Hi, I'm new here :): I am a 19 year old girl... - Kidney Disease

Kidney Disease

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Hi, I'm new here :)

purpledoggyy profile image

I am a 19 year old girl with stage 3 of CKD I have had this since I was very little about 3 I belive, I had recently had a doctors visit and next month its looking like I am about to get a "Kidney Evaluation" can anybody tell me what they look for in these? Or has anyone ever gotten one done? I am getting a little overwhelmed and I dont know what I am getting myself into here. It also seems like I will probably be on dialysis this upcoming year.

Ig you can say that I have put my health to the side but now its constant worry maybe because I am older and I didn't understand so much when I was younger, even now I feel like I learn something new about all of this everyday. I know I have support from friends and family but my mindset feels like I am in a battle with myself and I cant de anything to help, I just think I overwhelm myself maybe someone can give me ideas/hobbies to clear my mind? Does anybody feel this way aswell?

13 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Purple, Yes, we all get overwhelmed at times. There is a lot to learn and digest with CKD. This forum is a great place to vent, ask questions and feel our friendship. You are not alone in your fight. I am not sure where you live so you might want to tell us. There are some supports through the National Kidney Foundation, if you live in the states. You say you are at stage3.... which is a ways from needing dialysis. Have you had a referral to a dietician? I do not know what your CKD cause is, but often, changing diet and lifestyle can put off the decline. Give us some more info and hang in there. We are here for you.

Hi Basset, Yes I live in the states and I see a Nutritionist instead of a dietician. The cause of my CKD would be that I had gotten an infection when I was younger. Thank you for taking the time to reply

Bassetmommer and Mr. Kidney are two individuals on this forum with solid advice. Substituting plant protein for animal protein can fend off dialysis. Gee, I hate to think of an individual only 19 with kidney issues. I'm 81, and I had one kidney removed at age 76. Also, go to Dadtv.com for a series of videos from an individual who reversed his condition from Stage 5 to Stage 3. Jen Hernandez is often on Dadtv episodes. She's a renal dietitian I have worked with on-line. Best wishes.

Hi Dixi, I too have had a small piece of kidney removed is what my mom tells me. Thank you I will definitely check the videos out. Thanks for the reply!

Sounds like you have the most common form of kidney disease (90% of total). Caught early, surgeons can remove just the tumor, leaving the rest of the kidney. I'm in the 10% who had to have the entire kidney removed.

WYOAnne profile image
WYOAnneNKF Ambassador

Hi! So, you are going for a kidney evaluation - I take it they are wanting to put you on the transplant list. Most transplant centers want to make sure you are healthy enough for a transplant . They will check out your heart, etc. Usually part of the eval is also to have a mental evaluation. They want to make sure you have the right frame of mind and will be diligent in taking the meds you will need to take after the transplant. Usually they have blood work and urine just to check you out. It usually a week or two before they let you know they are adding you to the UNOS list for a kidney. And then you wait. Depending on your blood type, etc. could be 3-5 years.Take care and we are here for you if you other questions.

purpledoggyy profile image
purpledoggyy in reply to WYOAnne

Hi WYO, I have actually been on a transplant list for years. Also thanks for giving me the details on the evaluation they said it would be a 4 hour appointment so I was curious.Thanks for the reply

Okay, so you say you are at Stage 3 and you believe you will be on dialysis next year. It may be that I'm missing something but were you told that or do you think that? Unless a nephrologist has told you that your kidneys are failing at a rapid rate I don't understand how you will be on dialysis so soon. I was diagnosed at the end of June '17 with a GFR of 32 and my last GFR was 55 and more importantly, I've averaged 53 since the diagnosis. I'm going to assume that the Kidney Evaluation is part of the initial process of getting on the Transplant List. You're 19 and should be looking at that for a long range plan. I'm 69 and have no interest in a transplant. At my age, I can follow my kidney-friendly meal plan, exercise, control my HBP with medications, control my diabetes with the meal plan and exercise and hopefully hold off dialysis for as long as possible. I've learned so much about CKD and dialysis in the past three and a half years that the thought of dialysis no longer scares me. I've done my research and know that I can do HHD and continue with my favored lifestyle.

I'm going to assume that since you've known about this for about 16 years, you and/or your parents have learned all you need to know about CKD and are following a solid, kidney-friendly meal plan, exercise, and have under control any other health conditions that could impact your CKD.

Having said that there are hobbies that are out there for you to explore, but I can't advise you because I don't know your personal likes and dislikes. For me, I like to read. In the beginning I couldn't get into any non-fiction books. I was too consumed with my health issues that I needed some area to escape to. In reading, I found an interest in fiction novels and I've selected about a dozen different authors that I follow and read everything they publish. I also spend a lot of my time birding. My back yard is a certifiend National Wildlife Federation bird habitat.

Because of the pandemic, I've read a tremendous amount this past year, and my backyard is filled with bird feeders, baths, bird houses and ground habitats and a large pond. Find somethings you like to do and investigate them as year round hobbies. I can read all year long and take care of my yard all year long in all types of weather. In doing both of those things I keep my mind off of issues that if I let them, would overpower my thoughts and lead me to places I'd rather not go again. When I received the diagnosis, my reading became all about my health issues and it wasn't until I became proactive did I stop being overwhelmed about my health. Knowledge is Power! I didn't let the doctors tell me what to do and when to do it. I realized that I had the knowledge and ability to make the final decision regarding my health. I only work with the physicians who are willing to be open and honest with me and who will provide me with their best medical advice and then accept my final decision regarding my treatment.

Back to hobbies. I'll assume, again, that you are out of high school and possibly a college student and/or perhaps working. Even though you are young (I have some shoes that are older than you, I think) there was probably some subject you learned about and found interesting. Cooking, collecting something, reading, photography (another one of my hobbies when I travel), sewing, and since it's the season, knitting ugly Christmas sweaters, gardening, both indoors and outdoors, music, both collecting and listening.

I've included a link to an article for hobbies for women today. I hope it's helpful.

goodhousekeeping.com/life/g...

Hi Mr_kidney, The last visit I had with my doctor was last week and before the in person appt I had a couple zoom appt with him and the nutritionist and I had lost 10 pounds and I had told them and they were gtting worried and so before I used to see them every 3 months and now I see them every month which I would assume I would be getting worse since theyd want to see me so soon. I then gained back my 10 pounds in 2 weeks which I did not have no clue as to how I even did it. Then, I go to my appointment and thats when I met the nurse practicioner and had a long talk with my social worker. The doctor had said to me my last 2 appt that he doesnt see me being on dialysis in the next 2 months and it scared me because were are me numbers going to be at. Then the doctor had told me that my red blood cells are low and that I would need to get injections every 2 weeks and yesterday I went to go pick up my medication from the pharmacy and the lady behind the counter was telling me that if the doctor sent these out that would mean that I am getting worse. I actually am in college and I've been working at a nursing home for about 2 years. I was also looking around at things to keep me busy and I have probably read a book or 2 without being "forced" to read any because of school and I was looking into a few genres and so which one I like best. I used to sew with my grandma and I was so inlove as I got older I havnt done it for years but I was definetly that little girl in elementary school and some of middle school sewing on the school bus on my way to school. I may go on amazon and order a few thigs to start my kit again to keep me busy. Thanks for the reply

It sounds like you are on top of your health concerns. If anything else comes up that you want to share or receive support from folks who have been there this is a great site. Have you settled on a modality for dialysis?Best of luck.

Hello!

I'm 23 and 2 years post kidney transplant! I was in a similar spot as you were at 19. It can be so overwhelming with everything. I can assure you that being in stage 3 CKD does not mean you will be on dialysis within a year! I did routine kidney evaluations with my team to make sure that we were doing everything we could to stave off dialysis for as long as possible. I went full dive into collecting cookbooks and exercise routines to stay active and healthy. If you need to talk to someone around your age I am only a message away!

Hi Ladybug, Yea its very stressful I tell my friends whats going on and they have no clue on what I am talking about when I tell them what they told me after my appt. Which is even more "ugh" and just kinda makes me feel so isolated with everyone around me and I live in a small town and its just overall overwhelming. I will definelty take you up on that thanks so much!

Hi Purple I got CKD Stage 3 due to having hypertension after my second child. I can tell you that I lived a normal life for ten years after that. My GFR remained stable at 30%. What I regret is not taking a kidney diet serious at that time. I think if I had I would have definitely pro longed my kidney function for 10 more years. My suggestion would be to get on a kidney diet soon. And try to relax and live your best life! I had my transplant last year and am doing fantastic-I don’t worry anymore as I leave it in Gods hands and just do my part. Don’t stress over this because it can cause hypertension which will cause more damage to your kidney. Just my point of view! Your going to do great!

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