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  • Any other young adults under 30 ckd patients?

    Hi! I'm 20 and currently living with stage 5 ckd. I am looking for other people around my age also living with this disease to share stories/struggles. It's pretty hard finding friends who are accommodating with all the lifestyle changes this disease brings (all the fatigue, exhaustion etc). Would love to meet some people on here to share with!

    ---------------
    Rachel
    20 years old
    Toronto, Canada

  • #2
    Originally posted by YoungandRestless12 View Post
    Hi! I'm 20 and currently living with stage 5 ckd. I am looking for other people around my age also living with this disease to share stories/struggles. It's pretty hard finding friends who are accommodating with all the lifestyle changes this disease brings (all the fatigue, exhaustion etc). Would love to meet some people on here to share with!

    ---------------
    Rachel
    20 years old
    Toronto, Canada
    Hi Rachel, it's nice to meet you! My name is Kelsey, I'm the myDaVita community manager . I'm sure you'll be able to meet others your age that are going through the same thing here. It's always helpful to know that you're not alone. Please don't hesitate to reach out to me if you have any questions. Have a great Tuesday!

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    • #3
      Originally posted by YoungandRestless12 View Post
      Hi! I'm 20 and currently living with stage 5 ckd. I am looking for other people around my age also living with this disease to share stories/struggles. It's pretty hard finding friends who are accommodating with all the lifestyle changes this disease brings (all the fatigue, exhaustion etc). Would love to meet some people on here to share with!

      ---------------
      Rachel
      20 years old
      Toronto, Canada
      I am 29 and dealing with the same although not on dialysis , but trying to cope with the lifestyle changes , hope it helps

      Comment


      • #4
        Hello my Name is Melody and i have been on Dialysis for almost 6 years now! i am 33 years old,,and am always looking for others who go thru what i do!,,,i do home hemo and my biggest fear has always been the needles BUT now i stick myself! but would love some friends of any age!! just to know or talk to people who know what i am going thru would help so much! feel free to email me oneoddchickee@yahoo.com

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        • #5
          Yes, my real name is Jose. I am in the United States in a place called Fresno, California. I am on early stage chronic kidney disease on stage 3. I'm scared to know about you on stage 5. Wow, how terrible! You should discuss with your nephrologists (kidney doctors) if you will need dialysis, transplant, or both. Do you know someone who also has had the condition? You might want to find a network of people in your (and my) similar situation, from all five stages of the chronic thing.

          So, let me say about myself. I am 23, in about a little more than a month and a half I am turning 24. My kidney biopsy was done in March this year, by April 18 results of the biopsy said my kidneys were failing. I was on 35 to 40 of GFR. Immediately I got scared, sad, miserable. I felt like giving up and not want to do stuff like I used to anymore. Never had I suffered so much in my life. At first the nephrologists would suggest to cut back on the kidney-unfriendly foods and drinks, was pretty tough at first, then I found out it could be of things i love to still eat and drink so I also have tried new foods and drinks, and enjoyed them. I wish I tried them even before I had CKD. I have had high protein in the urine, first known in November 2004 at the age of 12, had to have more urine tests in clinics and a children's hospital, but then protein levels got good. In 2006 when I went to that children's hospital again the doctors said the high protein in the urine was still at a high level but rather excellent, and suggested waiting until I got older to see if it would continue and what would happen. But a nephrologist who I saw a few weeks ago said to me that in 2006 is when the kidney biopsy should have been done, not this year, because then perhaps we'd do something to prevent CKD in me. So, since nine months ago more urine and blood tests have been done for me, results were at first showing high protein levels, then I was sent to the nephrology center in my area. This year has been rather tough and with more sadness than any other year in my life, mostly due to knowing I have CKD. So then more high protein levels showed, in addition to high blood pressure, now take pills for high blood pressure. Blood pressure is the second leading cause of CKD after diabetes, I'm glad to not have diabetes. However, I did not present any symptoms related to high blood pressure, like blurry vision. I had never taken much medication before this year, now I am a person who takes them daily. I was overweight in the last two years especially, then have lost quite a bit of weight in the last two months alone due to this new renal diet with tons of organic foods and drinks. I've lost some 22 pounds or some 8 or 9 kilograms. Yes, high protein in the urine means CKD is present, and it's happened all of a sudden - no family member of mine has CKD, I did eat healthy a lot before having the CKD, I have never had diabetes, I never ate excessive junk food or unhealthy snacks before this year in April, though I would eat quite a lot of meat especially until 2008 I did not have a kidney disease then. I'm learning how CKD can suddenly strike some random person even if he or she takes good care of themselves, as can be with any other illness, disability, or condition. Meat is high in protein but I also have two uncles and my brother who are big meat eaters and they don't have kidney disease. Immediately on April 18 when I found out I have CKD I started to feel so down, that afternoon, since April 17 at night when I went to bed and sleep I couldn't sleep and thought it would go bad in the results of the biopsy, and it did. Immediately I began feeling like April 18 became the worst day of my life so far. A few days later I did not want to do normal daily stuff anymore. I've never felt down so much in my life. Now I am knowing more of what it's like to really suffer. And this isn't even the worst, there are people in worse conditions still. I have had days of much sadness and have had a few tears come out of my eyes. Now I am taking remedies taken prescribed by a few different doctors. My GFR now is fortunately higher at 43, from the nephrology center near me that showed results on June 13, after taking analyses on urine and blood again a week earlier, due to the medicines and following the correct renal diet. If I follow that then eventually I can go up to stage 2. I am not on a list of dialysis for now, so I can still thrive with this stage 3. I'm scared of dialysis. Haven't been told I will soon need a transplant either. I'm glad to not starve because I have had new things to eat and drink, not as much to give up like some other diseases or conditions. I can feel tired at times, don't do things like mow the lawn or vacuum often anymore. I have had restless nights thinking now that I have CKD what is my life going to now be like!!! My life has changed in these things: taking medicines daily, knowing how it's like to suffer a serious illness, not drinking until after eating a meal mostly, having less of a variety to eat and drink, eating even more healthy, knowing how it really feels to suffer a lot, and knowing that despite everything I am able to withstand a lot of stuff. The last of these is from a wise quote I've heard of life not giving you a load greater than your strengths. 2016 has been my saddest and worst year. I first felt like it's the end of the world, I still smile and stay positive when I can, I am glad to not be in hospitals, to not suffer worse still, and still want to live a good life. I may have to have supplemental income given to me by the government to live and get by from now on, my parents will have to have their own life as years go by. I am hoping for an even more complete list of the kidney diet and an even higher GFR. Have heard this thing can go up and down in terms of GFR. I am doing the things I love still. I can drive and do daily tasks. I am unable to work for now but maybe later despite the CKD I can work normally, just let everyone know that I have kidney disease. I might sometime join a kidney class or CKD support group in my area to feel more relieved of this ailing thing. You may also go to my new blog (I'll post more posts starting soon) at: https://mividaconlaercmylifewithckd.wordpress.com/.

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          • #6
            mybluebird Hi Melody, welcome to myDaVita! It sounds like these forums will be great for what you're looking for! A place to talk with others who share your connection to kidney disease and to find support and inspiration. Please let me know if you have any questions!

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            • #7
              Krstark Hi Kristi! I think you'll definitely be able to connect with others who are your age and share a story to kidney disease. It's important to know you're not alone and speak with others who can relate to what you're going through. Let me know if you have any myDaVita questions, have a great evening!

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              • #8
                Name JQ.29.full blood chinese lived in china at the momemt.feel free to PM me.would like to flee to US once i done my transplantation.

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                • #9
                  Originally posted by YoungandRestless12 View Post
                  Hi! I'm 20 and currently living with stage 5 ckd. I am looking for other people around my age also living with this disease to share stories/struggles. It's pretty hard finding friends who are accommodating with all the lifestyle changes this disease brings (all the fatigue, exhaustion etc). Would love to meet some people on here to share with!

                  ---------------
                  Rachel
                  20 years old
                  Toronto, Canada

                  Hi!

                  I'm 31 and was diagnosed with kidney disease after a long battle of cancer, chemotherapy and pregnancy, which was my final blow. Have you thought about having children? Are you currently on dialysis?

                  Being so young, I found a way to postpone my transplant by changing my diet to follow a Paleo Diet. (http://www.experiencepaleo.com/my-struggle/) I'm very scared of the after transplant drugs and how they will affect me since I am so young.

                  My Paleo diet has helped me get off dialysis and I'm able to live a normal life now. We are so young and we should be able to enjoy our life and not have to deal with this PD or Hemo dialysis, constant bloodwork, and monthly doctor appointments. I'm curious, has anyone attempted a Paleo Diet? Have you had the same results as I have? instead of taking medication, focus on the food you provide your body with. It all starts with food!

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                  • #10
                    I am 33 years old living in Fresno, Ca and I have been on dialysis since the age of 21. So right now going on 12 years of Hemodialysis and PD. If you want to know more just message me. I'm always available to give suggestions or comments about ESRD and Dialysis.

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