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

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 morning back to you, Jeffrey, and welcome to Mayo Clinic Connect! So good to see others who have sent you hugs on your post. It's sometimes a scary thing to step into a group, isn't it? Getting support is such a blessing for us.

You mentioned that you need a double transplant. I figure kidney, but what is the other organ? What is the underlying cause of your kidney disease, if I may ask? And of course, being a dialysis patient myself, I am very curious why your doctors want to take you off dialysis? [are you doing hemodialysis of peritoneal?]

To reply to my post, simply click on the blue "reply" button below my post. A window will come up where you can type in a reply. You can communicate with any member by clicking on their avatar or profile, and choosing "private message". This can be useful, but often, posting into the open group may be more beneficial to you.

Looking forward to hearing more from you,

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Replies to "@jbc44strongest Good morning back to you, Jeffrey, and welcome to Mayo Clinic Connect! So good to..."

Thank you for the instructions. LOL. I hope this is a private message. You are receiving from me and not a post. I need a double kidney transplant, but it is not on the table for me because I am not going to take years off of people in my family‘s life because I got Adele sort of a bad hand if that’s how I’ll phrase it for now. Walls it would do would prolong the inevitable. I might’ve miss worded what I said they want to start me on dialysis but spinning my blood has nothing to do with the fact my kidneys can no longer break down nor pull the nutrients out of the food that I need. I have all three types of kidney stones as I mentioned I’m not sure if when I posted that if people were able to see what I said , I’m sure you know struvite kidney stones are I don’t wanna word this the wrong way but are common to females that are prone to frequent UTIs. It’s a gathering of crystals in your kidneys that group together and form a very, very big stone. My kidneys are riddled with them at any given time. I also have sodium phosphate stones, as well as calcium stones. my first three operations were not performed correctly at the hospital and as an example, I had 14 inch stent put in both of my kidneys and the urologist was off by 2 3/4 of an inch in my left kidney, which ended up causing me to go septic a second time and just from them going in with cameras working diagnosing and I have a lot of scar tissue buildup so now when I have the stones, it’s very very hard to pass them. I am no longer a candidate for the blast as they call it the electronic glass because I’ve had it done throughout my life. I think nine times. I’m not sure but , you’re not allowed to get it that many times I had to go to different hospitals because my main hospital was turning me away because of how many times I’ve had a done I’ve had them removed stolen speak them I’ve had stones I’ve had the electric blast I’ve had the flush I’ve had the vacuum process done about four or five times I lose count now but major surgeries I had five in the last year and a half so my kidneys are functioning around the 70% area and they told me as my kidneys start getting into lower function. That’ll affect the other organs in a domino effect I was in the hospital for over a week and during New Year’s and that was with pancreatitis so it’s the trickle down effect mixes my liver in the lungs than the heart and I’m trying to do everything I can do no more for my family rather than me not that I don’t want to live. It’s just sad to pay that I’ll be there every day is close to unbearable and with the whole opioid crisis and everything they no longer on Long Island. I don’t know where you’re from. I’m sorry, but on Long Island they no longer prescribe pain medication , you can go into the hospital with a broken home and a broken leg and they’ll give you Tylenol. They actually told me to start taking Motrin and ibuprofen with which any kidney or urologist doctor without the fundamentals of ibuprofen being a home to your kidneys these are the type of people I’m dealing with enough about me how about you can you tell me a little bit about yourself and what’s going on with you and how do I click on to your profile so I can read and then understand more and that I have to you know make you explain every little thing to me holding my hand lol I’m sorry thank you for getting in touch with me though you guys everybody waking up and seeing all this really really shocked me and maybe baby very very very happy to the point where I’m actually out right now driving and working well last week. I had four days that I couldn’t even walk so you guys were a huge spirit lift is for today especially you thank you and I’m sending you a hug. I hope you have a great day .