New Member Intro, Hello Y'all: I was... - Kidney Disease

Kidney Disease
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New Member Intro, Hello Y'all

flanderscycling
flanderscycling

I was diagnosed with kidney disease in July 2017 after I was hospitalized due to extreme fatigue, fevers, chills, and night sweats that lasted several days. My GFR was down to 22 but over 6 days it stabilized in the low 30s. I've been receiving treatment for over 2 years now and I've been relatively stable at stage 3 after making several diet and lifestyle changes as well as taking my prescribed medication. It's been hard to connect with others since my lifestyle has completely changed and the medication I'm taking to treat my disorder leaves me extremely fatigued. I've met a few others with kidney disease but some seem to resent me since I still have functioning kidneys and I'm not on dialysis. I hope the online community is more understanding. Hope to hear from you guys and I'll be checking the boards regularly.

20 Replies
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Hello! You've definitely come to the right place for support! You'll find people from any stage: stage 2-5, pre dialysis, on dialysis, pre- transplant and post! I started on this group a few years ago when I was stage 3/4 and I'm post transplant now :) welcome to the forum!

Thanks for the support and the warm welcome. I'm already feeling much better since I've had trouble connecting with others going through similar things that I've been experiencing the last several years.

First, welcome to the forum. Second, we’re all at different points in our treatment journeys so I can assure you, you will be welcomed to the forum regardless of whether you are currently on dialysis or not:)

It’s good that your renal function is currently essentially stable. It sounds like you are in Stage IIIb at this point. Hopefully your kidneys will stabilize at this stage for several years.

Jayhawker

Thanks for your kind words.

Hi and welcome to the community,

When I was finally diagnosed with CKD, also in the summer of 2017, I found out about a free, 90-minute Kidney Smart class. I met some folks at the class and since the class is held in my area we've gotten to know each other. Check out the davita.com website and register for the class in your area. A few from the group I met get together at a local park and share information on the first Saturday of each month. During wet or cold weather we use a meeting room at the parks Visitor Center.

It sounds like you have done the right things so far by diet and lifestyle changes. Are there any other health issues that you are dealing with that may be impacting your energy level?

You'll find a lot of knowledgeable folks here willing to share here without judgment.

I'll definitely be looking into davita. I wasn't sure if their services are only for members only. I'm not sure if there are any other underlying health issues that are leading to my low energy. I've gone through periods of depression and I've had chronic pain that causes me to wake up several times per night that is unrelated to my kidney disorder.

Welcome you will really learn a lot from others with CKD. I am stage 3 I too go through ups and downs like yourself. Just keep eating healthy food and light exercize lots of water! I feel like I push myself everyday. It helps to know that at least I'm doing something to help this disease. Good luck on your journey.

What kind of chronic pain? Do you have a Nephrologist? I would let a doctor know about your chronic pain. Pain is your body reacting to a problem. When I was diagnosed in stage 4/5, i had all kinds of joint pain and leg cramps. I have since had two hip replacements and feel much better. CKD brings with it many symptoms, including depression, fatigue, and low energy that changes your ability to do things you used to do. Be kind to yourself and understand these symptoms can be addressed over time. Get extra rest!

WYOAnne
WYOAnneNKF Ambassador in reply to flanderscycling

Welcome to this great group of people! Mr_Kidney is a great source of info for you. I am approaching 20 years post transplant and a lot of things have changed, would you believe in the last 20 years...thank goodness. There are many on this site that have changed their diet and are now stable with their GFR and creatinine.

I wish you the very best and prayers!

Bassetmommer
BassetmommerNKF Ambassador

HI Flanderscycling,

Changing your lifestyle for health is hard. You should be proud of your self. It is work. If the people you associate with do not get, its because unless you are in the fight, you can't understand completely.

We all change, disease not with standing. As I have aged, I have found that the true friends are the ones who are flexible with my changes and support them. I may not have as many friends as I did when I was younger, but those I have are worth their weight in gold.

Someone who resents you because you have your kidneys is not a friend. Let them go.

We are here for you.

Very true. I've found that people I thought were my best friends for years have ignored and or avoided me since I was diagnosed. I'm glad I still have a few friends that are better human beings that continue to support me.

I think many people do not know what to say to a person with such a serious disease. Were the ex-friends part of a group that now does not fit into your lifestyle changes? I had to quit work, and I found that many of my "friends" were related to my work-a-day world. They just fell to the wayside because I stopped working. Be kind to yourself. It it the issues of your friends that they no longer feel comfortable around you...and that is THEIR issue. Try not to take it personally.

Some friends I've known since elementary school and others since high school that I hung out regularly with until my diagnosis. Then most of them seemed to just fade away. I suppose it was the lifestyle change

Thanks for the warm welcome and the words of encouragement. I'll look into Davita to try and connect with more kidney patients in person.

Bet117
Bet117NKF Ambassador

Hi flanderscycling,

Welcome! You have most definitely found home here.

Great group of knowledgeable, positive people whose goal is to share and support.

As several members have noted, we all have different kidney issues and are in different places in our journeys to the best health that we can have.

We share the common goal to eat healthily, exercise when we can, find a great and communicatative medical team, share ideas and help when we can.

We hear your feelings and when you reach out, I promise that one or more of us will always reach back.

Continue to do the great work that you have to take care of yourself. You are on the right track!

Looking forward to sharing, learning and going forward with you.

Bet

This is a great group. I was diagnosed in Nov. of 17, and have learned so much.

Good for you. Keep those kidneys working as long as you can and be happy with your success. I think you will find that those of us on dialysis are happy for you.

Welcome, I too have learned a lot from this group. I currently have an EGR of 48. PCP will re-evaluate in January when I have labs. I’ve changed my eating habits, and am trying everything I can to make my numbers go up. Creatinine and BUN numbers are good. I also learned a lot on Davita from the online class. Best of luck to you.

WYOAnne
WYOAnneNKF Ambassador

Welcome to this wonderful site! We are all here for you, sharing our "Kidney Journey's."

I think we have all found that our friends and other's have a hard time understanding what we are going through. There is no outward signs, unless you are on dialysis. I had friends that said I was becoming a "hypochondriac" because I was so self-absorbed.

I am now living strong at 19+ years post transplant!!

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