CKD history of acute injury 2012.

[Dana66CKD]

i have posted twice. Had bout w/bacterial meningitis 2012. On dialysis 3months, in patient 3months.The dialysis saved my affected kidneys and I recovered 95 % function for next 10 years. Didn't know was ckd stage 1.

Jan.2022,, labs showed new egfr 55! I was stunned, but pcp said probably dehydration. Annual appt Pcp April 19. Notable elevation bp 173/80's. Never had hypertension except when hospitalized. PCP started ARB for bp, Seem to work, modified diet, decreased protein, sodium,1 etc. New labs May 2022 show egfr raised to 85. Continued w/kidney friendly diet for Stage 2 ckd. Maybe overate some protein one night, next day bp and HR 170/85, p 103, June 23 w/arrythmia. So frightening! Pcp appt.w/ CMP labs/ekg done following episode. New egfr now 71 by June 27

BP rising slightly, couldn't get it down, so went to ER July 2 , tried to get increase in bp med. ER attending said: "follow-up with primary." We"don't do workup unless bp 200's/100's" EKG/labs all normal, egfr now 84

Modified diet , egg whites, veggies, fruit. Non-dairy milk. S/S fatigue, shaky, b/p low normal.

July 9, Urgent care visit am, for hypotension, hypovolemia. Bp 90/50. Labs, ekg wnl, except egfr now 63.

i am diagnosed w/Sjogren's since 2015 after meningitis 2012.

it's been rollercoaster ride and rapid decine egfr. More test upcoming. Lost 25 lbs since April. Not confident about care with current Nephrokogist. Depressed, anxious, now seeking another Nephrologist who will listen to these changes. Any suggestions?



[Sarah_402]

Hi Dana66CKD, I think your right to seek another opinion, because you have a history of acute kidney injury, have sjogrens, and flucuations in blood pressure high and low. I would think all of those should be investigated. You probably need more testing to see if there is a problem. Did your doctors ever mention how your kidneys might be affected long term after your initial injury?

My doctors didn't care about my eGFR until it was consistently lower than 60, which I don't agree with but that it how they seem to roll. I have an acute tubular injury found on kidney biopsy, but it turned into chronic (but mine was not found for years). I believe that patients with acute injuries are way more at risk for chronic so I think its best you figure out if there is something more going on, so you can help earlier rather than later.

I'm sorry this is happening to you. I was also so anxious and depressed when this all happened to me. I'm in my 40s and my eGFR is in the low 40s. I'm doing better now, but if my eGFR keeps dropping I know I'll freak out.

I think your doing all you can by looking for another opinion, keep monitoring the lab values, see if you can get answers. Keep going, keep on top of it, I wish you the very best.

[Dana66CKD in reply to Sarah_402]

Thank you Sarah_402. No, they never explained, but I didn't ask 10 years ago. I was just glad to be discharged after life support, dialysis, partial amputations of feet/fingers. They did tell my husband R kidney "shriveled" up during infection/gangrene. I was lucky to be alive! 2 years later, diagnosed with Sjogren's. I read another post on this site, person said has autoimmune disorder. Taking immunosuppresant tx to keep autoimmune disorder from attacking kidneys. I think the comment was "it helped" with symptoms and progression of ckd. I will ask my Rheumatologist and Nephrologist when I'm accepted as new patient. Getting referral and first new patient appt. takes so long and I feel like it needs to happen quickly to interfere w/ further decline. Meanwhile, I'll continue w/plant based diet, exercise when not too tired, and whatever else I can do to slow down the progression of ckd.

🙂

[drmind in reply to Dana66CKD]

Just a suggestion: take your own BP at home twice a day and keep a log. My BP is always high at doctors office and stable and normal at home now. Sorry you are going through this new medical issue amd hope your second opinion or new doctor helps your identity and resolve it soon. Good luck and keep us posted.

Most of us have had chsnges in our medical teams and have learned to advocate for ourselves.

[ellen3]

Hello and sorry to hear you are experiencing such a difficult time, My gfr is 15 and dropping. A best interest has concluded no dyalysis/transplant as I have extreme phobias affecting my ability to take meds and I have other health conditions. I have a strict vegan diet, have never drank alcohol, nor smoked. I am 43. I am however enjoying my life doing the things I like to do as much as I can. I wish you well.

[Mwachibwago in reply to ellen3]

Praying 🙏 for GOD'S DIVINE INTERVENTION AND HEALING.. You have already received insightful advice from others above..But am only advising you to treat the underlying conditions such as diabetes (which fortunately you don't have) BP,any autoimmune condition... Go deeper and see what causes the frequent Aki..I suffered AKI episodes last year caused by chronic UTI which affected my egfr..my egfr dropped to 11 last year..was not put on dialysis,but after treatment of the UTI and taking diabetes type 2 drugs,my egfr improved.. These days I nolonger suffer episodes of Aki (since have known the cause of my UTI -shared unhygienic staff toilets),..Have brought my blood sugar levels down from a high of A1C of 11 last year February to a low of 5.57 this month.. With diabetes and AKI,was diagnosed with diabetic nephropathy CKD caused by uncontrolled blood sugar levels last year ( scan report showed increased in mildly renal parenchymal Nephropathy)..But was able to raise my egfr from 11 to last year February to 83 this month..Am on plant based diet,VLPD,low sodium, drink plenty of water, daily brisk walking, take my medicine as subscribed by the doctor (treviamet and Empiget for Diabetes),test glucose levels after every 2 days(at home),also test BP daily (at home) and keep the records..

Once again, praying 🙏 for GOD'S DIVINE INTERVENTION

[Dana66CKD in reply to ellen3]

Thank you Ellen3. Sorry about your ckd. You are right though... got to keep living and enjoy life as much as possible!🙏❤

[Darlenia]

Hi Dana. You have multiple underlying conditions and any one of them can affect your kidneys. You essentially have gone through an acute phase leaving you with one functioning kidney. Interestingly, eGFR in the 50s or so is generally considered normal in that situation. Then, your other factors are fluctuating hypertension and your autoimmune condition, Sjogren's. In our case, we had a wonderful primary doctor who oversaw our medical team which consisted of a number of specialist. Occasionally, he would step in when he saw an oversight or discrepancy among them. Maybe you, too, can arrange a similar situation. I would start with my primary and ask for his opinion and referrals re your slate of rheumatologists, cardiologists, nephrologists, etc. Sending encouragement for a great outcome.

[Dana66CKD in reply to Darlenia]

Thank you Darlenia. I see my primary again tomorrow. I sent her messages in "my chart" to please advocate for me considering all the ups & downs I've experienced since April 2022. Asked her to call Nephro office, and request I be scheduled sooner than September, with new Nephro because of cyst, Sjogren's, hyper/hypotensive episodes with tachycardia and arrythmia episodes; and my consistantly changing eGFR. The new Nephro coordinator states: "you're not urgent or critical, so they'll see you based on eGFR results, not all the other issues which are causing my decline? Isn't that the point? Getting the experts to figure out what's causing these issues before CKD becomes critical! I'm thankful I have friends and ex-husband/wife, both worked in medical field, that I can ask questions of and advice. Many, not that lucky.😔

[Darlenia in reply to Dana66CKD]

Good! I sense your primary will put things on track for you! Hugs!

[Dana66CKD in reply to Darlenia]

Somewhat... pcp asked me to relax a little. That fluctustions in egfr are not uncommon. She's following up with arrythmia issue first w/heart monitor first. Not going to contact Nephro on my behalf and waiting till September is reasonable.😕It' my kidney health though and I feel urgency to get these consults sooner than later to avoid or delay decline in function.🙏😯

[CatOnACloud]

A cortisol level or adrenal scan wouldn’t come amiss, just in case one or both were injured with kidney(s?) because they control so many hormones and processes.

[CatOnACloud]

Doctors rarely treat kidneys as critical until egfr falls below 60. Or they inadvertently find a defect while doing another test. That’s my experience, hopefully it won’t be yours. Keep pushing best you can you’re a fighter!

[Dana66CKD]

Thanks for your words of encouragement CatOnACloud!🙏😊

[Blackknight1989]

What cat says is correct real world but incorrect regards NKF KIDGO guidelines for physicians, ASN.org and other kidney education sites. For that reason I would address it with your doc. The earlier you start to correct the cause the longer you can avoid the dialysis and or transplant.

EGFR and creatinine are tremendously inaccurate measurements. They are not to be used to determine kidney function by themselves but as a trend to monitor the function over multiple lab draws. EGFR in most of us is as much as 30/50% inaccurate regards mGFR ( true serum gfr measured and extrapolated by the lab and takes about a day). I have two separate posts near the top of the forum that contains the studies supporting this. Creatinine is as much as 80% inaccurate as so many external inputs like exercise or dehydration or because it’s Wednesday, can affect creatinine. Because of the issues with creatinine the NIDDK ( Diabetes, Kidney and Digestive) sub-anencephaly of the NIH in the US or NHS is and equivalent to NIH is Britain. However, t they developed as “creatinine standardization” formula to calculate eGFR that was used until 08/2021. In August 2021 eGFR calculation changed world over to using a new method removing race form the calculation. Most of us benefits about 5 points on our eGFR calculation. But eGFR will most likely be different if you sat in a lab and just drew blood to test every 15 minutes. As and example between December 2020 and and June 2022 my eGFR was 17, 23, 25, 27, 29, and 17. That’s a variation of almost 80% between top and bottom. Did I get better and worse no it is the nature of the lab test and normal for everyone. It is an “estimate” and as such not designed to be accurate by definition. I hope this helps and my best to you!