Newly diagnosed with CKD (Chronic Kidney Disease) and terrified
Hello. I'm looking for some comfort because what I read on the internet about kidney disease is very bad. I had blood in the urine from the glomeruli of the kidneys in 2011 but we monitored it and I was doing very well things were quiet. Now suddenly it started to rise my creatinine and the percentage of my kidneys working is low as my nephrologist told me. I think I'm in stage 3 kidney disease. I'm doing tests all the time and I'm afraid that every time I go for blood tests my creatinine will be more and more up and I can't handle it all.I'm so scared it's progressing fast.I always shudder at illnesses and now something so serious is happening to me,it's a nightmare.I thought I was doing fine,I don't know what this new kidney problem is.Can can someone give me some advice to get courage for my disease? What would you say to someone who has just been diagnosed with kidney disease and is panicking? I am very sad and scared, I feel like my life is over and I am worried about my family how will I leave them .
Interested in more discussions like this? Go to the Kidney & Bladder Support Group.
I started drinking more and eating salty things to raise bp. If that is not enough for you, hydrocortisone is easier on the body than prednisone I believe and can be given in very small doses.
my GFR is very fluctuating too, but now it is around 35 for over a month
I am very concerned, how is your GFR flucuating, i dont know this is temporarily.
My doctor dont say anything about diet either. Which supplement do we have to avoid?
maybe the flucuating coming from supplment?
My GFR got improved after I drank a lot of water before the blood draw. The doctor told me not to take any supplements, but there are people here who know a lot more about this than I do.
Hello,
It’s normal to feel scared and that your life is over, when you get shocking news and you see things changing.
Something I found that helped me was to write down any question you have for the doctor. I also made a point of getting to know my nephrologist well. So I felt comfortable talking to him about my kidney health. Also journaling can be very helpful as well.
I lived 10 years without having to do much with my kidneys other than blood and urine tests. I started reading on how to eat. What to avoid and what to have more of. My doctor is a graphs doctor. So unless it was a continuous change we just kept doing what we were.
A year ago I was told it was time to go on dialysis. I was so scared. He told me there were no chairs available in our are and I’d have to travel for a chair, but he wanted me to do peritoneal home dialysis. Talk about being scared. It was such a emotional time..
I now have an amazing care team. I’ve been trained how to do the home dialysis. I do it every night while I sleep. I feel so much better. It’s not hard to do and it isn’t that much of a disruption. I’m able to travel and do all the things I did before. I still have to watch what I eat. Which is better for me anyway. I’m trying to lose weight to eventually get on a transplant list.
For me rather than letting it scare me, I’ve just taken control and have become an advocate for myself. My husband, daughter and mom will go with me to the doctor to help get all questions answered. Stuff I don’t think of. I have many others who are part of my support system..
Take one day at a time and talk about things and ask a million questions. Answers are scary but knowledge is power!!
Hope that helps!! Blessings to you.. I’ll keep you in my prayers!!
Lisa
@lisa2013 Welcome to Mayo Clinic Connect! Yep, you have underlined the importance of having a great support team around you. Not only the medical professionals, but your family and family-of-choice. It's a comfort to each of us when we know there is someone who has "our back" and is supporting us.
Ginger
What would I say to someone newly diagnosed...
And scared ...??
That being scared and overwhelmed is a normal reaction. It is scary.
But also ... that you've got this !
It doesn't mean its always going to feel this way.
Over the years , I've learned that kidneys can respond to a lot of things and being cognizant of how yours respond is something you can learn. Function can bounce around a little depending on your fluid intake, exercise levrl, other health issues and even diet.
It's about monitoring it , drinking adequate water, limiting caffeine and sodas, no nsaids ( e.aspirin, motrin,ibuprofen), healthy diet with limited sodium, limited highly processed foods etc. Get good sleep and reduce stress by doing things you enjoy, being in nature . Also I would write down all your questions so you can ask them at the next appt you have.
Do you have someone you can talk to about this? A good friend, faith leader, therapist or even the Chaplain from your hospital? That can really help you process your emotions and fear.
I had a busy morning and didn't have time to drink more than 4 oz water. My GFR went from 52 two weeks ago to 40. Just dehydration apparently.
Dehydration definitely affects our kidneys. If it's a habit yo get to busy to drink you may have to figure out ways to remind yourself.
I now have a water bottle with me at all times, which was hard to adjust to at first but really is a habit now. It totally changed my hydration .
I'd say don't panic. You can't think when you panic. If you don't have a kidney Doctor, get one. And if you don't have a dietician that specializes in CKD, get one. Knowledge is power. There is a CKD Webinar going on this week sponsored by American Kidney Fund. Log on to their website, sign up for webinar. In the chat, you can ask questions and watch what talks that were given yesterday. Really hope this helps you out. I'm dealing with trying to stay calm as I navigate learning I'm stage 2 CKD. In process of finding Kidney Dr and dietician myself.
@lbrockme - I also take water everywhere with me. It helps to stay hydrated, and an additional advantage is that I don't stop somewhere for a soda!
Since I've been retired and spend more time at home, I keep a pitcher of water on my kitchen counter where I can see it. It is my reminder to take a drink. My goal is to have the pitcher empty by end of day. This has worked well for me for the past 15 years with my transplant.