Rejection?: Hi everyone. I'm stressing... - Kidney Transplant

Kidney Transplant

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Rejection?

Alfredmynewkidney
Alfredmynewkidney

Hi everyone. I'm stressing out a bit. My creatinine increased from 1.0 to 1.3 in 1 week. Trying to get an allosure test but it's a holiday weekend. Hope I'm not rejecting. I also might have pain over my kidney... not sure if it's all in my head. Thanks for reading.

57 Replies

That’s normal, my creatinine fluctuate up and down a little bit all the time and I’m two years post transplant, drink plenty of water and try not to stress.

Thanks for replying. My transplant team is concerned so that makes me concerned! But trying to relax and enjoy the holidays. Will get allosure drawn on Monday. Hopefully with good results!

They will have a fix for it. I had a rejection my second month and they were able to stop it with meds. I’m good now. Best of luck and glory be to God that it’s not a rejection.

Dear Alfredmynewkidney,

Your Creatinine increased from 1.0 to 1.3, in a week.... Tell me had you had Breakfast before the Second result? Maybe a Cup of tea? Even a Biscuit? This is a TINY increase and your Daily Fluctuation WILL be Far higher... I promise you that! You could, quite honestly, get this 'Kind Of Increase- eating a bag of crisps (maybe two).

I don't know if the pain, 'over' your Kidney IS Real, or not, But- if I were you- I'd Talk to your Transplant Team. They, I'm quite sure, will put your Mind At Rest Alfred- do Mention this 'Pain' though. Don't worry, my friend, you will be Fine.

Have a Great Christmas...

AndrewT

I have talked to them... they are the ones that are concerned. It is a 25% increase. I wasn't worried until they were! I did not eat before the test. Oh well. Guess I'll wait for the allosure test. It shows if you are in rejection

Try to not worry over the holidays. You will.be repeating the lab again I am sure, just wait until you have more data. Merry Christmas!

Creatinine is very dependent on hydration so if you're not drinking as much water as usual you might increase it and see if that helps. Pain over the kidney is pretty normal as well, some people have that for their entire lives after transplant.

I would follow up with your doctor but I had my transplant this past August and my creatinine level goes up and down. Between 1.76 to 2.19. So far doctors have said its normal

Mine has been 0.9-1.0. Hopefully nothing. I wouldn't be concerned but my team was concerned! Ordering more labs but can't have them done until next week... closed for the holiday!

I've been thinking of you. Do you have results yet?

I believe you will be fine. My creatinine jumped from 1.0 to 1.5 and I thought that was it. The next couple of tests it went back to normal. Then, I thought I had all these pains around the kidney. Try to stay calm. Use deep breathing. I know it is scary.

My creatinine has fluctuate on many an occasion. I agree with everything that has been said here and it often boils down to hydration, which can be impacted by our diet during the day or two prior to labs.

I drove my docs nuts once when my creatine bumped up right after the new year, many years ago. While some would stress out, my doctor looked at the history and discovered any time I was in the clinic during the months of January and February my creatinine would be elevated. I wasn't thirsty as those are dry months (even when snow covered) here in new england compared to humid summers when the thirst factor kicks in naturally. Moral of my story was hydrate, hydrate and hydrate some more. Glad you are checking it out - that is good, and hope it is such a similar solution. It took me about 15 years to get it into my head about the hydration which has made the last 24 years easier to deal with the transplant and my health.

Stay well, be safe and have a Merry Christmas!

Thanks for commenting! Hopefully it's just a small bump in the road. Feeling better about it today. It was my team's concern that got me worried!

WYOAnne
WYOAnneNKF Ambassador

I don't blame you for being worried. I would be too. I went through that the first 18-24 months after my transplant. My creatinine fluctuated and even had 2-3 biopsies of my new kidney. It was never a rejection. The doctors would repeat the lab and 9 times out of 10 it was back to where it should be.I am living well 21+ years post transplant!

Let us know how you do.

Take care and stay safe! Merry Christmas

Thanks! I'm only 8 months post transplant. I have labs every 2 weeks. My creatinine is always 0.9 to 1.0. So it was an increase. My previous allsosure test was the lowest it could be. So I'm anxious to have it done again...it shows if there is rejection. If there is then the next step would be biopsy. I was a CMV mismatch and has soon as I stopped the valcyte after 6 months I got CMV. I've been being treated for that but concerned that could have put me into rejection....CMV can be dangerous for my kidney.

What was the range of Allosure results you have been getting?

0.16...I was told that was pretty much the lowest level. That was back in May.

Yes anything less than 1 is how they define "no risk". Is your donor a living donor? How well are your HLAs matched to his/hers?

It was a deceased donor. Not sure on b the HLAs. I know it must have been close. I am highly sensitized and they told my l me it would be 3-5 year wait. It ended up being less than one!

Oh why are you sensitized? Did they detect DSA in you post transplant?

The only reason they can think of is my 3 pregnancies. I've never had a blood transfusion or anything else that could cause antibodies

Blessing to have three children! I.know it is always scary to think about "what could go wrong" but it sounds like your care team is watching you closely and if needed, treatments are available. Creatinine of 1.3 is an excellent functioning number, so stay hydrated and happy. Try not to overthink the numbers!

I am blessed! I wasn't worried until the team got concerned, but I think they are just being proactive and that is not a bad thing! So I'll just relax, enjoy the holidays and wait to see my next labs

WYOAnne
WYOAnneNKF Ambassador

To this day, 21 years later, my creatinine is 0.9 - 1.1. Has been very stable the last 15 years.I too had never had CMV, and my donor had. I still have never had it, but every time over the years I would run a fever, they would check for it.

Prayers that all is well!

LisaSnow
LisaSnow in reply to WYOAnne

You are a success story that I hope for everybody including myself!

WYOAnne
WYOAnneNKF Ambassador in reply to LisaSnow

Thanks so much! How far are you out from your transplant?There have been a lot of bumps in the road...but my quality of life is everything!

Merry Christmas to you and your family!!

LisaSnow
LisaSnow in reply to WYOAnne

Just a hair under 18 months! Still a "newbie"!

WYOAnne
WYOAnneNKF Ambassador in reply to LisaSnow

Take care of yourself!!!The person that wrote in a couple days ago, 23+ years post transplant, caught COVID and was asymptomatic...and is losing her kidney, really put the fear of God in me.

Am taking all precautions!!!! Sometimes, no matter what...

LisaSnow
LisaSnow in reply to WYOAnne

So sad to hear about the infection.... I am eagerly waiting for my vaccine and yes, even after vaccination we should all continue to mask-up and be careful.

You are such a hope !!! Thank you .. your words are healing. Can you tell me when doctor say, one can resume normal activities after transplant, does it include biking and running? Tell me about the quality of life and how you keep yourself? It would be great for people to hear who are on this journey or getting there. I am 50 years at 4+ stage and concerned.

I had my transplant 8 months ago at age 53. I'm back to work full time without physical restrictions. I go jet skiing, bike riding, lift weights ect. I had to go slowly after transplant. No lifting over 5 lbs for first 8 weeks. 10lb for the next 4. But after 12 weeks I did not have restrictions.

WYOAnne
WYOAnneNKF Ambassador in reply to Live_Positive

I was in my late 40's when I had my transplant. I was able to go back to work full-time. I did return to bike riding. We love the Mountains and moved to Wyoming in 2016. My husband and I did a lot of traveling, before COVID. Have been to Europe, Mexico, Caribbean, Canada and visiting friends all over US. My husband was in the Air Force for 25 years so have lots of friends from those days living in South Carolina, California, Texas, Kentucky, etc.

Because of my transplant I was able to see both of my daughters' marry and have my grandchildren. Now I can visit them in Virginia and Missouri.

I am a volunteer for the NKF as an Ambassador on this site and as a Peer Mentor. I am also a volunteer and speaker with the Colorado/Wyoming Donor Alliance. I try to inform the public of the importance of organ donation by telling my story.

At 21+ years post transplant I hardly think of my transplant except to take my meds and have labs done quarterly. I correspond with my donor's family a couple times a year. I have a picture of my 16 year old son, my donor. I am so grateful and think of him so often.

We are already busy planning our next trip, once we both get the vaccine.

Best of luck to you with this new year!

Have fun and enjoy your 2nd chance at LIFE!

Thank you !! You are an inspiration!! ...Your story gives me hope my son is 14. I wish and pray to be like you !!!

LisaSnow
LisaSnow in reply to WYOAnne

What a success you have had, congratulations! Did you mean your son was your living donor 20 years ago?

WYOAnne
WYOAnneNKF Ambassador in reply to LisaSnow

No, I mistyped...my donor was a 16 year old boy, Ryan, that died after being involved in a car accident. So, I have proved the doctors wrong when they gave me the statistics that a deceased donor kidney had a life expectancy of 10-12 years.Stay well!

LisaSnow
LisaSnow in reply to WYOAnne

Happy that you are an outlier!

It's so easy to freak out over anything. I do sometimes. I think such a small fluctuation is OK. Drink lots of water and see what the next blood test shows. Good luck.

Merry Christmas and have a worry-free celebration!

Merry Christmas to you!

I’m not sure how long this wonderful medium has been available to patients who suffer from chronic kidney disease, but reading the replies from you guys and how knowledgeable and encouraging they are.....I wish I’d been part of this group when I was on dialysis 30+ years ago and after receiving my transplant.

Although every patient’s case varies, I remember my creatinine numbers fluctuating in the beginning of my transplant, and continued to do so. In my experience, your Transplant Team will watch your numbers very very closely which is so good! I also fund that “hydration” can definitely affect your creatinine level. Overtime, I realized that my lab work results were playing an important role in my life and a cause for much much anxiety also. You have the right attitude,.....you are compliant with your meds and you keep that wonderful gift of life hydrated. These are areas “we can control.”😊

Let tomorrow take care of itself... LIVE each day in the moment! ENJOY every minute! Happy Holidays!

You will be just fine❤️

My levels also jump around a bit. My rule of thumb is -if my transplant team is worried, then so am I. DRINK MORE WATER.

They are worried... that's why I'm worried!

When will you have your labs checked again?

I was trying to get them done this week but the holidays messed that up. I'll have to wait until Monday. 😔

I did the same by postponing lab and just relaxed for the holidays! Also didn't want to risk covid infection by going to the lab. I usually plan ahead so maybe next week.

My creatinine is 1.9 I also have pain over my kidney sometimes been like this for two years

LisaSnow
LisaSnow in reply to Randy1805

What was your best creatinine since the transplant? I think a stable creatinine is the best condition for us all .

Randy1805
Randy1805 in reply to LisaSnow

My best creatinine level was probably one point five now I am 1.9 been this way for 4 years. But it's normal for me that's my level 1.9

LisaSnow
LisaSnow in reply to Randy1805

Glad you are doing well!

Randy1805
Randy1805 in reply to LisaSnow

Thank you Lisa hope you're doing well too

Today is the day. Finally getting my labs done!!

How were your labs?

They were awesome! Next time I won't get so stressed. I initially wasn't stressed until my Doctor was worried! Oh well just happy that I'm not in rejection! Thanks for asking!

That's great news! I greatly empathized with you. I'm a little over 2 yrs post-tx and doing great, but still get a bit nervous about my labs - as well as going in for my labs these days given covid here in southern California!

How did the number look? Do you feel better?

It was 0.8. Really good and allosure was less than 0.12. So very good. I see the Dr next week and I'm going to tell him he stressed me out! But thakful all is good

That's a deep drop! You must be responding very well to the treatment. Glad you can rest stress free now!

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