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A new normal?

I'm wondering if any of you have had this experience.

I had a renal transplant 4 1/2 years ago.  I have not had any problems and my numbers have been remarkably steady.  My creatinine has generally been between 1.10 and 1.20 with my egfr anywhere from 50 to 60.  I've never had a rejection episode.  At my last annual appointment, my tx neph called me the "poster child for transplantation".

Back in August, my creatinine suddenly rose to 1.33 and my egfr fell into the 40s.  I contacted my coordinator who told me that this is not unusual in the summer as it is easy to become dehydrated.  She said she has a whole list of patients who she had been calling to reassure them of the same thing.  I told her that I had been working (and sweating) exceptionally hard clearing my property, etc., so I felt some relief.  I was complety asymptomatic.  I felt totally well.

The next set of monthly labs showed my creatinine at 1.46 with a egfr in the low 40s.  Panic began to set in despite the fact that my tx team was not unduly worried as they had set my "ceiling" at 1.6.  My BUN was elevated, but all of my other numbers (WBC, K, etc) were normal.

Because of my concern, I went back the next week for a creatinine only test, and the results were even worse but were still not 1.6.

I continued pushing fluid, and since I had completed my outdoors work and the weather had finally turned much cooler, I was hoping for better numbers at my next lab appointment with a new order for a whole set of tests.

Before the date of the labs arrived, however, my anxiety level went so high that my bp, normally so well controlled, soared to the point where my ligated fistula arm began to hurt.  I went to the ER (it was, of course, a weekend right after Thanksgiving), was treated for both anxiety and high bp and had a set of labs taken.

To my relief, my creatinine was back to 1.3 and my egfr was back into the mid 40s.  There was no proteinuria.  Pushing fluids as advised seemed to have helped.

I've just received this month's lab results, and my creatinine is still 1.33 with egfr still in the mid 40s.  My BUN is normal as is all of my other numbers.

So, my question is this (after all of this blathering, and thank you for reading this far).  Why do you suppose that after years of seeing my creatinine at 1.1 to 1.2, I've suddenly had a series of numbers at 1.3?  My tx team is not concerned one single bit.  I'm no longer concerned but am rather disappointed that this appears to be a new normal.  I understand that for a tx patient, there is absolutely nothing wrong with 1.3 especially as my other numbers are fine.  My kidney is working well enough which is really all that matters.  But still I am curious as to why this change in numbers that have been so steady in the past?

Have any of you experienced "a new normal" like this?

Thank you very much for any thoughts.  I appreciate your time.

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Replies

  • My apologies for bring up this topic again.  I'd really appreciate some support.

    I've just had the results in from my annual post tx labs.  It will soon be my 5th anniversary.  I see my neph next week for my annual appointment where we will discuss my results.

    To recap, my creatinine had been steady at anywhere below 1.2 now for several years.  In August of last year, it suddenly spiked to 1.33, then it would wobble anywhere between that and a high of 1.48.  Last month it was 1.24, and I was greatly relieved, but this month it is back up to 1.41. 

    There doesn't seem to be a "trend" as such, rather, there seems to have just been a spike that has persisted.

    As you know, the annual lab test is a big one that tests many things.  Fortunately, all of my other values are just fine.  I'm not spilling protein in my urine.  No BKV.  Hematocrit, WBC, calcium, PTH, vit D, phos, potassium, cholesterol, glucose and everything else is within normal range.  My bp is great.

    So, I don't know if I should worry or not.  On the one hand, it looks like my renal function has suddenly decreased but not enough to have any side effects.  On the other hand, my numbers have suddenly gone from very good to just "good".

    I am having a hard time being satisfied with that.  Maybe "satisfied" is not the right word because I don't have any right to complain.  In the grand scheme of things, I am fine.  I have a good quality of life.  I can do whatever I want.  I should be happy with that.  I have no right to feel otherwise.  But I am still confused and don't know if I should be anxious.  I'm sure my neph will say that all is well, and while she would be right, I'm still sad.  I feel a sense of loss, and I am very embarrassed to admit that.  I have so much to be grateful for, but I'm sitting here feeling scared.  No, I do NOT feel sorry for myself.  It's NOT that.  But it IS a bit of fear and uncertainty.

    If anyone has even the smallest word of encouragement, I'd be really grateful.  And I do apologize if I am sounding whiny and ungrateful.

    BTW, I am turning 60 this year.  I don't know if the mere fact of getting older has anything to do with this sudden spike in my creatinine, but there you go.

    Again, thanks to anyone who managed to read all of this blather.

  • Dear Moose,

    I had a renal transplant 4.5 yrs ago. For first 1.5 yrs, cretine lev remained bt 0.9 and 1.2. Then, it began to rise up to 1.70 last year. Since Jan 2017, creatine level has been between 1.2 and 1.50. My Tx Team says that it is just fluctuations in Cr. level, not rejection.

    I am sure your kidney  is functioning perfectly.

    • Thank you, Krishna, for your reply.  It's very interesting that your creatinine rose a bit over time and that your tx team was not unduly concerned.  That's exactly the reaction of my team, too.  They never suspected rejection and frankly, neither did I.  Thanks for your reassurance!

  • Hello!

    It seems that you are doing great! I always wondered about the creatinine. Mine increased every year. Started off with less than .99 and the last time I checked it was 1.78. I had gone up to 1.9 and had a biopsy with everything being normal. I tried pushing my fluids to nearly 21 cups of water one day and thought I was going to throw up bc I also wanted my creatinine to stay at the old level and not have new normals. I realized that sometimes increase dose of tacrolimus bumps the creatinine, and recently I found out that red meat had made my creatinine go up. I did a small experiment where I limited red meat to almost nothing and ate lots of pears. I heard pears were really good for your kidney function and my creatinine dropped to 1.27. I haven't seen those numbers in almost 3 years. Its been 5 years with my second transplant and I realized diet, water intake, med levels and time plays a role in kidney function.

    Stay warm and take care! I hope your kidney lasts for a lifetime~
    • Thanks!  My husband is a big read meat eater, but despite that, I don't eat much of it, but then again, perhaps I eat more than I realize.  I've never found eating a healthy diet to be any sort of burden.  I do like pears and am about to go to the store, so I will buy some.  I don't have much experience with them and am not sure how to tell if one is ripe, but I'm sure I can figure it out.

      My tac trough is right where it should be, but it is entirely possible that maybe with time and increasing age, my tac target should be a bit lower.  That's something I can discuss with my team.  Thanks for that idea.

  • Hi Mom,  

    Creatinine can fluctuate and a move of .1 or .2  IS "normal."   We had an extremely hot summer which is likely the cause. These numbers are affected by many factors (Hydration, medication, illness, infection and even stress,) and Tx teams use this reading to identify trends over weeks, rather than an instant read of kidney function.  Your normal WBC and other levels ruled out any active infection/rejection.

    A word about panic, which I still deal with somewhat, in almost two decades with a Tx.  You've had a very good run, without incident and that is a good thing.  This was your first "bump in the road" along your journey and with each bump you gain emotional armor/strength, to help if faced with an issue in the future.  Life with a Tx can be a roller coaster, remaining calm is a trait you will develop, over time.  A good rule to follow is if your Tx team is not worried, neither should you.  Avoiding stress should become a priority in life.  You acted on the issue exactly as you should have. 

    I am very glad your #'s are returning to normal and now that you are "better equipped" to deal with issues, I hope you will never have to again.  May you enjoy many, many years in good health.  

    • I appreciate your wisdom.  In addition to gaining "armor" at each bump in the road, you gain information and experience.  I absolutely agree that if the tx team isn't worried, then neither should I be.  My tx team wasn't "worried", but they WERE curious as to why all of a sudden my creatinine spiked.  They speculated that there was something different that I was doing, and they were right (a lot of heavy physical labor during hot weather), so I am glad they were dutiful enough to catch it in the first place, so I am grateful for that.

      All the best to you, and thank you to everyone that took the time to read my post and offer your time to reply.  Any more thoughts would be welcomed.

  • I think that all of us have different degrees of normal. And our 'normal' can change. For me, even though I've been typically lower for a while or higher for a while as well, my 'normal' baseline ranges between 160 and 180 (that's Canadian numbers, so 1.82 - 2.05). And I'm now over 14 years out. My suggestion is to simply be grateful for the stability you've had and keep an eye on things without white-knuckling it. Easier said than done, I know.

    The bottom line is that even a healthy person's baseline values will change over time. You are now nearly half a decade older than when you had your transplant. Things are going to change.

    So keep up a healthy lifestyle, try to stay happy, and enjoy your life and hope for the best. May you have several decades of continued health with your gift.

    • Thank you for your reply, Cora.  I suspected that our "normal" could change, but I have not had a transplant for long enough to experience such changes.  I did consider the notion that simply getting older could result in a "new normal".  I am over the initial panic and have gone back to being grateful and happy, but on a purely intellectual level, I am still curious as to why "normal" changes.  Thanks again!

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