creatinine question

[MAV86]

Did any of the donors on here have their creatinine elevated after kidney donation and if so for how long? Mine seems to be stuck where it was right after surgery 9 months later.

[vegiedonor]

According to my surgeon it is normal for your creatinine level to double after surgery and then drop somewhat. Your level may never go back down to what you had before or I've heard that it may actually be better. In my case I'm higher than when I started but not that much after a year. Also, be aware that eating animal proteins will elevate your creatinine and stress your remaining kidney along with salt. Drinking more water per day helps lower your levels.

[MAV86 in reply to vegiedonor]

Thank you, I drink a ton of water and don't eat to much animal protein. Hopefully it will go down we will see at my one year in a few months.

Glad that you are well!

[Zippy1962]

Hi Mav, donated a kidney October last year and my creatinine has been rising slowly since then well more than doubled. However other than a bit of a lack of stamina (that could be age related I reach the big 60 next year), the odd off day occasionally, not much has changed and the docs don't seem in the slightest concerned. I have been told that it could be 18 months before it stabilises never mind going down! Got my 1 year check in a few weeks will keep you posted. In the mean time stay happy you are definitely not alone with the worries, the surgeon who did my op I trust completely he has done hundreds so I figure if he's not worried I'm not going to be either!All best

Gray

[MAV86 in reply to Zippy1962]

Thank you for your response. My PCP is the one that was concerned the Kidney donation hospital reassured me that it was normal. I drink a lot of water and exercise daily so hoping it will go down a little bit. I am exactly where I was the day after surgery 9 months ago. Glad that you are doing well. Yes, age always seem to have that effect on our energy levels.Much luck to you.

[scotlap]

Hello! My creatinine level went to 1.56 immediately after surgery but now four years post, it has dropped to 1.29. It has dropped steadily since the surgery, and so if you're concerned I'd discuss that with your doctor and just keep drinking water, exercising, and doing what the docs say.

[MAV86 in reply to scotlap]

Thank you!

[Crawfork4]

It’s been 11 years since I donated and my creatine has pretty much sat at 1.3. That is my new normal. I always make sure I’m well hydrated before I go in to get tested. I also found that if you have to have any tests with dye, I make them for afternoon, so I have time to drink a lot of water, and of course a lot after to flush it all out. Water is the key😏

[MAV86 in reply to Crawfork4]

thank you that is exactly what mine is 1.3. Glad you are well!

[Dlphnlvr78]

Hi there, I just got my one year labs back and my creatinine level lingers around 1.0. It was at 1.04 at 3 months and .97 1 year, that I just completed. Prior to donation it was around .75. I was told it would always be a bit higher than when I had 2 kidneys. I hope this helps.

[MAV86 in reply to Dlphnlvr78]

thank you! I have my one year in December. So glad that yours is better. Mine was 1.41 after the surgery and still is the same I don't know why it will not go down but praying it will soon.

[Dlphnlvr78 in reply to MAV86]

Your team should let you know what is a good creatinine level for you. And for it to be stable. Did you compare it to your pre op level? Your one year is coming up, congratulations.

[MAV86 in reply to Dlphnlvr78]

Hi Yes, it was much lower like 0.86 before surgery. Yes one year on December 8th. When was your surgery? How are you doing ? Thankyou!

[Dlphnlvr78 in reply to MAV86]

I’m sure your team will discuss it with you at your 1 year labs. My surgery was Oct 13 2020. 😃😃I’m doing pretty good. Still do not have all my energy back and have GI issues but with covid and all not sure if it’s just related to surgery. How are you feeling outside of the numbers?

[MAV86 in reply to Dlphnlvr78]

I feel the same as you. Not as much energy , I had a bunch of GI issues and went to a homeopathic doctor, he gave me some enzymes and probiotics and I feel almost normal now in that way. Who did you donate to? I donated to my husband. It really is a long recovery but well worth it. Hoping that you get better everyday.

[Dlphnlvr78]

Good morning,The GI issues seem to be more common then I was told. Yes, long recovery but so worth it. I donated to my brother. My dads wife (mother-in-law) donated (indirectly) on my dads behalf 2 years ago in voucher type of system. She has a lot higher creatinine then myself, some GI issues still, and tenderness 2 years later. On a side note my brother is doing amazing (we were a 100% match). I always give him grief, in a funny way, cause his recovery has been so much smoother. How’s your husband doing?

[MAV86]

Wow what an amazing story for you and your dad. So happy that your brother is doing well. My husband has been having some issues that they are trying to figure out. They think that he may have TMA from his medicine which means they may have to do some switching around of this medicine. But his recovery was way easier than mine as well. What kind of GI issues do you have? Were you cut on the bottom of your stomach? I was cut very low. My incision still bothers me and find myself having to urinate very frequently still. Hoping that will stop soon as well but don't know. Thank you for all of your feedback it is nice to speak to someone that has gone through the same thing.

[Dlphnlvr78 in reply to MAV86]

Sorry for the delay!! Yes, it is definitely nice to speak to someone who gets it and has similar experiences. I’m sorry your husband is still having issues. I have heard they are constantly watching and adjusting meds. What was your HLA antigen match? I heard that plays a role in the meds. As far as my GI issues they are still uncertain of the direct cause. I’ve had an endoscopy, colonoscopy, multiple CTs and ultra sounds. I just kept getting meds but no reason. I switched my eating habits and don’t eat late at night and take stool/fiber stuff and probiotic everyday. Which has been the most helpful. Yes I have 3 laparoscopic cuts down by left side and a big cut where they extracted (like a c-section). I don’t urinate any different and not really any tenderness (unless I press really hard). Mines just bowel movement issues still.

[MAV86 in reply to Dlphnlvr78]

HI Good morning sorry so late. We were a 4 antigen match. They think that his body is rejecting the medication not he kidney which is hard because there are only a few types of medications so praying the the one they switched them to will work.

I'm so sorry about your digestive issues have you considered giving up all gluten and dairy? that has helped me because I was having digestive issues as well. I also had a bout with hives for 5 months as well. It's been a rough year I would say. I hope that you find some answers and are better. If you would ever like to talk please let me know I can give you my number. Please take care.

[Dlphnlvr78 in reply to MAV86]

Hi,I’m not always on this site as well, hence some of my delays.

I hope your husband kinda the right anti rejection med for his body. That has to be tough! My thoughts are with you both.

Yes, I have thought about giving up dairy, cause I don’t eat much of it anyways but gluten. I love gluten. 🤦‍♀️ I know they are coming up with more able gluten free stuff but that’s a tough one for me.

It’s always nice to talk to someone who understands. I don’t mind giving you my number as well. I’m Brandi by the way.

[deeliciousd]

It has been 6 years and my levels are elevated more each time I have them checked. I stay exhausted. I try to drink plenty of water and exercise but nothing seems to help.

[MAV86 in reply to deeliciousd]

I'm so sorry that has to be hard. I will find out my levels for one year next week. I'm a little afraid and praying for good news.

Take care!