After 22 years with my transplant and 5 years on stage 3 now just recently at stage 4 really worried terrified!!!

[jennifer24]

Hi everyone hope you guys are well. Well I'm really worried have mix emotions after 22 years and 5 years on ckd stage 3 I'm recently reach stage 4 . I feel hopeless my gfr was at 28i. Two months at 21 my dr was shocked he was sure it will go back up. Ever since I change jobs where I work at is busy I'm a phlebotomist at times I don't get to eat especially Fridays only fruits or nothing and hardly get to drink water. The dr thinks is a possibility thar it when down because I'm not drinking enough water or eating enough. I feel so sad his already talking about dialysis I have to go back in two weeks to check and I already gave my two weeks notice at my job. My health is my priority but I like my job . I have no regrets leaving either I was vocal about my transplant and how that office was so busy but they told me they will help and never did . Do any of you guys have any advice plz if ur on stage 4 how u manage what u eat and if I still have hope for my gfr to go up. I would really appreciate. Thank you

[Transplant2018]

Your labs will look worse if you are dehydrated. As busy as you are at work, keep a water bottle nearby and try to drink at least 3 liters of water a day.

[jennifer24 in reply to Transplant2018]

Yes and I ask the dr if it could be that and he said that he doesn't think so but im trying my best to drink at least 7 bottle a day

[Eyak1971]

Find someone to hug. You need someone and time to process. We all know what we should do but our lives are sometimes too hectic, and unless you have gone through it, you really do not know. We all know there may be a time we will be put in a position that the choice will not be ours. But unlike other diseases, we do have a choice. Limited as it is. Take time to grieve and cry, and then really evaluate where you are. Talk with your doctor. Take care and know we may not have all the answers but we are thinking of you.

[jennifer24 in reply to Eyak1971]

Thank you so much

[Oceansideup]

Sending hugs! There’s no way to predict what your gfr will be until you get your labs again. We are all are hoping you get labs that will give you some reassurance. I think it is possible for it to stabilize for a period of time but of course, everyone is different. Talk with your doc about exactly how/when a dialysis decision would be determined so you have more of a timeline of what is possible. As far as eating, maybe eating small amounts more often rather than an entire meal at once would help? You are likely already doing this tho. Either way, uncertainty about the future is always a little less scary when you reach out to your support network. I know friends and family made a big difference when I got to stage 4. Hang in there and let us know how things go.

[jennifer24 in reply to Oceansideup]

Thank you soo much keeping my hope up and doin everything I can to see if the next labs will be better

[ShyeLoverDoctor]

Were you ever on dialysis before you got your transplant? I’m sorry I am a bit confused. I had chronic kidney disease a long’time. Stage 2 for about eight years, Stage 3 for about two years. Then stage 4 for about two years. I truly though there was going to be no life after dialysis. I kept asking, Will I ever need dialysis? He said, In your lifetime? I couldn’t say. Like I couldn’t imagine having dialysis.. My doctor said don’t lose hope. But after a couple months of decline, he said, Let’s not kid ourselves dialysis is not far off. I was on dialysis for 11 months and 3 weeks before getting a transplant. Dialysis is horrible, but it will keep you alive. Learn about the difference between hemodialysis and peritoneal dialysis and home hemodialyis. Everyone (mostly) says peritoneal dialysis lets you have more energy, but you have to do it every night and have a ton of supplies at your home. The doctors will tell you it doesn’t hurt but many patients say it does. In center hemodialysis, you go to a center, they do it, then you go home. I am being totally honest - dialysis destroyed the quality of my life. I’d leave for the center at 7:45 AM, get back home about 12:45, eat lunch, and I would be no good for the rest of the day. I couldn’t do anything, maybe run one errand, I was so exhausted. Three whole mornings just gone, because I was at the center, and then the exhaustion. I had to quit my job. I don’t know how some people manage. When you go to a dialysis center you are assigned a shift, and it never changes. I was on Mon Wed Fri second shift. For first shift you go there about 4 AM, you’re done around 8 AM. Some people do that and then go to work. I can’t imagine it. And yes it’s terrifying watching your GFR dropping and dropping. It’s scary and people don’t understand. It does sound like your donated kidney is failing and there’s not much to be done. However rejection can sometimes be reversed, like you go into the hospital and they give you large doses of steroids etc. But if they’re talking to you about dialysis….I am so sorry. Kidney failure is an awful thing to go through.

[jennifer24]

Yea I have a kidney transplant for 22 years now my dad gave it to me just recently im at stage 4 the dr Said if it keeps dropping they we will talk about dialysis but im scare and terrified before the trasnplant I was on dialysis as a kid it was horrible I still have the scars on my stomach im trying everything I can to help my gfr go up . My blood pressure been high the dr double the dose and I quit my job because the dr notice that ever since I started working there my gfr has decline alot. So I'm still having hop

[SunLoverSunLover]

Hey there,

I just found this group. New to all this … Keep your faith kiddo, take care of you.

I have lost about 20 pounds in the past 10 years for no reason and in the past two years muscle loss. I’m a 61 year old female. Married to an alcoholic and under so much stress with him.

My doctor did a blood test and I guess my GFR came back 83.8 so was sent for urine sample than ultrasound. Guess I will find out Monday on those. Not sure what stage I am at. Any help you can give me will help me on this journey.

My prayers are with you and those going through this.

[jennifer24]

Ur still ok I'm not sure either what stage ur in but at thar stage or gfr I eat whatever wanted I didn't put limitations on just drank lots of water when you get to stage 3 that's when u should start worrying