Kidney Transplant: Does your creatinine bounce around?

Hi @mariags 😊
My understanding is that some blood in the urine and function decline post kidney transplant can be caused by things like a arteriovenous fistula post biopsy, etc.
The transplant team is going to identify and confirm the problem during tomorrow's CT.
I am so happy he is scheduled for tomorrow! What time is his CT scan?
When I had my 4 month anniversary protocol biopsy, the needle stab caused a post transplant arteriovenous fistula in the kidney. It's currently not causing any problems so it's "on watch".
If problems start like kidney function decline or blood in the urine, they will perform an embolization of the arteriovenous fistula that was created as a complication of the biopsy. The CT tomorrow will show if that's the problem or something else needs a small fix.
Please let your son know that these types of things happen during the transplant journey and there are definitely good solutions.
I know it's very scary, but after three years post kidney transplant, I have tried to teach myself to not overreact each time, (but I still get upset every time there is a new infection, fistula, upsetting lab result, etc). I totally understand that he gets frightened. So far, on my journey, there have always been successful solutions along the way and I think your son will have the same experience!
The important thing is to identify the problem and hop on the solution, like the CT scan tomorrow.
Please keep me posted as soon as you get the CT scan results!
Please let your son know that every day the transplant team deals with these issues very successfully.... It's what they do! 😊

Hi @mariags I was thinking about you and your son all day. Please let me know if he received his CT scan today and if the report is now available?

Hi we returned home at 6pm from the ct scan.
doctor called us at 9pm to tell us that they have identified the problem and have a solution.
i was not on the call with my son. they explained to him that his surgeon will need to do a procedure. he is going to try and schedule it asap ... but as it is friday night... it will go to next week. he will keep us posted. my son was not too sure of the explanation... just that the nephrologist said it is a plumbing issue! my son things the doctor said " Nephrostomy Tube" to be placed to keep the tube open. Once we looked it up... we think that it will be a bag... and hoping it is temporary. we are not sure exactly... but we are for now grateful it's not rejection or infection, cmv. We will learn more I'm hoping on monday and i will keep you posted. thank you so much for sending such a heartwarming message and help us put things in perspective. thank you for your thoughts and well wishes and sharing your experience. it is very comforting I will keep you posted as we learn more .... hopefully early in the week... have a great saturday...maria

Hi @mariags 😊
I am so happy to hear that the doctor called the same day as the CT scan!
I am sure everyone in your family is super relieved to know it's not rejection and it's not infection.
The team will work on the "plumbing problem" to make sure there is good urine flow with no back-up into the kidney.
As you probably know, when a kidney transplant is done, everyone starts with a urethra tube that is normally removed by a urologist a few weeks later.
So, the team is very aware that good urine flow from the transplanted kidney is important (and inflammation can occur during this process).
I am sure that after they solve the immediate blockage problem with the nephrostomy tube, they will work on whatever is causing the blockage (or probably it's just inflammation that will naturally resolve after a couple of days or week with the tube).
Anyway, I am happy to hear that a minimally invasive procedure will protect the kidney.
Please keep me posted on how everything is going next week. I am very hopeful that your son is now comforted by knowing that everything is going to be okay.
It's scary to go through this stuff each time a challenge arises...(the unknown).
And then MEGA comforting when you hear there is a solution and everything is going to be okay.
....Feels like an emotional roller coaster sometimes!
These transplant doctors really know their stuff so your son can have confidence that it's not the first time they have seen these issues and solved these problems....All will be well.
BIG Hugs to you, your son and husband ❤ Talk to you next week, enjoy your weekend knowing everything is going to be okay.

Hi, @mariags. I am happy that you have connected with @hello1234.
I hope that your son's procedure will provide the treatment that will result in his return to recovery from transplant surgery and allow him to proceed toward a new normal life. None of us transplant patients ever want another surgical procedure, but in truth it dose occur.
As a patient, I have been 'worked into' the schedule on several occasions. I will also be thinking of your son tomorrow.

thank you... i am so touched by complete strangers wishing us well and thinking of us and sharing your stories... it is so humbling!
hopefully they will contact us in the next day or so with a plan to move forward.
i will keep you all posted.
take care, have a wonderful Monday!
maria

@mariags - The beauty of Connect is that we can connect with people from all over the world from the comfort of our own homes! This is where we are able to support each other by sharing our experiences. I feel that I can safely say that every transplant patient, family member, and care giver "gets it" - understands what you and your son are feeling because we have been where you are with the uncertainty and fears and procedures.
I received my transplant (liver and kidney) in 2009 at Mayo Rochester.

Maria, I'm sending a virtual hug.

Hi @mariags 😊
I am just "checking in" to see if your son had the nephrostomy tube procedure?
Did the doctor let you know "the plan"....how long the tube will stay in before being removed, does he feel the problem is inflammation and it will resolve within a few days of the tube or is there another fix that will be needed to repair the "plumbing problem"?
I hope all is going as planned and this temporary procedure will solve the issue for your son.
It will be nice to finally get to the point when you and your son can stop being on high alert and get back to a calmer normal. I say that about myself all the time.
Please update when you have a free moment on how things are going. Love to you, your son and husband ❤

Good morning, we had both the nephrotomy tube and a double j stent put in yesterday afternoon. They did not tell us of a plan yet. it was an interventional radiologist that did the procedure. we return Monday and hope to learn more then. what is concerning to us right now is the color of the urine which is quite red. they told us it should get better to a pinlkish by the end of the day today,,, but this is making our son and us very nervous; he did not sleep at all. we have a nurse coming in this afternoon to help with the flushing of the tube. this is not easy...any suggestiion?

Good morning @mariags 😊
When I had my kidney transplant, the stent caused blood in my urine too. It's very, very common (and scary!).
I think most kidney transplant patients will agree they had that "red to pink" experience with their urine bag too.
Remember, just a few tiny drops of blood from the irritation of the tube or stent (and the placement procedure) can cause the drops of blood to look like a huge amount in the bag....I was very scared too, but my nurse explained that it was just a tiny amount of blood turning the bag pink and it will improve. My urine bag stayed pink until the catheter was removed three days later. (My nurse kept reminding me not to worry).
Please remind your son to stay hydrated and sip liquids throughout the day. It's important to keep things flushed, keep his kidney happy and help with the healing process from the procedure. He shouldn't overdo the hydration, but an 8oz glass every hour for eight hours is probably a good rule.
(Also, not to overdo his physical activity. No soccer games today). Normal activity is fine if the doctor said it was okay?
If your son stays well-hydrated, the bag should turn from red to pink by tonight.
"Pink" just means a few drops of blood from the irritation and is nothing to worry about. The "red" is normally caused by the initial trauma of the procedure and normally calms down in 24 to 48 hours as it heals.
I am happy the nurse will be there to double-check everything, flush the bag, and assure that everything is normal.
Please keep me posted today or tonight when the bag color improves and turns from red to dark "pink".
Maybe set your phone or watch alarm and hand your son a nice drink of water each hour to help flush his "plumbing system" ....and the bag will be pink soon! 😊
Sending love and BIG hugs to your son, you and your husband. Keep me posted on the progress! All will be well, you will see.