going to active to inactive 😒 - Kidney Transplant

Kidney Transplant

3,267 members1,756 posts

going to active to inactive 😒

Beachgirl32 profile image
18 Replies

The transplant center called and told me they are putting me inactive it makes me sad because the cat scan they did they found a spot on kidney they aren't sure what it is. They don’t think it has anything to do with my polycystic kidney😬They call my kidney doctor wanting to do a ct with contrast he told them no they can do another test some mri because he want me to keep the function I have. I just now training on pd dialysis . so until they find out if this is anything I can't be active but they still want me to come in the 3rd for other stuff I need .She is waiting to hear back from the one doctor who she has to set up the test with so I want this test fast but I can't control it. Just pray that spot is nothing; so I can get back on active status 🙏🙏🙏

18 Replies
RonZone profile image

Oh wow, if it's not one thing it's another with all this! Especially after doing the wrong test and making you go back for another. Yes, saying a prayer that that "spot" is nothing and you get right back on the active list!

Beachgirl32 profile image
Beachgirl32 in reply to RonZone

thanks Ron yeah I just call the transplant coordinator and let her know that hey remember I have a clip in my head from aneurysm and I’m not suppose to have mri so if that the test I wanted y’all to be reminded . She said that is what my kidney doc wanted so now they are trying to find out what type of clip I said it been since 1998 I don’t recall at that time they said no mri so she trying to contact the neurosurgeon who did it see if they have records from that long ago.

RonZone profile image
RonZone in reply to Beachgirl32

Yeah, we think our docs all communication, look over our past records so they are very familiar with us and can make accurate calls from us based on all that, but NOPE! It's pretty much up to us to keep them straight!

Let us all know how your PD training is going when you have half a sec.

drmind profile image
drmind in reply to RonZone

When docs see 50 to 70 patients a day, every day during the week, who has time to read records? And, it will get worst as there are doctor shortages in all specialties. Best to stay alert and advocate for yourself.

drmind profile image

Sorry to hear this. Sometimes you just can't catch a break. But, prayers and positive thoughts are going out. Focus on your training and you'll get thru this. Keep us posted and keep in touch with Ron. He knows all about this darn training. Best always.

RHOC profile image

My prayers are with you. Test result waiting can be very nerve racking, I'm sorry

Seanthesheep profile image

Hi Beachgirl,

I had the same problem. Just when I was to be listed they referred me to urology. Took almost a year to get through. Now happily transplanted so don’t lose heart. Good decision going for pd. I had two easy years on pd then had to go onto Heamo . Not nice. Good luck. Sean

RhenDutchess123 profile image

Sorry to hear that...but please know my Prayers and Heart are with you as you are going through the "Rocks" along the way of your Kidney Journey

Jamok profile image

ugh Beachgirl I know your pain! My CT revealed a ground glass nodule on my lower lung and the follow up revealed another small 3 mm nodule and I was made inactive. The kicker is the radiologist isn’t worried about it and I went to see a pulmonologist and they’re not worried about it but they still need a sign off from an oncologist. Meanwhile, I wait because it’s all getting done at a snail’s pace with very little communication from my center. My GFR is low like yours but I am not training for anything yet which makes me nervous, but my nephrologist thinks I can hold off because I am so close ( but yet so far,😬) hopefully yours goes faster than mine and that it is nothing but a shadow.

I’ll keep you in my prayers, J

I’m doing 1000 piece jigsaw puzzle while I wait to pass the time And take my mind off things because it is maddening.

EchoStorm profile image

Did your nephrologist inform you that you don’t lose your spot in line going inactive?

Beachgirl32 profile image
Beachgirl32 in reply to EchoStorm

yes they told me I still accrued time

rabbit75 profile image


Darlenia profile image

Hang in there. It's not unusual to go active to inactive and back to active relatively soon. My hubby was placed on the inactive list twice over a year's time. Interestingly, he was only back on the list for a few days when he received "the call". So I suspect you'll be cleared soon and hopefully a new kidney will be on its way to you shortly thereafter. Keep the faith!

lkhenderson profile image

Praying for you! While you wait, please consider any and all people you know and even one’s you don’t know yet for a LIVING donor. Anyone that is willing to donate either to you or for you (a swap exchange). This will give you something to focus on and is more within your control while you wait. You will still have to be cleared to receive a transplant but at least you work on other donor options while you wait. Good luck to you.

Parkerbarker profile image

That is weird pkd have tons of cysts so what should one spot nake a difference.if new kidney put on that side that old kidney has blood supply stopped to it as everything transferred to new kidney so even if cancer which imho i doubt,that was stop blood supply yo tumour to woukdnt it?

Beachgirl32 profile image
Beachgirl32 in reply to Parkerbarker

yeah that what I said my kidneys are full of cyst are they sure it not a cyst. They were so deadest on me getting more test . They could not find any place where I was not allowed to have mri I told them the doctors told me no. Then I found a letter after I did lots of searching from my neurologist to the transplant center stating yes he think I’m a good candidate for a kidney transplant and in that letter it said no mri allowed or anything cautery with my neck vagal nerve cause I have a vagal nerve stimulator. Well the transplant team said they can’t find the letter I said well I found it in my neurologist portal and it was to you on may 7 2021 that not that long ago. So them I told her I can screen shot it in my portal and email it to you. So I did. Then later that day I got a call ok we talk to the urologist and he said he will do another cat scan in three months to compare. I said well am I active again she said they can’t make me active until in for all the yearly meetings I need so supposedly on March 3rd when I go I will be active.

So to me the spot in question can’t be so bad that they will make me active that soon.

horsie63 profile image
horsie63 in reply to Beachgirl32

sometimes I think they just flop around and look for any reason to deny...like that stupid cocaine positive I had. I wonder how many people just say screw it and give up.

ArtgirlZ profile image

Hi. I’m so sorry this is happening to you.

I was moved to inactive about 6 months ago. On my last yearly scan they found something with my heart that may or may not be anything. The transplant cardiologist decided I need a heart cath done before I can go back active. However he doesn’t want to do it now , until 1 of 3 things happen. 1-I go on dialysis. I’m close but don’t even have a port yet. A cath could push me into dialysis so that’s not an option at the moment. 2- I have a cardiac event. 3- I am skipped over several times for getting a kidney.

The kicker is I saw my cardiologist shortly after. He doesn’t think I need one but will do one if they need it. He also said he doubts they will find much if anything! But here I sit, inactive and waiting.

I’m praying they don’t find any and that it can happen soon. I’m with you.

You may also like...