Improved Renal Panel Data

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I posted a few months ago about a very modest improvement in my renal panel data. I've just returned home from seeing my nephrologist. I was both surprised and pleased to hear that there has been more improvement:

Creatinine 2.7

eGFR 18

So I'm am no longer in Stage V renal failure. I'm back in Stage IV. This is the pattern the nephrologist from the university medical center had indicated I should see as my blood pressure elevated. (It used to run extremely low.)

So, for the time being this is certainly good news!

Marj

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10 Replies

  • Posted

    Well done!! I have finally got a nephrology appointment! Will be keeping an eye on your posts for tips Marj!

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    • Posted

      Thanks, Jane! I'm so glad to hear that you've got an appointment with a nephrologist. That will hopefully lead to the development of an effective treatment plan for you.

      I've got one nephrologist who is sure this improvement is due to the increase in my blood pressure. My regular nephrologist isn't convinced on that issue. 

      I'm just glad this improvement is happening. I tend to think that the university nephrologist is right on this situation. This is primarily because there has been such a noticeable improvement in how I'm feeling and functioning. And it's the only thing that has made much sense with my data. My regular nephrologist does realize that there has been s huge improvement in how I'm feeling and functioning. He's not really arrogant. But I had asked him a few times if my BP was too low. He responded both times by saying that it wasn't lie enough to cause a problem. So it's likely going to be difficult for him to acknowledge that my BP had in fact been running too low.

      Lregardless, time will tell who is actually right. They may both be partially correct. Clearly my case has been somewhat complex. Consequently I'm glad that I did get to see a second nephrologist--and one affiliated with a university program that is ranked quite well in the United States. This is a situation where two heads are likely better than one🐶

      Clearly I'm learning the importance of effective self-advocacy through all of this!

      We'll be sure to let us know what you learn from your nephrologist appointment.

      Marj

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  • Posted

    👍👍 excellent result.

    Your situation is different to most of us but you must feel over the moon. wow

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    • Posted

      Yes, I am thrilled. As I mentioned earlier, there is a difference of opinion occurring across the two nephrologists I have seen. My regular nephrologist isn't sure that this is blood pressure related but he states continuously that I have no structural kidney damage. He has not understood why I have not had more function. But he has not thought that my BP was low enough to cause this issue.

      However, the university nephrologist is totally focused on my blood pressure. He was sure that when it elevated I would have more renal function. Over the past 6 months, with my blood pressure higher, my renal function has improved, albeit rather gradually. However, during that same time I've had two kidney infections and a chest cold. Even while dealing with this le issues my kidneys have shown improvement.

      At this point I'm certainly hoping the university nephrologist is right. And, if do, I'm hoping we'll see some additional improvement over the next 3-6 months.

      I'm now wondering if I should schedule another appointment with the university nephrologist to be sure I've done my best to facilitate all of this. I'm going to ponder that for a few days. I've seen my regular nephrologist since November 2011. He really hasn't had much of a handle on what is happening with my kidneys. However, I do think my situation seems to be rather unusual. 

      Anyway, I need to take whatever action seems to be in my own best interest on this. If im headed to dialysis I would prefer to stay with my current nephrologist. 

      It would be nice if these medical professionals would actually consult with one another on cases like mine.

      Marj

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  • Posted

    Welcome back to stage 4, Marj -  great news.  I have reducing kidney function for the opposite reason to you:  high BP!  Intriguing how both opposing situations can each have an effect on kidney function.  Here’s to your continuing improvement!
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  • Posted

    AWESOME!!! I am sooooo happy for you! YES, I would return for a follow up with the university nephrologists, he's on a roll so I would certainly let him guide you. Just my opinion.

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    • Posted

      Thanks for your suggestion. That is what I've decided to do. Fortunately the university nephrologist's nurse has set an appointment for me on Wed, Feb 7th. So I'm not going to have to wait this out very long. It can take 3-4 months to get an appointment. So I'm thrilled with this quick turn around time for the appointment.

      I'm just realizing that I'm going to have to shift my renal care to the university nephrologist. I have issues trusting doctors--unfortunately I had a primary care physician several years ago who has lost his license and practice for perpetrating medical negligence, malpractice, and fraud. In my case blood was drawn for labs but was never sent to the lab for analysis. And yet I would get a phone call a few days later saying my labs were back and everything was fine. But everything wasn't fine. I developed Type II diabetes. It wasn't diagnosed. Of course it wasn't treated. 

      It was ultimately diagnosed 10.5 years after I began seeing that doctor during an eye exam. I have retinopathy with fairly severe vision loss in my right eye and moderate loss in my left eye. My CKD is another complication from the undiagnosed and untreated type II diabetes.

      It has taken 8 years for me to move past the stress and anxiety ive experienced from all of this. I still have real problems trusting physicians. Consequently, it's pretty stressful for me to see new doctors and shift doctors.

      But I agree with your comments. It is clear to me that the university nephrologist has a handle on my kidneys. So I'm going to muster my courage and arrive for my appointment with him.

      He is located in a different community about 40 mikes away. But I believe we can handle my anemia treatment from afar. I think he can place standing lab orders at the hospital in my community. If the labs come in showing that I need an EPO injection I think I can pick it up with a syringe at the pharmacy and self administer at home. 

      If I'm accurate on the anemia management I would only need to see the university nephrologist 4 times a year. My internist can work directly with him for everything else.

      Anyway, I can do this. Frankly, I need to do this. But I'll likely be a little tense until I get this transition made🐶

      As you can see, I really appreciate your post--it confirms what I've known I need to do.

      Thank you!

      Marj

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  • Posted

    Yes! Take charge! I am on insulin and draw it my self since the pens cost $700. A month, the vials are free. It isn't that hard to learn how to draw and inject. Good for you, sounds like you have a good plan in place. I understand about being leary of Drs. I was a diabetic and never told until I went to the ER with heart problems. My a1c was 14.6 and they said it was  clear I had been a diabetic for many years. I started asking my lab for hard copies of my report and have been keeping track ever since. I keep a close eye on all my Drs and the treatments. I am no Dr but I can do research and have enough common sense to question them or ask  for clarification.

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    • Posted

      Fran, that's exactly what I've been doing since learning of my situation. I, too, print copies of all my labs and so forth. And I've soent lots of time researching. When I do find a doctor who kniws what he or she is doing I'm deeply appreciative. And, I've definitely become good at differentiating to good ones from the rest.

      Overall, I'm doing much much better with the stress and anxiety. But it still surfaces some when I have to head out to see a new doctor or decide to switch to a different doctor.

      This has absolutely really changed me. However, overall I would say that the change is for the better. And, yes, I do know that I'm not alone. Several others in this forum have experienced somewhat similar situations.  Your situation is actually rather similar to mine. And yet here you are doing everything you can to make the best of your medical care😊

      Clearly, it is critical that we each become highly effective and diligent self advocates. I am extremely actively involved with all my care. I'll be fine with this shift to the university nephrologist as soon as I get there for the appointment. And, as you have pointed out, the university nephrologist seems to be on a roll with my kidneys. Consequently, this could be s really good decision l.

      Anyway, 11 days to go before the appointment🐶

      Marj

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