No announcement yet.

25 with CKD (between stage 4-5), Brand New Patient!

  • Filter
  • Time
  • Show
Clear All
new posts

  • 25 with CKD (between stage 4-5), Brand New Patient!


    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
    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

      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!



      • #4
        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

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


        • #5
          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
            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

              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
                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
                  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
                    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....



                    • #11
                      I guess I should give an update!

                      Jared and I went to UCLA (where he will eventually be getting his transplant) and they said that they want to wait until he is under 10% function and/or starts having side effects before they do the transplant. He is currently between 12-15%. They said this could be months or years before this happens. With good blood pressure control, his kidney could last a lot longer than we originally expected.

                      Unfortunately, we haven't had a blood pressure medicine that works without side effects yet. Does anyone have any suggestions?

                      "Sleepless"- what medication are you on? Also, can you tell me a little bit more about your story? Would love to hear


                      • #12

                        I was diagnosed with IGA Nephropathy when I was 18 (1988). I'll be 44 in May and I'm currently at between Stage 4/5 with a GFR of 22. I'm on the same BP meds as your husband was on and had similar side effects with the right ankle, but not too often. When it would swell I could barely walk, but it does has my bp under control. Prior to going on meds my bp was as hi as 275/150. I dealt with high blood pressure for years, ignoring it, and I've paid the price. The high BP has significantly damaged my kidneys, but stable. Best of luck and God bless.


                        • #13
                          Chantell- I am currently on an ACE inh, metoprolol (a Beta Blocker) and amlodipine (CCB) BP was out of whack for a year or so because I relaxed and didn't check it as aggressively as I should have when I was on an ACE and ARB together (~140/~100). Since the new regimen plus a weekly Vitamin B supplement I am now averaging (~105/~72). Before I was diagnosed with FSGS most of my other numbers (phosphorus, calcium, etc) were just marginally over- other than you know my GFR- which is around 25 right now.

                          I have made some real permanent changes in life which I believe have also helped slow this down a bit including exercising 40 minutes on most days (with a sweat suit on- to help rid wastes including salts more from body), drinking 2-3 litres of water a day, drinking nettle leaf tea in morning, taking BP meds religiously and keeping close track of BP with records, avoiding all animal proteins, any kind of coffee, tea, milk products or gluten products and of course praying. I used to love my proteins which helped me lose almost 85 pounds and rid my body of diabetes, now I LOVE my salads! Last but not least I have jumped on the learning curve to learn as much as I can about the disease. Luckily I am in the healthcare industry so I see lots of innovation ahead for people like your husband and I...but that is around 2020-22. We gotta hang on until that point. But if and when the time comes I will be on the transplant boat- so I have strated laying the foundation for it now by spreading the word to family and friends- and they have been quite supportive.

                          I am with your husband on the transplant- from everything I have heard.....I have concluded I do not want to be on dialysis. The fact is that what we need is something that can replace the function of the kidney- i.e. filter out the wastes 24 hours a day 7 days a week. Attempting to do the same for three times a week or even a few hours every day is a prescription something to go off. For me.....I am only 42, have a great wife, two beautiful young girls, a good career and zest for life- I don't want to throw in the towel yet........if I end there so be it- but I will not let this dragon take me down without a fight. I have put myself through grad school in near poverty, beat obesity and defeated diabetes.....I ain't sure as hell going to spend my days stuck on a needle- if I can do something about it.

                          Sorry for the blah blah extended note- I need to hear myself do the locker room pep up so I can keep my chin up through this-

                          Stay STRONG!
                          Last edited by sleepless; 03-31-2014, 08:56 PM.


                          • #14
                            Hello Sleepless,

                            Your desire to avoid dialysis via transplantation is admirable, though somewhat wishful. Transplantation is a demanding course for both recipient and donor. The medical approval process for both is long and very expensive, with no guarantees of approval for either. The health requirements for donors is even more stringent as their longevity cannot be compromised by the loss of a kidney.

                            Transplantation is major surgery, which typically requires three days of hospitalization. Recovery is more difficult for the donor than the recipient owed to the invasivness of the surgery. There is no assurance that the loss of a functioning kidney may not degrade overall kidney function, e.g. increase in creatinine, reduction in GFR, immediately or over time. The recipient medication requirements to prevent rejection are extensive and expensive. There is a constant threat of infection from even the common cold because of a repressed immune system (needed to prevent rejection of the transplanted kidney).

                            There is only a general range provided on the useful life of the donated kidney - living or cadaver. The variables that go into determining how long the transplanted kidney will survive are myriad. I just read an article in my city's Sunday paper about a middle aged man who is looking for his second kidney transplant. He is currently on hemodialysis three days a week, and it is taking a toll on him. He was quite surprised when the kidney donated by his sister some 10 years ago recently failed. Even with excellent genetic matching, as in this fellow and his sister's case, the donated kidney failed to survive for more than 10 years. Under ideal circumstances, a live donor kidney can be expected to survive 15 to 20 years. A cadaver kidney can be expected to survive 7 to 12 years. Even these are gross estimates.

                            There are many individual contributors to these forums who have been transplanted several times, generally starting at a fairly young age. Nearly all of them had to undergo dialysis at some point to remain healthy while waiting for a transplant.

                            I had 10+ years to think about and plan future actions to respond to a PKD diagnosis that would lead to eventual kidney failure. I was accepted for a kidney transplant in January 2011. I had an AVF (fistula) placed in October 2011.

                            I started home hemodialysis training, and with it hemodialysis, in July 2012. I was not sick and did not have any physical symptoms of kidney failure, though my creatinine (6+) and GFR (9) and BUN (60+) told a different story. I had the full support of my spouse/care partner and a competent HHD team, including my nephrologist of 10+ years to assist me in the effort. I was listed with a second kidney transplant program in November 2012.

                            I've now been waiting for a cadaver kidney for over 3 years. When I was first listed I was told that with my Type O blood, it would take between 3 and 5 years before a cadaver kidney would be become available. In the mean time, I must submit PRA/HLA blood antibody samples monthly to each kidney transplant program and undergo periodic testing to remain active on their respective lists. The additional testing is at my expense. I must also visit with the respective transplant program's coordinator, transplant nephrologist and social worker every 6 to 9 months. The hoops I have to jump through just to remain on the transplant list are appreciable.

                            If transplantation had been my only strategy to assure continued life, I would not be writing this today. HHD has given me the freedom and flexibility to continue an active work and play life and provide me with the good health needed to stay qualified for that elusive and eventual kidney transplant. I'd like to hold out for as long as I can, staying on my HHD regimen, knowing that there are plenty of unknowns with a kidney transplant not the least of which is the life of the graft (transplanted kidney), and the strong likelihood that I will be back on hemodialysis.


                            • #15
                              Originally posted by ChantellDennis View Post
                              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.
                              Thank you for answering my post Chantell.. I am so happy to hear that Jared is doing much better.. and I know that the Amlodopine was causing the swelling.. I haven't stopped it yet.. I will see the doctor this Thursday... we need to have a good talk.. I am watching my salt intake and fluid too..

                              I've also had many bouts with high/low potassium... I forgot the name of the medication they gave me to drink to lower it... slipped my mind.. I was also on lisinopril... for BP and my Dr. took me off that.. as it was really not helping me.. Thanks again for the reply...