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it has improved sometimes, but so very slowly

it's still bad enough that i am looking into long-term disability until retirement (3 yrs)

appetite is a big issue as well

anyone else have the ugly fatigue and still waiting for the new life that transplant was going to bring (and, yes... i am still here,,i would never diminish that miracle)

 

paul;

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  • Yes I am. I'm excited about the kidney but I wanna feel good again. I have a cough I've had since transplant. My fatigueness is terrible. I've had kidney since feb82017. Is this normal?
    • Dear Cynthia,

      I had pneumonia for more than a year recently (I got a multivisceral transplant in 2005). It only really manifested itself through a productive cough, fatigue, and once in a while I would get a fever. Have you seen a doctor for your cough? Perhaps it might be a good idea to get a chest X-ray or CT scan of your chest to see if your lungs are okay. My pneumonia was monitored through these tests. I am not completely sure what caused mine. I was put on several antibiotics which did not make it go completely away. It seemed to have perhaps exhausted itself out finally. It kept abating and then returning until it just did disappear, but it took a long while. Taking something for non-acid reflux may have helped, but it already seemed to getting less before I started that medication, so I am not completely sure if aspiration was the cause or something else. It has been harder to diagnose me at times because I tend to express less symptoms since taking the immunosuppressant Prograf for my transplant. I hope that your doctor can help you figure out the cause and get you to feeling better soon. Many hugs are being sent your way on the wings of hope.

      Warm regards,
      Bobbiejo 

      • Thanks love. He did an xray last week and asked if I smoked. Which I don't. Then he said it looked as if something white particles was at bottom of my lungs. I use to work at a lighting company 20 yrs where we painted the fixtures and I was in contact with paint alot. Never required to where a mask. He think that's it. Gonna do a ctscan to make sure and try for meds
  • The times I have had extreme fatigue was when something was out of balance in my life or my body. On my day where I feel oh boy let me take on the world and do everything........I can keep up this pace and then 2 days later I am have nothing left. So I have through the years tried to learn how to pace myself which for me is not easy....eps when I was working full time, being a mother, a wife all hence that comes with that. Then there had to be time for fun too! 

    Other times of extreme fatigue was because something was out of balance in my body. For me it was not drinking enough water or not eating enough. So over time this would make me tired and I would be at a lost as to why I was so extremely tired......it often turned out I was so busy doing and running I forgot to take the time to take care of myself and eat a banana and drink hence I would get dehydrated.

    Other times it was because I was ill and it would take me much longer than the average Joe to get my steam back.....what took others a week to get over an illness for me would take weeks and even a month.

    And there are other times that I call "empty bucket" this is when you are spending weeks caring for others and constantly giving to others and when it comes time to give to yourself you have no water left in your bucket for yourself to drink....hence you are dry and brittle....you need to give to yourself by doing something for yourself even if it is just 15 minutes a day to bring joy to yourself.

    Then there is depression of a sorts that can make one feel extremely tired. Having a chronic illness like most of us have here takes a toll on us over time. Our health is in a constant roller coaster ride and our bodies and minds are connected.......this can cause extreme fatigue.

    So what I have learned to do to deal with fatigue is to listen to my mind and body, and to be an advocate for myself with my doctor's when I know something is not right in my body. I for one get clues if I know I am sick because I get nightmares when I am getting sick or not listening to my body. I also find I get cranky before I get sick and seem to be mad at the world and then when I look back when I am sick I say I should have known I was getting ill because I am rarely angry at the world. 

    Not sure any of this applies to you......but this is what I have found out through the years of dealing with chronic illness and it correlation with fatigue.

    • You hit the nail on the head, and I believe you are right. Listening to our bodies is one of the best ways to beat what ails ya! Thanks for the reminder!

      • Hi There.

        I am in almost the exact same situation. I am almost 2 years out from a kidney transplant ( which I got from my sister before dialysis became necessary). Of course there was a dramatic improvement in my physical state, still I have long bouts of tiredness

        I was very athletic before the kidney failure kicked in ( entered 100k cycling events), but am really struggling to get fit again because of the tiredness. My Neph says go for it, and even wants me in the transplant games this year.

        I will try the suggestion of more liquids, but am really struggling to overcome this tiredness, though I hold down a senior IT job without mush issue. I know I am blessed, Thank God.

        JP

        • After one and a half years post transplant I too am getting extremely fatigued after a 30 minute walk which I take every other day. Am due to see the consultant next week and I fear things are beginning to go downhill. Walks were a pleasure before, but now they are something I feel I must force myself to do in order to avoid becoming a complete physical wreck. Some days I feel totally wiped out.

          Best wishes,

          Padster

  • Oh, I was so hoping my fatigue was just due to the fact that I'm only three months out. I'm sure that plays a part and maybe I'm being impatient, but from the stories I'm reading, I better settle in and get used to it. Obviously due to the meds, I'm guessing. I had a pre-emptive kidney transplant and actually felt great prior to my transplant, but my nephrologist begged to differ and warned me that dialysis was imminent. So grateful that I got a kidney (cadaverous), and am blessed to never have had to experience dialysis. The fatigue will be just one thing I guess I'll learn to live with, since I don't like the alternative!

  • Hi Lynne. Hou's aw wi ye? (Sorry if I butchered that wonderful Scottish phrase). I happened to be reading this thread and your post caught my eye, particularly the part about writing to your donor's family. It reminded me of the dilemma(s) that I faced in taking that very emotional step. Mine had more to do with issues of self-worth ... how such an imperfect person ended up receiving such a wonderful gift. It haunted me until an epiphany struck me. It isn't the quality or the quantity of life that is at issue in the transplant business. It is simply *life* -- as the poet Hafiz wrote, "I wish I could show you, When you are lonely or in darkness, The astonishing light of your own being." I believe that your donor family would see and appreciate the light of your life and the fact that you have worked so hard and endured so much to hold and protect that light. I believe they would celebrate that.

    Guid cheerio the nou! (I know ... pretty lame :))
  • I am 2+ years post KP transplant, 6-8-10.  I was on disability from Jan 20th to September 4th, and just now I am working part time to gently return to full time work.  I`m not sure that I am going to make it though.  While I am thankful and grateful every day for the gift of life, I find that I am still VERY fatigued.  Since I am still only working 1/2 days, I usually come home and nap for a while.  However, I find that even a short nap messes up my sleep schedule for that night.  Paul, have you found any help either from the forum or any of the doctors.  I too, am considering long-term disability even though I don`t like being at home all day.  Anyone out there know of any help.  Thanks so much, Dawn

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