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My GFR continues to drop

Posted , 6 users are following.

ocalagrl
ocalagrl

Hello, 

I am in stage 4 CKD. I have labs checked every three mos and my GFR is usually around 20. At the beginning of August, it went to 15. I received an order to have labs rechecked and it came back 10.  My sodium was low and my potassium was normal. My BUN was 59, and Creatinine was 4.8.

My doctor had me admitted to the hospital and placed me on IV fluids for a few days. I was discharged with all labs improved, and a GFR of 15. I was to have Renal Function tests to be done once a week for the next four weeks.

I had the labs drawn Thursday and got the results back and my GFR is 12. The BUN is 37, Creatinine 3.8, and my Sodium is low again at 136. Does anyone know if there is a chance of these results changing in the next few weeks? I'm staying hydrated, I exercise a few times a week. Is there anything else I should try? I always have dialysis popping around in my brain, maybe it's time?

Thank you in advance for a responses

1 like, 6 replies

6 Replies

  • marj01201
    marj01201 ocalagrl

    Posted

    Hellosmile

    I have definitely had some somewhat similar experiences. By that I mean fluctuating creatinine levels as well as sudden drops in my renal function. I had a low sodium issue that caused some of my difficulty. Also dehydration. 

    My first nephrologist had me taking a low dose of a lasic which created both issues. I changed nephrologists about a year ago after a consult with my new nephrologist. I should mention that I had very low blood pressure and sudden plummeting blood pressure problems for most of the time that I was seeing my first nephrologist.

    My new nephrologist immediately pulled me off the lasic and the blood pressure medication I had been put on by the first nephrologist. Within a few days I was feeling much better. My blood pressure was in much better range and I was no longer experiencing the plummeting blood pressure 4-5 times a day (or at all). Over the first three months with my new nephrologist my creatinine improved from 4.2 to 2.88. My eGFRimproved from 8 to 17.

    I have seen a slight decrease in my data this summer (creatinine 3.2, eGFR 14). However, I think that may be due to some problems with dehydration. I moved so I'd be in the same community where my doctors are now all located. It was quite a struggle to move with my anemia and general medical condition--I live alone and am 65 years old. Plus we've had a fairly hot summer where I live with heat indexes between 110-115 for several weeks as I was packing and moving. So I became pretty dehydrated.

    I have my next renal panel on Sept 14 and am hoping to see my renal function improve some, closer to where it was before my move.

    My new nephrologist has emphasized that my kidneys will continue to deteriorate. They have to work so hard st this point with such reduced function that they will reach renal failure. He talked about sending me in for transplant eligibility testing during my last appointment. We've also talked about dialysis.

    I'm preparing myself as much as I suppose anyone can ahead of time for dialysis. I know my preference would be PD dialysis. However I do have type II diabetes so I'll need to be sure there would be no problem managing my A1C with PD dialysis--another discussion I'll have with my new nephrologist when I see him again on Nov 7th. (Right now my A1C comes in consistently at 4.9-5.0 without medication. I'd certainly like to keep it that way.)

    So can you do anything else? I'm not sure--I'd definitely suggest talking with your nephrologist about that. Is dialysis inevitable? Again, I couldn't answer that question. That's another topic for your nephrologist.

    But, I have found it most helpful to learn as much as I can about end stage renal failure treatment options. I need time to process all of this, work through my emotions. I'll be making a major decision regarding my medical care. I want to be sure I first understand the ramifications of my decision. Second, I'm totally comfortable with my decision. Third, that my doctor and I are on the same page with regard to my decision and the resulting treatment plan. And fourth, that I've planned for the worst while still hoping for the best--that really minimizes my stress level🐶

    I've made my mind up that I'll try dialysis. I do love what I do. (I'm still working.) and I absolutely consider life to be something to be cherished and enjoyed with all its ups and downs. But I'm also a realist. If I'm feeling very poorly and functioning very poorly with no possibility of improvement, at that point I will discontinue dialysis.m

    Marj

    • ocalagrl
      ocalagrl marj01201

      Posted

      Good Morning,

      Thank you so much for your reply. It gives me hope wink I too am on the BP meds (beta blockers). It controls my BP sitting, but I can't stand up without syncope. When my blood pressure drops, I have to increase the Hydrocortisone because of the Addison's disease. It's kind of a vicious circle that I've learned a routine to, but now boom, out of routine, but working to get things back on track.

      I also have diabetes (type1). How awesome to have an A1c of 4.9-5! Mine is currently 7.2. But, I'm now using a new FreeStyle Libre. In the last seven days, I've only used (5) meter strips. The sensor measures glucose from my interstitial fluid every one minute. The reader averages the glucose. My average today is 139, which is an A1C of 6.5. (I'm probably too excited about this).

      My low sodium is from Addison's disease. I am encouraged by both my Nephrologist and Endocrinologist to, "eat more salt!" I try to eat a few potato chips a day. I'm not supposed to drink just plain water, but liquids with electrolytes. My potassium has lingered below 5 for a long time.  

      So, my goals this week: stay hydrated, have my blood pressure medicine changed, and keep an A1c <7. I realize I'm looking down the road to dialysis, but I won't let it depress me. 

      I live with my husband and 88-year-old mother in law. My husband is our caretaker, and he's great! I am 55 years old. Both of our daughters live 1000 miles away in Florida with our three beautiful grandchildren. I know I have a triple whammy against me, but I strive to live until those grandchildren graduate high school.

      Hope is such a blessing, thank you so much for sharing with me. 

    • marj01201
      marj01201 ocalagrl

      Posted

      Excellent work on your A1C!! And this blood pressure stuff gets really complicated pretty quickly. I, too, am focusing on staying hydrated right now. I'm also making progress regaining strength--I'm quite a lot stronger now than I was  8 weeks ago when I moved into my new house. I'm very pleased about that!! And I'm finally making some progress with weight loss. These later two issues are going to take some time though; but at least improvement is finally happening in both areas after years of deterioration.

      So, things are beginning to show real improvement for me. Perhaps the thing I'm most pleased with though is how much better I'm feeling and functioning on a daily basis. I honestly did not think I would ever feel this well again. It gives me some hope that I would feel quite well on dialysis as well, i.e., if I can get myself into the right frame of mind about dialysis. 

      How old are your grandchildren?

      Marj

    • ocalagrl
      ocalagrl marj01201

      Posted

      Good Morning,

      I just finished an email to my Nephrologist about my blood pressure medication causing syncope. This morning I had a sitting BP of 130/88 and standing 78/60. I just want something that will work laying, sitting and standing.

      So glad to hear of your recent improvement. My husband and I moved home to Indiana from Florida in 2008. That was before renal failure, and I couldn't even climb a set of stairs. I just have an excellent team of doctors here in Indiana. Things aren't 100%, but they are much better than 10 years ago.

      Ah, my grandchildren, Lyla is the oldest. She is very obviously 3 and 1/2. Her sweet brother Gunner is one. My youngest daughter and her husband have little Paisley she just turned one July 31st. Her birthday party was adorable. She was Snow White, Gunner was Dopey, and Lyla was dressed as Sleeping Beauty, but she made it clear to everyone that, "my name is Lyla!"  I'm sending you a picture of us with them at the party. So happy we were able to be there even though the heat index was 110.

      We are so used to going to and from Florida throughout the year. That is definitely going to be a drawback of dialysis. I'm on large doses of hydrocortisone and Endocrinology refers to me as, "brittle." So, I think I will choose Hemodialysis administered in a clinic setting. I've read about the amount of planning ahead it takes to set appointments up while traveling, but I think there will be less a chance of infection, and better glucose control with hemodialysis. 

      Thank you so much for sharing with me biggrin

      Have a GREAT day,

      Mary

  • kathy96546
    kathy96546 ocalagrl

    Posted

    Oh wow . I hope you get answers. The other day the doctors said I may have nephrotoxicity . I think I spelled it right. Good luck ❤️
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