Elevated creatinine — six months post transplant

Had a fairly good first six months after transplant. No real problems except low BP and some electrolyte imbalances (e.g. low magnesium). Recently, had trouble with a low WBC and Nuetrophils. They removed the anti viral (valcyte) and everything returned to normal. However, they put me on Dapsone (e.g. anti-infective) and removed it after two weeks due to, I believe, dropping hemoglobin. Now that's getting better but my creatine rose from 1.21 to 1.35. Normally, my creatinine ranges between 1.15 and 1.25. My TAC was 6.1 (should be between 6-8). Since it has been unseasonably warm in Chicagoland over the past week, I thought I may have be a bit dehydrated but my Urinalysis specific gravity is 1.008. So they said I wasn't "dry" yet my urine was more yellow than usual. And, I didn't drink a whole lot on Tuesday morning/afternoon. I started slamming water Tuesday evening.

The creatinine of 1.35 has been my highest since the transplant. It was 1.33 at the beginning of November but slowly came down to my baseline (mentioned above). I'm just a little freaked out! Any thoughts? Or, thoughts from prior experience?

Also, should note that I've tested negative, repeatedly, for BK, CMV, and Epstein Barr.

TIA

Christopher

[Amyb93]

Hi there! Sometimes even though we aren’t dehydrated in the results, the amount of water you drank the day before can impact your results. If i don’t drink enough water the day before my creatinine goes to 0,8 and if i drink plenty of water its back to my 0,6-0,65 baseline. I’ve learned that if my team is not worried, then i should be either (easier said than done and must trust them 100%).

Best of luck and hope everything come back to your normal!

Amy

[Hidden in reply to Amyb93]

Dear Amy...Thanks for sharing your experience. See, that's what I thought too. I went in to todays labs with the idea that a) I didn't drink enough on Tuesday and b) I was extremely warm and sweaty on my ride to Chicago — it was 80 degrees and I was wearing a sweatshirt. I expected a higher creatinine. And, even prepared myself for it. But, when I saw the number I ended up "winding myself up."

Thanks,

Christopher from Yorkville, IL

[Amyb93 in reply to Hidden]

Its really easy ‘’winding ourselves up’’. We, as ckd patients, are use to getting bad new (i was) that the transition to transplant like can be overwellming to say the least. And a little fluctuation is also normal. Best of wishes!

[LisaSnow in reply to Amyb93]

I used to think drinking lots of water "the day of" helps too but nope! Only the day before counts😂

[Hidden in reply to Amyb93]

Amy...When I entered stage 3 CKD I declined quickly to ESRD. It took just over two years with every three month lab being, what seemed, a major jump in creatinine. It was very depressing.

Besides my wife trying to encourage me last evening I also talked with my Uncle who said: "we can choose to spin our wheels all day or decide just to keep walking and get to our destination."

[Hidden]

Hey Chris, I had my second transplant at the end of January and my creatine has been up and down like a roller coaster but it seemed as long as I drink a lot of water and almost cleanse my body 48 hrs before blood work that brings the best results, also and obviously watching your diet very carefully as well. When I had CKD I wasn’t as worried about my numbers but as Amy said once I got my transplant when I heard my creatine was going up it started to give me anxiety. Yet you just have to listen to your doctors and ( at least for myself ) put your trust in God that you will be fine when it is all said and done. Remember there is only so much that is in your control, just do what you can and leave the rest in God’s hands.

God Bless<><. Daren

[Hidden in reply to Hidden]

Hi Daren...Thanks for you reply — your awesome. Those are GREAT suggestions. God had his hand in every step of my journey in life and toward a new kidney. Before I went into surgery in September, I was blessed by our Catholic priest. I told Father Matt, "I'm afraid I'll die on the operating table." He said, "Remember Christopher, "Jesus has this!" Unfortunately, I suffer from anxiety and depression and they're rearing their ugly head at the moment.

Great advice about the diet as well!

Cool and best wishes with your new GIFT.

Christopher

[Hidden in reply to Hidden]

Hey Chris,

I totally understand where you are coming from the enamel is always ready to pounce on the weak but remember that just like your priest said “ Jesus has this. “. The Lord has you in the palm of His hand and will help you and guide you. If He cares even for the flowers in the earth think how much He cares about you and your well being. If you ever want to talk I would love to do so. Also I am originally from Chicago and truly miss it. Take care my friend and God Bless. Daren

[WYOAnne NKF Ambassador]

Please know that that first year your creatinine does tend to jump around...kind of like a roller coaster. I am 21+ years post transplant, but remember that first year even needing a biopsy of my transplant 2-3 times. It was never rejection. My Myfortic dose had to be lowered several times. That was the cause that was told me, causing my creatinine to rise. Now, if I don't drink enough water several days before my labs are drawn it can make my creatinine to rise. Strenuous exercise can do it too.Best of luck to you. Let us know how your next lab values are.

[Minna3 in reply to WYOAnne]

Ahhh.. this is the answer I was looking for. I just had a live unrelated kidney transplant a bit over two weeks ago. I worry a lot every time I did a blood test. 3 days after surgery, my creatinine went from 6.25 to 1.42. I was so happy. I got down to 1.05. I was so happy. Then the numbers went up to 1.18 and today 1.45. What in the world? My EGFR went from 7 to 62 to 44.

The numbers drive me bonkers. I understand my body is still adjusting to the new addition but after being worried all the time about the creatinine and EGFR levels prior to surgery, it seems like I am keeping that habit well and alive. Ick!

Seeing that to expect the numbers jump around a lot during the first year is a bit soothing.

[Hidden in reply to Minna3]

Hi Minna3...Congrats on the new kidney! How are you feeling two weeks out? I'm glad our stories can be of some help to you. Of course they don't replace the experience/wisdom of your own medical team, but they certainly can get one "over the hump" emotionally for a while. I found this forum a few days after my first spike in creatinine. The kind people of this forum walked me, figuratively, off of the edge.

Post transplant my creatinine has ranged from 1.02 to 1.35. It's just sort of seems to be a waiting gaining in order to determine your baseline creatinine. My kidney seems to have settled in on 1.15 - 1.21. Does that mean I don't worry any more? Absolutely not! I'm a long time worrier so that worry will not disappear anytime soon. I'm actually thinking I possibly worried as a baby. Yikes!

Best wishes,

Christopher

[Minna3 in reply to Hidden]

Thank you for your encouraging note.

I am feeling good overall. I have the expected prednisone side effects but I can cope with it. Just need to learn to make adjustments with meals.

My doctor called on late Monday afternoon. If my blood test tomorrow still reports creatinine around 1.45 more, I will have to do a biopsy soon to find out what's going on. They're also going to check my body's reaction to my husband's antibody.

I have chugging a lot of water since Monday hoping it will bring the creatinine down.

[Hidden in reply to Minna3]

Sending positive vibes your way 😊 remember, there is so much they can do to protect you and your new kidney. I know about drinking lots of eater. Lol!

[Minna3 in reply to Hidden]

Thank you!