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What to Expect at End Stage Awaiting Transplant

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  • What to Expect at End Stage Awaiting Transplant

    Hello Everyone,

    I am new here and desperately need to gain a better understanding of the typical disease progression process. I am well educated in the text book process but my father seems to be an overachiever in this disease. It would help me a great deal to know if our experiences are beyond what is normal.

    A little background. My father was referred to the transplant team and is being worked up for eligibility. His GFR is 12. His last hemoglobin was 11 but that is per his report. His BUN is 100+. He is not on dialysis and I do not know what his nephrologist has in mind for the GFR level at which they will start dialysis.

    He is 66 years old and was diagnosed with CKD a few years ago but experienced a sudden and extreme decline in health less than 6 months ago.

    At this time he is profoundly fatigued to the point he cannot work. He is a laboratory manager for a large hospital. His physician has refused to sign FMLA paperwork so he will be forced to retire. His fatigue makes it difficult to even go grocery shopping or perform basic tasks. He is often confused and reports clouded thinking. He has fallen asleep while driving and is not able to drive an hour without pulling over for a nap. His speech becomes muffled in the evening as he becomes more fatigued. He has not had a stroke. He had a stent placed in his heart a few months ago and is in heart failure but I don't know the type. He reports his cardiologist says the fatigue isn't caused by his hear failure. Has your loved one experienced fatigue of this magnitude?

    I am not in contact with his physicians as he prefers not to accept that much help yet. He is diabetic and I am concerned he is not eating well or at all. I do know his diabetes is well controlled and his last A1c was 6.1. He has severe hypertension that has been difficult to control. His pharmacist says this level of fatigue is not a side effect of his medication. He says he has not been offered dialysis yet but for all I know he has but refused it. He is close to moving in with me and at that point I feel it is reasonable to ask him to allow me to speak with his physicians. Thoughts?

    I question if the fatigue could be due to depression. He doesn't believe depression is a real thing and won't discuss it. My mother died very unexpectedly 5 years ago and my dad sits in this sad little apartment alone every night. I live only an hour away.

    Please help me understand if this life limiting fatigue is common at this point?
    Last edited by SarahCaregiver76; 10-26-2017, 11:27 AM.

  • #2
    Hi husband is in a similar condition. His doctor prescribed these shots called Procrit. Typically I think it's given to chemo patients. They do blood work and then the shot on a rotating weekly schedule (I think). He has to go and actually get the injections (not self injectionable like insulin), but these have helped substantially with the fatigue and has allowed him to keep working. You might talk to the nephrologist about it--that's the doctor who prescribed it for my husband.


    • #3
      Hi,my name is Toni, I saw your message about your dad. I am sorry to hear about your dads medical issues. My heart goes out to both of you.First of all FMLA do you know which doctor refused? I would ask a primary doctor whoever that would be. And it sounds like he has a heart doctor . I would call him back And actually speak to the nurse of the doctor and explain that you are needing FMLA paperwork completed and that you need this in order to protect his job.and they may charge a fee on that. Try again, I just can’t believe that not any of those doctors would sign
      Your dad has gone through a lot and still is. Loosing his wife, feeling sick and tired everyday,and I am sure he is worried about his job... it’s a lot .

      And those symptoms that you describe does not sound good I would take him back to the doctor and ask if it’s time for dialysis NOW ? I am NOT a doctor but I think GFR should be, even if he doesn’t want you too. You or somebody needs to be with him when seeing any doctor : just to be sure he is understanding what is being told... you said his memory is not good and things are like a fog . So, when your done reading this take him to hospital or officeASAP! :::::: google GFR and CKD stages. Goodluck