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GFR 145 now drastically dropping. Please help

Posted , 3 users are following.

heather0703
heather0703

Hey guys, anyone out there who has any input/advice please chime in. Anything. I've been feeling unwell with what seems to be an autoimmune disease. I have been to the er 5 times in the last week with no answers. I noticed from going through my bloodwork taken at ers over the year has flagged possible kidney disease. But what's going on with my body now sx wise is intolerable. To keep it short I have every sx of kidney failure and bacteremia/septicemia/auto immune disease sx. The drs think sle, micro poly something, or collagen vascular but I have sx of all esp sjorjens and sle. I am waiting (over 2 weeks now for results)

Highlights

I was sent to nephrologist by an er doc due to a 10 point drop in gfr over the last 2 wks.

Er doc I saw yesterday (as rude as they come) told me it was impossible to have a gfr of 145 and when I went to show her she very rudely cut me off and went on to tell me she's the doctor yada yada

My bun and creatine levels are fine. Haven't changed which is why er docs dont care.

I also have nrbc cells in my blood which are now also showing in my automated differential.

When my gfr was at 145 back in October all my lab work was wacked (I keep track via an online system at one hospital which let's me see my results in time order) For example my neutrophils were at 88%...just everything was off.

Now my gfr is declining rapidly and very severely the last month. Last I checked it at the one hospital it was 88

Nephrologist I just saw gave me no information yet, as I'm a new 'emergency' patient, he was running late for a meeting, and now he will be on vacation for 2 weeks

He saw the basics, took blood work and I saw him write down kidney failure in his notes, but I'm not officially'diagnosed' with anything yet.

Please any ideas will help as I'm terrified and have been extremely I'll since last Thursday. Feels like I'm dying.

Thank you for any information

29 year old female, otherwise healthy besides lung issues which just occurred 3 months ago, an old lyme infection I had 10 years ago but was healthy for 8 years after treatment, and a recent (1 year) auto immune disease/s

0 likes, 7 replies

7 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey heather0703

    Posted

    Heather, have you been taking any medication over recent months for any inflammatory conditions?  I ask because some drugs are known to adversely affect the kidneys.  There are also inflammatory conditions that affect kidney function.
  • eric31962
    eric31962 heather0703

    Posted

    Heather I can see where MrsO is coming from: !

    I took a half asprin a day, believing erroneously it would protect me from blood clots etc, etc. G.P. prescribed large dose of Ibuprofen (for knee pain) result........ no kidney function ! And boy Oh - boy was I ever ill ! I spent three months in hospital and a further month on dialysis.

    Try to get to another specialist, in the meantime keep to every appointment. Try not to worry, live a healthy simple life. Lymes disease can take many years to clear. Thinking of you .  E

    • MrsO-UK_Surrey
      MrsO-UK_Surrey eric31962

      Posted

      Eric, I both empathise and sympathise.  During a year in pain but without diagnosis, and unable to get out of bed, I took Ibuprofen for 7 months, albeit at a very low dose because, 1) I'm pill-phobic; and 2) I have only a sole kidney.  The rheumatologist knew I was on Ibuprofen and knew I had just one kidney!  Towards the end of that horrid year, although spontaneously recovered (didn't last though!), I was diagnosed with Chronic Kidney Disease, with a reduced eGFR, which has continued reducing.

      I was so sorry to hear of your rotten experience with the wretched Ibuprofen.  I do hope you are completely recovered. 

  • heather0703
    heather0703

    Posted

    You guys dont know how much your input means to me as I really am ready to give up.

    Once a model, 29 bUT look 23, n most importantly smart, and now I can barely get out of bed n have the smarts of a 5 year old the past month. I'm just sooo delusional/confused/have this paralyzed feeling. This is my second 'flair' in a year, but way worse than the last as my organs weren't affected, and way worse than when i had lyme. Plus the looks def doesn't help me when trying to get help from drs. They look at me like I'm crazy. I think I'm finally on my way to getting diagnosis but fear it will be too late. Either my mind or my body will cave in.

    (During last flair n after very bad break up I did od and w no wanted medical help just slept for 4 days afterwards)

    I take adderall (for year and half on and off)

    Klonopin 3 mg a day

    Newly prescribed

    Steroids (today)

    Ambien

    Zofran (newly developed nausea, mind you I have NEVER been nauseous in my life. Not even 5 years ago when preg w my son. Never

    Augment (for upper resp. Infections)

    Ambien - to help sleep

    Also I am deathly afraid to take any and all these medications (again not like me, when I had lyme 10 yrs ago I was on like 5 abx at a time and a bunch of other stuff) since I've become EXTREMELY sensitive in every sense of the word, and I know it's not good for my kidneys of course.

    I have no answers yet and am still extremely ill.

    Feels like I have kidney failure, shock, bacteremia, hypoxia, and so so much else. All at once.

    Do you guys know if having such low immunity/autoimmune affects blood results?

    Also for the first time since I've began periodically checking my urine (esp on sick days) it is crystal clear. More clear than water. What is going on ? Oh geezzz

    • MrsO-UK_Surrey
      MrsO-UK_Surrey heather0703

      Posted

      Heather, chin up and stay positive a bit longer.  You will soon have the blood test results and hopefully the correct treatment from that point.

      You mentioned being unable to get out of bed but haven't said what your specific symptoms are, for instance have you got pain in any areas of your head or body?

      You say that your eGFR is 145 and continually dropping.  I don't recognise this reading as being low, so assume you are not in the UK where the labs measure differently?  For instance my latest eGFR reading was 41.

      You mentioned having an auto immune disease - do you mind me asking which one....there are so many?  Auto immune diseases can cause high inflammation in your body and make you feel very ill, including the nausea you mention - I know from experience.  That inflammation needs getting under control to avoid risk of organ damage in some cases.  However, the good news is that you now say you are on steroids so the inflammation should soon be under control and allow you to feel better, although as we know steroids themselves can have their side effects but most of these can be managed.

      Yes, autoimmune problems usually show up in blood tests, but not always.  For instance, where inflammation is concerned, two specific blood tests, the ESR and CRP will show raised markers in many patients.

      Do get your list of medications checked out by a pharmacist to ensure they are compatible with each other.

      Hopefully you will soon start to feel better on the steroids - good luck with your next appointment.

  • eric31962
    eric31962 heather0703

    Posted

    Please, don't be concerned about appearance, it will get better. These are the symtoms of kidney disease that you describe.

    Unfortunately illness is part of life. Please don't think for one second that we don't care .we do. No one can help you through a computer except to urge you to be positive and to keep on at doctors ...  The crying baby gets the milk. ... Sad reality of the Health Service..

    Keep safe, you need people whom you can trust, don't be used by cranks, who offer cures etc. There are no easy treatments, but you have youth on your side you will get better and look back on this richer and wiser from the viewpoint of experience.

    Thinking of you Heather and wishing courage and health. Regards, Eric

  • heather0703
    heather0703

    Posted

    Thank you so much for your positive results. I promise I will reply to each of you when my mind is better. If anyone can please help me translate these newer results done at an er using a different method, I'd be very thankfull as my anxiety might kill me alone. I don't understand. The hospital er docs said I was fine.

    will write down the info exactly as documented on my results received via email. Also hospital (er) told me nothing was wrong so im very confused

    Analytic

    Value ref range

    85 >60

    Comments:

    **Egfr calculation from serum creatine value**

    **Interpretive Guidelines**

    CKD : < 60="" ml/min/1.73="" m2="" kidney="" damage="">< 15 ml/min/1.73 m2

    then ref ranges for normal results

    what do interpretive guidelines mean ?!

    and why does it give a kidney damage measurement. i've never seen this before. please help. i am so scared. i tried researching but couldn't find or maybe just can't exactly understand as my brain is foggy and my mind is clouded with anxiety.

    15="" ml/min/1.73="" m2="" then="" ref="" ranges="" for="" normal="" results="" what="" do="" interpretive="" guidelines="" mean="" and="" why="" does="" it="" give="" a="" kidney="" damage="" measurement.="" i've="" never="" seen="" this="" before.="" please="" help.="" i="" am="" so="" scared.="" i="" tried="" researching="" but="" couldn't="" find="" or="" maybe="" just="" can't="" exactly="" understand="" as="" my="" brain="" is="" foggy="" and="" my="" mind="" is="" clouded="" with="" anxiety.="">

    then ref ranges for normal results

    what do interpretive guidelines mean ?!

    and why does it give a kidney damage measurement. i've never seen this before. please help. i am so scared. i tried researching but couldn't find or maybe just can't exactly understand as my brain is foggy and my mind is clouded with anxiety.

    >

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