suggestions, advice, help

[August1028]

I’m 3 yrs and 2 months post transplant my Creatinine increased to 1.4. I’m worried that I will have to return to dialysis. Is there anything that I can do to help? Can this number decrease?

[redpanda67]

Everyone is different. I have had my share of freakouts, breakdowns, and panic attacks because of my creatinine numbers. My creatinine typically ran at 2.5 for the first 5 years after my transplant, then it finally dropped to 2.0. It now hovers between 1.8-2.2. A single creatinine measurement, while important, should not make you panic. It's typically only when it continues to go up over time, or with additional symptoms of rejection that transplant typically gets concerned. I tore into a ER resident one time because she came in telling me to get ready to go back on dialysis because I was already heading into ESRD again. My creatinine was 2.8, I had been dehydrated and sick for a week, thus the reason I was in the ER. Take it one day at time and remember this is the reason you get blood work done frequently, so they can identify a bump and make changes if they need to. I wouldn't panic just yet.

[August1028 in reply to redpanda67]

you just don’t know how much your response has helped me! Thank you so much for the information it’s greatly appreciated, I for sure will take it one day at a time

[Darlenia]

That's a good number. My hubby's creatinine is almost always at 1.7 or 1.8 which I understand can be quite normal for those having only one functioning kidney. The best its ever been is 1.3. As years go by, I fully expect his creatinine will go higher. (He's almost two years post transplant right now.) For dialysis concerns, creatinine has to be a lot higher - I'm speculating around 4. And yes, one can get creatinine to decrease by drinking more fluids, not overly exercising, etc. Creatinine isn't set in stone.

[August1028 in reply to Darlenia]

Thank you

[AndrewT]

Dear August1028,

I could go On, and on, about Creatinine Levels, and their Relevance's- or lack of them..... OR I could say that My Levels have ALWAYS been 'High/ Unstable', and then tell you I'm almost Ten Years Post Transplant. (and yes they were, as bad, prior to Transplant too.

One of the Main 'Indicators' is how YOU Feel, in many ways Far More Critical, than Blood Results. I would, very definitely' Consult with your 'Team' ASAP, my friend.

Please know that my, indeed ALL, our thoughts are with you,

AndrewT

[August1028 in reply to AndrewT]

Thank you

[LisaSnow]

Unless your nephrologist said you have other evidence going on suggesting a rejection event, 1.4 is an excellent number and you should not be worrying about it.

[OperationKidney]

It can, but as other people have stated everyone is different. I know hydrating well can make a big difference, as can diet. If you haven't already mentioned this to your nephrologist I would recommend that as they might be able to give you more suggestions as to what can help bring that number down.

[ashok5085]

Buddy, keep an eye on your urine output, flow and any irritation etc. Immediately report any abnormality to your nephrologist. Monitor your creatinine regularly! It seems under control at the moment.

[Transplant314]

I am four years post transplant. My numbers fluctuate. 1.4 May just be your new normal. Keeping during plenty of water.

[Eyak1971]

Been there. Worry sometimes becomes a habit after transplant. You become so centered on numbers that you sometimes even hate to look at test results because they seem to control your feelings and produce anxiety. Take a deep breath and move on. You are not alone and if necessary go to counseling. I got so bad that I had to have a heart to heart with my kidney doctor on the phone when I was overwhelmed. Take care and you have made a good first step by reaching out on this forum.

[Jayhawker in reply to Eyak1971]

I was just thinking about this. Right now I go for labs once a week due to low WBC issues. Monday mornings I head in for labs before I take my anti-rejection meds. Then I wait for a little more than 24 hours to get the results. I keep hoping to see higher WBC count data, but it hasn’t pulled up above 3.5-3.75 yet. Ugh…

This morning I woke up thinking that I need to have a detailed conversation with my transplant team in my appointment later this week. Hopefully that will help lower the stress I’m experiencing related to the labs. Fortunately all my other data has been stellar.

Jayhawker

[Bunkin]

Creatinine fluctuates constantly. Try not to worry. My doctor says you can take it and 5 minutes later take it again and it’s different. They look at all your other labs too!

[Gardner-NY]

HI August1028, my husband had his transplant 4.5 yrs ago and for years now his creatine is 1.8 to 2.0 which is his normal range. His doctors accept this. It has never been lower during these years than this range. I wish you all the best.

[Razorback1803]

I've been tracking 1.4 very steadily for a few years now. My number actually went to 1.4 from 1.9 once I fully transitioned to Belatacept. My 5 year anniversary is coming up in August. You are doing great. Just stay hydrated.

[Hawk12]

Have you increased your protein intake recently? My creatinine went from about 1.2 to just over 1.4 after I started taking a protein supplement. That being said, they DID order an ultrasound and bloodwork to make sure that I was not rejecting (I am 18 months out from my transplant).

[Miracle3]

When my creatinine increased I was told to drink more water and it did help to bring it back to a normal range. I hope that your levels starts to get better and not have to go back to dialysis.

[Hydrangea2023]

Hi, had the same thing happen to me as I always check my labs, In my particular case my Dr explained yes, number vary even from the time of day blood work is done. My doctor wants a total exact 12 hr fast before blood work.

Additionally I had to journal what I ate for a month. I didn't think I was eating that much protein. Wrong. In my particular case I presently do not eat more than 8oz of protein a day. I learned to marinate tofu , mushrooms(wash all fruit/veggies in bowel with water & 2 ion vinegar ( have to wash and microwave to kill bacteria) and other foods.

Wow, it made all the different the following month. Creatinine, when down almost 2 whole points I learn to make bean and a pinch of turkey hamburgers(lots of seasoning) once you use low fat cheese and avocado you will be a happy camper.

Presently , only cooking 4 oz of meat protein and lots of salmon, tuna, pork tenderloin, Salads, soups, keep fruit salad in refrigerator for the week. 1 Scoop of Sherbet does the trick to satiate my sweet tooth. Tons of Boo Choy with 2 oz of protein. IT's endless.

Lastly this is off subject. Pleases be very careful lifting anything over 8 lbs I think I did by using large scissors for trees & bushes aand now I have a hernia in my small intestine which has to be surgically repaired soon.

. This is a serious warning to all transplant patients, Just because you feel good and want to do gardening or things around your home you have to be cognizant that you cannot jeopardize your health. Speaking for myself with my" I can do anything energizer bunny mindset is surrendering lifting heavy objects or vacuuming floors.

Those days are over. Best of luck!! YEs, that water bottle is your best friend, I understand it's a pain to have with you at all times, and to always have to be close to the bathroom, This is our life now. I also incorporate all kinds of juice and make fruit popsiles A pinch of cranberry, Blue berry, any kinds of fruit ( invest in a juicer) Again take care. Level will always fluctuate. don't be frighten. Take care

[August1028 in reply to Hydrangea2023]

I appreciate your response!

[sugabear]

How are you doing? My husband is dealing with the same thing right now. He is 15 months out from his transplant. All other numbers look normal, but his creatinine jumped from 1.4 to 1.8. His usual range is 1.4-1.6. They are making him do labs again in three days. We are hopeful it's nothing more than a fluke or a need for further hydration. You've received some really good responses here. Hope they bring you peace of mind.