I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Athena on September 18, 2015, 06:46:53 AM
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Hi everyone, hope you're doing well.
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Mantaing a positive attitude while dealing with ESRD is difficult but it's doable. First, only a complete moron would choose this as a life style, I found. My self seriously depressed when I first started Dialysis. The never ending struggle with this disease would depress a saint. However I have been doing better by concentrating on positives. First I didn't choose this, I was unlucky enough as a child to have every disease that contributes to kidney failure. So I was selected for this at a early age. Second I deal with this a week at a time. Every Friday I celebrate completing a weeks worth of dialysis. Finally I stopped obsessing about my labs, if they show a problem I take steps to improve them, but to a large extent they are what they are. I do the best I can and the rest belongs to fate. I am a dialysis patient I can live with that, since there is no way to undo the reality. However the future holds many changes that will improve the life of patients. I am not transplant eligible but the science is in place that in the foreseeable future new treatments will be coming on line.
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Dehydration can greatly affect your lab results. With your GFR, it's unlikely that you have fluid restrictions, so drink up!
While depression might not be caused by kidney disease at this point, I think it can be caused by having *any* chronic disease. You're still trying to adapt to a new future and it's hard. It's a grieving process of letting go of what was while not knowing what your future really looks like. It sounds like you spend a lot of time thinking about it and this will only make you feel worse.
How do you spend your days? During my decline in renal function, I decided I was going to do everything I wanted to do that I might not be able to do later, and I was going to be as healthy otherwise as possible going into ESRD to make sure I would be successful and have as good as possible, healthy as possible life either on dialysis or with a transplant. In the end, I was too busy living to worry about the future, and when my kidneys actually reached the point of failure and I started dialysis, I still felt alive and healthy, and found I was able to continue living my normal life. Some things even improved. I was able to use my "dialysis card" to keep my crazy neighbor lady at bay: "Sorry, I can't see you. I have to go home to hook up." and I was able to work from home full-time instead of driving into the office: "If I don't work from home, I'll have to reduce my work hours."
Use anti-depressants if you need them. They were created for a reason. Many people have changes in their chemistry and brains that make it difficult to cope in any other way. The medications normalize these changes. Don't feel badly about yourself if you need them. You're treating a physical disease with them. However, if you think this is just a "funk" from worrying too much though, try first to get out and live and see if that helps. Maybe you could talk to the psychologist once or twice before making a decision. Either way, if you start them, you can always ask to stop taking them, and if you decide to wait, you can always ask for them again later.
As to the "snub," if he was really interested, he would have continued the conversation after you apologized. He was probably just being polite. Maybe you could approach them instead? Then there's no question of whether they're trying to chat you up.
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How do you spend your days? During my decline in renal function, I decided I was going to do everything I wanted to do that I might not be able to do later, and I was going to be as healthy otherwise as possible going into ESRD to make sure I would be successful and have as good as possible, healthy as possible life either on dialysis or with a transplant. In the end, I was too busy living to worry about the future, and when my kidneys actually reached the point of failure and I started dialysis, I still felt alive and healthy, and found I was able to continue living my normal life. Some things even improved. I was able to use my "dialysis card" to keep my crazy neighbor lady at bay: "Sorry, I can't see you. I have to go home to hook up." and I was able to work from home full-time instead of driving into the office: "If I don't work from home, I'll have to reduce my work hours."
Deanne, that sounds just great that you were feeling so healthy and alive when you were in ESRD however that does not seem to be consistent with the reality of what I'm being told and the suffering that I've witnessed when visiting a renal dialysis and transplant centre. For example, my Neph just informed me of ESRD-related cognitive impacts, which is a chemical brain chemistry imbalance brought on by the disease. I know also from direct experience that electrolyte imbalances can also take the wind out of our sails in a powerful way. If ESRD is so easy, then nobody would have a problem with it. It does not seem to be something that people barely notice when it happens to them The stories about fatigue, nausea, itching, pain and general malaise is difficult to ignore.
I try to not spend a lot of time thinking about CKD but I am at an intense information gathering stage because I am close to being screened for a clinical trial. I am being swayed quite strongly by everything medical professionals are saying right. Again, the picture is not rosy coming from them - I've had one woman say to me 'Gosh you're quite advanced now, aren't you?". But even if this was not happening, the dreadful slow waiting game towards ESRD is one that does take its toll on anyone who is aware of what is happening.
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Mantaing a positive attitude while dealing with ESRD is difficult but it's doable. First, only a complete moron would choose this as a life style, I found. My self seriously depressed when I first started Dialysis. The never ending struggle with this disease would depress a saint. However I have been doing better by concentrating on positives. First I didn't choose this, I was unlucky enough as a child to have every disease that contributes to kidney failure. So I was selected for this at a early age. Second I deal with this a week at a time. Every Friday I celebrate completing a weeks worth of dialysis. Finally I stopped obsessing about my labs, if they show a problem I take steps to improve them, but to a large extent they are what they are. I do the best I can and the rest belongs to fate. I am a dialysis patient I can live with that, since there is no way to undo the reality. However the future holds many changes that will improve the life of patients. I am not transplant eligible but the science is in place that in the foreseeable future new treatments will be coming on line.
Thanks Michael. A lot of what you've said is clear hard-won wisdom. I also like to focus on the positives that science may bring us around the corner. And I also take each day and week as it comes. It is a never ending disease and therefore a never-ending battle. The story never quite ends. It helps if one isn't so results-focused (and therefore lab obsessed) like I am. Being a diabetic has made numbers a way of life.
Thanks for your support.
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Why are you depressed by a GFR number of 28? Last time I saw a number that high was a full 5 YEARS before I started dialysis. Don't waste your time feeling sorry for yourself now, leave that for when you actually have a limiting condition!
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Athena, seeing "bad" lab results is probably one of the most depressing things in the world. But your labs look pretty good to me. Egfr is a mere snapshot. It measures filtration rate at one single point in time. As you read this, your egfr might be back to 31. Having normal calcium, K and phosphorus readings are far more important.
You do not have depression because you have decreased kidney function, rather, you are depressed because you have a chronic condition that is not going to measurably improve. Depression in patients with a chronic illness is pretty much a given, and what you describe is sadly common. My personal opinion is that anyone who has been diagnosed with a chronic condition should be given a list of local therapists who might help a patient with building coping mechanisms to deal with the emotional and psychological difficulties that often accompany such diagnoses.
In the 8 years that I wrestled with pre-dialysis, I tried many things. I did not, however, try anti-depressants. Perhaps I should have, but I was on so many meds that I just didn't want to risk adding another. These are the things that helped me:
1. IHD. This forum didn't make me feel so alone in my fears.
2. Letting go of having expectations of other people and realizing that everyone else has their own crap to deal with. They're probably wondering why no one wants to know, just like you are.
3. Keeping busy, both mentally and physically. This is an every day struggle, just as you've come to realize. Just as you are taking care of your body by taking your meds, etc, you need to take care of your mind, too. Just about every study on the planet supports the idea that exercise helps with depression. Going out for a daily walk was probably the one thing that helped my mind the most.
4. Having mercy on yourself. Perhaps think twice about participating in this clinical trial since it seems to act as a trigger for your depression. Do you really need to do this to yourself?
5. Not assuming that every story about CKD/ESRD will be relevant to you. My egfr had declined to 14 and my egfr was 3.99 on the day I was transplanted. I never had nausea or itching or edema or even anemia. My biggest struggle was with potassium; I was taking the maximum dosage of sodium bicarb...12 tablets a day...to keep my K under control. Just because you've been told this and that and have witnessed that and this does not mean it will happen to you.
You are in limbo, and that is what is so frustrating. There is so little you can control. You have no idea what your body is doing nor why. It is an incredibly difficult thing to live with, and while we can all give suggestions on how to cope, only you can find what will work for you. There is nothing that you've posted here that we cannot relate to. And you are right...the story never ends. Even with a transplant, there will still be labs and numbers and worry. We all can become results-focused and lab obsessed, but we all do need to learn what these numbers mean AND DO NOT MEAN.
Take care of yourself, and let us know what you think you might be able to do to help you pull out of this funk. Sometimes, I found that just FORCING myself to be positive helped a bit. It was never easy, but it was occasionally necessary. It's a skill, and one needs to practice it. I was never all that good at it, but I did try.
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Why are you depressed by a GFR number of 28? Last time I saw a number that high was a full 5 YEARS before I started dialysis. Don't waste your time feeling sorry for yourself now, leave that for when you actually have a limiting condition!
Of course you are right, but when you suspect you know what is coming, it's scary.
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ignore
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Deanne, that sounds just great that you were feeling so healthy and alive when you were in ESRD however that does not seem to be consistent with the reality of what I'm being told and the suffering that I've witnessed when visiting a renal dialysis and transplant centre. For example, my Neph just informed me of ESRD-related cognitive impacts, which is a chemical brain chemistry imbalance brought on by the disease. I know also from direct experience that electrolyte imbalances can also take the wind out of our sails in a powerful way. If ESRD is so easy, then nobody would have a problem with it. It does not seem to be something that people barely notice when it happens to them The stories about fatigue, nausea, itching, pain and general malaise is difficult to ignore.
I try to not spend a lot of time thinking about CKD but I am at an intense information gathering stage because I am close to being screened for a clinical trial. I am being swayed quite strongly by everything medical professionals are saying right. Again, the picture is not rosy coming from them - I've had one woman say to me 'Gosh you're quite advanced now, aren't you?". But even if this was not happening, the dreadful slow waiting game towards ESRD is one that does take its toll on anyone who is aware of what is happening.
I'm as much a kidney disease patient as you are and therefore, I've likely been told the same things you're being told. I just chose to interpret the messages differently. You're likely a long way from dialysis and it sounds like you're feeling influenced by other peoples' experiences. Why are you visiting dialysis centers at this point? Those patients' experiences aren't necessarily the same as yours will be so it's pointless to look at them and see your guaranteed future. Or if you're going to look at them, look also at people who've lived happy, successful lives on dialysis. What about Zach (a member here) who's happy and healthy after being on dialysis for 33 years? Yes, ESRD does cause cognitive issue, but not until you're close to ESRD. I experienced it. It gets very hard to think clearly.
Your "intense information gathering stage" indicates you probably *are* spending a lot of time thinking about this. Find a way to limit yourself. You don't have to know everything at once. You're stressing yourself out! Like MooseMom said, maybe the clinical trial isn't a good thing for you. Your mental state is harming your health. The woman who said you're quite advanced doesn't necessarily know what she's talking about. Why are you listening to her instead of people who keep telling you that your function is still great? I probably spent close to 10 years with your eGFR.
I know you want a relationship. It isn't kidney disease that's preventing you from having one. You likely present yourself to other people as someone without hope and that's likely scaring people away, not your health. You can turn this around by not even thinking about kidney disease when you meet people. Focus on things you have in common, activities you can enjoy together. Kidney disease is just an "oh, by the way" thing, not the center of a relationship.
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BTW. why do you say "predictable rise in depression?" Who's predicting this? By calling it predictable, you're creating a self-fulfilling prophecy. You're setting yourself up for it.
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Hi Athena! I am sorry you are going through this. When I was at 20% function, my neph told me it was time to start working on a preemptive transplant. No dialysis for me. Unfortunately, during my pre-testing, I found out I had cervical cancer. I spiraled into a depression I had no idea I could experience. I am an upbeat, positive, glass half full kind of girl. I had a radical hysterectomy within 3 weeks of the diagnosis. As I am recovering from surgery, the transplant team calls to tell me I have been put on a two year wait list before being able to start all over again. They scheduled my vein mapping and Fistula surgery. I was so angry and disappointed. So, all at once, I had instant menopause and imminent dialysis. I had an appointment with my neph and blubbered as soon as he asked me how I was. Totally not me. He prescribed me 50mgs of Zoloft once a day. It immediately helped with the angry/ sad/ hopeless feelings and "leveled me out". I have had no side effects. I prefer not to take medication, but in this case it worked well and I continue to take it. Everyone is different, so do what you think is best for you. I will say that I had many cognitive symptoms at your GFR, as well as the itching, malaise, etc. those things all got better when I started D. Best of luck to you! Hang in there!
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Deanne, I wish you had been around when I was pre-D, and I hope Athena listens to you because back then I felt just like Athena does now.
Athena, I so hope that you can avoid wasting years of your life like I did. I have been exactly where you are now; I did the same "intense information gathering", and it was not helpful. I was the most well informed pre-D patient in the history of pre-D patients, and the result was that I lived in a state of almost unrelenting fear for close to a decade. Those have been wasted years, the only advantage being that I can say with all honesty that I know how you feel and that while those feelings are entirely understandable, please do not make the mistake that I made and surrender relatively healthy years over to terror.
In the end, I never even went on dialysis. Not to say that I never will, but I am the personification of worrying about something that didn't even happen. It is one thing to be prepared, but it is another thing to drive yourself into the mists of what feels like insanity.
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Hi Athena! I am sorry you are going through this. When I was at 20% function, my neph told me it was time to start working on a preemptive transplant. No dialysis for me. Unfortunately, during my pre-testing, I found out I had cervical cancer. I spiraled into a depression I had no idea I could experience. I am an upbeat, positive, glass half full kind of girl. I had a radical hysterectomy within 3 weeks of the diagnosis. As I am recovering from surgery, the transplant team calls to tell me I have been put on a two year wait list before being able to start all over again. They scheduled my vein mapping and Fistula surgery. I was so angry and disappointed. So, all at once, I had instant menopause and imminent dialysis. I had an appointment with my neph and blubbered as soon as he asked me how I was. Totally not me. He prescribed me 50mgs of Zoloft once a day. It immediately helped with the angry/ sad/ hopeless feelings and "leveled me out". I have had no side effects. I prefer not to take medication, but in this case it worked well and I continue to take it. Everyone is different, so do what you think is best for you. I will say that I had many cognitive symptoms at your GFR, as well as the itching, malaise, etc. those things all got better when I started D. Best of luck to you! Hang in there!
I am so glad Zoloft works for you! I'm very glad that you told your neph about your emotional state, and that he even asked! I suspect that many of us don't think to talk about our emotional state with our nephs. Anyone who has gone through what you've gone through would feel depressed; I would worry about someone who did not as that would signal denial!
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Deanne, I wish you had been around when I was pre-D, and I hope Athena listens to you because back then I felt just like Athena does now.
I can't say I didn't waste years of my life, either! I just did it at a younger age and finally figured it out in my late 20s. My teenage years were lost to the same worry and depression, only back then, I didn't have resources to learn anything. It was pre-internet, so I worried without information and was sure I'd be dead before I was 30. I didn't have relationships or career goals because, like Athena is probably thinking, I didn't want to "chain" anyone to someone who wouldn't be around for long and while I was around, I'd only be an anchor, and I didn't see a point in making life goals I'd never be able to keep.
I know I sound harsh, but I really don't like to see other people doing what I did. I know I was wrong and I ruined years of my life for nothing.
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Deanne, no, you don't sound harsh at all. You sound like someone who doesn't want to see another life wasted. :cuddle;
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Deanne, I wish you had been around when I was pre-D, and I hope Athena listens to you because back then I felt just like Athena does now.
Athena, I so hope that you can avoid wasting years of your life like I did. I have been exactly where you are now; I did the same "intense information gathering", and it was not helpful. I was the most well informed pre-D patient in the history of pre-D patients, and the result was that I lived in a state of almost unrelenting fear for close to a decade. Those have been wasted years, the only advantage being that I can say with all honesty that I know how you feel and that while those feelings are entirely understandable, please do not make the mistake that I made and surrender relatively healthy years over to terror.
In the end, I never even went on dialysis. Not to say that I never will, but I am the personification of worrying about something that didn't even happen. It is one thing to be prepared, but it is another thing to drive yourself into the mists of what feels like insanity.
I feel the same way. Because I have a genetic kidney disease, I spent a lot of time watching other family members go through dialysis and transplant. Since I was diagnosed with PKD at around 17, it was always in the back of my mind. I went through phases of pretending it wasn't there, to it being the only thing on my mind. At that time there was no internet, so my research came in the form of watching my family suffer, especially my dad. It was painful to visit him while he was doing D because all I could think of was how this was going to be me in a few years. When I started dating my now husband, it was one of the first things I told him so he could run away if he needed to. I am so thankful he didn't - and he was my kidney donor. Right after they isolated the gene for PKD, I found out I was pregnant. I was a wreck. How could I risk giving this awful thing to a child. My Obstetrician wanted me to have the baby's DNA tested so I could abort if it carried the gene. I couldn't do it, and didn't want to know. I guess my point is that all of the worry and fear did nothing to change my outcome. The only person hurt by all of the mental anguish was me. And boy, was I ever hard on myself! In the end, D wasn't awful, my oldest son does have PKD, and I have wasted so much time thinking about it. I wish I could go back and do so many things differently. Kidney disease was my bump in the road, but there are so many others who suffer much more than I ever did or will. I try to be thankful for my time with my new kidney and not obsess over labs, etc., but it is a struggle. One thing I do each night before I go to sleep is count all of the things I am thankful for, and there are many. Everyone has something, this just happens to be mine. Stop researching. Live the life you can, while you can. Don't pass up opportunities thinking you will get to them later. Everyone should try to live that way, but I know it's not as simple as it sounds. All we can do is give it all we have! :cuddle;
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My GFR is 8 and I choose not to do dialysis. The future looks bright!! Check out my you tube videos "no dialysis for me"
Hello Racko,
Please give yourself a chance and try out dialysis.
Dialysis might be better than you think whilst being pre-dialysis...
I do understand where you are coming from and I only can say
that I am very pleased to have started with my dialysis-treatment,
because it gives me a chance to stay alive - and who knows about the future... ?
You seem to take great care of yourself and so do I and I continue my veggie-diet despite dialysis
and, together with the doctors and dialysis-nurses I watch my blood-tests ...
Please think again and please give yourself a chance to carry on living
and please give yourself a chance to try out dialysis-treatment ...
Dialysis is not as bad as it looks whilst being pre-dialysis and expecting (the unknown) dialysis-treatment...
Please take care and best wishes from Kristina. :grouphug;
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Hi Athena! I am sorry you are going through this. When I was at 20% function, my neph told me it was time to start working on a preemptive transplant. No dialysis for me. Unfortunately, during my pre-testing, I found out I had cervical cancer. I spiraled into a depression I had no idea I could experience. I am an upbeat, positive, glass half full kind of girl. I had a radical hysterectomy within 3 weeks of the diagnosis. As I am recovering from surgery, the transplant team calls to tell me I have been put on a two year wait list before being able to start all over again. They scheduled my vein mapping and Fistula surgery. I was so angry and disappointed. So, all at once, I had instant menopause and imminent dialysis. I had an appointment with my neph and blubbered as soon as he asked me how I was. Totally not me. He prescribed me 50mgs of Zoloft once a day. It immediately helped with the angry/ sad/ hopeless feelings and "leveled me out". I have had no side effects. I prefer not to take medication, but in this case it worked well and I continue to take it. Everyone is different, so do what you think is best for you. I will say that I had many cognitive symptoms at your GFR, as well as the itching, malaise, etc. those things all got better when I started D. Best of luck to you! Hang in there!
Thanks Angiepkd.
You've sure been through a lot. I really can relate to how you felt at that point when you 'blubbered' about how you were really feeling. When there's been too much trauma happening all at once, it becomes like an involuntary reaction. It kind of happened to me earlier in the year when I got very sick from gyno issues & drug reactions and landed in hospital for a week. I thought I was handing it okay mentally but I didn't know why my Neph thought otherwise at the time. It seems they have a bit of a good eye for this kind of thing. That's helpful to know that antidepressants has helped you and continues to do so. Sometimes we only hear the bad news about this medication and not the good news. It would seem a lot of kidney patients are in fact prescribed this type of medication.
Thanks for your support.
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Athena,
Please take to heart what MooseMom and the others are telling you. Do not waste the time you have at this stage obsessing over your labs and drowning in a sea of online information about kidney disease. If you do, you will regret it down the road. Yes, become an informed patient and take an active role in your treatment. Yes, keep a close eye on your lab results and do everything you can to stay as healthy as possible. But please find a way to live your life in the meantime. The depression is quite normal as it sinks in that you have a progressive chronic illness. Get some counseling and don't be afraid to try antidepressants. Some are safe for kidney patients. Exercise helps a lot, as does getting out of the house and around people more.
I checked my records and it has been five years since my GFR was at 28%. I am still a long way from dialysis and I actually feel better now than I did five years ago because my anemia is under control now and I've lost weight and gained stamina. I just got back from a once-in-a-lifetime weeklong camping trip at a music festival where I lived in a tent for a week. There were people there with much more severe disabilities than I have, but they did not let their limitations stop them from enjoying it. I recently joined the YMCA and do water aerobics and yoga. I started dating again this year after years of being alone and I am enjoying my life and looking forward to the future while I await a transplant. I still work part time from home. I know all the risks, I know the path ahead is fraught with possible complications, but I am determined to go into the surgery having a life that is worth fighting for.
I went through a depression similar to yours at the time of my fistula surgery two years ago. It turned out to be part of a wake-up call that got me to start living again. My GFR has been in the 18-19% range for a couple of years now and has dipped a little to 16%, so I still live with uncertainty about the future. I worked hard to get on two transplant lists, but while I wait I am busy living my life. A failing kidney does not have to mean the end of a meaningful life. I am actually healthier and more active at 16% than I was at 28%. Life is a gift, and I am grateful for every day I feel well enough to enjoy it. The future will be what it will be. Your kidneys may be failing, but your mind and spirit and heart can still live fully.
When I first came here, I was given lots of helpful advice, but the best was to go and live my life and not sit around waiting for my kidneys to fail.
I wish you the best of luck on your journey.
Debbie
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Thank you tigtink for mentioning all these most important points ...
... It does not help to sit around and wait for the inevitable,
when it is already pretty certain that it comes along anyway sooner or later,
especially after we have already been diagnosed with end-stage-kidney-failure...
... Much better to use the remaining time to try an do all the things we always wanted to do... :grouphug;
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Since I was about 40 I was told dialysis was in my future since there was protein in my urine and my creatinine was climbing. Did I get depressed no I didn't why I ignored them, and lived my life. As I got older the warning became more frequent and I still ignored them. Then when I was almost 60 the warning became even more urgent and I consented to get a fistula and then I ignored the whole thing for two more years. Now my nephrologist was seeing me every month and insisting I start dialysis. I still ignored him. He was a unhappy camper about a the whole issue but I was enjoying my life and I had decided I would deal,with the whole thing by ignoring it until I was given a sign by god it was time to start dialysis , the sign I was waiting for was a symptom. When I was almost 62 I got my sign, called the nephrologist and started dialysis. Now I could have been obsessing about the whole thing for about 23 years and instead I lived my life as I wanted to, found a wonderful women got married and absolutely enjoyed my self. ESRD should not dominate your life, with your gfr it could be years before you need to worry. In the mean time your obsessing about your numbers is ruining your current life. My advise is to live for today and enjoy your life, worrying about the out come of your kidney disease is absolutely worthless, watch your diet avoid drugs like Advil that cause kidney damage and stop worrying about things you can't change. One of the patients I met 5 years ago when I had my fistula created has still not started dialysis and it looks like she won't start any time soon. I could have spent the last twenty or so years worrying about my kidneys, would that have changed anything, I think not, instead of worrying I enjoyed my life. My advise is to ignore your lab work, and begin to live. It won't change the outcome but it will make the next bunch of years go by quicker. I should add the only mistake I made was not telling my nephrologist I was waiting for a symptom to tell me it was time, the poor guy actually thought I was waiting for a sign from God.
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I feel the same way. Only I let the doctor worry. I watch my diet, don't take pills that are toxic to the kidneys. I enjoy live as far as I am able.
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She doesn't even have kidney failure. Every week on this its something with her and tbh some of her posts show she's full of shit. I am on dialysis, it's not that bad compared to say cancer or anything. There's some serious whingebags on this site but athena takes the biscuit, she's one of those people who exaggerate their health problems to gain ssympathy and take up time that doctors and specialists should be designating to genuinely sick people. I bet 100% she's unemployed and lazy as p*ck
Is it your opinion that only people on dialysis are allowed to worry and feel sick? Since it bothers you so much, maybe you shouldn't read posts from people who aren't yet on dialysis.
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I would like to point out if I had taken the doctors seriously I would have been in the same boat as the original poster. Fortunate for me I just ignored the warnings. Let me be clear I ignored them until I started to show symptoms , then I imeadiately started dialysis. One of the problem for Athena is that the old adage if the only tool you have is a hammer the only problem you see are nails, if the doctor over sells her lab results, saying you are going to have to go on dialysis, instead of these lab results indicate a kidney problem we will have to keep a eye on cause in the future you may have to start dialysis. I have heard some doctors turn a hangnail into a life or death problem, since none of us know what she has been told attacking her fears is unfair. Far better to point out live your life now don't let the specter of ESRD ruin your life. Kidney failure either now or in the future is never good news and it is important that people just learning about this disease are given the support while they come to terms with it. This board seems to support people with kidney disease not jut people on dialysis.
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Be kind in your responses to one another. I have concerns with some of the responses here and if they continue I will lock the thread.
Do not verbally attack one another anymore. Warnings have been given to members involved by PM.
kitkatz-Admin
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Is it my understanding that doctors get a 'kick back' from scientific agencies to find them candidates to do tests for ESRD patients? This sounds rather dubious. If that is so, doctors can be scaring the bejesus out of patients with their lab results to get them to comply with the trials and make a buck at the same time. That's not right, if I am making the propor assumption. The failure of an organ is a scary thing, whether is has happened or is predicted to happen, and all bets are off when it comes to how one reacts to fear. Education about the subject is a good way to approach grasping the consequences of the problem and coping with it emotionally .
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Okami, even if Athena were merely "seeking attention", so what? Why should that bother you? It takes only a few minutes to read her posts and perhaps write a reply. No one is required to make some life-altering sacrifice to acknowledge her concerns.
I'm not going to start making comparisons between ESRD/dialysis and cancer. Cancer is an umbrella term for a huge variety of maladies. There are certainly cancers that are devastating, but there are many others that are curable. There are walks and runs and all sorts of fund/awareness raisers for cancer, along with groundbreaking research that makes cures for certain previously incurable cancers within our grasp. But there is no cure for ESRD. This is a condition that is barely recognized by the general public. I don't see the NFL wearing a particular color to raise awareness for ESRD. The lack of treatment options and the apparent dearth of research can make being an ESRD patient feel particularly desperate.
We used to have a member whose name I just cannot remember, but I do remember her avatar. It was a photo of her sitting in her car behind the driver's seat. The photo was taken through the windshield. Anyway, she'd been unlucky enough to have had cancer AND ESRD, and she said that in her experience, ESRD and dialysis was far worse. That's something worth thinking about, perhaps.
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I think when a person asks a lot of questions they are being proactive and that is a good thing. I happen to believe that we must be an active participant in our own healthcare. I also think as we search for answers that the whole process can be stressful and sometimes when we experience prolonged stress like that, especially when the answers we seek are for medical reasons, we inevitably experience some level of depression. I think the two go hand-in-hand. Quite understandable. Been there, done that...still doing it!
I hope Athena and anyone else will continue coming here to ask their questions or post their concerns and thoughts. I often find that even when the subject matter doesn't apply to me it is still helpful in some way.
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Why are you depressed by a GFR number of 28? Last time I saw a number that high was a full 5 YEARS before I started dialysis. Don't waste your time feeling sorry for yourself now, leave that for when you actually have a limiting condition!
That's actually a very stupid statement that shows your stupidity about what happens in the pre-dialysis stage. Thank heavens you're not a doctor.
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Deanne, that sounds just great that you were feeling so healthy and alive when you were in ESRD however that does not seem to be consistent with the reality of what I'm being told and the suffering that I've witnessed when visiting a renal dialysis and transplant centre. For example, my Neph just informed me of ESRD-related cognitive impacts, which is a chemical brain chemistry imbalance brought on by the disease. I know also from direct experience that electrolyte imbalances can also take the wind out of our sails in a powerful way. If ESRD is so easy, then nobody would have a problem with it. It does not seem to be something that people barely notice when it happens to them The stories about fatigue, nausea, itching, pain and general malaise is difficult to ignore.
I try to not spend a lot of time thinking about CKD but I am at an intense information gathering stage because I am close to being screened for a clinical trial. I am being swayed quite strongly by everything medical professionals are saying right. Again, the picture is not rosy coming from them - I've had one woman say to me 'Gosh you're quite advanced now, aren't you?". But even if this was not happening, the dreadful slow waiting game towards ESRD is one that does take its toll on anyone who is aware of what is happening.
I'm as much a kidney disease patient as you are and therefore, I've likely been told the same things you're being told. I just chose to interpret the messages differently. You're likely a long way from dialysis and it sounds like you're feeling influenced by other peoples' experiences. Why are you visiting dialysis centers at this point? Those patients' experiences aren't necessarily the same as yours will be so it's pointless to look at them and see your guaranteed future. Or if you're going to look at them, look also at people who've lived happy, successful lives on dialysis. What about Zach (a member here) who's happy and healthy after being on dialysis for 33 years? Yes, ESRD does cause cognitive issue, but not until you're close to ESRD. I experienced it. It gets very hard to think clearly.
Your "intense information gathering stage" indicates you probably *are* spending a lot of time thinking about this. Find a way to limit yourself. You don't have to know everything at once. You're stressing yourself out! Like MooseMom said, maybe the clinical trial isn't a good thing for you. Your mental state is harming your health. The woman who said you're quite advanced doesn't necessarily know what she's talking about. Why are you listening to her instead of people who keep telling you that your function is still great? I probably spent close to 10 years with your eGFR.
I know you want a relationship. It isn't kidney disease that's preventing you from having one. You likely present yourself to other people as someone without hope and that's likely scaring people away, not your health. You can turn this around by not even thinking about kidney disease when you meet people. Focus on things you have in common, activities you can enjoy together. Kidney disease is just an "oh, by the way" thing, not the center of a relationship.
She doesn't even have kidney failure. Every week on this its something with her and tbh some of her posts show she's full of shit. I am on dialysis, it's not that bad compared to say cancer or anything. There's some serious whingebags on this site but athena takes the biscuit, she's one of those people who exaggerate their health problems to gain ssympathy and take up time that doctors and specialists should be designating to genuinely sick people. I bet 100% she's unemployed and lazy as p*ck
I still can't believe that moderators on this forum allow such rude sickening posts like these to stay visible. So here's my reply to the extremely offensive post of Okarmi - you're full of shit. Absolute 100% shit, no matter whether you're on dialysis or not. But since you're a "genuinely sick person" as you say - why on earth do you read posts in the Pre-Dialysis section??? Get out of here!
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I believe the people who run this site placed a warning about negative comments. However please don't let them make you stop coming to this site. ESRD is a trip into the unknown for all of us. There is no wrong response to this disease, we all need to learn how to reach a accomedation with the effects it has on our lives. Personally I found your question enlightiening, the answer I wrote required me to look at my own response to the problem you face, in that introspection I gained much personal knowledge of my own feelings. So I applauded your attempts to question others about ESRD. And I want to thank you for the opportunity to learn about my own feelings, keep,up the good fight and keep seeking the knowledge you need because it helps you and others faceing this future.
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Why are you depressed by a GFR number of 28? Last time I saw a number that high was a full 5 YEARS before I started dialysis. Don't waste your time feeling sorry for yourself now, leave that for when you actually have a limiting condition!
That's actually a very stupid statement that shows your stupidity about what happens in the pre-dialysis stage. Thank heavens you're not a doctor.
Well, that's the difference between you and me. When I see adversity, I find a way to deal with, rather than moan continuously about it online. Life is too short to waste complaining about things that nobody can change. If you are depressed, stop complaining, get up, and DO something until you are no longer depressed.
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Every one is different with dealing with ESRD, judging a response is unfair since every ones circumstances are different, a honest answer how you dealt with the problem is a better response then judging others response.
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Alex C, have you ever considered the possibility that Athena's online "complaining" IS the way she is coping?
I used IHD for that purpose. IHD was my outlet for my fears and terrors. I didn't want to subject my husband to my worries. I'd be awake at 3AM worrying (my mom was on dialysis, so I knew what it meant), and even though my husband asked me to awaken him if I ever needed to talk, not once did I dare, otherwise he'd never have slept! I couldn't talk to my mother who was already ON dialysis and was depressed about it. So what did I do? I came to IHD and spilled my guts, and luckily for me, no one here ever chastised me for it. Everyone was kind and gentle with me, AND they took the time to give me some good advice and to supply me with wise words. Voicing my feelings on IHD allowed me to get on with my real life.
I am truly and deeply saddened that IHD now has members who openly bash and criticize anyone who had come here to air their worries only to be treated with disdain.
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Well, sorry if you feel that way, Moosemom. The way I see it, sometimes excessive "support" can become "enabling", especially on those who seem to embrace their problems rather than deal with them in any useful way. Actually, I'm kind of glad this thread has gone the way it did; It tells me that I'm hardly the only person here who gets annoyed by this. I don't want to go as far as using insulting terminology, but I understand the feelings some posters who did have. I come here looking for answers and ideas, maybe even a little camaraderie, and certain posters tend to dominate threads with their own issues, over and over again. After the tenth or twentieth time, it gets just a bit tiring.
And, before you accuse me of being "insensitive", let me tell you a few things about myself: My kidney malady is hereditary, and I watched my mother go through all the same things 25 years ago. But, rather than give up, she took advantage of the extra down time and started developing new quilting designs, and within a decade was one of the most celebrated art quilters in the country. I still have FORTY of her quilts, my sister and nieces all have dozens more, and she made ALL of them AFTER she started dialysis. In a way, dialysis focused her, and gave her more energy than she had in years.
As for myself, I was unemployed for 9 months after starting dialysis, but I kept on spending at least 2-3 hours a day looking for work, even after going onto disability. I went for at least 3 interviews a week, but didn't give up. I did volunteer work, too. Rather than moan about it, I did what I could, with what I had. I finally found a job, so I'm glad that I didn't just give in to feeling sorry for myself. What the future holds, I don't know, and I'm certainly not going to lose any sleep worrying about it.
As I sit in my clinic right now, looking around, I see several other patients who have been through worse things than I have, but are still going, and are if nothing else, grateful for the ability to keep going with an otherwise fairly normal life. Oh, sure, we all complain from time to time, but we don't let our complaints dominate our lives.
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Alex C, I understand you grew up dealing with the effects of dialysis, this clearly prepared you for the problems caused by ESRD. Not every one grows up with people who have learned to deal with this. Personally I am the only one in my family with this condition, and I don't suffer with the common causes either, no diabetes no high blood pressure, so my condition came out of the blue. Most of the people here are learning to deal with a life changing event in there lives and are trying to learn the lessons you learned from your mother about how to deal with all the baggage dialysis brings. One of the things I have learned is no one but other dialysis patients truly understands what all this does to our lives. So the people who join this site are often looking for the strategies on how to survive this lifestyle. They are depressed and scared, constructive advise, and some emotional support is what they need. Personally the only thing I can relate the fear I felt the first time I went to dialysis is it was as bad as my first day in school when I was 5.
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Well, sorry if you feel that way, Moosemom. The way I see it, sometimes excessive "support" can become "enabling", especially on those who seem to embrace their problems rather than deal with them in any useful way. Actually, I'm kind of glad this thread has gone the way it did; It tells me that I'm hardly the only person here who gets annoyed by this. I don't want to go as far as using insulting terminology, but I understand the feelings some posters who did have. I come here looking for answers and ideas, maybe even a little camaraderie, and certain posters tend to dominate threads with their own issues, over and over again. After the tenth or twentieth time, it gets just a bit tiring.
And, before you accuse me of being "insensitive", let me tell you a few things about myself: My kidney malady is hereditary, and I watched my mother go through all the same things 25 years ago. But, rather than give up, she took advantage of the extra down time and started developing new quilting designs, and within a decade was one of the most celebrated art quilters in the country. I still have FORTY of her quilts, my sister and nieces all have dozens more, and she made ALL of them AFTER she started dialysis. In a way, dialysis focused her, and gave her more energy than she had in years.
As for myself, I was unemployed for 9 months after starting dialysis, but I kept on spending at least 2-3 hours a day looking for work, even after going onto disability. I went for at least 3 interviews a week, but didn't give up. I did volunteer work, too. Rather than moan about it, I did what I could, with what I had. I finally found a job, so I'm glad that I didn't just give in to feeling sorry for myself. What the future holds, I don't know, and I'm certainly not going to lose any sleep worrying about it.
As I sit in my clinic right now, looking around, I see several other patients who have been through worse things than I have, but are still going, and are if nothing else, grateful for the ability to keep going with an otherwise fairly normal life. Oh, sure, we all complain from time to time, but we don't let our complaints dominate our lives.
So you're STILL here trying to champion yourself by denigrating someone else? How PATHETIC! Go and wax lyrical about your heroic struggles in your own thread and get out of mine. I couldn't care less whether you're on dialysis or not - you're a nasty passive-aggressive bully who shouldn't be lurking in the Pre-Dialysis section trying to find people to put down because you don't think they have it as hard as you. Now bugger off.
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In many ways, I feel "lucky" in that I grew up with kidney disease. I've never known anything differently. Since I was 9 years old, I've always known that someday my kidneys would fail.
I can't imagine the shock and horror of learning about this as an adult. You think you're a normal, healthy person and suddenly you learn you have a life-threatening kidney disease. There are no answers about when your kidneys will fail, if you will live through the experience, and what you should do NOW to try to protect your life. You also likely have other people to consider. Children, a husband, aging parents. How will you tell them? How will this affect them? Then there's finances. How will you survive financially? What if you can't work anymore?
I can't begin to imagine the panic such sudden news might cause. There are no cookie-cutter solutions. No way to know how you should react or what you should do. Everyone is thrown into this pool with no answers. You have to struggle through as best you can, so you turn to the Internet. You might grasp at any straw you can find. Hopefully you don't find a snake-oil site and try to order miracle "cures." Hopefully you find your way to a site like this one where others have shared your journey and you can see we're all normal people. We still have mostly normal lives.
It's hurtful to come to a site like this and then find people who criticize and judge you for trying to figure it all out, for being courageous about sharing your fears. Someone else will follow you here, tomorrow, next week, next year... and see the fears you expressed, the things you're trying to do to help yourself. That person will have your same feelings and will want to know she isn't alone. In a few years, you'll be writing posts about how you've come through this difficult place and you're happy and active, dialysis or not. Then that person might have hope, too.
I hope that person doesn't also come across a lot of posts that are judgmental. If I'd seen judgmental posts when I first started reading messages here, I would have moved on. I'm plenty good at criticizing myself. I don't need that kind of help, ever.
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Deanne I think your message summed up what I was trying to say but did it much better. :bow; :bow; :bow;
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Due to this thread becoming an attack on each other thread it is being locked.
THREAD LOCKED-kitkatz-Admin