Hello I am new to this group, I wanted to find individuals that deal with the same struggles that I do. A little background info, I first devolped issues with my kidneys when I was 22. This was due to a medical malpractice that left me hospitalized for 4 days and permanent damage to both my kidneys. I am now 29, and the issues have only gotten worse with time. I typically end up in the emergency room and more often then not hospitalized for a few days every 2-4 months. I get severe kidney infections and kidney stones that all develop where the damaged portion of my kidneys are. Most of the time I'm ok, and I feel like my normal self, but when it hits it's like my whole body shuts down and it gets really bad and painful very quickly. I am currently labeled as disabled at my job so I get to work from home permanently, which is great and this allows me to be home with my two year old. I like those perks, and I am forever grateful I still have my kidneys since they were not sure if I would have to have parts of them removed when it initially happened. However, I get so depressed and down on myself everytime a kidney infection occurs and I end in the hospital for days. It makes me feel like I let my work down( I have demanding but very good career) and I feel like I'm letting my family down for not being around for a few days. I know it could always be worst but I can't help feeling horrible about myself everytime I end up hospitalized.
Dealing with feeling disabled : Hello I am... - Kidney Disease
Dealing with feeling disabled
I really hope someone here will hear you, come alongside you, and offer support. While it's my husband who deals with kidney issues, I've stood by and watched and helped. Kidney disease is truly life altering...the old normal is replaced with a new routines, new concerns, and more....even with a transplant. Surrounding yourself with others in the same boat is a wonderful thing. Please know you are not alone. I care. You matter and you have value - the world truly is a better place with you in it!
Thank you for your response, you made my day ❤️
Hello, while I don't have the same issues, I do understand feeling like you've let everyone down while dealing with an illness. I give myself a day or so to feel sorry for myself, then I put it to the back of my mind and go on with what I need to do for my family. I go to therapy with a professional, and my friends are also my therapy, always there to distract me.
Make sure to give yourself what you need then you will be able to look after your child.
Hello , It sounds as if you are up and down with your health problems, also given your age can be hard to deal with . I was diagnosed with RA before my 60 th birthday , I have been on Methotrexate , infusions, I’m on my second biological injection . I injured my spine 4 yrs ago , unfortunately because of Covid I didn’t really get seen , I ended up with several fractures , crushed veterbrae, I now have osteoarthritis , I have had two bad falls which J fractured my hand, also my sternum. I am going to start a bone injection to help heal fractures. I am actually going to see about a brace for my back which I have waited five years for , I now have a curve in my spine and can only walk a short distance due to the spinal pain, this has also affected my kidneys which I’m always getting UTI . I’m now in my 70 s and there are days I just have to rest up, if I think if I’m not too bad I get out and push myself . I have to say it can be very hard at times , I hope you have good support as it does help , im now focussing on the summer when I can sit in the garden . I wish you all the best and hope you find strength and support from the health team 🤞
Hi. As someone else said you matter and it grand you are able to work from home and be with your 2 year old. Congratulations on having such a precious gift. Two year olds are so much fun. It sounds like you have a grateful heart though you are awfully hard on yourself when you get sick and have to go into hospital. I am quite a bit older than you but can still feel like a burden on my family at times due to my own disability. It sounds like you have a supportive family as do I. Very sorry to read about the cause of your kidney disability. One thing I can say from my heart is when my husband had a severe injury and needed round the clock care we brought him home when he was over the worst of it. Along with wonderful health care providers who regularly came to our home to help and monitor him. It was difficult at times because I got worried when he took a step backwards and needed more surgery and hospital time. It was a blessing to be there for him when he needed me. Your family cares for you and that is a gift. Your emotions are valid. I find it helpful to keep a gratitude journal. We are here for you ❤️
Thank you all, it's really helpful to have my feeling of being a burden sometimes validated. Due to my age I don't have any friends that deal with simliar struggles so the condition can be isolating at times. It is such a comfort to talk to others in simliar boats.
Depending on where you live, there are also support groups that meet face to face. I go to one or two of those meetings every 6 months or so just to boost my morale. Oh, I have early onset poly-osteoarthritis that has thus far resulted in bilateral hip replacements, bilateral knee replacements, and bilateral ankle fusions. All the surgeries were done between 2004-2012 so 8 surgeries in 8 years. That can get too you mentally and cause the feeling of inadequacy. However, like you, I suffered my issues early and in addition to the joint issues, at age 29 (1996) I was diagnosed with CKD stage 4 followed 8 days later (due to a doctor’s idiotic error) by AKI, multiple organ failure and my near death. Spent 6/7 months in the ICU, regained some kidney and liver function (kidneys still damaged as nephrons don’t regenerate like liver or skin cells unfortunately) eGFR runs about 14-20, most recent measurements the last 3/4 years (since moving into my late 50’s and while not technically “old” certainly enough age on specific body systems to lead to sub 20 eGFR readings now, average is consistently about 15-17. After 25 years of stage 4 CKD and eGFR readings approx 19/20 my kidneys are showing some deterioration despite nearly 25 years of constant steadiness and maintenance of at least a kidney function of 20-25% of normal. When the COVID lockdown year hot, that amount of time away from my “normal routine” as well as the natural aging process caused me to lose the ability to even sit at a desk and hold my head up for a business day. Thus, after nearly 30 years of running my own business while blessed with tremendous success in the last 15 years or so, I was unable to continue working as the joint issues were just too numerous, to painful and too debilitating. . But nothing I can do, in fact I’m in a wheelchair 95% of the time now, cannot walk more then 4/5 steps and despite continued efforts to add strength I cannot improve my walking ability. So this is my new lot in life and now I’m dependent on always having another. Currently my angle of a wife is in that role but I’m sure eventually (if I live long enough that is…lol) I’ll need a medical person a nurse most probably as my CKD and Osteoarthritis are both degenerative without hope of improvement. If I allow myself, I can have a 5-10 minute crying session because of the disappointment and the perceived unfairness of such a life altering issue at age 58/59. So I understand. However, I learned while getting hazed at West Point some 30+ years ago, your mood and general demeanor are as much a choice as a condition that affects you. So most days and most hours of those days I choose to be happy, to look for ways to build my knowledge of CKD, arthritis or anything that might be of some help to others by writing posts such as this to maybe help another scared soul recently diagnosed with CKD yet dismissed from the doctors office with little (if any) explanation of what that means or what the future may hold. (As we all know is the common outcome after 90-95% of said new diagnosis'). So I seek fulfillment in other ways, not by meeting face to face and counseling folks but by posting here and other sites that maybe something I convey or something I read/research regards CKD or other issues and pass on will make another happy, answer a question, ease a worried mind, or just comfort a fear of the unknown fate we all face with a diagnosis like we have. So yes I get what you are feeling and I get the desire to “have your feeling of being a burden validated.” I also understand the “at my age I don’t have any friends who are going through anything similar.” I was 29 when the AKI happened post doctor screw-up. No one I knew or talked to had any clue about what I had suffered or how these now almost 30 years post crash are a complete gift from God. I believe that as do ALL my doctors who treated me in 1996 and who treat me currently. Yet despite these feelings I try to be productive and positive in word and deed every minute of every day as ultimately it’s my choice. I can choose to break down, cry like a baby and feel sorry for myself OR I can choose to be better then that. My attitude and my demeanor are MOSTLY my choice every day. As such I’ll choose to be happy and seek fulfillment from tasks I can preform with no thoughts of what I CAN NO LONGER DO due to illness and aging. Even though my “work” isn’t as meaningful or as relevant to others as what my life’s work as a financial advisor was, it is nonetheless still important to me and others at times and still a way for my to serve my fellow man which has always been my goal, to better others lives, or paths through life always putting them first. When I do that at least for me, it leads to a tremendous sense of accomplishment and fulfillment. As always I wish you my best in your journey to ultimate happiness and prosperity!
I am sorry that happened to you particularly at a young age. Look at all you have to be thankful for and when you get these attacks these are not in your control and certainly not one one of your failures. Can you think of it as a success each day you live passed an incident to enjoy your life? Also, reach out to someone you think will give you help with depression. You are a survivor and have lived despite the mistake the hospital made. I hope you got a decent settlement out of it! Start planning for your future events like your childrens school, getting his drivers license....we all go though a period of depression because the information is poorly disseminated from the medical community and I have been told several times " Not to worry about it". It is truly amazing. I'll say a prayer you find a way to deal with this but its certainly not to blame yourself!
You are too kind. Many thanks for the tremendously kind words, I am moved and touched…you made my day. THANK YOU SO MUCH!
Anyone with polycystic kidney disease and managing to stay healthy despite all that?
Kidney biopsy and igA nephropathy (with UPDATE POST BIOPSY)
Praying for a miracle 
EGFR48&Protonix
3B and falling fast 
