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Coping with anxiety

This is not easy for me to write.  In fact, I had already written all of this out a few weeks ago, and when I went to press "publish", that's exactly the moment this site went down.  It has taken me this long to get up the nerve to post this again.

I am having problems coping with increased anxiety around the time each month when I get my labs done and then have to wait for results.  I have had my new kidney for 5 1/2 years and have had no problems.  I've been lucky.  But a year and a half ago, my creatinine suddenly spiked, going from the usual 1.17ish to 1.3ish.  My creatinine didn't go down after about 8 months, so my tx coordinator decided to have me in for a biopsy.

I have posted about this before and am only doing so again to give a bit of background info.

Long story short, the biopsy was cancelled at the very last minute.  After being up all night because of anxiety, and after literally filling that sleepless night with drinking loads of water (because my mouth got so dry as a side effect of my overly nervous state), when it came time to go to the hospital for pre-biopsy labwork, the results showed that my creatinine was back down to what was normal for me (1.17).  My other numbers were, and had always been, fine. At first I decided to go ahead with the biopsy, but just when they were about to site the IV, the surgeon came in and told me that an elevated creatinine alone was not good enough reason to do such an invasive procedure.  I ran out of there as quickly as I could.

That was in June last year, and since then, my creatinine is back up to between 1.2-1.3, but still my other numbers remain good.

However, that whole episode has smashed my confidence, and I find I am falling prey to anxiety about my numbers.

Cora has in the past been very vocal about not giving numbers more meaning than they are due, and while she is absolutely correct, I am still fearful.  I don't claim to be fully rational about this all of the time.

I know that feeling nervous around lab time is normal; it's part of being a tx patient, but the periodic intensity of those feelings has, at times, affected me physically.  I don't know what a panic attack feels like, but I wouldn't be surprised if I have experienced some of the signs.

I also know that in the great scheme of all things transplant, I am lucky and do not really deserve to be anxious, and that there are many people who are in a far more precarious situation.  I also am acutely aware that I should be more mindful of the grace in which I live TODAY and should not let anxiety erode my gratitude

I have talked to my PCP about this and now have a prescription for Xanax for when I deem it necessary.  I would rather find other ways to cope.

I am struggling a bit and would be very grateful for a few reassuring words

Thank you..

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  • Moosemom:  Take a deep breath and relax!  Most of us have all been there.

    What can you do if the kidney really IS failing?  Not one thing.  So why be anxious?  Being anxious steals the joy that you have been blessed to have with this new kidney.  Don't allow the thief to steal your joy. 

    You are in control of what you think and how you feel.  Exert yourself over the situation.   Make youself say "I am well.  My kidney is fine."  Say it and say it like you mean it. Even if you don't mean it, say it anyway.  It will make you feel better and it WILL have a positive effect on your kidney.

    Not judging.  Just sharing what works.

    Worry, anxiety, fretting are all hard and destructive on the body.  Don't allow it. 

    • Thank you so much for your time, Steve.  I agree 100% with every word of your post, and I have always tried to do exactly that, usually with success.  I just need to get back on the rails, and your words help!

  • I have a fellow transplant friend and she I going through anxiety issues too

    Hers different type of issues. Afraid to go outside , afraid of eating new foods , list goes on and on.

    Was transplanted 5 months ago and just released in past three weeks then back in for one week.

    I was transplanted 7 1/2 years ago ( double lung) had some anxiety for about one month.

    Mind over matter finally got me thru it. Thought about how lucky I was , each day on my progress new foods new adventures outside my home

    Life is good , we all have setbacks. Look to the future and look how much better you are doing vs some others
    • I am so sorry that your friend is going through such a hard time.  Every day I evaluate my situation and thank my lucky stars.  I appreciate the opportunity to just "vent".  Thank you very much for your response, and good luck to you!  I hope you are well.

  • Congratulations are human!  Who else but a Tx recipient has to live life under the pressure of knowing that everything can go wrong, in a hurry, at any moment?  Few others hold life as preciously as one that faces their own mortality daily.   

    Having spent so much of my days incarcerated in the hospital, I now get nervous just driving by my Tx center (my own "White Coat Syndrome.)  My recent routine of longer spells away from it has instilled a greater appreciation of life, which I do not want to change.  

    So, by whatever means needed, I hope you find a way to deal with these emotions and continue enjoying this gift of life.  Try to "cut yourself some slack" for being a human

    • So, do you find that longer periods away from "incarceration", in and of itself, is your most effective coping mechanism?  I'm hoping that the sudden and consistent increase in my creatinine has plateaued and is merely a "new normal" for me.  If that's the case, it will take more time for me to recapture my confidence.  I can live with that, I think.  Cutting myself some slack has always been hard for me.  Thank you for identifying that difficulty.  I have to do better in taking that advice.  Thank you, Kidneyboy.

      • I think you are putting too much importance on the creatinine level as an indicator of overall kidney function.  These numbers fluctuate with regularity, affected by hydration, medication, illness and yes, even stress.  Tx teams compare blood work results over time, looking for trends, rather than as an instant read,  A steadily rising creatinine may be a sign of a brewing issue over weeks. It is good news that yours returned to "normal."

        The rise you stated should be considered minimal and well within the range caused by other factors.  You might want to put a new perspective to use with regard to creatinine numbers. I also would pay more attention to hydration, especially in the week before blood work is drawn to eliminate false readings.  What did your Tx nephrologist remark about your kidney function? 

        BTW...I live everyday like it is my last and rarely worry about my demise, It will happen whether I worry or not, so I don't waste the precious time I have been given.

        • Well you see, that's the thing.  My creatinine went from being steadily below 1.2 (for about 4 years) to suddenly being above 1.3 where it remained for 8 months (and now fluctuates between, say, 1.25 and 1.35) and still is a year and a half later.  You're right in that my tx team looked at that reading over an 8 month period and decided to do a biopsy when they saw that my creatinine was not going back down.

          It was the surgeon who made me see that a better perspective is one in which I understand that creatinine alone is not a good enough indicator for an invasive procedure like a biopsy.  So, it was cancelled.

          I do pay particular attention to hydration, and my creatinine has now seemed to have settled, not back to a figure below 1.2 like it was in the beginning, but rather, between 1.25 and 1.35 despite drinking a shedload of water before labs.

          My TX neph was the one who sent me for the biopsy in the first place, but she agreed with the surgeon's opinion that since my other labs were fine, a biopsy was not necessary.

          But that's all old hat.  What I really wanted and needed to hear was the last paragraph of your post.  I have to keep reminding myself not to waste my time on worries but to instead go easier on myself.  The sudden and mysterious change in that one number has left me more unsettled than I had anticipated.  I just want to hear some reassuring words from people who have been there and have done that, so thank you.

          • Having a Creatinine under 1.5 is great and you should be at ease.  Males have a slightly higher CR level than females.  My CR has never been below 1.4 with either of my Txs.  I guess I just go by how I feel, but this is no measure, when I feel my best, it usually means something is wrong (a ruler no matter how inaccurate can still be used to compare.)

            It is different for everyone in how they handle their life.  You concerns are valid and faced with any issue one must look toward any coinciding changes, like a switch in habits or medications.  I do hope you find a way to live with your challenges and continue to enjoy good health going forward. 

            • You are right.  I should be at ease.  I am working on being at ease.  I am looking to rediscover the wary confidence I once had.  One way in which I am doing that is by posting here about my concerns which, while valid, are also admittedly out of proportion.  Posting about this is not easy for me, but I think it has been helpful and necessary, sort of like lancing a boil.  So thank you for taking for taking the time to read and to comment.  I'm grateful.

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