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  1. #1
    Junior Member
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    Jun 2014
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    New to this and terrified.

    Hi Guys and Gals,

    I'm a 27 year old mom of a 4 month old from the Midwest. I haven't been fully diagnosed yet but from my labs and symptoms it's looking like I'm stage 3 CKD. A bit of background. I've suffered flank pain and other problems related to my kidneys since I was very young as well as chronic dehydration, borderline anemia, and gross hematuria. This was found at around age 6. They couldn't see any direct causes at the time for these problems from my kidneys and I stopped having pain so my parents gave up looking for the cause. As I went on through life I had problems with athsma, pericarditis, continued hematuria, anemia, a cyst that developed in my brain, seizures, migraines, the works. I'm finding out now a lot more of these problems are probably and were probably associated with my kidney issues. Last year I became pregnant and my pregnancy progressed pretty normally till almost the third trimester. I still had and have the hematuria of around +4-5. I work in a very physical job and almost couldn't walk one day when I came home at 30 weeks along. I was swollen from head to toe, very badly. I ended up seeing a nurse practitioner who brushed it off but said I should see a urologist for the hematuria and sent me on my way basically saying, meh, you're pregnant, you swell, deal with it. I went to the urologists office and of what they could see my bladder and tract were fine but my blood pressure was now quite high and I was also spilling protein into my urine.

    I went to my ob and he sent me to the hospital for a 24 hour urine collection. It yielded 1228 in the 24 hours. The second collection I did 3 days later was 1568. They did labs thinking it was pre e which technically they have now said it was but no problems with my liver enzymes and my bp went back down. Still the hematuria, protenuria and swelling. I went back and forth from the hospital and was classified high risk. I was at my high risk appointment at 33 weeks and 5 days and my sons heart rate was rapidly declining on and off. Through a long and horrid series of events we found out my placenta had become a calcified 48 week placenta and was almost completely useless because it was unable to continue to filter all of the toxins in my blood. It was killing the placenta and in turn depriving my son. He was delivered at 33 weeks and 6 days at 3lbs 6oz and spent a month in the hospital. Here I am 4 months later, and have found at that during my pregnancy and the last time my filtration rate was checked I was at a GFR of >60 almost the entire pregnancy.

    I have another appointment set with the urologist and an appointment to see a nephrologist I was referred to by my OB. They are telling me that with protenuria, hematuria, and the GFR rate those are all indicative of stage 3 CKD. I am also suffering with extreme flank pain, diziness, nausea, vomitting, constantly feeling dehydrated, feeling weak, shortness of breath, and chest pain. I also have blood pressure that's been reading high often and today it took a dive and is at 93/62. I'm doing my best to hold it together but I'm terrified and don't know what to expect or where to go from here, and the internet is a dangerous place. I hope that perhaps I can share my journey here with you all.
    Last edited by bravelittletoaster; 06-19-2014 at 01:42 PM.

  2. #2
    Senior Member
    Join Date
    May 2014
    Posts
    119
    Oh my goodness! That sounds horrifying... I'm so sorry to hear that you had to go through that during your pregnancy and have to go through it now. Thank goodness your son is ok. You both sound very strong.

    It's good that you have an appointment to see a nephrologist. They will be able to give you more guidance and next steps.

    I know it can be scary... but stay strong and know that there are thousands of others in this community who know exactly what you're going through. Keep us posted! Wishing you and your family the very best.

    Caitlyn

  3. #3
    Junior Member
    Join Date
    Jun 2014
    Posts
    2
    Quote Originally Posted by CaitlynAtDaVita View Post
    Oh my goodness! That sounds horrifying... I'm so sorry to hear that you had to go through that during your pregnancy and have to go through it now. Thank goodness your son is ok. You both sound very strong.

    It's good that you have an appointment to see a nephrologist. They will be able to give you more guidance and next steps.

    I know it can be scary... but stay strong and know that there are thousands of others in this community who know exactly what you're going through. Keep us posted! Wishing you and your family the very best.

    Caitlyn
    Thank you Caitlyn. I appreciate it. The scariest thing is I don't want to go back to my job right now so i'm on an unpaid leave of absence. I started it because I injured my arm last year and had to have tendon surgery. I build cars on an assembly line for a living and often don't have the ability to go to the restroom or hydrate myself properly. Depending on this outcome I'm fairly certain I won't be able to return to my current career. ;-( I appreciate the support and hope to get advice from those here who are/have been in my position.

  4. #4
    Junior Member
    Join Date
    Apr 2012
    Posts
    15
    It can be scary. I have also had anemia, high blood pressure, joint pain, iritis, and am in stage 3. I I have been on Lisinopril for 8 years ( I'm 51) and my GFR has been stable for six years but has dropped in the last two. Watching your sodium and exercising makes a difference, at least it has for me. I will say that I do have to go to the restroom a lot and luckily have a work environment where that is ok. I wish you well and this is a great place for support and information.

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