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Feeling Stressed and Anxious

Hi All ,I had pre-emptive kidney transplant done 4 months back . Since then I have been living in fear . I always fear what if this will hapoen ir that will happen . I have had various infections like cough, cold , UTI and diarrohea. It seems to be never ending . I feel sad all the time being sick again n again .. Since 2 weeks now I have got tremendous amount of hairloss. I cry seeing so much of hair fall . I fear I will go bald like this . Each day I have aches and pains in legs and back which is very annoying too . I feel very depressive. Has anyone else gone through like this situation?

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  • Anu Basin, You wrote this July 2016. I had my transplant January 2016. I can tell you that now May 2017, I have lost TONS of hair and but I am not bald though some areas I can see my scalp (but grateful not bald). It was traumatic for me as my hair was 'my thing'. Like you, many of us who have preemptive transplants (which is the greatest blessing in the world) we never got to feel 'sickly' or experience the painful journey of dialysis'. One of the hardest parts mentally is that I was hiking and travelling in Europe a few months before my transplant. (I'm a travel agent). So of course if you don't feel horrid as many people do and then are stuck on dialysis, we will mentally be affected post transplant. We never got to feel sick enough to place what we feel post transplant in perspective. Or we do see the gift but still our mind is like freaking out about the thair loss, the weekly labs, the ANXIETY /Mood/ Cognitive issues that ARE listed as side effects of Tacrolimus (Prograf), Prednisone etc. I am a very positive person and have never suffered from depression but have been not quite myself in the happy go lucky arena since transplant even though my transplant was a success. I understand the blessing. I understand how lucky I am but I felt much better before transplant mentally.  I'm still not the Adriana I know at 15 months post and the anxiety agitation issue is still a conversation with my transplant team. I fear switching out from Tacrolimus to Cyclosporine as they are same class of drug and maybe hair won't grow on my head but it will grow in places you don't want it. There's a 3rd and 4th drug as well as options but they don't suit me and my lifestyle. The key has been understanding I will never be exactly as I was pretransplant but the other options like death, dialysis or rejection would be more tragic than hair loss. I am going to see a therapist next week for the first time in my entire life. Took a lot of calls months of calling to find someone who was more 'holistic' and involved with cognitive behaviour therapy and the type of therapy I feel might be useful. Like I don't want drugs is what I mean. Prior to transplant I had anxiety and worked it out through fitness. Now the anxiety does not respond to fitness no matter how many miles or hours I hike or go to the gym. This is 'different'. It is truly a side effect of our drugs.

  • Hi A Basin,  I am about to go to sleep but thought I should post for you the common side effects of TACROLIMUS (Prograf) for starters. But first let me tell you I transplanted January 26 , 2016 and was very prepared/confident/fearless as that is my personality and I was extremely educated over the years on all things kidney/transplants because I knew since age 15 that one day I would need a kidney. I even vowed that when that day came I would have a preemptive transplant. Many wonderful years of fun/travel and a normal life happened but eventually my genetic kidney disease (Polycystic Kidneys) did it's thing. I am one of the happiest people I know personality type, confident, funny, and zero history of depression. I had a very successful kidney transplant preemptive. I thought I would just heal, take my meds and jump back in to living the way I had been. about month 4 my hair starting falling out by the handfuls (I took pictures every day to document it to torture my transplant team with photos via email). I literally freaked out even though I knew it was 'just hair' and well my kidney is doing great but come on...who handles hair loss well? NOT ME.  I probably ordered 10 hair pieces (not wigs but crown toppers) and returned all of them because I have no tolerance for something on my head not even a hat. So I went through that crazy stage of ordering and returning stuff on The hair loss was extreme April/May/June/July....and I was shocked I was not bald but definately have 50% less hair. I have thick hair so even with severe hair loss when my hair is dry it looks like I have more than I do. When it is wet after shampoo it is lots of scalp. I expected this would cause anxiety but even when it got better I noticed that everything I like about myself (my happy go lucky, funny, full of joy, woo hoo personality was 'flat'). I feel agitated all the time, nervous, anxious, and 'altered'. I dread the mornings and starting my day. Which let me tell you freaks me out because I have never felt such things before. I usually love waking up and making my morning coffee and planning my day. I am very much into fitness which always gave me pleasure. Now I have to push myself out the door for my miles and to the gym. I do it but the joy of it is not there. It has been so confusing. I have a great kidney and yet I feel mentally NOT WELL which is not my history. I literally document all this on email to my transplant team at a great hospital weekly and I think they were just hesitant to say 'Um Adriana, you are classic textbook side effects of Tacrolimus'. My prednisone is 2.5 mg which is lower than most who stay at 5.0 mg. So let me tell you that I expected to bounce back which I did but mentally this transplant has messed with me because as I said I am one of the most positive happy people I know (or knew) and believe me I fight back, get my butt out the door, do my runs, go to the gym, but it is all 'forced' when before it was just 'my happy thing'. So drum roll....turns out I have the classic common side effects of Tacrolimus (Prograf) . I am 8 months post transplant and I have NO IDEA if this is going to stay like this or get better. What keeps me calm is when my labs return and my creatinine serum is steady at 1.0. But I miss ME. I miss me because I was sassy, fun, and over the top energetic. Now I am forcing myself with self talk 'Get out of bed, make your coffee, do your job, go to the gym,'. I have to talk myself into everything where before it was just natural and fun. Luckily, I have always had amazing willpower so I get everything done but it's not natural or fun like before. I thought I was going crazy but a simple list of side effects explains it all. I have almost all of this except seizures and vomiting!

    Check with your doctor or nurse immediately if any of the following side effects occur:

    More common

    Abdominal pain; abnormal dreams; agitation; anxiety; chills; confusion; convulsions (seizures); diarrhea; dizziness; fever and sore throat; flu-like symptoms; frequent urination; hallucinations (seeing or hearing things that are not there); headache; infection; itching; loss of appetite; loss of energy or weakness; mental depression; muscle trembling or twitching; nausea; nervousness; pale skin; shortness of breath; skin rash; swelling of feet or lower legs; tingling; trembling and shaking of hands; trouble in sleeping; unusual bleeding or bruising; unusual tiredness or weakness; vomiting

  • Being anxious about what will happen is very normal after what we have been through prior to our transplants.  I was a basket case (emotionally) after my heart transplant almost 8 years ago, and a good deal of it was just the traumatic events that happened pre-transplant.  I would encourage you to talk to your TX team and perhaps seek professional or spiritual help.  And realize that it does take time.  Try to live each moment to the fullest, and that means not focusing on the future.  If you worry or think about what 'might' happen, you just lost the present moment that you could have enjoyed.  Sound simple?  It's not, but with practice you can do it.  We all have been there before and are here to support you.  Good luck and keep us posted!

  • Having fears with a new kidney transplant is understandable. I've had my preemptive kidney transplant for 14 months. There really is an adjustment period as your body learns to adjust to the new kidney, changes in medications and dosages occur, a new body image, have frequent blood tests and a kidney clinic visit schedule,and to deal with side effects from meds. Having a support system of family and friends helps. What really helped me was knowing that my kidney transplant nephrologist and transplant nurse were only a phone call away to provide their professional knowledge to help keep my kidney healthy and happy when I had questions or concerns. Contacting your transplant team of your concerns is important. I had a great deal of hair loss from tacrolimus that took a good 10 months to lessen and stabilize. A sense of humor really helps. If I'm having a shaky day with hand tremors, I know that having soup for lunch and trying to eat neatly probably is not A wise choice. I do my part in keeping this kidney healthy by taking my meds, eating healthy as possible, drinking water, exercising, using hand sanitizer when needed, staying away from sick people but above all to rejoice each day in this gift of life. I've found that my fears and worries have lessened considerably as I've gained experience with living with this new kidney and knowing that my transplant team will guide me through any challenges on this kidney transplant journey. I still remember my transplant neph telling me that I didn't receive a kidney to make my life more difficult but to give me opportunities to have a better quality of life and to make the most out of this new life adventure. People here provide great support. I love Kidneyboy's phrase of "party favors" as a way describing side effects of the meds we are on to keep the kidney happy in its new home. It never fails to make me giggle especially when hunger from prednisone is challenging me. You will reach a point where you look back at your kidney transplant journey and marvel at how far you've come. I know I have. With kidney transplant joy, Margo
  • We all start with this fear. Over time you will get a better sense of how vulnerable you truly are and what are appropriate precautions. To that end, what will be appropriate varies from person to person as our immune systems are all different as are our reactions to the meds. You will find a better equilibrium and start to relax with time, especially as your drugs are tapered a bit. And yes... the hair comes back :)
    • Good Morning all,

      Thank you very much for your kind advice. It gives me deep sense of relief that this all will be temporary.. Drs have referred me for counselling .. Today I am going for my first session . Hope it all goes well .
  • I've been through this situation, honestly. I also have lost so much of my hair, I've cried in the shower, etc. I've had a very rough time since my transplant but I haven't responded well to the medications. I deal with very severe depression. It breaks my heart to hear you are too. But it is normal, I refuse to believe it isn't. Everyone responds differently but depression is a listed side effect of many immunosuppressants. Your body is adjusting to a major change and powerful medications, and it can take a while to feel "normal" again. I think the expected attitude after a transplant is one of intense gratitude, which it is, of course, but that gratitude can definitely coexist with a bunch of other difficulties we didn't anticipate, and I wish there was more discussion and acceptance of this. I remember also feeling very scared after my first transplant. I'm on my second now and I feel less afraid. The first six months you are the most immunosuppressed, so your immunity should get better after that. So hopefully you will be feeling better in a couple months when the induction therapy wears off. Sending you prayers. You are not alone.

  • Hi,

    The truth is you cannot live in a bubble and what happens will still happen whether you worry about it or not.  At four months out, your doses should be getting lower and the hair thinning/loss will level out.  The other issues will be more attributed to the medications and you get used to it.  You are ALIVE and that trumps everything else!

    If you do not go out and enjoy some of this new life, your body/mind will only have the issues to concentrate on.  We all have heard about the healthiest athelete/ jogger stepping out in front of a bus!  You get no guarantees in life, try to create better memories, the day to day pains will always be there if you miss it.  Time to reach for that brass ring.

    One more point..."A grain of salt" should be taken when it comes to advice from others, that goes double from me.

    • KB, thank you for sharing.
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