I am 16 and not quite sure what I should do

[Ellenibarlow]

I'm new here. I am 16 and have a function in my left kidney of 27% and my right 76%, I have had a low function since march 2013 and it had just gone down and down. I have been having back pain, feeling nauseous, feeling fatigue, have a shortness of breath, struggle to concentrate in school and at work and just at home cooking dinner, and am loosing my appetite. What does my function being this low mean? Do I need to go on dialysis with my kidney function this low in my left kidney, and what do these symptoms mean?

[coaching]

Hi Ellen,

The best thing to do is book an appointment to see your kidney specialist as soon as possible.

[Hidden]

Hi,

Since you stated your age you have some limit to your options. While it is your health you are concerned about you are, and I'm guessing, on your parent's health insurance. You'll have to speak to them to determine what can be done. What you can do is learn as much as you can about CKD. If you live in the USA you can register for a free Kidney Smart class in your area. It's about 90 minutes long and will answer a lot of the questions you have. I'd suggest you bring either one or both of your parents. If you aren't in the USA then go to kidneyschool.org/mods/ and you'll find a series of modules on CKD that you can view and learn what you need to know about CKD.

[KelliC_NKF]

I agree with @coaching. You need to see a kidney specialist called a nephrologist to be further evaluated. They will need to find out what is causing your kidney problem. If your one kidney is functioning at 76% you would not need dialysis, so I would not recommend any classes on treatment options at this time.

[Ellenibarlow]

I go to great ormond street hospital and see a neurologist there but they dont say much

[Sulyn in reply to Ellenibarlow]

The doctor you need to see is a nephrologist. Is there a nephrologist at your hospital ? - if not please search for one near you that does have a nephrology department.

[Ellenibarlow in reply to Sulyn]

I meant nephrologist

[TaffyTwoshoes27 in reply to Ellenibarlow]

Well....keep in touch on here, go to Davita.com, take the SmartKidney class, and by all means, find a Nephrologist that "says much." My nephrologist will sit with me for an hour answering questions if I need the time! I have never met a specialist like my Nephrologist. He admits that the specialist physicians field is full of doctors that get the patient in and out as quickly as possible....then file a claim. I was referred (by devine intervention--in my opinion) when I became extremely sick, lost 50 lbs in a short amt of time, had shortness of breath, etc., and asked a hospital chaplain at a hospital where my sister had been a chaplain about a nephrologist and he set up the entire first visit. The doctor saw me after hours, talked to me for about 2 hours and didn't charge me a dime (I had no insurance at the time). I sat in my car after the appt and cried b/c I felt so grateful and relieved. It was the first time a doctor told me I had CKD4 and how I shld proceed with changing my diet IMMEDIATELY. I stayed off dialysis for two more years under my doctor's supervision.

A good nephrologist (and renal nurse) can make all the difference in the CKD and ESRD journey.

[Hidden]

What have your parents/guardians told you to do at this point?

[Ellenibarlow in reply to Hidden]

nothing just keep taking medication which they upped and has made me feel worse

[Hidden]

I appreciate your candor but I'm going on my instinct as a parent and grandparent and say that due to your age you have to work with your parents on this. I know others have stated differently but again I'm going to say that a Kidney Smart class will answer any questions you have. They are run by professionals with knowledge of kidney issues and perhaps it will help you and your parents get additional information. If you aren't in the USA then the Kidney School modules will help you understand almost as well and if a parent watches them also, you'll be able to understand things you don't know or understand fully, and then the questions you can ask will be personal to your issues.

There are many other suggestions to be made but I am hesitant to do so without further information and support from your family. Have your parents scheduled you for an appointment with a Renal Dietitian to look into your lab values and meal plan to see if anything there is causing the health issues?

[Bet117 NKF Ambassador]

Hi Ellen,

Breathe and remember that you are not alone! Many people love you and will help if you reach out to them.

Unfortunately, this is not easy. It is also both frightening and frustrating, especially when you don't feel well. It is very normal to feel this way.

First, it is important that you sit down with your parents and tell them exactly how you have been feeling with the medicine, which may need adjusting , and to contact the doctor. Keep in mind that you DO NOT need to or go to dialysis until your doctor days so. At 16 years old, is there a school nurse at your school? If yes, see your school nurse and tell her that you are not feeling well and what is wrong. Also, what medications that you are presently taking. She should be aware of all of your medical conditions and the medications that you are taking, if not, bringing them when you see her will be helpful. The school nurse will note your visit to her and discuss contacting your parents with you; stressing the fact that seeing a kidney specialist is important at this time. BUT speak to your parents first!

I agree with both Coaching and Kelli C, that it is important that you see a nephrologist.

Do you have a GP ( PCP)/ pediatrician, who takes care of your overall health?

If yes, speak to your parents and make an appointment to see him/her. Let them know EXACTLY how you have been feeling as they can refer you to a nephrologist, or kidney specialist. Start there.

If not, again, speak to your parents and go into an Urgent Care center with your test results as they will give you the name of a nephrologist, or kidney doctor.

The davita Kidney Smart classes are GREAT, but seeing your GP and school nurse might be a first step. It takes strength and courage to deal with all of this, but you can do it! Coaching, Kelli C, and Mr._Kidney among other people are all here to listen and stand by you.

Talk to your parents, etc. and let us know what is happening and how you are. Stay strong and be brave!

We care and are waiting to hear!

Bet

[lowraind]

Just a quick question--are you a liberated minor? I ask that because it sounded to me as though you have a lot of responsibility for someone so young. If you are going to school and working, and also dealing with health issues, that is a heavy load to carry and you do need all of the support you can get.

Also, you mentioned seeing a neurologist. As the others have mentioned, it is a nephrologist that you need to see for your kidneys. You also said that they upped your medication. Is this something you have been given for your kidneys? The whole kidney issue has many questions in and of itself. Do remember that many people do function with one healthy kidney, and with a GFR of 76 it is still relatively healthy. The attention does need to be given to keeping that kidney healthy.

[TaffyTwoshoes27 in reply to lowraind]

I hope Ellen answers the questions posed by the replies to her attempts to reach out and find some answers! I pray that she is now busy --with her parents or other guardian -- going to appointments to get the answers she needs to feel better. 76% function in one kidney shld be picking up the slack, so perhaps there are other medical issues going on here? I learned -- in my journey after my CKD diagnosis -- that I had mild COPD as well as osteoarthritis in both knees and hips. All those medical conditions were working to exacerbate the symptoms of the CKD.

[Cathy12156dsrjad]

Hi Ellen, All I have read from others is so correct. Talking to someone really helps, probably your parents on your feelings and seeing a nephrologist. I can say one thing having CKD myself... only God knows all the answers and now He is holding u in His arms really tight telling u it WILL be ok and “HE HAS THIS”. He always has been there for me in a lot of dark places and never once let me down. We ask why sometimes of our illnesses and God says why not. His son died for us. That’s how much He loves us so I just try to give Him the glory for every minute. He loves u so much. Rest in His arms when u need to and if I can ever help I am here for u!!!🙏🏻🌈

[Cathy12156dsrjad]

How r u doing? Did u change doctors? Sometimes we need to if getting no answers from one and sometimes we just don’t fit well. U need to feel comfortable with your doctors. So very important! And did u and your parents go to the class? I hope so. Praying for u🙏🏻🌈

[coaching]

Hi Ellen,

I was just going over the conversation we had on here two months ago. How are you doing?

[Ellenibarlow]

I have stage 2 it turns out and getting bad quite quickly i have had bad hair fall out. I am doing the london bridge walk for kidney research uk on 1st july to raise money

[RhenDutchess123]

how do you know what percentage of kidney function you have in each one ?....is it a special test... i ususlly just get told a total GFR percentage.....best of luck to you on your journey....keep us posted...