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  1. #1
    Junior Member
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    Dec 2013
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    25 with CKD (between stage 4-5), Brand New Patient!

    Hello,

    I just joined this forum so this is my first post! My husband, Jared, was diagnosed with Chronic Kidney Disease (somewhere between stage 4-5) last month after a routine blood test. The doctors discovered high levels of creatinine in his blood and protein in his urine, his blood pressure was 160/110. This was quite shocking to both of us since Jared is 25, healthy (or so we thought) and we have only been married for 3 years.

    The weird thing is...he has NO symptoms. He feels the same as he always has!

    Our primary doctor sent us to a nephrologist and urologist. After a CT scan and Ultrasound, the kidney doctor discovered that one of his kidneys is basically not working and the other one is functioning somewhere between 15-18%. The next week, our urologist installed a stint in his ureter after discovering a kink in his ureter and is hoping that this will relieve some pressure from the kidneys and possibly reduce his creatinine levels (we are still waiting on the results). Even if the stint helps, Jared will still either need to go on dialysis or receive a kidney transplant.

    Currently, Jared is taking Amlodipine Besylate (generic form of Norvasc) and has experienced swelling and pain in his right ankle. At first, we thought this was a blood clot and rushed him to the hospital (this was a couple of days after his stint procedure) and had an ultrasound done on his leg, the tech discovered no blood clot. The ER doctor sent us home and told us to come back if it got worse. The next day, Jared met with his kidney doctor who told him that this was a side effect of his medication. A couple weeks later (last night), Jared's left ankle began to hurt. We are assuming that it will follow the course of the right ankle and begin to swell within the next couple of days. Is anyone else on this medication and has experienced the swelling of the ankles? We are considering switching medications but are hesitant since his BP lowered to 136/90 since taking it.

    We are going to start looking for kidney transplant matches within the next couple of weeks and Jared will be undergoing tests and the surgery (if needed) at UCLA this next year. Thankfully, we have plenty of family and friends (myself included) willing to donate, we just need to see if anyone is a match. We are praying and hoping that at least one person will be!!! My husband is hesitant to let anyone donate for him. He is afraid of something happening to the donor or that the donor will need their kidney some time later in life. For this reason, he is hesitant to let anyone close to him donate.

    Anyways, that's my story right now...I am writing to see if anyone has a similar story or can provide any insight. This is new territory for us and we are scared and unsure of what will happen next!

  2. #2
    Junior Member
    Join Date
    Jul 2012
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    8
    Hi there my name is Trina just read your experience about your husband...... I don't really have some great advice but just wanted to let you know your not alone.
    I was diagnosed about 3 years ago with chronic kidney disease- it's called IgA -- I'm in stage 4-5 as well
    I was like your husband ---- no symptoms except for being iron deficient my whole life.
    It sounds like the doctors are doing a good job in being proactive whats left with his kidney function-
    I felt the same way your husband did when it comes to someone close donating there kidney.... Worried they might need it themselves.....
    I hope the best for both of you- you are a great support for your husband as well.
    Take advantage of this web site there many who have a lot of experiences to learn from
    Just wanted to say your not alone------ stay strong

  3. #3
    Junior Member
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    Dec 2013
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    Trina,

    Thank you for responding to my post! Are you able to answer a couple of questions?

    You said you were diagnosed 3 years ago between stages 4-5? Do you feel okay now? Any side effects? Are you undergoing any treatment or planning on it?

    It is so great to be able to ask questions to someone who is in the same place that we are right now. Again, thank you so much for responding!

    Chantell

  4. #4
    Junior Member
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    Jul 2012
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    8
    Hi Chantell,
    It's great to have someone responding to my response!!!! Haa haa!!
    Anyway as to how I'm feeling right now I don't feel any worse- I fact I felt worse when I first found out...... It took about 6 months for my body to actually get use to the blood pressure pill.....I'm taking Ramiprill.
    I feel Nausea a lot and some days I just feel tired.
    It's funny because I'm like your husband....... Never was really sick in my life..... But when I look back I remember being tired all the time, especially when I did running or any kind of exercise.... I mean I know everybody gets tired when doing those things but it was like all the time...... Never thought I had CKD though.
    It's great that they found out now at your husbands age..... His body at this age may be able stabilize what ever kidney function he has with the help of meds and a good renal diet.......
    I stopped eating red meat...... Infact I eat just a fistful of meat a day.... Some days I try no meat.
    Everybody is different your husband may need to see a renal dietician to see what he can work with
    What is the name of his CKD??..... Mine is called IgA nephro- somthing- it's a long name
    He should also plan to do his fistula already........ I did mines about a year ago and my vein collapsed so I gotta do it again I been putting it off.
    The first doctor gave me a ray of hope........ He said he has a few patients that have been in stage 4-5 for over 15 years and never had to go on dialysis........ That's my hope and I hope that for your husband too....... Take care

    Trina
    Last edited by TrnaDee; 12-19-2013 at 07:37 PM. Reason: Name spelled wrong

  5. #5
    Junior Member
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    Jun 2013
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    1
    Hi,
    I am in stage 4- and have had kidney disease for 35 years. It was detected in high school when given a physical fitness test- high BP. So, as an old timer let me share advice.
    1. Ask about a biopsy first so they can figure out exactly the disease type. I have fsgs.
    2. I take 5mg of amyloidipine. When I go up to 10 my ankles swell and that's not good. There are lots of BP drugs-perhaps you should ask about ACE inhibitors to lower BP since they have a protective function for kidneys?
    3. I run 3-5 times a week. I am planning on a half marathon in February. So, life goes on with a GFR at 29.

    I guess I am wondering why a transplant so fast when they could try to manage BP, look at cholesterol, and use diuretics or steroids.

    Good luck to you.

  6. #6
    Junior Member
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    Dec 2013
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    Hey Trina,

    I am unsure of the name of his CKD at this time, we are still trying to figure everything out. We just got an appointment scheduled at UCLA for March. We received news that the stint he had installed in his ureter didn't help creatin levels drop - however they have not risen either, so good news! Thank you for sharing the ray of hope your doctor gave you about not needing dialysis - I will pray for that! Good luck to you Trina

  7. #7
    Junior Member
    Join Date
    Dec 2013
    Posts
    6
    Hello,

    Thank you for your response! It's great to hear of other's stories living with CKD. Jared's doctor is out of town for a couple of weeks but I will ask about the biopsy to figure out the disease type and getting him down to 5 mg instead of 10 - as well as why a transplant so fast. Jared is very active, he surfs and golfs and works at a hospital so he is still active and busy and feels okay (minus the swollen ankles after a long day). We will be seeing a dietician soon - thank you for sharing your story. Good luck to you as well!

  8. #8
    Junior Member
    Join Date
    Jun 2010
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    14
    Hello... I was just wondered how you and Jared are doing? I am in Stage 4 CKD.. I am much older then your husband, but found out 4 years ago..

    I was just recently put on Amdopoline...10mg,,, and my ankles are swelling and so are my feet and my lower legs... doctor didn't go into specifics with me.. just telling me I needed to take lasix.. I am on lasix now.. but, it's not helping and my BP hasn't dropped to a normal level... I also feel I have breathing problems with this medication also.. the bottom of my feet are killing me.. so sore.. I'm going to call the doctor's office tomorrow.. and see what she would have me do.. and I will mention that I read many reports that Amdopoline causes swelling.. and breathing issues..

    I am also on Doxazosin... 4mg and Clonidine...01mg Has anyone else had these problems....

  9. #9
    Junior Member
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    Dec 2013
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    Hello! Jared is doing well. He got off of the Amlodopine and his swelling went down immediately. He was having pain in how feet after work too but when he stopped the medicine, that went away. He was on lisinpro and that dropped his blood pressure to normal (we were so happy) but the doctor found out that it increased his potassium to dangerously high levels. He is now on cardizum but he doesn't like it as much because he doesn't feel like it's helping his blood pressure. We hope to find a good medicine for his BP soon.

    You should definitely talk to your doctor about getting off that medication and onto another one without those side effects. My husband was a lot better off after stopping it! Good luck to you, I hope your doctor can help you find a better medication.

  10. #10
    Junior Member
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    Mar 2014
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    Hi Chantell- your husband's experience, at least the initial status part of BP levels and kidney function at 25 sounds like mine....but I am curious why are you thinking transplant or dialysis yet. If it is secondary FSGS like mine.....perhaps he could fully exhaust intense BP control, weight loss and diet/ lifestyle modification. Just curious on the thought process as I am going through same kind of self assessment in my mind....

    thanks

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