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Lost. Could it be CKD? 26yrF.What was your experience?

Posted , 7 users are following.

Alindsey
Alindsey

I am 26 years old, female. I have three children. Each pregnancy grew more difficult. My last I did have protein in urine, extremely high blood pressure, preeclampsia, delivered 4 was early and was sick for the week. When I was 19 I had surgery done to fix urinary reflux, I had chronic kidney infections and uti ever since I was a baby and grew worse as I got older, but resolved after surgery.

This past year my blood pressure has rises again and still high even with meds. I have episodes of stroke or seizure like symptoms. I have only had borderline abnormal ecg, but my kidney level have somewhat dropped in time

Gfr >60 , 58, 53, 58, >60. Protein was found in my blood, but not urine and slight blood in urine but nothing extreme. I have been getting worse everyday weakness out of breath nausea head aches tremors muscle pain. I fee like I'm dwindling away. I believe I have noticed any amount of physical exertion even talking can cause me to get sick and out of breathe. I pee often at night 2-3 times usually.

My question is, I have seen online that it doesn't seem to concerning when your GFR is not under 35...? Is this calculation considering the person as a whole? I'm fairly younger, healthy weight, was active until past month, I don't smoke, I don't have diabetes...been running a 99-100 temp for a month now. Thyroid is cleared and been tested and according to ER I am not dying right now 🙄. But considering it all is this a concern? Could this be causing my symptoms? I'm at a point I can't drive much limited my work and caring for my kids. I'm sick,..PCP agrees there is a concern and will be seeing a specialist but now I am worried when I go see specialist they will not listen and understand or consider everything.

Anyone else with similar situations? Advice? Opinions?

0 likes, 12 replies

12 Replies

  • LynQ
    LynQ Alindsey

    Posted

    Poor you!  That's a lot to cope with especially as you have young children. it does sound as though your GFR is Ok, but sometihing must be causing your symptoms.  it is important to get your blood pressure under control as high BP can damage your heart.  Why not go back to yout GP and tell him all the things you have said here and insist on being reffered to a specialist?  I'm not a doctor so it is hard to speculate on what can cause your various symptoms but a consultant phsician should be able to do this.  Just badger them until you get referred. Don't suffer in silence.  You are too young to have to cope with all this.  Good luck!

    • Alindsey
      Alindsey LynQ

      Posted

      I had a GP and he sucked. I have a new one and she is concerned because she is seeing my kidney level seem to be declining on top of my symptoms. I have been in and out of the ER due to the severity of the symptoms. 

      I understand my GFR is OK, but is it ok for otherwise normal healthy 26 year old? I don't mind trying new blood pressure meds, but i have been slowly declining in over al health and dont wan to cover up my blood pressure if it may be a sign of something more... I am aware that it can cause damage. One ER doc said they were concerned that my kidney's were getting damaged by the high blood pressure. 

      Today my blood pressure, taken every hour, is about 130-150 / 90-111 

      I am calling around to see if a specialist can get me in, but most are seeing me as a new patient so it could be months before I am seen. 

      They have done tons of blood work. So far nothing crazy...my blood protein was abnormally high is what they said along with other numbers. My Creatine was considered high but just by one or two points. 

      Most docs look at me and see me as healthy and don't get it either and are quick to say I have anxiety...My profession is in mental health...I know what anxiety is and what it can do, but this is not it. I want to feel better. 

      I am waiting on some cultres for blood work about any infections that may be in my blood, I should get those tonight. 

  • rocky31676
    rocky31676 Alindsey

    Posted

    GFR level can fluctuate at times, but if > 60 then there should be no concern. 

    Do no understand what you mean calculation of GFR for the person as a whole?

    What is your BP ? 

    Protein is normal in blood. Have you checked why you got slight temperature 99-100, any infections, UTI again ? Specialist should tell you more.

     

  • helen54849
    helen54849 Alindsey

    Posted

    Hi,

    I am sorry to hear what you are going through it will be a struggle for you right now.  Your GFR isn't alarmingly low and looking at your results it has dipped slightly then returned to around the 60 mark which isn't too bad.  You say you are on BP meds, they will be different to what we have in the Uk, but if they are not working perhaps it is time for a change or pair them up with another type.  Some meds do not work effectively on there own.  Also some BP meds can effect your GFR lowering it.  A GFR is also only a best guess, your creatinine level is the accurate one.There are so many different BP meds on the market there should be lots that you can try until you find the right ones for you that also help your BP.  You need to get this under control as it will make you feel unwell if it is high.  It also risks stroke, heart attack and kidneys don't like high BP.  The fact you have a temp suggests that you may have an infection of some kind, has this been ruled out?  If you haven't long had a baby it may be worth having your iron levels checked if you haven't already as low iron can cause fatigue and breathlessness. Beining in the US you pay for your care so make sure you are listened to and taken seriously, if not find another doctor.  CKD doesn't usually have symptoms until the later stages that is why it is known as the silent disease.  You have symptoms and there must be a cause so you do need to find out why you are having them.  I do hope you find out what is what and I wish you well with your appointment.  Please do come back and let us know how you get on.

    • Alindsey
      Alindsey helen54849

      Posted

      I had a GP and he sucked. I have a new one and she is concerned because she is seeing my kidney level seem to be declining on top of my symptoms. I have been in and out of the ER due to the severity of the symptoms. 

      I understand my GFR is OK, but is it ok for otherwise normal healthy 26 year old? I don't mind trying new blood pressure meds, but i have been slowly declining in over al health and dont wan to cover up my blood pressure if it may be a sign of something more... I am aware that it can cause damage. One ER doc said they were concerned that my kidney's were getting damaged by the high blood pressure. 

      Today my blood pressure, taken every hour, is about 130-150 / 90-111 

      I am calling around to see if a specialist can get me in, but most are seeing me as a new patient so it could be months before I am seen. 

      They have done tons of blood work. So far nothing crazy...my blood protein was abnormally high is what they said along with other numbers. My Creatine was considered high but just by one or two points. 

      Most docs look at me and see me as healthy and don't get it either and are quick to say I have anxiety...My profession is in mental health...I know what anxiety is and what it can do, but this is not it. I want to feel better. 

      I am waiting on some cultres for blood work about any infections that may be in my blood, I should get those tonight. 

      Thank you for the support everyone. 

    • Alindsey
      Alindsey helen54849

      Posted

      I had a GP and he sucked. I have a new one and she is concerned because she is seeing my kidney level seem to be declining on top of my symptoms. I have been in and out of the ER due to the severity of the symptoms. 

      I understand my GFR is OK, but is it ok for otherwise normal healthy 26 year old? I don't mind trying new blood pressure meds, but i have been slowly declining in over al health and dont wan to cover up my blood pressure if it may be a sign of something more... I am aware that it can cause damage. One ER doc said they were concerned that my kidney's were getting damaged by the high blood pressure. 

      Today my blood pressure, taken every hour, is about 130-150 / 90-111 

      I am calling around to see if a specialist can get me in, but most are seeing me as a new patient so it could be months before I am seen. 

      They have done tons of blood work. So far nothing crazy...my blood protein was abnormally high is what they said along with other numbers. My Creatine was considered high but just by one or two points. 

      Most docs look at me and see me as healthy and don't get it either and are quick to say I have anxiety...My profession is in mental health...I know what anxiety is and what it can do, but this is not it. I want to feel better. 

      I am waiting on some cultres for blood work about any infections that may be in my blood, I should get those tonight. 

      Thank you for the support everyone. 

    • LynQ
      LynQ Alindsey

      Posted

      I'm sorry that you are having such problems. Your blood pressure seems rather high for a 26 year old if it reaches 150. Have you had 24 hour monitoring?  This would give you a day and night time average. High BP will damage kidneys eventually so if it is higher than it should be, you mght have to take medication to control it. There are good ones available now.  If you still don't feel well keep asking questions until you get a sensible answer-sometimes that's the only way.  Good luck.

  • Alindsey
    Alindsey

    Posted

    An update: went to doc who said that my GFR is 53 and Critine is 1.3 blood pressure a high. I had some left side pain last night come and go sight right side. Still don't feel good. Getting referral for specialist and some ultrasounds. My past cultrasiund in 2014 did show scaring on both kidneys

  • JB950
    JB950 Alindsey

    Posted

    Gfr under 35 is concerning. Please don't be afraid to go to doctor. Better safe. If you don't like the doctor you go to you can always go to another. Don't be afraid please

    • Alindsey
      Alindsey JB950

      Posted

      I have found a nephrologist who seems to be taking me seriously and is frustrated no one has fought this before. He confirmed I am stage 3 but is worried what is causing the sudden decrease and over all health. He mentioned some possible rare diseases, aHUS, I think is one. So once I am done with testing we will go from there. I'll keep you all updated

  • doug68605
    doug68605 Alindsey

    Posted

    You should have an ultrasound of your bladder to see about urin retention I had similar symptoms and it turned out to be hydonephrosis due to a small growth in the bladder neck. Had symptoms for over a year and ignored them which led to severe kidney damage. I might add that a nephrologist deals with the chemistry and a urologist deals with the mechanics. Hope this helps.
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