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."
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.
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!
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.
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!
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.
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.
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"
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