My latest lab results and a predictable rise in depression!

[kitkatz]

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

[casper2636]

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 .

[MooseMom]

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.

[PrimeTimer]

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.   

[Athena]

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.

[Athena]

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!

[Michael Murphy]

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.

[Alex C.]

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.

[Michael Murphy]

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.

[MooseMom]

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.

[Alex C.]

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.

[Michael Murphy]

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.

[Athena]

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.

[Deanne]

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.

[Michael Murphy]

Deanne I think your message summed up what I was trying to say but did it much better.

[kitkatz]

Due to this thread becoming an attack on each other thread it is being locked.


THREAD LOCKED-kitkatz-Admin