I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Goofy on November 16, 2009, 08:30:40 AM
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Today is that last day of my life as I knew it. I'm getting my PD cath exteriorized tomorrow and I will probably start dialysys next week.
I know I need it be all seems unreal. I keep telling people that my attitude is...............well what am I going to do? I need it and I've accepted it..............which I think is a big lie.
I'm not afraid of the surgery, I'm afraid of the whole dialysis thing. Then I started thinking about the poor people who just all of a sudden get sick and they tell them th e have renal failure
They had no time to "prepare" and their normal life instantly changes. I've had plenty of time and I'm still scared.
So woe is me...................I know there are other things that are more important in life. I guess I better get used it.
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I am one of the people who did not have any time to prepare. I also had no time to lament over it. I don't know which is worse. They both suck for different reasons. I have been on dialysis since March and I really can't tell you how I feel about it. First, I am thankful for it because we all know the alternative. I do in center. I hate sitting there hooked up for 3 1/2 hours. 9 months later it is starting to sink in that this is my new life and I am accepting it more and more. Any operation is scary. You will be in my thoughts and prayers tomorrow.
Marc
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Goofy,
Research shows that a very large part of how well we do is based on ATTITUDE! A gloom and doom attitude will shorten life and result in more medical conditions.
Dialysis is really a gift of life. Without it you WOULD die. Try to change the way you look at it so you will have a better quality of life overall.
That doesn't mean yo have to wear rose-colored glasses. Sure there will be times that things seem tough. Have a cry and get over it. Life is for the living, so grab it with both hands and enjoy that you have the chance to continue this wonderful journey.
And I am nearly certain that you are going to feel so much better after starting PD that you will wonder why you waited so long.
Sure, things will be different. But different is just another way of living.
Aleta
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You are not scared of dialysis you are scared of your life change. It will change, but you will adapt and learn to just clean the bathroom instead of the whole house. The next day wash the sheets instead of cleaning the whole house. AND on PD it won't be as bad. You will just have to deal with the time that it takes to do it. I'm sorry. I know the valley you are in. You don't want to give up your normal life. I can't blame you.
We are here for your tears to fall on. :grouphug;
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I to am scared to do dialysis, Its not quite my time yet but I do know its coming. I have my fistula in place and maturedl. I am very anemic My iron binding capacity is 40 which should be 250-450 I havent seen doc since test He has been out of country .. He will bein office tomorrow. How do you really prepare yourself.? I have tried to eat right but dont think about the right way to eat after dialysis. What would you do diffrent if you had it to do all over , as in what to do to prepare for dialysis? I hope this doesnt sound to corny but need to do the right thing.
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Goofy, I'm sorry you're struggling right now. Most of us here have a pretty good idea what you're feeling.
Aleta is absolutely right. Attitude is important, but that is not to say that you have to pretend that nothing bad or traumatic is happening to you. Try to use that 'goofy' sense of humor of yours to find little things (or big) to laugh about and take some of the gravity out of the situation. My husband and I ended up laughing uproariously while discussing our wills (in preparation for the remote possibility that we both die during the transplant). I think we also cried a bit. They both help in their own way.
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Lordy, lordy, I know what you mean. My kidney failure caught me by suprise also, and no one bothered to tell me even after I had started in center hemo. I thought dialysis was temporary and things would soon be back to normal. It wasnt until the surgeon who does most of the fistulas saw me --a new face--and stopped to introdue himself. I nearly fainted when he told me this was probably going to be a "rest of your life" situation. I went into a deep depression I am only now recovering from, and at one point decided to just stop dialysis and die. My friends talked me out of making any kind of decidion then, but its still a struggle and there are days when I have to wonder if it is worth it. May God give me (and you) the strength we need to carry on.
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Change always scares me. Even if it's for the better! :urcrazy;
I hope the improvement you feel will help you get through the adjustment time.
Take care! :cuddle;
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Goofy, as a veteran of three weeks standing, let me tell you that I understand your feelings 100%. And, what's more, I share them 100%. I am finding the best support is that I receive on this site. We do understand and can truly emphasise with you. I don't have any wise words for you. The best I can do for myself is to hate the disease, hate dialysis but press on regardless . I find that I am now, occasionally, having moments where I am living without concentrating on the negatives. I hope that these moments increase, And I hope the same for you. I reckon being scared is absolutely normal. Keep sharing your progress and feelings with us.
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Goofy, I know it seems like your life is over. When my husband started dialysis, my first thought was life as I knew it was over. This will be our life from now on. He has been on dialysis for about 5 weeks and it is a routine now. We are doing NxStage home dialysis. He is on the machine as I type this. Yes, it's inconvenient, but if what we are doing now is all we will need to do to keep him healthy, then it's worth it. My husband still works full time and we still go out and enjoy ourselves. He feels so much better, has more energy, sleeps better and looks better. We are even planning a trip to PA next week (we live in Georgia) and will be taking the machine with us to use up there. So there can be fulfilling life with dialysis. We found that anticipating dialysis was worse than the actuality. Hang in there and try to keep positive. :grouphug;
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Goofy,
I completely understand how you feel. I am pre-dialysis too and the thought of the day when I actually begin dialysis scares me silly.
On the other hand, I have been paying attention to your posts regarding your thoughts about starting dialysis, and I want you to know that you have been an inspiration to me. You are a brave woman to make the big jump and I wish you well. My thoughts are with you as you begin this new stage of your life. I'm sure your family will be very supportive and forever loving.
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Goofy as your pd days are starting , mine are coming to an end. I go in tomorrow to have my tenchof out. I want to say so much to you , but im short on time right now , so much to do before i go in. So i will pm you when im out and on my feet. It might be a few days :thumbup;
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Your life is not over. far from it.
Remember dialysis is here to keep you LIVING your life!!!! And that's what is important here - your life.
Yes, some facets of your current lifestyle will change - that can't be avoided... but many people go through changes in their lives (divorce, having kids, then having them leave home, financial problems-or successes, losing parents, etc etc) as with everything it takes time to adjust but I think you will find that once the initial shock of dialysis wears off and you get into a routine you'll realise it's really NOT so bad for you and more to the point you'll hopefully stabalise and feel better able to do stuff to live your life more normally(e: feeling better) - and that is very important.
We all face changes in our lives - some small, some large.. yes this is a large change.. but you have known this is coming and you have been preparing. I think this is definitely better than to go into acute renal failure and have all this come on you with no warning and as a total shock (but that's just my opinion). Thanks to IHD you should have some idea of what to expect - and that's a good thing I feel.
Your life is far from over - dialysis will ensure that. Try and stay positive!
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Oh Goofy - I think it's wayyyyyy harder for you people who have to make the decision. When it's taken out of your hands it just happens to you. Believe me you will be fine on PD. You are still able to be so independent! Just take it one day at a time and you'll get there I promise. You'll look back and wonder why you were so worried. I know that really doesn't help right now, but try to stay positive. And keep posting. It really does help to let out those feelings.
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Hi Goofy - like Galvo, I'm three weeks into PD but six weeks into having the catheter placed. My new "normal" happened on October 7th and it took me a good month to get over my funk.
All everyone told me was how good I would feel once I started dialysis but no one mentioned first I would feel like crap; at the beginning having to get used to the catheter and then getting used to dialysis and all the changes that happened to my body. I felt I lost all control over my life.
Now, almost six weeks in, I do feel physically better and now that I have a routine, it's ok. But I think it's normal to mourn what you will no longer have anymore. The trick is to not wallow in it and then it become an obsession.
I tried to keep how I was feeling from everyone but once I started talking, it helped to get it out. I did cry a lot but that is thankfully over.
My prayers will be with you. Take care.
Effie
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Goofy,
I completely understand how you feel. I am pre-dialysis too and the thought of the day when I actually begin dialysis scares me silly.
On the other hand, I have been paying attention to your posts regarding your thoughts about starting dialysis, and I want you to know that you have been an inspiration to me. You are a brave woman to make the big jump and I wish you well. My thoughts are with you as you begin this new stage of your life. I'm sure your family will be very supportive and forever loving.
Couldn't have said my thoughts better than this.
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Safe journey are my wishes while you struggle with this stage.
Narrowing my attention to things previously taken for granted helps me. Sunrise. Cold at midnight. Questions raised by little ones. And a little advice given to me by my sister, "don't dwell on what you lost but enjoy all the things that you have."
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Goofy,
Your life is not over, and in fact your new life will just start tomorrow. You will need a little time play with your new "toys" each day, but it payoffs. I am sure you will feel better with PD. More importantly you can almost eat whatever you like. The new energy from PD will be sure appreciated by your family.
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Goofy, some years back, maybe 50 or 60, there was no treatment
at all for ESRD. People just died. Then came the D machine, but there weren't enough machines for everyone, so each D place had a panel who decided who got the treatment. Old people (like me) and
people with other health problems were s--- out of luck. The younger, healthier ones got the treatment and the others passed on to glory. Finally the govt stepped in and provided enough machines so everyone had a chance to live. So now those of us with ESRD have a choice to either live or pass on. About 99% of us choose to live although it will be a life changing event. Try looking at it as a life saving event, not a my life is over event. Try looking at it as my life will be different, but I will be alive. It will be a period of adjustment, but hopefully it will become a blessing to you. I'm praying that this time next year you will be glad you made the choice you did. Hang in there girl, you're going to be All Right.
Prayers and Cares to you.
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Goofy, life may not be the same on dialysis. But it can still be pretty good.
There's plenty worse things to be going through, that i don't have to mention.
Just have a look around at the hospital.
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Safe journey are my wishes while you struggle with this stage.
Narrowing my attention to things previously taken for granted helps me. Sunrise. Cold at midnight. Questions raised by little ones. And a little advice given to me by my sister, "don't dwell on what you lost but enjoy all the things that you have."
great advice there! That's the way I try to live my life. Yep stuff I can't do anymore and that sucks.. maybe someday I will be able to again, but for now there's still heaps I can do and I do my best to do them :)
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Thoughts and prayers for you, I hope things get better!
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Of course you are afraid - that's normal.
When I first started dialysis 2-1/2 years ago, I was determined that dialysis wasn't going to run my life, I was going to fit dialysis into my life. It's been quite the challenge to maintain that philosophy, but with the help of my husband and kids, we have pretty much kept to that goal. Of course, I can't do as much as I used to, but I certainly try to do those things that are important to me. We've made sacrifices, but I try to focus on my priorities, and accept those things that I just have to let go. I still work full time, we still go on vacations, and with doing dialysis at home, have been able to work out my own schedule.
From the beginning, we've kept our senses of humor. I think that's key. For instance, when I first was in clinic - my hubby put together a clinic comfort kit for me - and included sheets, blanket, portable CD player, etc - but everything was yellow. He wanted everything to be the color of urine - a motivator, of sorts. I still chuckle when I think of it. The ability to laugh or smile through it all has been a tremendous source of strength.
I wish you smiles. Good Luck!
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Goofey, you will be absolutely fine when you get into the swing of it. I didn't mean swing your catheter around. The thing is you have excepted that you need this, you will have some crap days and you will have many good days. My husband thinks PD is far better than hemo, it is more gentler on your system. To-day he has started on PD again after 4 months on hemo he is jumping up and down, bless him. Dont forget we are all here for you ask any question ,you will get an answer. Thinking about you.
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I am one of the people who did not have any time to prepare. I also had no time to lament over it. I don't know which is worse. They both suck for different reasons. I have been on dialysis since March and I really can't tell you how I feel about it. First, I am thankful for it because we all know the alternative. I do in center. I hate sitting there hooked up for 3 1/2 hours. 9 months later it is starting to sink in that this is my new life and I am accepting it more and more. Any operation is scary. You will be in my thoughts and prayers tomorrow.
Marc
I been doing this dialysis stuff for 11 years now. Still feel the same way!
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I was so pleased to find this post. You guys are great with your support, it brought tears to my eyes. I sure wish my husband would read this stuff. Alas he is a man, as was posted before -- they do not listen and they never learn. So...
Anyway...off topic. The point is the support you all gave here was heartening.
And I'm rooting for you too! :clap;
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I kind of feel like your life is over too.
But a new one is beginning. It will be different than your old life, but no less precious. And you'd better p*cking appreciate it. Because a lot of people are working hard to make it happen. Make it possible for you to live a few more years. Smell a few more roses, see a few more autumn leaf changes, gaze at a few more beautiful sunsets. A lot of people, not the least of which is YOU. So yes it will be a hard battle. But you will win it. Every day you are alive you'll be winning it, and the hardest battles are the most satisfying to win.
When you have questions, or just want to rant, we'll be here for you. Because you're worth it.
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See there goofy. It wasn't. I've ready recent posts in other threads and happy to say that in this one YOU WERE WRONG.