Transitions and coping

[Ladybug_05]

Hello all! I'm excited to say that I'm in the third phase of getting ready for transplant and my evaluation is a week from today! I have mixed feelings about it, ranging from excitement to nervousness. I've read the schedule and it's two days at OHSU for classes, meeting the nutritionist, social worker and maybe some other individuals (my memory isn't the best) and testing to get me on the list. I'm hoping that everything goes well and I will have my parents with me for support. I've been waiting for evaluation for a few months and now that I'm doing my labs for it, it's finally sinking in that I'll be on the list and have a chance at a new kidney.

I'll admit that it's a lot for me to take in; I don't remember a time that I've been "healthy" and the possibility of recieving a new kidney (hoping for live donation from a family member) is difficult for me to imagine. I'm also at a point where I might need dialysis, but I'm keeping my fingers crossed that I can get a donor in time.

How have you all coped with this transition? I know that having CKD my entire life doesn't help, since I don't know a life without it. I'm also having a rough time with the whole "getting worse before it gets better" bit. In the last few months, I've gone from exercising for 45 minutes 4 times a week to barely being able to go up a flight of stairs and be awake for more than 8 hours at a time without utter exhaustion, memory problems and concentration issues. I don't bounce back like I feel like I should and it gets tough sometimes.

Thank you all for your input and have a lovely night!

[Charlene_Coxhead]

Hi ladybugs

I to have had CKD most of my life but it's only been the last 18months it effected every part of it. Both my parents were originally tested last year to find my dad was a perfect match but only had 53% renal function so he was ruled out. However my mum went a head as a bone direct match to do the paired exchange. After three months of tests and the hope I would get a live donor it turned out her left kidney was scarred and small so we couldn't go ahead. It's a roller coaster of emotion and very isolating for you as it's all about the live donor and no one talks to you so please shout out on here.

I've had all the work up for the deceased list but been suspending as they've now decided a year on that they are retesting my dad after my consultant pushed and his function is now 72% so waiting to be told yes or no. My head is all over the place waiting to be told. I am also not on dialysis but have a fistula done for the last three months (needs repairing next week due to narrowing)

Your work up is pretty striaght forward and nothing to worry about.

You've mentioned your parents are your support which is great. Do you still live with them. You haven't mentioned your age or where you are being treated. I'm 37 and under the Churchill in Oxford.

Stay positive you will get through this and have a great future with a new kidney

Charlene

[Ladybug_05 in reply to Charlene_Coxhead]

Hello Charlene! I'm being treated at OHSU on the west coast and I'm 20 years old. I'm in my third year (out of five; biology education major) of college which is two hours south of my parents houses, who are 15 minutes apart and about an hour north from the hospital.

My mom, dad and step mom are all support persons as well as attempting to be donors and I also have my older brother who is trying to be a donor as well.

Even though I have 2 "offical" support persons (mom and dad), my other family members, friends and my boyfriend are all willing to divide up resposibilities so that way when the time comes there's a lot of people who can help out. My coordinator knows this and I made it clear with her that depending on where I am I will have to drive myself but my support person(s) will meet me there, or someone who isn't my official support person will drive me if my offical person(s) are too far out out time wise for me to wait for them.

This is also assuming that I'm still in school at that point and am still able to drive. Plans are already in place for me to medically withdraw from college and freeze my standing, financial aid, etc. So all I have to do is say that I'm withdrawing. We're also expecting me to be on dialysis within a few months, since my kidney is tanking at this point, so I should be home (dad's house at the moment) when I get a transplant.

My evaluation went great, but I was very intimidated by the shear amount of information given in one day and I was on information overload by the end of it. I felt bad that I needed my mom to answer questions or clarify what I was saying, but I suppose that's normal in this situation?