1. < Transplants

Kidney Transplant: Does your creatinine bounce around?

Posted by hello1234 @hello1234, Feb 1, 2023

Hi all,
I am a post kidney transplant patient. My creatinine has been pretty reliable and steady. In August, five months ago, I was diagnosed with BK virus and my immune suppression was reduced. I am taking 250mg bid Mycophenolate and 6mg Envarsus XR (Tacrolimis). Currently, I do not take Prednisone. My last labs showed an increase of creatinine and a lower GFR. Has anyone experienced something like this?

Interested in more discussions like this? Go to the Transplants Support Group.

mariags | @mariags | Apr 22, 2023
In reply to @hello1234 "Good morning @mariags 😊 When I had my kidney transplant, the stent caused blood in my..." + (show)
@hello1234

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.

Jump to this post

thank you for your hugs... so appreciative. i will keep you posted.
i send you wishes of good health, laughter and love...
maria

REPLY
1 reply
hello1234 | @hello1234 | Apr 23, 2023
In reply to @mariags "thank you for your hugs... so appreciative. i will keep you posted. i send you wishes..." + (show)
@mariags

thank you for your hugs... so appreciative. i will keep you posted.
i send you wishes of good health, laughter and love...
maria

Jump to this post

Hi @mariags
Is the urine bag a little less red this morning? Was the nurse visit helpful yesterday? I am hopeful that you and your son are starting to see some improvement towards more of a dark pink color and away from red? Please update whenever you can. ❤

REPLY
swankie | @swankie | Apr 24, 2023

Hi! I experienced a UTI for over 2 months. It effected everything! They had to reduce my mycophenolate and took me off lasic. My Creatine levels were climbing each time I went to clinic and BK was increasing. I started drinking more water and watched my labs. I’m happy to say that finally, my levels went down to 1.11. HAPPY DAY!!!! I just did what they said and took one day at a time. They know what they are dealing with. Keep the faith.

REPLY
1 reply
hello1234 | @hello1234 | Apr 25, 2023
In reply to @swankie "Hi! I experienced a UTI for over 2 months. It effected everything! They had to reduce..." + (show)
@swankie

Hi! I experienced a UTI for over 2 months. It effected everything! They had to reduce my mycophenolate and took me off lasic. My Creatine levels were climbing each time I went to clinic and BK was increasing. I started drinking more water and watched my labs. I’m happy to say that finally, my levels went down to 1.11. HAPPY DAY!!!! I just did what they said and took one day at a time. They know what they are dealing with. Keep the faith.

Jump to this post

Hi @swankie 😊
It's very nice to meet you! I am so happy to hear that after two very stressful months, your issues finally resolved! I agree with you that the transplant team really knows their stuff! It's amazing how they can navigate through these challenges so well.
I am a three year post kidney transplant patient. How many years ago did you have your kidney transplant?

REPLY
kfn57 | @kfn57 | Apr 29, 2023
In reply to @mariags "sorry... forgot to mention... it was a kidney tranplant. thanks." + (show)
@mariags

sorry... forgot to mention... it was a kidney tranplant.
thanks.

Jump to this post

I had a kidney transplant June 2019 at Rochester Minnesota, after only 6 months of being on the UNOS list. I’m thankfully never went on dialysis.
Yes my creatinine jumps around but what I have learned is the importance drinking water and how it effects my number. I will admit I can do better as I see through numbers.

REPLY
hello1234 | @hello1234 | May 3, 2023

Hi @mariags 😊
I have been thinking about you and your son. I am hoping that things are improving. Please update and let us know how things are going with the nephrostomy tube and the transplant team's plan to solve the plumbing issue. Is the tube temporary and will it solve the problem or is there an additional procedure needed?
Sending big hugs ❤

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 26, 2023

@mariags, It has been a few weeks since your son had the nephrostomy tube inserted and I'm wondering if the procedure was successful in resolving the 'plumbing' issue that the doctors had diagnosed. It is not a procedure that I am familiar with in my transplant experience, however as a kidney (and liver) recipient I am familiar with the complexity of our plumbing and the concern at seeing blood in urine.
How is your son coming along? Does the tube get removed? What is the next step for him and his kidney health?

@kfn57, I see that you are gong to be celebrating your transplant anniversary in a few days. June is next week! What will you do to honor the special day?
Here us a great place to read what others are doing, and for you to share your own idea for celebrating/honioring the special day:share your own idea:
- Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
.
@swankie, Please accept my belated Welcome to Connect! I hope that your "everything" that was affected by the UTI has resolved itself to normal. Those 2 months must have been l-o-n-g 2 months. It is interesting that I was experiencing some UTI symptoms at the same time as you posted, perhaps that explain how I missed your post. Anyway, I was started on an antibiotic based on the office urines sample, and then switched to a different antibiotic after the lab culture showed a specific bacteria was resistant to the first antibiotic. My transplant team at Mayo Rochester has requested that I get a urine culture in addition the dipstick urine test. So, this is a routine that my PCP is agreeable to adhere to. Has your kidney transplant team ever requested a urine culture when you have a UTI?
Congratulations on the Happy Creatinine Levels.

A TIP that works for me to get enough water is that I fill a pitcher in the morning and pour water from that throughout the day. That way I don't forget. My creatinine has been stable, so it might be what is working for me.

@hello1234, I hope you are okay. What is happening in your kidney transplant world?

REPLY
1 reply
hello1234 | @hello1234 | May 27, 2023
In reply to @rosemarya "@mariags, It has been a few weeks since your son had the nephrostomy tube inserted and..." + (show)
@rosemarya

@mariags, It has been a few weeks since your son had the nephrostomy tube inserted and I'm wondering if the procedure was successful in resolving the 'plumbing' issue that the doctors had diagnosed. It is not a procedure that I am familiar with in my transplant experience, however as a kidney (and liver) recipient I am familiar with the complexity of our plumbing and the concern at seeing blood in urine.
How is your son coming along? Does the tube get removed? What is the next step for him and his kidney health?

@kfn57, I see that you are gong to be celebrating your transplant anniversary in a few days. June is next week! What will you do to honor the special day?
Here us a great place to read what others are doing, and for you to share your own idea for celebrating/honioring the special day:share your own idea:
- Happy "Transplantiversary"!
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
.
@swankie, Please accept my belated Welcome to Connect! I hope that your "everything" that was affected by the UTI has resolved itself to normal. Those 2 months must have been l-o-n-g 2 months. It is interesting that I was experiencing some UTI symptoms at the same time as you posted, perhaps that explain how I missed your post. Anyway, I was started on an antibiotic based on the office urines sample, and then switched to a different antibiotic after the lab culture showed a specific bacteria was resistant to the first antibiotic. My transplant team at Mayo Rochester has requested that I get a urine culture in addition the dipstick urine test. So, this is a routine that my PCP is agreeable to adhere to. Has your kidney transplant team ever requested a urine culture when you have a UTI?
Congratulations on the Happy Creatinine Levels.

A TIP that works for me to get enough water is that I fill a pitcher in the morning and pour water from that throughout the day. That way I don't forget. My creatinine has been stable, so it might be what is working for me.

@hello1234, I hope you are okay. What is happening in your kidney transplant world?

Jump to this post

Good morning @rosemarya 😊
It's always wonderful to here from you! I am happy to report that my three year kidney transplant anniversary is coming up soon (in July!). Mayo Clinic called me to schedule my annual labs and visit. I think this is going to be a very pleasant annual visit since my normal list of "things to discuss" is very tiny. According to my last labs, CMV is negative, BK in the blood is negative, BK in the urine is still around 7,000,000 but BK in the urine does not damage the kidney. My AV fistula in my kidney created by the biopsy is quiet and not causing any function problems currently. My creatinine is back to stable. So, I am happy to report that "All is well with me and my wonderful new kidney"! (My only current stress is my dental issues, which is unrelated to the transplant). Is everything going okay with you too?

REPLY
View MoreView Less
Please sign in or register to post a reply.