question is there a differnt

[Beachgirl32]

transplant center call I didn’t get to answer because phone was charging and I was outside doing something. She left a message saying we have to do an annual review and update and we need to do update testing . She said to get me active ready. I been on the active list since may 2021 she said to get me active ready coming up in may so I’m confuse is there a difference from active and active ready. I call her back but seem we are playing phone tag today.

[AndrewT]

Dear Beachgirl32,

It's a 'Minefield', when it comes to 'Transplant' nomenclature, you have probably been put 'On Hold' until They have re-viewed you. You, most probably need to be 'Tissue Typed' again, maybe have some Scans- along with other 'Bits' too.

I can't guarantee 'anything' BUT I was Transplanted Not Long after I had All These Tests, way back in July 2013, so maybe, Just Maybe......... Fingers Crossed

AndrewT

[Beachgirl32 in reply to AndrewT]

thank you my transplant corninator I finally got a hold of she said I’m still active but they want me active ready meaning have all the test I need I haven’t had a heart cath cause I’m not on dialysis yet but probably coming in January she said after two years I will be on the list where I may get more calls it will be two years in may. My brother did not have to get test every year. But my transplant center want test every year ekg cat scan mra cause I had a brain aneurysm from my polycystic kidney disease, she said we can’t wait for another stress test because I’m so close going on dialysis she doesn’t want to overwhelm me with test.

Thank you for taking the time to reply Andrew.

[RonZone]

Hey, tell em your bags are packed, you are definitely "ready" This is probably just more hoops to jump through, so just jump through em and show em your serious about getting that transplant. I've always wondered if PKD people are treated different in this regard from other CKD folks because of all the complications that exist with PKD. Seems in your case it's true. Please keep the rest of us PKD folks posted on all this.

[Beachgirl32 in reply to RonZone]

thanks Ron

[BabyTee in reply to RonZone]

Ron,

I think the hoops we have to jump through vary based on our medical history and the transplant doctors/center. I was type 1 diabetic for 38 years when I was listed and had a stroke in my optic nerve because of low blood pressure, so technically a stroke. I was started PD after I was listed for transplant.

Beach Girl,

They said I had to repeat every test every single year. In reality I had to do monthly blood work and certain retests (colonoscopy, mammogram, echo- and electro-cardiograms and cardiac stress tests) once a year.

[RonZone in reply to BabyTee]

You are correct and thanks for mentioning that. Some have more hoops than others. A LOT more hoops. One thing I've definitely learned is that there are a ton of different paths for this journey. There is no one size fits all.