Welcome - there is no end of things to read. I think this book from the Medical Education Institute is a great resource Help I need DialysisThey also operate Kidney School web site and Home Dialysis Central. So yeah, lots to read ... not to mention the 454,448 Posts in 27,705 Topics by 8028 Members here on IHD.
SKG, make it easier on yourself and first look over the three resources cited by Bill Peckham. I have been obsessing over renal issues for 9 years now, and I can promise that those sources are the very best for a newly diagnosed renal patient who may be facing dialysis. Since you are a Ph.D, a computer expert and you love to read, I can see you finding all kinds of awful stuff about renal disease/failure. It will scare you stupid, I can virtually guarantee, so edit what you read. All of the info you find online will not apply to you. Read through all of the thousands of my posts, and you will see what I mean. I am/have been what you do not want to become! LOL!
skgThere is always room for another member eager to learn. I also cope with stress through research, so I get that. Know thy enemy and all that. Coolest job in the world is in computer games? We may have to agree to disagree on that one. Congrats on the non-existent retinopathy. You sound like you've got the attitude to get you through whatever the future has in store for you. Your decline is not slow, but not especially rapid, either. GFR 19 is just on the border of full-on renal failure and it could stay right where it is for years and years or things could unexpectedly improve or you could be starting dialysis imminently. Usually, it's impossible to predict. Exciting, huh? I look forward to reading more of your delightful posts.
Welcome, skg! With all your reading I hope you are aware that foggy brain will probably creep up on you before you get to start dialysis. In your line of work, foggy brain would not be the most desirable acquisition. It goes away with dialysis - at least mine did with a vengeance. If it happens to you - don't panic.Once again - welcome
So what is the coolest job in the world then? (not sure I'll agree, but I want to hear about other candidates!)
And the "impossible to predict" is starting to sink in. What I've most wanted to know is what's going to happen and when. And I suppose why, as well. I've learned lots about the what, and diabetes&hypertension seem to cover the why fairly well.
But I'm still doing a little bit of grasping at straws -- maybe there is some cause that I can do something about. I know my GFR decline isn't especially rapid in general - but it seems so for the descriptions of CKD/DKD. So maybe there is something else going on that could still be fixed? Probably not, but even if there isn't, it seems like the more I can understand exactly what is happening to me, the better I'm going to be able to deal with it. Does that make sense?
Please do not read all 7000 of my posts. That was supposed to be a joke.
... And please be mindful of the fact that people come onto this site to vent and to describe problems. I think Henry P is the only one who regularly extols the virtues of dialysis, and thank God for that, otherwise we'd all be in a funk!
Good dialysis will help you deal with "brain fog". The one salient fact that you should come away with after reading through all of these resources is that more frequent dialysis will keep you in better health. And when you think about it, it makes sense. Normal kidneys work every second of every day. If your kidneys are no longer functioning, and if you are on dialysis for only 3-4 hours, three days a week, well, imagine only being able to urinate 3-4 hours, three days a week. Do the math.
One last thing about "brain fog". Many people find dialysis overwhelming. Not only do people have to cope with illness and being on a machine, but they also have to deal with a system that is for-profit and that is rarely "patient centered" as a result of the profit motive. Many find their clinics to be wonderful and the nurses/techs to be lovely and helpful. But many clinics are not so well run, and patients have to cope with THAT on top of everything else. No wonder so many dialysis patients experience brain fog; not only are they not getting adequate dialysis, but their brains are filled with of the other bureaucratic crap. Imagine having to deal with Medicare stuff on top of everything else!
The only way you will get more dialysis if you are here in the US is to do it yourself, at home. It sounds like you are generally healthy enough to do that, so explore that option first. The Home Dialysis link that Bill gave you is a great start. One awful aspect of chronic illness is the realization that you've lost so much control over your life and your body. Take as much control as you can. Home dialysis can help you do that. If, after careful consideration, you do not feel home dialysis is for you, that's OK. You can always change your mind.Diabetes and hypertension are the two most common causes of renal failure. If you want to protect and preserve the renal function you have left, it makes sense to control those two conditions. Are your diabetes and bp under control?Have you yet consulted with a renal dietician? With an egfr of 19, it is imperative that you do so. Make this your priority, now. You will be surprised by how many "healthy" foods are injurious to people with severe CKD/ESRD.
We are here to help. Please feel free to ask any questions. The people on this site are experienced, informative, compassionate and eager to assist. Welcome to our community.
Quote from: skg on April 10, 2013, 09:21:51 AMSo what is the coolest job in the world then? (not sure I'll agree, but I want to hear about other candidates!)Why, social science researcher of course!(I would have also accepted "vineyard owner" or "playwright".)
Ask my husband and he would probably say "fast, expensive car tester" (which is a small part of his job). Or we could consult my son (age 10) and he would probably say "football midfielder who is occasionally called upon to demonstrate paragliding technique". And finally, there is my other son (age 6) and he would undoubtedly respond "street dancing animal rescuer". So, you've got some options. (And I have to admit, your profession would place second in a photo finish with either of my children, and quite possibly my husband!)
I remember in preparing for kidney failure the second time that it was all a great big puzzle and I did not know where to start. First question to consider: transplant, yes or no? If no, then that is a whole other learning curve that you won't be on and you can put your energies elsewhere. If yes, you are below GFR 20, start the listing process.
In terms of preparing for dialysis, which you will need to do at this point whether you also go for a transplant or not, pick your modality (PD or hemo) and then you will know where to go from there. As for the exact moment that you will either need dialysis or transplant, that is the great unknown in this. I was told dialysis can wait to be initiated until my GFR went below 10 (it never did) or until I just felt awful. So, really, much of this is down to you determining if you feel bad enough to start or not. It doesn't sound like you do at the moment, so that's great.
Quote from: cariad on April 10, 2013, 05:58:52 PMQuote from: skg on April 10, 2013, 09:21:51 AMSo what is the coolest job in the world then? (not sure I'll agree, but I want to hear about other candidates!)Why, social science researcher of course!(I would have also accepted "vineyard owner" or "playwright".)Ah. I can see that. But the social science research option would depend on what the research topic was though. So ... ?
Hoping for a pre-emptive transplant. But won't know until lots of screening tests are done. Got a packet from one of the two nearby transplant centers today. How on earth do you choose between centers?
Potassium ... phosphorus ...In none of your postings have I seen mention of either of these two minerals, and this worries me.I apologize if you already know all of this!
...Oh, I like the heavy stuff to be sure. Right now I have a major decision to make - continue toward my Ph.D by studying members of this very population (people in organ failure seeking transplant, as one prof stated, I'm the ultimate insider) or skip the myriad hassles of academia and just write a book that no one will read on that same topic, or do what I'm doing now and just spend all my time dealing with the everyday minutiae of life and let time slip away from me. I have been involved in various projects, none of them light, and I guess I like it that way. I love analyzing cultures, would love to study populations in Africa. Ethical considerations aside, one of my favourites is the Milgram study. It taught us so much about people's response to authority, but you'd never be able to conduct those studies now. (Probably not a bad thing.)
Quote from: skg on April 11, 2013, 11:24:00 PMHoping for a pre-emptive transplant. But won't know until lots of screening tests are done. Got a packet from one of the two nearby transplant centers today. How on earth do you choose between centers? I really, really, REALLY want to answer this question but I don't want to get into it in the Intro forum since we're really not supposed to. Would you mind creating a new topic in the transplant section?
...'Yuck' is an enormous understatement when it comes to colonoscopies.... and having to be anywhere at all by 7AM! Best of luck with it!