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jbc44strongest (@jbc44strongest)

(CKD) 2 year clock running out. I’m fading out.

Kidney & Bladder | Last Active: May 21 9:14am | Replies (9)

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@jbc44strongest

Good afternoon everybody. I just would like to take the time out to thank everyone for the hugs, the replies and see you that this people willing to listen not just listen but understand situation not judge and sometimes that’s what we need. As I told a few of you in private messages, throughout this journey, I have come to find that family and friends will ask you constantly daily. How are you feeling? How is everything what’s going on today? Although those questions are valid my answers are kind of falling on deaf ears. I was actually told by a family member. Nobody wants to hear somebody complain every day about how much pain they’re in. What excuse me? Why ask, why ask. They already know the answer it’s almost like they going through the motions to show that they care, but they don’t want to hear the answer, and we all know that when they ask those questions, they know the answers but they don’t want to hear them. So I started telling everybody don’t ask don’t tell. They can see by the look on my face and my body language the way I talk anybody that knows me knows I am in pain I’m in pain every day as are probably 99% of you, so no, I don’t answer those questions anymore. The days that I’m in extreme horrific pain they can see it still ask and that’s what I’ll answer because they want me in the hospital and I’m not going. I don’t know if anybody is familiar with a blood gas test for your pH levels for your kidneys let me also just say since I started with this disease I’ve lost a lot of memory mostly short-term I mixup days weeks months years so or what I’ve said so if I repeat myself a few times I apologize ahead but when you’re getting a peach gas test, that is them taking blood basically from Jp I believe it’s your femoral vein from the groin so on Friday I had two nurses want to hold my thigh, one the other thing to separate it and then an IV put in my groin to draw 6 pints, pints or vials of blood . Very painful my for I overhear my father speaking with my mother about it and he’s telling her I’m sure they numbed the area. I had to interject and say no if they spray to freeze or numb the area, it would make the vein retract and then they wouldn’t able to be draw the blood . So everybody has these misconceptions of oh, but they do something for the pain or oh you won’t feel it which is so far from the truth I feel everything that they do except when I’m on the anesthesia for a surgery and even that prep is in a pretty day . I am so happy I found the site. I am not happy to see that there are so many people out there that are going through the same thing as me and maybe through different diseases or diagnoses but we’re all kind of in the same shit and I want to let everybody know I am here to listen. I am a very good listener . I will be here 24 seven for anyone that needs somebody to talk to or just somebody that needs someone to hear and listen to them vent because you’re tired of telling your families the same thing every day and they say that they’re tired of hearing it which is awful but unfortunately that is what’s going on for me and I’m sure a lot of you , please if you need someone to talk to about anything I’m here I don’t judge. That’s God‘s job not mine. We’re on a journey and we’re here right now. Everybody enjoy your day and God bless.

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Replies to "Good afternoon everybody. I just would like to take the time out to thank everyone for..."

@jbc44strongest Hi Jeffrey. All of your posts so far that I see are published on the Connect site, and not in a private message to me. And really, i think that is a good thing, as you offer your story for more people to read. They can nod their heads in agreement and know they are not alone, too! Sometimes feeling like there may not be anyone else who feels like you do, can be so lonely, right?

So, it sounds like you are not on dialysis at this time. I am not aware of anyone being able to be transplanted with two kidneys. All my experience and research is a single kidney transplant. Sometimes a diseased kidney may be removed. Do you know what your eGFR [estimated glomerular filtration rate] is at this point? At 20, they can start listing you for a transplant and start the transplant evaluation. Some people may try for a living donor and a preemptive transplant. for myself, i cannot be transplanted because of my active blood cancer multiple myeloma.

There is a lot to handle with chronic kidney disease, and it is a challenge to do the best we can to help ourselves get as healthy as possible. We need to eat right for our unique situation, and be an active participant in our care. Our medical care team is like the spokes on a wheel, and we are the hub. Everyone works together.

What are you doing for yourself this weekend? What will you do to make you smile and enjoy being here?
Ginger