Just looking for info

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Hello everyone, I'm new to here and just wanted to ask some questions. Just a little background, I'm a 39 yr old guy and have been given a diagnosis of end stage kidney failure. My nephrologist had talked to me about dialysis and transplantation. I'm terrified, and just wanted to ask anyone that has gone through this what I should expect in the near future. Any help would be appreciated. I have a great family that loves and supports me, but I find it very difficult to talk to them about it because they worry enough about me as it is. Hope to hear back from someone here. Thanks so much.

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  • Posted

    I don't have direct experience of your position as my kidney function hasn't yet deteriorated as far as yours. I trust and hope that you will get the help / support / information from this wonderful forum. However I was struck by your concern for your family's worrying about you. I just wanted to counter that thinking and plead to you that you don't let your worry for them get in the way of letting them help and support you. I believe this 'second-guessing' of others' feelings is generally a mistake! They're only feelings - better expressed and shared than held in and shut down.

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    • Posted

      Hi pepasan. Your story is almost the same as mine, though i may have a small amount of time before end stage. Same age, family man etc. Diagnosed a week ago. I can't bring myself to tell anyone (kids, parents) except my brother and wife until i need to. It is probably the wrong approach but it's where I'm at.

      I'm sorry i can't offer you advice given I'm at a similar stage. But it might be worth letting siblings or very close friends know in confidence...as you may be surprised who will be willing to be a living donor.

      Much hope and best wishes.

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  • Posted

    Brent,

    I have chronic kidney disease which has progressed to Stage V within the past year. Certainly this is not easy. But for me it may be somewhat easier because I grew up in a family with a father who had chronic kidney disease. I never knew him when he didn't have chronic kidney disease.

    He and my mother were very forthcoming about his health. I remember knowing, as a young child 8 years of age, that my father always took a nap after he got home from work. After his nap he was always ready to hear how my day went and so forth. As I grew older I realized that we ate differently because of my father's dietary restrictions. And I saw that he took various medications. He also had various doctor's appointments. However, I do not remember being overly worried or concerned. After all, this was normal for my father and our family.

    As an adult I realized that my mother and father had made plans for life after he passed away. However, my father lived well into my adult life. Clearly he lived MUCH longer than either he or my mother had expected.

    It's precisely because I grew up with a father who had chronic kidney disease that I'm able to handle my own diagnosis now. I know I can (and will) live well with CKD. I know that if I work with my medical team I will feel and function quite well as my father did for decades.

    So, my father taught me how to live well with a serious chronic condition. I'm so thankful that he handled his CKD the way he did. What an incredible gift that has been for me and my siblings!

    Of course you'll need to decide how you will handle this with your family. But you may be surprised how your family will react to this knowledge🐶

    Wishing you and your family nothing but the best.

    Marj

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  • Posted

    Hi Brent / Joel,

    First off, I just wanted to echo Pepasan's advice and encourage you to share the news of your condition with your family.  I know what it's like to want to spare them the worry, but ponder for a moment:  what if the situation were reversed and they had a serious illness which they withheld from you?  I'll wager you would be upset b/c you love them and would have wanted to help.  That said, you will probably be in a better place to talk about it once you've heard from others with the same issue over the next few days and are better informed / more comfortable with the topic.

    The other way to think about this is that it helps to talk to others about your condition, to "get it off your chest" so to speak.  In my case, I told my family early on but held off from telling friends and close coworkers for years until ESRD when I couldn't hid it anymore, the reason being talking about it made me upset.  It was probably my mind's way of not wanting to accept that I had the disease.  And you know what?  Once I let others in on it, I found that every time I discussed it it became easier to talk about and easier to accept.  Weird, but true.

    Now that we've taken care of that:  Brent, I can outline the broad strokes but it would help to have more specific questions.  In terms of dialysis:  you will be given the choice of 2 modalities - peritoneal dialysis (PD) and hemodialysis (HD).  Both achieve the same result via different methods.  PD entails minor surgery where they install a catheter into your belly, with one end going into your peritoneum and the other dangling out of you with a valve and cap on the end.  You connect the catheter to bags of fluid, the idea being that the fluid goes into your peritoneal cavity, dwells, pulls toxins and water from you, then you empty it out of you, refill with more fluid, etc. Lather, rinse, repeat.  The fluid essentially becomes your urine, so to speak.

    HD entails cleaning your blood directly.  They perform surgery on an arm to connect a vein to an artery which becomes a fistula (pops out of your arm - think Swartzenegger muscle builder type vein times 3).  They connect you to an HD machine via needles into your fistula, your blood flows thru the machine, and it's cleaned.  Both modalities have plusses and minuses; I was on PD, and can talk to that if needed.

    Once you go onto dialysis, you will be on a waiting list for a kidney - that is, unless you have a friend or family who volunteers to be a live donor.  Having a live donor is obviously more desirable b/c it avoids dialysis, but most people don't have that luxury, I certainly didn't.  Assuming not, you will be on the waiting list for a cadaver donor, and the amount of time you wait depends primarily on your blood type.  In my case, I was on dialysis for 1.5 years when I got my kidney, which is a short time to wait, the reason being I have an "unpopular" blood type (A+); others with more popular types wait considerably longer.

    Those are the broad strokes, I hope they have been of some help.  If you have specific questions, please go ahead and ask. And if you're concerned, bear in mind the fact that I am the most squeamish person on planet earth and if I can get through it, anybody can.

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  • Posted

    I want to thank everyone here for your words of support and the information that was given. I'm happy to say that with yalls suggestions I have had the talk with my family. Of course they are scared like I am. I'm also glad to say that my twin brother is volunteering to give me a kidney if he's able to. I'm seeing the doctor Thursday to talk to him about getting the process started. I don't know how all this works but my twin should be a match right? I will say that I'm not totally on board with this because my brother is my life and I would never put him in danger. At the same time he's as hard headed as I am and may not take no for an answer. We will most likely fight about it. Lol!!! I'm still terrified but getting this burden off my chest has helped. Thank you all. I will update when I know more. I may be back when I start to feel overwhelmed again. God bless all of you.

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    • Posted

      Hi brent. My brother has done the exact same thing and volunteered, as has my wife. My brother has a family of his own and as for my wife....how do you accept something like that?. It is the most humbling and emotional thing I've dealt with. I can totally understand your mixed emotions. Feeling the exact same thing. Good luck.

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    • Posted

      So glad to hear that you've talked with your family! And, yes, such an incredible selfless gift--a living donor kidney!!

      Nothing but good thoughts for you and your loved ones.

      Marj

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