I don't want to do this anymore.
I'm tired.
And I'm angry.
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I hear you sister! I can tell you right now I will not die of cancer. The fact that I can quit dialysis gives me a tiny bit of power.
But, to me, it seems normal to keep on breathing... I just hope the Lord takes me in the middle of the night so I don't have to suffer with anything.
It is kind of hypocritical because I believe in Jesus and heaven so why don't I just quit and RUN there. But, maybe there is someone who needs me here that God has a plan for me.
Anyway, I know where you are at. You are not alone. :flower;
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I hear you, too. It is so often one damn thing after another when it comes to dealing with kidney disease.
Some days I can make it with head held high and other days I am crawling through the dialysis muck and mud.
This all sucks big, giant rocks.
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I certainly understand and appreciate where you are coming from. I don't have nearly as many health issues to complain about and yet I know there is a point where I will just say to hell with it. i've had enough. My standards for Quality of LIfe are pretty high (maybe I'm just too entitled) and this disease sucks. But there is a silver lining (although not all would look at it this way). In this country it is very hard to end your life. Most states don't allow death with dignity. Mine doesn't. But with kidney failure you can only survive for so long without dialysis and keep on living. No death is a picnic, but choosing conservative, palliative care in hospice is an option. It's one that I hold in reserve when push comes to shove and I can't take it anymore and I have nothing further to live for.
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I feel for you, this disease is a real butt kicker. The disease becomes the central part of your life and it sucks. It is a constant struggle to keep it in perspective, about 18 hours a week I spend on Dialysis related activities that leaves 150 hours to have a life. I try to do one thing a week that I enjoy just to have something to look forward to. However both of my parents had bad deaths and I know that if I get a terminal diagnoses the first thing I am going to do is cancel my dialysis appointments.
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Hi Drawingdami:
When I started dialysis in 2012 I became so ill and had about 12 procedures that year. Several were due to negligence and greed by professionals and to correct their mistakes. I was so overwhelmed, exhausted, and ill and wanted to give up. Like you I had someone to live for, I had a teenage daughter who needed me. Life got so much better and easier once I switched to Home Hemo. My greatest hope is to find a cure in my lifetime. As they say on the X-Files "The Truth is Out There".
I am attaching an image that I always refer to when the going gets tough : https://www.google.com/search?q=the+frog+and+the+heron+story+never+give+up&espv=2&biw=1242&bih=606&tbm=isch&imgil=DQZypXChobivuM%253A%253B1zPZF3YwDmh3fM%253Bhttp%25253A%25252F%25252Fwww.middletownbiblechurch.org%25252Fchristia%25252Fngiveup.htm&source=iu&pf=m&fir=DQZypXChobivuM%253A%252C1zPZF3YwDmh3fM%252C_&dpr=1.1&usg=__yFS--x-v0GXt_CZCRb3CGp7nouo%3D&ved=0ahUKEwj7itbp-7XKAhVFjz4KHSTTAEMQyjcIWw&ei=NTieVrucO8We-gGkpoOYBA#imgrc=DQZypXChobivuM%3A&usg=__yFS--x-v0GXt_CZCRb3CGp7nouo%3D
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If your test should confirm MS then I will more easily accept if you do decide to stop treatment. I lost a girl friend to MS. I was out of the country in the Army for a while and I never had the chance to see her.
I see the members here are true warriors fighting a daily battle to stay alive. It ain't easy. Depression is constantly nagging at them trying to sway their thinking, but like true warriors they scoff at depression, over-coming all the daily challenges they face, knowing that thay will never give up.
That, my friend, is shear determination.
At one time you too had this determination. And the issues are trying to wear you down.
I will not judge you, I can't. Only you can judge whether you have the determination to continue to fight.
No matter how you decide we will be here and will understand however you go.
PLEASE continue to post, we will follow you as far and as long as you share, Hopefully we may be able to help you in ways I cannot even imagine yet.
Take Care,
Charlie B53
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Hi Drawingdami how did you get on at the neurologist?
Love and luck, Cas
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Hello everyone.
Thank you so much for the kind and caring words and thank you for not judging me.
I went to the Neurologist yesterday (and was attacked by a pigeon of all things! But that's another story) and they basically said...not much.
They did say that there was definitely something going on with my right eye, and that there are some issues with muscle weakness. But they did say that all of this could be caused by the pituitary adenoma instead of MS, so that's something. They also think I have carpal tunnel in both hands which would be something as well. They decided they want to try an MRI without the contrast gladolinium dye. They think the tumor will be big enough to be able to see without it. But they will literally have to go UP MY NOSE WITH A RUBBER HOSE (anyone who watched 70's sitcoms remember that phrase?) and scoop it out. ::)
Hatedialysis2--thank you for the pic! It cheered me and I posted it on my FB page. It actually caused some of my friends to call me up, concerned. That suprized me.
Rerun--i am like you--I say to myself, Why cant I just go to you Lord, now?? Nobody REALLY needs me in their life. I don't even have a pet I need to be concerned about. But then I think, nobody NEEDS cake, either. We all just want it from time to time. Maybe I'm cake.
All in all, I am a little better today. I have enough fight for tomorrow. That's all I have to think about, really. :boxing;
But it really is you all I have to thank for it. Thank you for helping me. :beer1;
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I don't think anyone really 'knows' why they are on this rock. I like t o believe that there is A master plan and we each are a small but very necessary part in the overall workings. Each will exist until their parts has been completed.
You hVE NO IDEA HOW MANY LIVES YOU HAVE TOUCHED, AND HOW MANY MORE YOU HAVE YET T gRRRRRRRRRRRRRR caps;ock! I HATE that button!
LOL You have no idea how many lives you have touched, and how many more you yet to have an effect upon. Simply posting here you have reached many, and since these pages stay, that potential number grows daily. Many many souls will yet wonder how you managed, how your situation turned out, are you doing alright?
Most everyone that comes to IHD really care for one another as we all are facing very nearly the same kidney failure.
Damn straight Skippy we care, and we do not let each other down, to fail, for fear of our own failure.
Hang in there and report often. We really do want to hear how you are doing.
Take Care,
Charlie B53
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Hi Drawingdami:
You are welcome, I'm rooting for you, but also respect your decisions
Maybe the pigeon was trying to tell you something? The universe is funny that way! Have you ever read books by Ted Andrews
http://spiritlodge.yuku.com/topic/917#.VqA9AfkrLIU
Ted Andrews/Animal-Speak
Keynote: Return to the Love and Security of Home
Cycle of Power: Year-round
The pigeon is an unusual bird. Although most people think of it as a pest in the city environment, it has very unique characteristics. It is also tied to very gentle and loving archetypal energies.
Today the word "dove" and "pigeon" are used interchangeably. Although there is a difference, the two species are related. It would be wise for anyone with a pigeon as a totem to study the characteristics of the dove as well.
The pigeon has a long history associated with the home and with fertility. The real name of Christopher Columbus was "Colombo" which is the Italian word for "pigeon." Columbus helped discover a new home. The pigeon also has an extraordinary homing sense. It knows how to find its way back home, no matter how far it has gone.
It is because of this that they often are symbols for a time or a need to return to the security of home. Pigeons can teach us how to find our way back when we are lost. They help us to remember and find the love of home and home life that we have either given up or lost. They are the only bird that can drink by sucking up water into their beaks. This reflects that ability to draw on the energies of home, no matter how distant.
They are reminders to us to remember that which has positively affected us from our early home life. Have we forgotten who we are? Are we falling into old patterns we vowed to remember and change? Have we forgotten our basic foundations, the heritage we have had passed on to us through home and family? This includes the morals, the behaviors, the attitudes, etc. Draw upon them and use them.
Because they breed rapidly and publicly, pigeons came to be sacred symbols for fertility gods and goddesses. They reflect the fertility of home and family that can occur when they are around. Pigeons will huddle together during a storm. If there are storms in your life, huddle with your family--biological or otherwise. There will be safety and security in that activity. Remember that pigeons remind us of the possibilities, real and ideal, associated with home and family.
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Mine doesn't. But with kidney failure you can only survive for so long without dialysis and keep on living. No death is a picnic, but choosing conservative, palliative care
in hospice is an option. It's one that I hold in reserve when push comes to shove and I can't take it anymore and I have nothing further to live for.
We almost got death with dignity, but the papist advertising campaign was its downfall.
The neat thing about discontinuing dialysis is that nobody can take that right away from you.
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To SIMON DOG and others who feel, "The neat thing about discontinuing dialysis is that nobody can take that right away..." maybe so. But have any of you actually gone that route for say,
more than missing a couple of treatments? Uremic toxicity with fluid overload is a horrible way to die. It's not an easy death and nothing to romanticize about. I know from personal experience.
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I have seen bad deaths, both of my parents went ugly from cancer and dementia. One women who I was friends with was given a terminal diagnosis and stopped dialysis that day, drugs and hospice gave her a much better way out then continued dialysis and letting the cancer take her. Two weeks of discomfort is better than months of pain and suffering .o
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I have seen bad deaths, both of my parents went ugly from cancer and dementia. One women who I was friends with was given a terminal diagnosis and stopped dialysis that day, drugs and hospice gave her a much better way out then continued dialysis and letting the cancer take her. Two weeks of discomfort is better than months of pain and suffering .o
My post addressed kidney failure only with the inherent symptoms of uremic poisoning/fluid overload. And, I was on home hospice care. It doesn't make impending death all that much easier. If anything, I would have someone wishing to stop dialysis to at least continue utilizing the fluid removal option, only. And, if truly serious about ending his/her life, take some sleeping pills and then eat some foods high in potassium. Or, take a handful of potassium supplements once the sleeping pills start to work.
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hugs and thoughts
I just wanted to say that im dealing with some issues that could or could not be ms or something similar too, so i wanted to reach out and offer to be a someone you can vent to and stuff.
i had this exact same thought, that i would hold on as long as i could but once it gets to the point i can no longer care for myself, im done. i totally get that. this crap is hard enough without added crap!
Please feel free to message me any time
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............ someone wishing to stop dialysis to at least continue utilizing the fluid removal option, only. And, if truly serious about ending his/her life, take some sleeping pills and then eat some foods high in potassium. Or, take a handful of potassium supplements once the sleeping pills start to work.
I still have a LOT to learn. PD 2 /12 years is all I know.
Is it possible to remove water only?
Handful of potassium fatal? I take that every day. SIX of those 10EU capsules or my potassium falls off . They are always telling me eat MORE..... As if I don't eat enough already!
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............ someone wishing to stop dialysis to at least continue utilizing the fluid removal option, only. And, if truly serious about ending his/her life, take some sleeping pills and then eat some foods high in potassium. Or, take a handful of potassium supplements once the sleeping pills start to work.
I still have a LOT to learn. PD 2 /12 years is all I know.
Is it possible to remove water only?
Handful of potassium fatal? I take that every day. SIX of those 10EU capsules or my potassium falls off . They are always telling me eat MORE..... As if I don't eat enough already!
If on hemo, yes, there is a machine setting to remove fluid only - no clearances (although some will happen naturally through osmosis).
Potassium chloride is one of the 3 drug cocktail used in state sponsored death by lethal injection. It causes cardiac arrest.
Peritoneal dialysis pulls off potassium easily and you being a potassium waster, do need to take in more. However, if you stopped PD and continued to eat "normally," your potassium would climb.
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Hi CHARLIEB53, There are machines out there that remove fluid only for folks who are not on dialysis but need to remove fluid only. They are used for CHF patients. I believe they are done in hospital settings. Not all hospitals have them.
Here is one of the links I found for Aquapheresis machines:
http://www.gambro.com/en/aquadex/Healthcare-Professionals/Aquapheresis-and-How-It-Works/
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To SIMON DOG and others who feel, "The neat thing about discontinuing dialysis is that nobody can take that right away..." maybe so. But have any of you actually gone that route for say,
more than missing a couple of treatments? Uremic toxicity with fluid overload is a horrible way to die. It's not an easy death and nothing to romanticize about. I know from personal experience.
I had uremic toxicity when PD failed on me, so I know a little about what you say, although I did not have fluid overload (PD taking off fluid, just not toxins).
A home hemo dialysis patient can always just open their blood lines, however, I could never consider that if I got to the point of ending it all since that would be suicide and that is against the law. I would not want my family to deal with the state prosecuting my corpse.
I have told the transplant team I plan on ending it all at age 85, and it is their job to get me there.
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I still have a LOT to learn. PD 2 /12 years is all I know.
Is it possible to remove water only?
Handful of potassium fatal? I take that every day. SIX of those 10EU capsules or my potassium falls off . They are always telling me eat MORE..... As if I don't eat enough already!
A home hemo dialysis patient can always just open their blood lines, however, I could never consider that if I got to the point of ending it all since that would be suicide and that is against the law. I would not want my family to deal with the state prosecuting my corpse.
Yeah, you can have only water removed. The main thing is, if one is really, truly ready to stop, there has to be a plan written down in place to avoid ones' loved ones having any future problems with say, collecting on death benefits or life insurance if there is any. A notarized letter fully stating you are knowingly choosing to stop dialysis and that choice is your rightful, but terminal act is always helpful to have in your files. Also a good palliative care plan. Your doctors will try to convince you to stay on dialysis-- it is their responsibility to do so--but in the end you legally have final say. Then it is their responsibility for you to be as comfortable as possible in palliative care. It can be difficult though, because it is not easy finding a doctor who is a palliative care specialist or has a lot of experience with it.
:stressed; I guess like anything else, it takes careful, thoughtful planning. And paperwork. Lots of paperwork.
I just wanted to say that im dealing with some issues that could or could not be ms or something similar too, so i wanted to reach out and offer to be a someone you can vent to and stuff.
i had this exact same thought, that i would hold on as long as i could but once it gets to the point i can no longer care for myself, im done. i totally get that. this crap is hard enough without added crap!
Please feel free to message me any time.
hugs and thoughts
Thank you, Gothic! I think we may have a lot in common. :thx;
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You have no idea how many lives you have touched, and how many more you yet to have an effect upon. Simply posting here you have reached many, and since these pages stay, that potential number grows daily. Many many souls will yet wonder how you managed, how your situation turned out, are you doing alright?
Most everyone that comes to IHD really care for one another as we all are facing very nearly the same kidney failure.
Damn straight Skippy we care, and we do not let each other down, to fail, for fear of our own failure.
Thank you Charlie B53. It is so easy to forget that and get lost in your own head! :thx;
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Hi Drawingdami:
You are welcome, I'm rooting for you, but also respect your decisions
Maybe the pigeon was trying to tell you something? The universe is funny that way! Have you ever read books by Ted Andrews
http://spiritlodge.yuku.com/topic/917#.VqA9AfkrLIU
Ted Andrews/Animal-Speak
Keynote: Return to the Love and Security of Home
Cycle of Power: Year-round
The pigeon is an unusual bird. Although most people think of it as a pest in the city environment, it has very unique characteristics. It is also tied to very gentle and loving archetypal energies.
Today the word "dove" and "pigeon" are used interchangeably. Although there is a difference, the two species are related. It would be wise for anyone with a pigeon as a totem to study the characteristics of the dove as well.
The pigeon has a long history associated with the home and with fertility. The real name of Christopher Columbus was "Colombo" which is the Italian word for "pigeon." Columbus helped discover a new home. The pigeon also has an extraordinary homing sense. It knows how to find its way back home, no matter how far it has gone.
It is because of this that they often are symbols for a time or a need to return to the security of home. Pigeons can teach us how to find our way back when we are lost. They help us to remember and find the love of home and home life that we have either given up or lost. They are the only bird that can drink by sucking up water into their beaks. This reflects that ability to draw on the energies of home, no matter how distant.
They are reminders to us to remember that which has positively affected us from our early home life. Have we forgotten who we are? Are we falling into old patterns we vowed to remember and change? Have we forgotten our basic foundations, the heritage we have had passed on to us through home and family? This includes the morals, the behaviors, the attitudes, etc. Draw upon them and use them.
Because they breed rapidly and publicly, pigeons came to be sacred symbols for fertility gods and goddesses. They reflect the fertility of home and family that can occur when they are around. Pigeons will huddle together during a storm. If there are storms in your life, huddle with your family--biological or otherwise. There will be safety and security in that activity. Remember that pigeons remind us of the possibilities, real and ideal, associated with home and family.
Wow! So interesting! I never heard of this before. Thank you! It does make that odd encounter seem like it had intention!
I was on my way to Neurology uptown, walking along the street and I felt something woosh by me. I thought, "what the...?" and then I felt something land on my head and start trying to pull my pompom off of my hat! So there I am, running in circles and waving wildly while this bird is flapping away, yank-yank-yanking my pom pom. the whole scenario maybe lasted about 20 seconds. Typically, everyone else on the street pretended nothing was unusual and kept on going. Almost nothing will get in the way of a NY-er trying to get somewhere!
One lady did say loudly under her breath, "Guuuuuuurlll...nuh-uh!?!" :rofl;
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:welcomesign; I hope you're not done. You seem to be very keen on things and bring a lot to the table. Thanks.
As for pigeons..here's my story...I spent a couple of cold winters in Colorado. Always felt sorry for these two pigeons that would show up every morning because everything was covered in snow outside and it was freezing. I'd feed them from the deck of my upper floor apartment but got too cold for me to stand out there so...I came up with the uh, "bright idea" to leave a trail of bread crumbs straight into my living room where I sat getting warm next to a cozy fire. I sat and waited and sure enough, they got the message and came on in. I suppose people shouldn't do that but birds and animals kind of get the best of me in that way.