Hi, 

It's been close to 11 years since transplant. 

I've been getting good labs for 8 years and then saw protein leakage in urine. There was a medication added for it and my creatinine has been steady at 1.4 on an average for 2 years. 

For the last 2 years though my hemoglobin fell to a 11.5 and over the last 6 months it's been falling and today it was a 9.9 and serum creatinine was 1.5.

There is protein leakage too. What do you guys think? Is this rejection?

I am really worried. 

Thanks

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  • Thank you KC for keeping me posted, I am sorry but, I accidentally hit deleted it after reading it through.  This is good news that the Tx team did not feel a biopsy was necessary at this point. As for the fluctuation in BP, I would only guess it is related to the timing of the dose of BP meds and fluid intake, Keep track of test results and present your records to the team. This is a good question to ask them about. I hope their plan of care is the remedy and you return to better health soon!

  • I've been scheduled for a biopsy on the 1st of September. Trying to keep calm. Hopefully it isn't too damaging. Other than feeling weak, I feel fine. Just worried about the protein leakage and the extent of damage. 

     

    • I am sorry you have to deal with this issue, now, KC. You are going to endure all the trials and procedures involved with getting back to better health. Worrying about it seems like a waste of your time and needless stress. The biopsy will determine what is going on in the kidney and how to treat it. I know you didn't do anything wrong to get here, so try to concentrate on getting better and what you will do after. Please don't second guess yourself or beat yourself up if you do feel uneasy. You are human after all, and this is your life we are talking about. Please keep us posted on your progress. 

       

       

  • Hi I took nortriptyline for trigeminal neuralgia and found accidently that it helped in my proteinurea. I am kidney transplant from .past 21 yrs and also suffering with trigeminal neuralgia pain since 21 yrs. Any tips and  help will be really appreciated. 

    • Hi Dolly,

      I am so sorry you are having to deal with this condition, are you seeing a Dr. for it? My Favorite aunt (who didn't have a Tx,) had this, it was limited to short spasms of intense pain, but she handled it well with a grimace. She eventually went to see an acupuncturist, thereafter these episodes were less in frequency and severity. I am not sure if this is related to the Tx or the meds, but I pray for you to find some relief.

    • Hi Dolly, 

      Will try it. Thank you. 

  • Hi KC,

    What does your Tx team think is going on and what new medication did they start you on? Without more information, I  would only be guessing what is causing this. Whatever it is, it does not seem to be affecting your creatinine very much. Post-transplant anemia can be caused by many factors and is common and related to immune-suppression med use, long-term. That's is as much guessing I will entertain, without facts.

    The most important thing you must do is to stay calm, while your team figures out the cause. In the absence of facts, our minds are left to invent our own hell. I wish I could be of more help, but conjecture will only lead to more stress. I do hope and pray that the team can reverse this trend and you return to better health soon.

     

     

    • Hi Kidney Boy, 

      Thank you. They have told me to wait for a tacrolimus report. Probably will take 2 days. 

      They should be able to figure it out by then. 

      They have started me on an angiotensive receptor called olmezest. 

      Hoping for the best. Will keep you updated. 

      Thank you

      • Well, that clears up a few things! The fact that your creatinine is not steadily rising suggests that you are not starting a typical rejection episode.

        You are being prescribed Olmezest to lower your blood pressure (it must've been high) and protect the kidney from damage (Chicken or the egg kind of thing, the kidney wants to increase filtration and signals the body to increase blood flow/pressure, the increased pressure tends to damage the nephrons (filters) and they get irritated and shut down over time.)

        As this investigation continues, there may be a biopsy in your future, no worries, it is a simple procedure that will yield volumes of information for the team and you. Try to stay calm. A good rule to observe is if your team isn't rushing around, acting nervous, then neither should you.

        I placed a link about Olmezest below, watch for side effects when you first start.

        Olmezest

        Olmezest 20mg (Olmesartan) - InhousePharmacy.vu
        Olmezest tablets 20mg are used to treat hypertension (high blood pressure). The active ingredient is olmesartan and you can buy Olmezest 20 online f…
        • I've gone through all the tests. There's protein leakage as shown in the 24 hour urine report. It's 1700 in 24 hrs. Also  , tacrolimus level is at 1. Is this normal? 

          This looks too low. What does a  low tac level mean? 

          I am waiting to meet the team tomorrow. They may suggest a course. 

          The blood pressure is been high because of work and the full time sales job. I guess its time to quit now. 

          Thanks for the info on olmezest .

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