I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: nanadar on July 05, 2012, 05:54:38 PM
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First let me state that I realy don't expect anyone to responde to this and if you do please don't judge me. I really just need someplace to vent because I have no one to talk to. my friends and family say " don't talk that way, it's silly, you should feel blessed that you get the chance to live"
Blessed ??? are you frikkin kidding me ??? Before I started dialysis I had a life, I could go camping and travel and enjoy life to the fullest. I had a great job with people I loved to work with. Then my kidneys started to fail, my health went into the toilet. I was puking for 3-4 hours a day every day. I had to change my work to 1/2 days because I was too tired and too pukey to work a full 8 hours. Everyone assured me that "Wait till you get on dialysis, things will get better" My first initial reaction was to refuse dialysis and just let life take it's natural course. I believe that there is "life after life" so I am not opposed to dieing, leaving my earthly body behind. I have already endured watching my mom and my uncle go through 15 years of dialysis so I knew what to expect. But for the "good of my family" I agreed to be hooked up. And now I have to wonder if that was really the right decission for me? I've only been hooked up for 5 weeks and in that time I have had an endless amount of trips to the Dr., er dept, and my pd nurse for "complications" I am in pain daily to the point that it is hard to breath, and I can hardly get out of bed so I take huge amounts of Narcotic pain killers ( peracets) which only puts poison in my body ( in my opnion ) and lulls me into a drug enduced sleep to escape the pain. I am but a prisioner in my own house because i can hardly manage the stairs without passing out let alone thinking of going outside and driving someplace. I have had to go on "short term disability" as the neuphrologist says I'll be off work for at least another 2 -3 months. I take so many pills that i have to write on the bottles what they are for because I can't remember them all. My family dosen't want to come and see me because they can't bear seeing me in pain and not being able to do anything about it. My pain episodes also include gasping for air which scares the hell out of my small grandchildren who are not old enough to understand what's going on with nana. I cry a lot because of the pain and because I really don't see an end in site. No one seems to know why I'm in pain. I've had CT scans, altrasounds, x-rays and been poked and proded by almost evert Neuphrologist in this city. There is no end in sight. So I have to ask myself... Is this really worth it? Why am I putting my husband ( and family ) through this pain of them watching me suffer and then them being helpless ? I really think I should never have made that pact with my husband that I would do this for at least 2 years. I think I've just comdemed myself to 24 months of suffering ( I wonder if he will give me an early pardon..... even inmates get out after 10 months of good behaviour LOL ) Right now I just want to die. No this is not depression talking... I can't be depressed I'm taking 3 pills a day for that ! Ok I'm done venting .... thanks for giving me a place to do this without fear, cause my family just cranks on me big time if i even mention what my true feelings are.
Blessed be
Nana dar
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It sounds like PD is not working for you. It doesn't work for everybody. What are your clearances??? Have your doctors suggested hemo?
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I am sorry this has been really difficult for you. I wish there was something I could say to help you feel a bit better. Your not alone. :cuddle;
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I hear you. I came to this board hoping to be uplifted and find the strength to go on dialysis. Instead I just want to die now. I'm not blaming anyone but myself for not controlling my diabetes. The more I read here the more I know I just can't put myself through this. It's time to die I guess.
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I had a real tough time getting started on PD. I started out being dehydrated which led to the puking and passing out. I didn't have the pain you seem to be experiencing, but it certainly wasn't a walk in the park. Now, after 11 months, I'm into the routine, my meds are balanced, mostly, and I'm feeling much better. What I'm saying is that it gets better as you go on, don't give up just yet. I know it sucks, but it should settle down. Good luck.
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nana, we don't call this site "I Hate Dialysis" because we all think that being on D is a wonderful life with hearts and flowers every minute. Very, very few of our regular members are going to have anything to judge you for - most of us have had the same thoughts at some time.
I made it through the worst by remembering that I DID have a choice, and I had chosen dialysis. And believe me, the first couple of months are usually the worst for most patients. Knowing that I could quit is what kept me going. Your husband making you promise to stick to it for two years bothers me. He's taken away that choice for you. Being forced to endure pain when you don't want to is harder than knowing you are fighting through because you decided you wanted to.
I'm glad you are already on anti-depressants. That's always the first thing I suggest for people who want to quit. It's good to make sure it's not the depression talking. The next part is to find someone to talk to about this - you have by posting on here, but is there someone nearby you can discuss this with as well? Is the social worker at your unit of any use? (Some of them are just wasting space and air, but not all of them.) A pastor, a mental health professional, even a GP who isn't tied into the idea of dialysis as much as some of the nephs are?
For that matter, are you telling the nephs you are seeing that if they can't come up with a solution to the pain, you want to stop treatment? Incentive never hurt - demand some results from them! Have you asked - or better yet, demanded- to see a pain management specialist? If they can't stop it, they should be doing what they can to treat it. Making you live with the pain should not be an option.
Honestly, dialysis is life support. It's NOT suicide to refuse treatment for organ failure. You are allowed to stop it, no matter how much your family hates the thought. Them wanting things not to change doesn't stop it from happening, and their guilt at not being able to help shouldn't stop you from making the choice that is right for you.
I love life, and I'm glad I fought through the pain and survived, but that was MY choice. There's no shame in making your own choice. I'd like to hope that you chose to fight, but I won't judge anyone who doesn't. :grouphug;
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I had lots of nausea on PD. Ask for Zofran ODT which you can take when needed. Next are you doing manuals or the cycler? Where is the pain? Air bubbles can give you pain in your shoulders. If the pain is worst during fills you may need to try a lower volume til you get used to it. None of this is easy and it takes a while to adjust to dialysis. Don't be hard on yourself about not being able to work. You're going through a lot right now.
I hope you can find a therapist or pastor or someone to talk to. It feels really good to have someone who listens to you. Then if you decide to quit, you will have worked through your thoughts and feelings.
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I hear you brother. I came to this board hoping to be uplifted and find the strength to go on dialysis. Instead I just want to die now. I'm not blaming anyone but myself for not controlling my diabetes. The more I read here the more I know I just can't put myself through this. It's time to die I guess.
This really upsets me. I would be horrified to know that your experience here on IHD makes you want to die! We DO want to be uplifting, but we also don't want to dismiss the difficulties that ESRD will pose. Knowledge is power, but knowledge can also lead to fear and loathing. The truth in ESRD is that ignorance can be bliss, but it can also kill you.
Please don't make any decisions just yet. :cuddle;
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Nanadar, jbeany pretty much said it all.
I am appalled that your family chooses to stay away because of their own discomfort. That is cowardly, and I cannot forgive that. I am very sorry.
People who dare to tell us how we "should" feel really piss me off.
No one here is going to judge you, but if they do, ignore them. ESRD is a personally unique experience, and not everyone does well. But you deserve to give yourself a chance. Five weeks is still pretty early, but it does sound like it has been a horrific 5 weeks. I hope you will find the strength to demand relief from your physical symptoms. No one should suffer like this.
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I hear you brother. I came to this board hoping to be uplifted and find the strength to go on dialysis. Instead I just want to die now. I'm not blaming anyone but myself for not controlling my diabetes. The more I read here the more I know I just can't put myself through this. It's time to die I guess.
This really upsets me. I would be horrified to know that your experience here on IHD makes you want to die! We DO want to be uplifting, but we also don't want to dismiss the difficulties that ESRD will pose. Knowledge is power, but knowledge can also lead to fear and loathing. The truth in ESRD is that ignorance can be bliss, but it can also kill you.
Please don't make any decisions just yet. :cuddle;
I'm so depressed. It seems like it's just one horror story after another on this site. I don't know where you find your inner strength. I'm your basic coward when it comes to medical stuff and now I'm backed in a corner with no way out. Why would all of you put yourselves through this torture 24 hours a day seven days a week? I am not understanding this. There is no quality of life it seems. Only fear and pain.
Edited: Fixed quote tag error - jbeany, Moderator
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Oh Jonndad, please believe me when I know exactly how you feel. I'm sure you would just LOVE to go back and read all six thousand of my posts because if you did, you would see how fear enveloped me. I have been at DEFCON 1 for 8 years since I learned how severe my CKD was. My mother went through dialysis, so I saw for myself how awful it could be. And there were so many times when just when I thought I could do this, I'd learn some other awful nugget of information that sent me into freefall.
I wish I could tell you how to overcome the fear, but I don't know you well so can't say what would work for you. The idea of not being in control of what my body was doing to me drove me mad, so I learned everything I possibly could, strictly followed my diet, was extraordinarily compliant with my meds and appointments, and I did everything necessary to get on the transplant list as soon as my egfr hit the 20 mark. I wrestled control out of the hands of Fate whenever I could. I became very much my own best self-advocate. I worked hard to stay off dialysis, but in the end, my kidneys were going to give out no matter what I did...I think I was just able to prolong the deterioration.
People find their strength from different sources. Some are born with it while some are given it by loved ones. But no one is "strong" all the time. I have had many sobbing jags at 3AM, wondering if I would ever have a future at all, and if I did, would it be filled with nothing but suffering? I personally do not think that suffering makes me a better, more enlightened person. It just makes me angry and resentful. Not a nice thing to say about myself, but it's the truth, and I won't apologize for it.
I'm very well versed in that feeling of being backed in a corner with no way out. But the truth is that there ARE many people who do just fine on dialysis. I know it is hard to believe, but it is true. It's never easy, but I've personally met people who lead vital and interesting lives despite dialysis, and many of them post right here on IHD. Meeting these people in Las Vegas last year forced me to see that while dialysis is daunting, it CAN still provide the opportunity to have a good life.
Sadly, there ARE a lot of very ill people on dialysis who will never recover and will always be a prisoner to their treatment. Dialysis for these people can be torture and continuation of it should be questioned.
Maybe someone should start a thread about what dialysis has given to them instead of what it has taken away. We don't tend to post about all of the wonderful aspects of CKD/ESRD because we come here to discuss problems a lot of the time.
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Jonn, as MM says, you have to remember that people are more likely to come here to talk when they are having problems. When it's all going well, they are often to busy to post about - and sometimes, just superstitious enough to think that mentioning that it is going well is a bad idea.
I did, eventually, do pretty well on dialysis. It was a hard fight, and it was never easy, but I do think it was worth the effort. I learned as much as I could and took control of my health. You do have to fight - the stress, the pain, the anger, and sometimes the medical staff. Knowing as much as I could about what was happening helped me take control and demand the best treatment I could get. It gave me a better quality of life. It was never the same as when I was healthy, but it was good enough in the good times to make the bad times worth fighting for.
Once the worst of the side effects are worked out, it's not 24/7. It's still a huge chunk of your life, but it depends on your own value system if you feel that the parts you have that aren't about dialysis are worth doing dialysis.
And there are plenty of non-horror stories on here, too. Read about Bill Peckham traveling the world while on dialysis. Read about Zach starting his own production company and directing movies that have appeared on PBS while on dialysis for what, 30 years now, give or take? Read any of the posts about how to best visit Disney while on dialysis. Read the tips for camping while on D. Read about the advantages of NxStage and how much better people feel on it. Read the list of those who got transplants and note how many are doing well with them.
Heck, read my story. (I'll toot my own horn here a minute.) I started dialysis with a husband who ran to his mistress as soon as the doctor told me I needed to go on dialysis. I fought long and hard to convince my center to start using NxStage, and used it successfully. I went from passing out every time I saw a needle coming out of my arm to sticking my own graft. I survived a divorce and being so broke for several years that I often lived on less than $20 a month for food. I nearly died with my transplant, had to relearn to walk, wasn't allowed to eat or drink anything for 4 months straight, and was still undergoing surgical repairs two years later. In the middle of recovering, I dealt with my grandmother on hospice, cleared her hoarded estate, went back to school, graduated with a paralegal degree, and bought a house I'm now fixing up on my own. Lots of what I went through sounds pretty horrific at times - and yes, it felt that way, too. But I CHOSE to fight through and I've come out the other side in wonderful shape with hopes for a fabulous future. I fought those battles one day at a time. I certainly didn't expect to find myself where I'm at now, but it was worth it.
Hey, I jumped out of a plane while I was on D. It was amazing. When else was I going to do that? I wanted to remember that I wasn't just a patient - I was a human being with a need to live, and I planned to do it while I could.
I won't judge anyone who doesn't have the strength to fight, but don't think because we talk about the fighting parts on here so much that there aren't good times in there that are worth the fight.
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Heck, read my story. (I'll toot my own horn here a minute.) I started dialysis with a husband who ran to his mistress as soon as the doctor told me I needed to go on dialysis. I fought long and hard to convince my center to start using NxStage, and used it successfully. I went from passing out every time I saw a needle coming out of my arm to sticking my own graft. I survived a divorce and being so broke for several years that I often lived on less than $20 a month for food. I nearly died with my transplant, had to relearn to walk, wasn't allowed to eat or drink anything for 4 months straight, and was still undergoing surgical repairs two years later. In the middle of recovering, I dealt with my grandmother on hospice, cleared her hoarded estate, went back to school, graduated with a paralegal degree, and bought a house I'm now fixing up on my own. Lots of what I went through sounds pretty horrific at times - and yes, it felt that way, too. But I CHOSE to fight through and I've come out the other side in wonderful shape with hopes for a fabulous future. I fought those battles one day at a time. I certainly didn't expect to find myself where I'm at now, but it was worth it.
Hey, I jumped out of a plane while I was on D. It was amazing. When else was I going to do that? I wanted to remember that I wasn't just a patient - I was a human being with a need to live, and I planned to do it while I could.
I won't judge anyone who doesn't have the strength to fight, but don't think because we talk about the fighting parts on here so much that there aren't good times in there that are worth the fight.
That's very inspiring!
I think everyone goes through times when they wonder if its all worth it. For me every once in a while I'll have one of those days where I feel almost normal and my body is fresh and my mind is sharp. Those days keep me going, they remind me how awesome it is to be alive. I live for those days and I savor them.
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OMG, I had no idea that I would get such an outpouring of support from you guys. I have really been feeling alone in this. The pain is just under the rib cage , from the centre to the right side. I've kept a "pain diary" daily / hourly as to pain level, gasping spells , when I do PD,how warm my fluid is, when and what I eat, fainting spells, activities I was doing at the time..... all in an effort to see if I can find anything that ties it all together and what brings it on. It does seem to be worse at night when I try to lay down. And yes they are thinking of switching me to Hemo. but only after they do more tests next week. My hubby thinks it's Gaul stones which are being aggravated by the PD fluid. .... but he's a chef not a doctor LOL
Unfortunately I do not have a pastor to talk to because I am Pagan, and I'm one of the "elders" in the community, and I do not belong to any particular coven .... others come to me for direction LOL I will talk to my social worker and see what she has to say. I really hope you are right that there is a light at the end of the tunnel cause right now all I see is a very long dark tunnel. jbeany you are an amazing person to have gone through what you did and come out on top. I applaud you for it. I just wish my quality of life would get better cause right now I am not living, I'm just existing. My hubby says I need to make a "bucket list" to give me something to look forward to achieving... but really there is nothing I want to do... I've pretty much done everything I ever wanted to do. It's been a great life, I've done more in my life than most people get the chance to do. I've traveled and I've rode the world's tallest roller coaster. I've made a huge difference in 100's of people's lives as a leader of an inner city children's group... hell I started that group as the first ever in Canada. I have awards out the wazoo for it. I've taken in foster children and touched their lives and watched them grow into responsible, caring adults with families of their own. I never want to be dependant on a " machine " ( even if it is just manual ) in order to live. For 20 years I've said... If I ever have to have outside support systems to live... just pull the plug. I think my family is spooked because I'm not afraid of dying. I just see it as the natural order of things... the wheel of the year turning... birth, life, death and rebirth. Thankyou for your words of support, I hear you all and you have certainly given me something to think about and pray on.
blessed be
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Your CKD experiences sound horrific. Your life experiences though.... Something you haven't done yet that we need you for: You haven't let us get to know you. I admire everything you've done so far and it sounds like you'll continue helping the world as long as you're in it. I'd never judge you for your decision to discontinue dialysis, but I hope you're able to hold out a bit longer to see if things improve.
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I was in this spot a few weeks ago I had actualy stopped going to dialysis for 2 weeks . I am tired of not doing what I used to do I am not working living on disability my girlfriend of 4 years could no longer take watching me like this and sent me a text to break up with me etc. This shit does suck I have returned to going to dialysis reluctantly they even had the cops come find as i just refused to go . not sure why i returned to be honest and not sure how long i will continue I am looking into moving back to maine were I am from as I will be closer to friends and family.
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You need to get to know me ?// not much to know really. I lead a spiritual life with love for everyliving thing in the universe. I've been promoting taking care of the mother earth before recycling was comonplace. I am a 2nd degree Reiki practioner so I live by the "principals of Reiki" which are.....
Just for today... I will live the attitude of grattitude
just for today ... I will not worry
just for today... I will not anger
Just for today ... I will do my work honestly
just for today .. i will show love and respect for every living thing.
Yep that prettymuch sums it up for me. I tred lightly and harm none. ( people, animals,bugs, plants, the earth. )
I am a herbalist so I make potions and concoctions out of wild herbs. What others see as "weeds" I see as free food. LOL
I have a wicked sense of humour and play practical jokes on my hubby. ( he started it LOL)
I've traveled... been to Disney land twice and disney world once, Are you seeing a pattern here??? yes I am a big kid.?
I've been to Mexico, and England.... actually hubby and I eloped in England. got hitched by a very nice Druid Priest over there. Bought my wedding ring from a band of gypsies in Picadilly Circus in London. LOL
Have been a leader with Scouts Canada for 33 years. Donate my time and resources to " Alberta Learning and Literacy Day" because i believe that all children should embrace reading and learning. I teach a session on "story telling" there every year for the past 10 years.
I love camping and the outdoors and hunting wild mushrooms. I own 380 acres of land out of the city that allows me to do this without the fear of pesticides. I have 6 lovely grandchildren by heart ( from my foster kids) aging in range from 2 years to 14 years old.
Thats about it. I'm a pretty simple person who lives modestly and helps others whenever i can. As most pagans we are not rich and we always share with whoever comes knocking at our door in need of a meal no matter how little we have in the house.
Blesses Be
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nanadar, first of all welcome to the site. :welcomesign;
I had tears in my eyes when I read your post. It is not an easy road to travel, you will often dis pear and question your decision to do this. I wont say it will get any easier but you will come to except it. give it time. Think of all the people that love you, think of all the things you have left undone.
I am a carer for my husband and it breaks my heart seeing him struggle, but to-morrow is another day and all could be well. You sound like you have lived a full life, doing good and helping others, its your turn to be helped now. Hope to-day you are feeling a lot better.
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You need to get to know me ?// not much to know really. I lead a spiritual life with love for everyliving thing in the universe. I've been promoting taking care of the mother earth before recycling was comonplace. I am a 2nd degree Reiki practioner so I live by the "principals of Reiki" which are.....
Just for today... I will live the attitude of grattitude
just for today ... I will not worry
just for today... I will not anger
Just for today ... I will do my work honestly
just for today .. i will show love and respect for every living thing.
I love this and will have to try to adapt it to my own life.
I had a pagan friend once who signed notes 'Blessed Be' too. It's just so lyrical, I always loved it.
Your take on life is simply beautiful. I wish I were one of these low-key, live close to nature types, but I'm a dyed-in-the-wool highly strung urbanite. Perhaps I can use your mantra to begin my reform?
I agree with jbeany that your husband, probably with the best of intentions and a broken heart at the thought of losing you, still cannot expect you to keep to some pact. I truly hope that you get your pain addressed and will be able to stay with us, but if you just cannot, all of us understand and will wish you a peaceful passing.
John, it is often said here that the fear of dialysis is worse than the actual dialysis. Now, that is not going to be true across the board, but please understand that you won't know how this is going to affect you until you try it. It is most definitely not only horror stories here, but those do stand out. It is so normal to go through a period of depression, i know Bill Peckham talked about this on a video I saw about him once. Again, it's your choice whether you want to do this or not, but if you are going to refuse dialysis, I would say you must tell your children and give them the chance to say goodbye. It's not that this will make losing you any easier, but at least you will give them the opportunity to say or do any last things they want with you still here. I hope you can find adequate treatment for your depression and give dialysis a shot.
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today was a much better day . my PD Nurse made arrangements for me and some family members to talk to the special nurse who deals with " personal Directives" so we can put one in place and the family will understand better. That alone gives me a feeling of comfort. I actually did my first "away from home" dialysis exchange today. It went well except for the part that I forgot that I needed some way of making the bag be higher than I was so I sat and held the bag in the air for part of it LOL
My 3 yr old grand daughter thinks " nana is funny when she takes her medicine" seeing me sit there holding the bag over my head. LOL
It was a good day and I was surrounded by people who care about me... I am truly blessed.
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As one of the posters stated, PD does not work for everyone - has the doctor discussed other types of dialysis that might work better -- I am so very sorry you are having a hard time but do understand --- This group is a wonderful support group and you can lean on them for support ------ they are always here as I have seen - for one another
Roberta Mikles RN www.qualitysafepatientcare.com
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It was a good day and I was surrounded by people who care about me... I am truly blessed.
This is good to hear, even if the good day is "just for today." Glad you are hanging in there. :cuddle;
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Nanadar, people here understand fully what you are going through! We all love you and will not judge you. Dialysis is a Life Support for those with ESRD. That is fact! Sounds like you are at Peace with this decision and that is as it should be. Although, selfish me, would like to have you around alot longer, but that is "selfish" me.
I won't let my husband go either! So I understand where your husband is coming from. He loves you. He doesn't want you to leave and it WILL hurt! We are born, we live, then we will die! But those left behind will Hurt & Grieve, as it should be. That is life! He will be at peace about it too, and when he is serious about it, as much as I hate it, I will honor his wishes.
No one here will judge you cause they know what it is about!
God Bless You,
lmunchkin :kickstart;
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One day at a time. The only way to survive while having ESRD and being on dialysis. All I have to do is get through today, this hour, this minute, and some days this second!
Find something to do that is fun, even it is lying in bed with a book or TV. I have taken up watching WWE wrestling matches this past year. They are my crazy fun!
After thirteen and half years on hemodialysis, I have good days and bad days. I still have days where I wonder is it ll worth it? Other days are filled with joy and blessings.
:grouphug; :grouphug; :grouphug;
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:Kit n Stik; :puke; :sir ken; :banghead; This is how I feel while I am in the chair.
:flower; :bandance; :yahoo; :2thumbsup; This is how I feel the day AFTER dialysis.
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The pain is just under the rib cage , from the centre to the right side.
nanadar, I had pain similar to this for almost a year, day in and day out. I could not even sit down to eat because of it. We called it my 'mystery pain'. Turned out it was bone pain from my PTH level being too high (clastomas, or 'brown tumors' on my ribs) and within two days of my doctor doubling my Sensipar dosage it disappeared. It might be worth looking into.
Jonndad, not all of us are at death's door. Dialysis may suck but you can still have some semblance of a normal life. Honestly, I don't post here very much unless I am having issues but that doesn't mean that's all of my life on dialysis. (It isn't.) It's just that this is the place for doing that. It's an outlet. Why would someone like nanadar want to post her troubles here if everyone were all 'suzy sunshine' and pollyanna-ish about what life on dialysis is really like? Perhaps she'd refrain because she'd fear not being understood here, or being attacked for being 'too negative'. You can get that on the DaVita boards. If you stick around long enough you will see the positives. Maybe not the positives of dialysis but certainly the positives of this forum and the people who make it what it is. I've never found myself surrounded by more positivity and hope than here.
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A Healing Prayer
Oh Great Goddess
Mother of Mercy and Healing
Send the energy of Hygeia
to nourish from Her Sacred Bowl
Send the energy of Brigid
to heal with waters of Her Sacred Well
Send the energy of Demeter
to restore life to withering cells
Send the energy of Quan Yin
to bless the healing with peace
Send Your healing wisdom to the body
to restore its sacred balance
Thank You Great Goddess
Mother of All Life
~ Abby Willowroot © 1999
Blessed Be !
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Nanadar
There have been a lot of interesting posts here. I think I can say that everyone on dialysis has at one time thought "what the heck" and wanted to quit. I'm one, it comes and goes. Some mornings I just don't want to go on. I too am not afraid of dying. I've lived a good life, have wonderful daughter's and a wonderful wife. Those alone are worth living for. BUT there are the times where I want to quit - I'm just plain tired of this life (or life style) Why I haven't quit dialysis I don't know. It seems that everytime I decide that I will quit tomorrow - tomorrow is better and I continue on.
Nanadar - play this game with me please. "what if"
what if you find the problems with the pain - and you began to feel better.
what if you are feeling better and there is one more child that needs your love, care, and guidance (and you are not here to give it)
What if you quit without trying all the alternatives
What if there is someone in the world that needs what you can give and you are not there.
You don't know what tomorrow will bring - it maybe good, maybe bad, but unless you live to get there you will never know.
Finally, if you decide to quit dialysis and let nature take it's course, none of here will think less of you. Your family will grieve, but life will go on.
Grumpy
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Very well said Grumpy and excellent reasons too!
God Bless,
lmunchkin
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I'll preface this with the fact that my husband is the patient, I am the caregiver. We did PD for a year, and have switched to home hemo in March of this year.
@Nanadar - Your story made me sad for you. It's my belief, and opinion, that no one can tell you that you have to go on. What I -do- hope is that you are able to 'tough it out' long enough to see what your life CAN be like once you move past the beginning phases, which are hard, and suck. I was glad to read further down the thread that your family is being more supportive, because I think that's a huge help in healing and dealing. You've found the right place for the venting and spewing that we all need to do from time to time.
You mentioned fear of judgement. Just for today, don't fear judgement. Anyone else's judgement is made without living in your skin, walking in your shoes, etc etc, and therefore, is pretty invalid. :) Carry on, grab your bootstraps, and you WILL have a moment when you know what the right path is for YOU. I highly encourage you to explore hemo (home) dialysis. We found, for US, it was the better modality.
@Jonndad - I'm so saddened by your post. Others have stated it here, but the reality is, we are all far more likely to come here to vent, share fears, concerns, etc, than we are to say 'Holy crap! Home hemo is kick ass, we've got it under control, and we've taken our lives back!!'. Because... when you take your life back, you don't spend as much time here. :) We went though the icky times, the scary times, the times when my husband felt like he just couldn't go on like this. Fortunately, we've come to a place where we've altered our lives to fit dialysis, we've educated ourselves enough to know how to handle issues and problems, and honestly, aside from the time factor, it's not the huge mountain we felt like it once was.
Just know that people reach out more when they are hurting, scared, needy, angry... etc. That's a big part of why you see this here. They need that space, and that comfort of other people who can say 'Been there. Done that. It DOES get better.'
It's a lot like my husbands moods while he was doing in center dialysis. He struggled because he felt like he was seeing his future every day in the sickest people. At home, things are much more happy and laid back. :)
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I wanted to apologize to the entire group here for hijacking this thread to an extent and butting in. I was in an emotional state at the time and certainly regret saying what I said. I apologize to the OP. I also am sorry I said what I did as this is a group for people to vent about dialysis and people need to do that. Thank you for your support and kind words.
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Jonndad, I am sure that no-one was upset by what you posted. I can fully understand where you were coming from as I have felt that way myself. I hope that you can come to realise that life is worth living despite ESRD and dialysis. Come here and vent! It does help.
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Jonn, I didn't think you hijacked the thread. You responded to it honestly and were posting about the same feelings that Nanadar had. Our founder started this site because his posts on "support group" sites run by the major dialysis companies were deleted whenever he raised any negative points. Nanadar's post might have been deleted on a corporate site. Here, we do post the scary stories - because we can, and because people should know that it's not all hearts and flowers. I find it reassuring to know that other people have struggled with the same demons I've faced down.
There's nothing scarier than thinking you are alone.
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love your choice of graphics. that pretty much says it all.
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Jonn, I didn't think you hijacked the thread. You responded to it honestly and were posting about the same feelings that Nanadar had. Our founder started this site because his posts on "support group" sites run by the major dialysis companies were deleted whenever he raised any negative points. Nanadar's post might have been deleted on a corporate site. Here, we do post the scary stories - because we can, and because people should know that it's not all hearts and flowers. I find it reassuring to know that other people have struggled with the same demons I've faced down.
There's nothing scarier than thinking you are alone.
Ditto.......
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Nandar:
I am the court jester here. That doesn’t mean I don’t understand your pain. I have been there, done that. I represent the statistic that is one-one hundredth of one percent – those who survive renal failure without a transplant.
I came here a ruined person. My kidneys failed at the exact same time Lymphoma was discovered and I am 74 years old – not much chance of making it out alive. My life crashed around me, no one wanted to be around lest they catch whatever kooties I had. I live 35 miles from the RAI (Frenius) poke you in the chest dialysis center – yep, just as gas prices were going up. So, I parked my 20 gallons to the mile pickup truck and sold my Harley which was new, paid for and had only 3,000 miles on it.
Life was over.
It was a year ago that I was wheeled into the hospital, hallucinating with a creatinine count of 17 and the opinion of a Nephrologist that I’d never recover. Well, Nandar, most of the time that might have been a different story. After a week I woke up to see this scruffy Dude reading a Good Housekeeping magazine while a rusty looking refrigerator was hooked up to my chest.
I did two things that might help you, it helped me: I took charge of my own healthcare, I developed a new circle of friends.
I wanted to know everything about dialysis. I read the internet, I read messages here, I questioned the people at RAI. I discovered they were taking out far too much water and the argument ensued. But it worked. I felt better and my numbers began to improve until one day I told the Doc I wanted out. We retested and I escaped.
Also, everytime I showed up for dialysis I made the rounds of all twenty dialysis positions and talk to each patients, asking how they were and could I raise some hell on their behalf. This brought me into contact with the administrators who really didn’t have much choice. Yep, I threatened to go to DaVita but at the last minutes they changed their mind. I will be seeing all of those patients next week when I go back for another $67 visit with the Doc.
I am here to lighten you load, to refocus your outlook on the absurd and the obvious change of the subject. You can find be being a butt here and there and on the political discussion page.
I posted a book for you to read. I will do whatever it takes.
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IF it makes you feel any better, ive been doing this for over 5 years now, and there are still days i wonder the same thing....
Part of me does feel that this is a good thing, its keeping my alive for my child, and for myself to learn things... but then the other half says wow this is a miserable way to "live" especially if you believe in Quality over Quantity... and if you believe that death is not the end, but a new beginning, id pressume it would be alot harder to bare this burden.
Taking one day at a time helps.
Perhaps PD isnt the type of D you should be doing. I tried it, twice, and both times it ended badly. So im back on hemo.
I hope things turn out as well as possible for you.
Stay strong as you can and remember we are only human ;)
:cuddle;
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I feel compelled to respond to your post. And believe me, NO judgement. I have been on dialysis for 8 weeks. Right around where you are, I had to tell my son that I might need to opt out if things did not improve. I never thought I would say that to him, but I was there. It was the option to opt out and trying to hang in there for my son that kept me going this long. I had surgery for both the fistula and a catheter at once. It happened fast for me, so I needed the emergency access. I had the labored breathing, and many other awful symptoms. Very scary and yes, it is natural to feel like not wanting to live this way. I was so sick, this is the first time I've spoken of it on here. And I am vocal. It was just too bad to even articulate, I literally felt the strength and energy to live leaving my body. I can only speak for myself, but I made secret milestones for myself in order not to quit.
One was waking up from surgery (which I secretly hoped I wouldn't). I asked for valium and slept as much as I could to get "through it" the frirst month especially. I also took pain killers if I needed them. I made a deal with myself at that time to at least give it until the chest catheter came out before I decided to quit. Quitting is so final. 8-14 days or so, and its over. Whereas, you never know how different things could be in a month. Luckily, I didn't have anyone holding me to a timeframe (did that mean they don't love me enough? - See? Can't win).. I still have the catheter in my chest. I have gone from being unable to feed myself, never mind cook or clean to driving myself to dialysis, cooking, and I recently ran some errrands and washed some dishes. I went from sleeping all day to waking up by 9 or 10 am and staying up, even if I am still largely sedentary. I feel like I have literally been brought back from the brink of life and I suppose I have. In fact, I have been wrapping my head around the idea that this machine is actually keeping me alive, love it or hate it.
I do know and have learned it is important to tell the techs how you are feeling, because there is much they can do right there to help with much of it. For instance, I was losing weight and had to have them lower my dry weight. It helped with the nausea. They were giving me IV iron, as dialysis often causes anemia. They were supposed to meter it oiut, pushing in a fourth of the dose each hour. The techs got lazy and pushed it all in at the end. It kept me up all night. After this happened twice, I was able to identify why. I asked them to put it in the beginning. Since then, I have been able to sleep.
As I am starting to wake up, I am learning about dialysis itself and how to work with the techs to improve my experience. I have crashed and nearly passed out a couple of times. I was very nauseas, even in the chair, in the beginning. I have much to learn, but given that, and in spite of myself and some incompetent techs, I have gone from suicidal to hopeful. and from feeling as though I were dying to feeling a little reborn.
I am still the reluctant patient, part of me wishing I had just died of complications during fistula surgery, so I wouldn't have to drag my son through a long, terminal, rare disease (or, to be honest, that I wouldn't end up this way). My lifestyle was very spontaneous and free. It was the core of who I was. This is a devastating change for me.
But, after having faced the abyss, I feel there may be a purpose in my existence. And further, I owe it to myself to learn about dialysis and to work with the staff to get it right, even if it means complaining. I still have the catheter in ny chest/neck, so the deal I made with myself aboiut hanging in there is still on. I have just switched to needles this past week and just did two for the fist time yesterday. I hope to have this catheter out in 3-4 weeks.
I keep focusing on how great that will feel, but even further, I have decided to be trained for home hemo, to release those in-center chains and take control of my schedule. If I can make it this far, I can stick myself. I don't want to do PD, for several reasons, including the ability to swim and take bubble baths. So, having an image of 3 months from now being a lot different. I have decided that, even if I am never restored to 100% of my 25 year old self, if I have 60 or 70%, I wiill try to put it to good use.
So, all I have to share is my personal experience and hope. Yoiu never know, you can turn a corner and wake up one day and realize, hey, I didn't reach for my nausea medication this morning! Or, I didn't throw up this morning! Or, I have some energy today! I feel human again!
Feelings are powerful, and I have noticed that the worse I am feeling physically, my emotions tend to follow. Just remember, feelings are fleeting and change with each passing day, while quitting is a final decision. Personally, had I not improved, (and believe me I am not my old self yet if I ever will be), I am not certain I would be able to stick it out no matter how much I loved my loved ones. Everyone has a limit to how much pain and suffering they can tolerate. But, if you're at all like me, you are driving down a road and there is a corner up ahead, with some relief once the corner is turned. Hang in there, my friend. I wish you much relief and recovery. You are definitely not alone.
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I asked this same question a few months back and got 'yelled at' in forum (ok perhaps not yelled at but the responses weren't all very nice, lol). Glad you are getting a lot nicer responses. :2thumbsup; I understand your feelings completely and wish you the best. Dialysis is tough and I'm having a hard go of it at the moment so I can't say much to encourage other than ... life is precious and yes dialysis makes it sooo much harder than it is normally, don't make any hasty decisions please. I hope the best for you and will be praying that your pain and discomfort lessons. No judgement here, no matter what you choose in the future. *hugs* :grouphug;
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I hear you. I came to this board hoping to be uplifted and find the strength to go on dialysis. Instead I just want to die now. I'm not blaming anyone but myself for not controlling my diabetes. The more I read here the more I know I just can't put myself through this. It's time to die I guess.
I was feeling somewhat like yourself not too long ago. I felt like I knew what it meant to stare into the abyss. I didn't see an end in sight, and when you think about it all at once, it can be quite overwhelming. I was in a dank windowless apartment to boot and had lost my job due to this disease and was feeling quite grim indeed. I looked for another apartment, but without my former job, well, rents were not affordable anymore, not for anything decent. I was deeply depressed and while I was seeing a counselor, I could not take SSRIs (anti-depressants) as I have bad side effects with them. I was about to go on or had just started dialysis, was sick as a dog, and felt quite alone. And just when it seemed the darkest, I made a simple phone call to my landlord and long story short, I got a great two bedroom apartment on the top floor with a view of downtown Bellevue and Mt. Ranier (on a clear day) - with open windows and a balcony. In other words, a much more healing environment with sun and air. Further, my landlord decided to keep my rent the same. She said she wanted to help me out, she knew I was going through a rough time. It restored my faith in people, and I felt like someone or something wanted me to stick around. Maybe, I thought, I could even help others.
After three months of dialysis I started to feel better. Amazingly so. I am battling some new issues and have had some minor setbacks, and I am just hoping that it smooths out, but the thing that strikes me most is, 1. I almost gave up right before something got better, and 2. We have this one life, and choosing to end it is so final, whereas a rough patch may feel like forever, but is in fact temporary and there is generally always hope, even if it sometimes comes from the strangest places. So, hang in there, it takes a while but you can feel better. I wish you all the best and keep writing! How you feel is very normal for this situation. But feelings are one thing, and actions are hopefully well thought out and not simply based on a fleeting feeling, however powerful or real. Take good care.
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When I was diagnosed with renal failure, it cut me at the knees.
My five brothers and sisters turned their back on me when I got sick ten years ago, and this hurts deeply, very deeply, made ever so more painful with the loss of my mother 6 weeks ago. I have been "kicked out of port" but they will not win.
Find an outlet for your wishes or your frustrations. Don't give up. Don't sacrifice your life to those who are only interested in the fees they get because of your pain.
Maybe you can find something different from your life's work to give you a new outlook on life.
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Nanadar, I'm my husband's care partner and while he has never said he will quit dialysis, he did ask me to kill him about a month ago when he was in the hospital. He had pneumonia and a heart attack, and was on a respirator. The day he came out of the sedation he wrote a me note that said "kill me." And he started to cry. That was probably the worst day of my life. If I had been given any reason to think that he would not or could not recover, I might have let them remove the respirator. But I also knew he was loaded up on fentanyl and midazolam, and he wasn't himself. My husband is a Pagan sage, and I have no doubt that he has no fear of dying. With his lifelong health problems, I know that when it comes he will welcome it. He says he wants to rest in the arms of the Mother. But there are reasons he wants to stay, too. He has no children, but feels compelled to pass along his vast knowledge to someone. Interestingly, after he was out of the hospital a longtime friend asked him to mentor her in her pagan studies. And he also says that I'm the biggest reason he is still here. We do hemodialysis at home and he says he will never go back to in-center. So we HAVE to make this work, and it's getting better each day. We've been doing it at home now for about 2 months; he started dialysis in February of this year. He still feels restricted and bound by having to be hooked up to a machine but he is able to work two days a week and do things the rest of the time that he wants to do. I tell him it could always be worse but he thinks i'm minimizing what he has to deal with. And the truth is, there is no way I can know how awful it is for him. I can only be here and love him and help him to the best of my ability.
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I started in center dialysis 3 x per week in the middle of January, 2012. So its been seven months, and I'm training to switch to home hemo. That's the extent of my experience. So, for what its worth....
There's lots of places I'd rather be that hooked up to dialysis. I don't like the ups and downs physically and mentally, either. If there were an alternative, I'd jump on it today. Instead all I have is the years-away hope of transplant which isn't a cure all, either.
However, dialysis is less bad than I'd thought it would be. Its not painful. So all things considered, I'm exceedingly happy that its available and effective. No "woe is me" attitude is ever going to make it better.
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Well is "Dialysis Really worth it?". I certainly think so! I dialysis my husband at home, and it has kept him with me for 8 yrs now. He will give it up one day, less the Lord bring him home earlier, but for now, he aint going NOWHERE! We are doing this and still enjoying our lives. I do my darndest to see that D is not in our way, period. We go places when we feel like it and do things when we feel like it. God has Blessed us and we dont want to throw those Blessings away.
So yes, Dialysis is Worth it! It gives me longer time with the one I Love!
God Bless,
lmunchkin :kickstart;
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Well said jbeany... my two cents are...look at how much you have already had to go through so maybe give it a little more time and see if it gets a bit better. Dont feel bad forhow you feel. We all have ups and downs because this is scarey and life changing. Give life a chance. I always tell myself this...this may not be the life i planned but it is the one i got and im going to try to live it. :waving;
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Dialysis is worth it? Yes, the good times make it worth it. But there are times when it seems like it isn't. That's for sure.
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Whamo , I completely agree. My husband has had a brillient 2 weeks of feeling quite good after feeling naff for so long. We have to cherish moments like these.
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yes it is . i may need a few hours flat on my back afterwards , and i may give nurses dogs abuse when they hurt me with needles .
then my son appears with tea and toast and a smile , and it makes it all worthwhile .
life is what we make of it , and all we need to do is find the motivation to go on .
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:yahoo; I had a fantastic day at Disneyland yesterday with my wife. The crowds are the lightest of the year there this week. I plan to go early Thursday morning as well because the park closes early for a Cast member function, and I figure people will stay away that day because of it. I had my chest catheter taken out yesterday before I went. Today I took the bandage off after asking my wife, a nurse, if it was okay. It bled, so I put on another bandage. Those catheters become part of your body if you leave them in too long.