Anyone with kidney disease +DD- like to talk with you

Discussion in 'Fibromyalgia Main Forum' started by russiankids3, Jan 26, 2006.

  1. russiankids3

    russiankids3 New Member

    I was wondering how others with this DD cope with the additional symptoms associated with kidney disease, especially as it gets further along towards end stage renal disease.

    I am now at 28% function and feeling tired and sick from this plus more tired and sick from CFS/FM. Nephrologist already discussing dialysis with me.

    I have tried boards on kidney disease, but they are slow and really not that informative.

    Please respond if you can offer any advice or just to talk. I am getting more scared as my function drops and worry about dialysis in the future.

    Thanks,
    Sue
  2. russiankids3

    russiankids3 New Member

    although maybe there is no one to answer--(no one with kidney disease).
  3. kim813

    kim813 New Member

    I am new to this message board and would like some info on your Kidney problems/ i.e. symptoms, how long, how you were diagnosed etc.
    I have been complaing about kidney pain for two years, and a 2.5 cm bright spot showed up on an MRI they did for my lumbar. I am being referred out, but can such a small cyst cause so much pain ALL the time?
    Are there any specific blood tests that can help with dx.
    Also, what is DD. I didn't know how to e-mail you directly,
    so hope you know how to e-mail me back. As you can tell, I am not computer literate like you all! :)
  4. whoachief

    whoachief New Member

    it's a big step but VERY necessary in many situations. My mom was on dialysis for about 3 years before she passed away from heart problems. Just make sure you check into the different types of dialysis that are available. My mom did hemodialysis at the dialysis center 3x a week until she had surgery and did peritoneal dialysis at home every night while she slept. Peritoneal dialysis is not an option for everyone but it was MUCH Easier on her to be able to do it at home while she slept than going to the center 3x a week for several hours each time since my dad was terminally ill at the time & my mom wasn't comfortable driving herself. Good luck & if you have any questions I can answer for you I'll certainly try my best!
  5. russiankids3

    russiankids3 New Member

    I don't have time right now to chat, have to run with my kids. Will get back to you both.

    Sue
  6. KJH_10

    KJH_10 New Member

    I have a kidney disease called polycystic kidney disease, I am currently still at %100 function, but I also would be interested in hearing how others cope with it. I do not have any problems now, but as I get older, my kidneys will progressivly get worse. HOpefully by then there will be a way to regress the disease. My kidney disease is genetic.
  7. Adl123

    Adl123 New Member

    Dear Sue,
    I'm sorry you have this. It's scary, is't it?

    I have a minor kisney disease, from diabettes. My kidneys are leaking protein. They still funcion well, though. I keep to a low protein diet. As for me, there is nothing else I can do because surgery is not an option , as I have adverse reactions to anesthesia and painkillers, and cannot take antibiotics.

    Good luck, I hope it all workis out for you.
    Big Hugs,
    Terry
  8. gwheezy41

    gwheezy41 New Member

    Hi I also have diabetes and was told that I have protein in urine, I think it was called microalbumin and it was 81. Can you tell me if this is very bad? I can never get the doctor to explain to me what it means. He just gave me a sample for a low protein diet. And here I was just catching on to eating a low carb diet, now everything is changing. Very confusing! Thanks, Virginia
  9. russiankids3

    russiankids3 New Member

    Sorry it took me a bit to get back to all of you.

    Hi Kim813,
    Sorry to hear you are in so much pain with the cyst on your kidney. I was checked one time for a possible cyst they saw on an x-ray, but none there.

    You said you are being referred to someone-what type of doctor, a urologist? Is there any family history of polycystic disease? This is a inherited kidney disease where cysts take over the kidneys and there function eventually decreases. Don't be scared that I'm writing this about Polycystic disease--Maybe they will check you for this. I believe a cyst could give you some pain.
    I've had lots of tests done both blood and otherwise. It would be too much to list them all. With the blood results they check creatine, BUN, protein and some others to see if this indicates any decreased kidney function.

    We don't give out our personal e-mails so I can keep talking to you on this board if you want. Just remember to ask a lot of questions and don't be afraid to tell docs if you don't understand what they are telling you. That medical jargon can get real confusing!! Let me know what happens, OK? Blessings to you.
  10. russiankids3

    russiankids3 New Member

    Love your moniker!!! I read your profile just now and we have so much in common, not all of it good though. My birthday is Jan.5th so we're both capricorns--we're about the same age too. Also you have three adopted kids and so do I! I guess since you're a foster parent too, I could ask you questions about adopted kids. My three are all special needs and it's a lot of work!! How do you manage?

    I'm so sorry to hear that your Mom died. How old was she?
    My Mom is on dialysis presently and goes 3x/week. She also has major heart problems. She's been on for 4 years and is always sick and so exhausted. She had the same inherited KD as me and finally lost all function when she had congestive heart failure and needed a aortic valve replacement. Her KD did not progress as quick as mine is now. She is 63. Her mother died of same KD at age 41 many years ago. Back then there wasn't too much they could do for her.

    I'm hoping when the time comes that I will be able to do peritoneal dialysis. I have high blood pressure, high cholestoral, large amounts of protein spillover in my urine. I have been on meds for each of these, but with not much success. I have reflux nephropathy with IgA nephropathy (double whammy). I was dx.d at age 21, I think, and had only 50% function when they found it. Had ureter reimplantation on left kidney then and nephrectomy of right a year later. I also have a neurogenic bladder which doesn't help and at times I have to self-catherize myself.

    The nephrologist said I may last a year before having to begin dialysis, but he couldn't guarantee this of course.

    I'm now so happy I could never have kids due to infertility and this KD. Would hate to pass this on. I also have early-onset Parkinson and so does my sister and my dad. I guess our genes are not gonna win any contests:)

    Do you think your Mom may have lived longer if not for her surgery? You have been through so much with your parents. Is your dad presently living? I'm assuming the answer is no.

    By the way-that is so cool that your 99 y.o. grandma lives with you! Must be an active household,huh??

    Thanks for replying- I'm just scared of what is to come and appreciate your concern.

    God bless,
    Sue
    [This Message was Edited on 01/27/2006]
  11. russiankids3

    russiankids3 New Member

    I just wrote a lot above and I'm worn out. I'll get back to you gals tomorrow. Thanks for caring.

    Sue
  12. Cromwell

    Cromwell New Member

    but that is usual for my age I understand. The cyst is getting larger each year and probably due initially to kidney stones two times in past. Please be careful using the magnesium esp. oxide as it can affect the kidneys in people with HX as can other vitamins and minerals. Kidney pain is usually felt in two places-if you bend your elbows and trace a line to your back and go up an inch or so, this is where kidneys are in body. They can also produce flank pain(down insides of hip bone)also. The bright spot on MRI may indeed be stones.
    Love Anne
  13. rbecca47

    rbecca47 New Member

    I know that it is painful and hard to deal with. I have had one kidney removed, and the other reconstructed. I suffer from a over abundance of kidney stones, the left kidney was completly calcified, the right kidney was deformed. I tend to produce stones like a factory. I can't take most pain meds because the filter through the kidney's. So I suffer in silence. The pain from this DD is at times paralysing. Now i am looking at more stones in good kidney. I have uti's alot. All I can say is hang in there. I will pray for you and I am so sorry that you suffer with both this DD and kidney problems.
    Hugs, Becca
  14. russiankids3

    russiankids3 New Member

    You were diagnosed at a young age like I was. This is a good thing because you can start now doing all the good things for your kidneys. I'm glad you are at 100% function and I pray you will stay there for a very long time. You are right--treatment for kidney diseases is getting better and better so I hope you will live a very long life with the new developments over time.

    Do you need to see urologist periodically to have testing and check your function? Who in your family has or had this disease? These inherited diseases give us a strike against us right from birth, but most kidney diseases are very preventable if people control diet, blood pressure, diabetes complications, etc.

    Take care.
    Sue

    P.S. Love the city of Pittsburgh-I used to live in PA.
    GO STEELERS!!!!!
  15. russiankids3

    russiankids3 New Member

    Sorry to hear of your kidney problems on top of this DD. I am fortunate not to be a diabetic or things for me could be so much worse. I hope both of you continue to take care of yourselves . Thanks for being supportive of me--I really need that right now.

    Hugs,
    Sue
  16. russiankids3

    russiankids3 New Member

    How much function do you have left and is there surgery in your future? So sorry you have to battle this disease :( Does your growing cyst cause you a lot of discomfort and impact on this DD?

    I grow more fatigued , retain water(edema), and hurt all over as this KD progresses-I'm sure it has to have a large impact on my FM/CFS. I also have flank pain and can't take pain meds. I have to watch everything I do and what I take into my body and this gets me depressed. Can't even take Tylenol for constant headaches and I'm allergic to aspirin.

    I'm hoping I'll be a candidate for transplantation. With my KD the one year success rate is only 32%. Refux and IgA nephropathy continue to work on the new kidney. It's going to be a hard decision to make when or if the time comes. I have three kids at home so I have to make the best decision.

    I appreciate your response -- Thank you.
    Take care.
    Sue
  17. russiankids3

    russiankids3 New Member

    for responding. I was touched that so many people answered my post and let me know I am not alone in this KD battle.

    Becca, you have been through so much!! Bless your heart! Do all these chronic illnesses get you down? How do you deal with it? I am very scared about how long I will live. It doesn't help that my mom is on dialysis with same KD and not doing well at all.

    Thanks for your kind words and back at you---hang in there. So sorry you have to face this .

    Hugs,
    Sue
  18. whoachief

    whoachief New Member

    We do have a lot in common. Scary, huh? LOL My mom was 74 when she died. She was diagnosed with "kidney problems" when she was 21 or so and spent a month in the hospital at that time. fortunately for MANY years she had no treatment other than low sodium diet which was for kidneys & blood pressure. She passed away in Nov 2002. My dad passed away in May 2002. He was 76. He had struggled with cancer for 2 years before he passed on - my it was a L O N G 2 years for him. My grandma does live with us. She does pretty well for herself still thankfully. I was going to ask you if a trasnplant was a possibility for you but you already answered that question in one of your other posts. My mom MUCH preferred peritoneal dialysis but like I said it isn't for everyone. Hope you're feeling good today & have a good weekend.
  19. sues1

    sues1 New Member

    I was wondering about transplants also as I read this thread.

    I have always been down as a donor, anything that is needed.

    But I have been told that I will not be able to do this, after I came down with CFIDS and FIBRO. That was because the syndrome is of unknown reasons and it can not be chanced to use a organ from my body.

    Has anyone else been told this?

    Now I have other things and I know that my body will never be used for a transplant of any kind. Sad. More people need to donate! Blessings to all of you
  20. Cromwell

    Cromwell New Member

    No I don't have pain (except when I had the stones-worse than triple labor no painkillers!) My doc beleives the cyst is not going to cause any more problems and I hope this is so. It is my understanding that everyone sooner or later gets cysts in the kidneys, and they are pretty harmless, so nothing like your disease, of which I am thankful. I do recall that as a child in the UK we used to eat a lot of lamb's liver(this was pre vegetarian days) as it tended to have no cysts(being young animal) compared to cows liver which was always cystic. My last blood work showed slightly impaired function but nothing unusual for my age, though this is the first time it has showed.

    Gosh, I don't know how you maage with the DD, your wonderful family of adopted children AND the kidney disease. You must have tremenous strength. God bless you.
    Love Anne