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

Hello Everyone, good morning I would like to start off with as you probably know I’m very new to this site like last night new. Lol and waking up and turning on my phone and seeing the hugs made me feel very very happy and put a smile on my face and it did a lot and I appreciate it. I appreciate everybody that took the time out to do that. I never take anything for granted in this life. I am sending hugs back your way I do not know yet how to navigate on this site and send messages back so I’m posting a comment letting you know if anyone could advise me on how I could start a direct conversation. I would appreciate it. And like I said, the hogs go both ways it’s not a one-way street over here. We all need help and encouragement and no matter the sickness illness , nothing is taken lightly and everyone deserves to know that there’s somebody out there that cares so no I am out here and I care. Everybody have a wonderful day. I’m looking forward to hearing more from everybody. I do not know how to post to comment on your site, I would like to do a reply, but it keeps sending me back to the main page.

@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,
Ginger

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 .

Good afternoon! I just wanted to take a second to say hello and thank you as well privately. It really means a lot to me . As you know I’m new here and I’m doing my best to learn how to navigate the site. Feel free to private message me at anytime. I’m always here to listen. If there is one thing that I have learned throughout all of this as much pain as I am in every day I’ve come to find out through family and friends that people don’t want to hear it. They want to ask you. How are you doing and how you feel but they don’t want you to complain and hear that you’re in pain every day. My question is then why ask me lol. Do you know the situation they know the answer if you don’t want the answer, don’t ask the question. So to let you know, I will always be here for you and everybody else 24 seven to listen but sometimes people just need somebody to listen to them outside of their world , but can understand what they’re going through. No judge just listen and understand so if you ever need to talk talk privately your family is not being receptive of what you have to say. I am here for you. Thank you for your support. Sincerely, Jeffrey.

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.

@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

Honestly, the whole transplant thing was never on the table for me to begin with that was an initiative. Family members took on my behalf. So in terms of double kidney transplant is basically me hearing the doctor say you need two new kidneys you have two bad kidneys. I am fortunate and blessed that I do have a lot of matches, but I am choosing not to go that route. I’m leaving with what I came here with. I’m also not willing to take years off of somebody else’s life for a few more years of pain of mine. I think this is a private message to you. I think I’m starting to get this down pat. Lol. I smile every day Ginger!! I’m a Capricorn I am a little bit of a leader but I understand your comparison to spokes on a wheel, which I also can put that hat on as well I do every day. But in terms of working business, I tend to take the reins. One of the things I did when I got diagnosed and was going through those awful surgeries was I went out and I bought my dream car. So every day when I come out and I get into the car, no matter where I’m driving no matter what I’m doing. I have a smile on my face. I like to see all the people smile every day I do my best to take care of my parents and to see my family smile makes me happy. I am in very good control of my diet. I have to be as you know. It takes me a very very long time to just digest certain foods. So my menu is limited. Lol I’ve been doing a lot of traveling lately , basically trying to cram that bucket list make as many checkmarks as I can. One of my good friends at the gym says to me I don’t understand how you smile every day Jeff and how you always just stay positive and you’re laughing and always in a good mood I just don’t get how you could say. This was a good year. I reply I’m here I am here. Today’s a good day. Yesterday was a good day as bad as it was it could be a lot worse. There are a lot of people that are more sick than I am that are in worse situations that I’m in and I’m very conscious and aware of that. Now the Bible says you don’t get in to heaven by doing works but I’m hoping I get a good mention in honorable mention. Lol I do not do social media but I am very happy that I found this platform. My question is what are you doing to smile Ginger? Also, thank you again for the replies the hugs and the help. It’s much appreciated!

@jbc44strongest Jerry, this is again in the public forum. If you click on the icon just above mentor on my name, it will go to my profile. you can read some of my background, see the posts I have made, etc. And, there is a "send private message" button you can use to send one to me.

This morning I had the pleasure of virtually attending a zoom support group for multiple myeloma patients. Of course, it was early here, 8a.m.! What puts a smile on my face is to do for others whenever I may be able to. I make knit hats and scarves all year 'round that are handed out at our local food bank in the cooler weather. I make small quilts for the foster child program in our local county. I offer my experiences here on Mayo Clinic Connect, and at my dialysis center, to assist others on their own health journeys. I am an elected official in our little town, serving as a city councilperson. My overall goal is to make a difference however/whenever/wherever possible.

What is your dream car? Its color and name? sorry, I name everything! My car is Maverick.
Ginger

OK so being a teenager in the 90s I was in love with the 1995 Ford mustang 5.0 with a spoiler red and chrome five star rims. So cliché I know. Lol. The other was 1997 Porsche TwinTurbo to exhaust with the spoiler that raises up once you hit 60 mph with chrome rims black exterior. But in 2020 Ford came out with a 50 year anniversary, special edition, mustang convertible with a unique aerodynamic body style. It has all the bells and whistles. It’s got a chrome rims with black powder coating on the inside of them and it’s manual and automatic with paddle shifters, which I’m sure you know that means that you shift from the steering wheel there is no clutch. When I saw it, I fell in love with it and just yeah, I fell in love with it. This car, as was the Shelby back in the day was specifically designed to our drive out race of the Ferrari and Corvette. That’s what a manly Mr. Shelby did in working with Ford in the 60s. If you never saw the movie Ford versus Ferrari you should it’s very good with Matt Damon and Christian Bale. It explains everything that I just said and more. So on September 11, 2021 that was the day I noticed something was very wrong. I really don’t want to give TMI on that. But I finish the days were like a stubborn Sicilian would. Ha ha ha. Drove myself to the hospital and within 10 minutes I was being prepped for emergency surgery. I remember laying on the table going we can we just talk about this real quick as they were putting me to sleep through IV. Lol it was a scary day, I woke up and I heard somebody crying and then I realized that I recognize that cry and it was my mother. I got up which I shouldn’t of done walked over to the window of my door so my mother and father out there. I open the door and they were with the rabbi planning my funeral arrangements at Malone funeral home they were told even if I woke up, I was not gonna make it through the night. My kidneys were basically not functioning at all. I don’t know what the percentage was, but it was there’s no way back from this and I made it my job to stay awake. Stay awake stay awake stay awake . Which I did, then they wanted to induce me into a coma and make me comfortable when they brought me to hospice. I refused to sign the papers because just after being there for 24 hours every person they would induce into a coma and tell their family that it was for them to rest they would still be on morphine , and that slowly makes your diaphragm slow down and you stop breathing and then we all know what happens next. I walked out of hospice. Go back to the car after I got out of hospice. My parents said to me after we had a nice talk not really my dad with my mom says I want to just go buy any car you want and I said that sounds like a great idea mommy. It’s funny when you think you’re gonna die or rather, you’re told that you’re not gonna live past a certain time of day year and you realize life is short and then you realize that you can’t take it with you you can’t take the money with you , so I started spending lol and I bought that special edition Mustang, 2020 red convertible.