LUPUS UK
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Stage 3 kidney disease

Anyone have SLE and kidney disease?

I knew my kidneys weren't great, but I was hoping dialysis and kidney transplant were not going to be something I had to address anytime in my lifetime.

I am trying to stay calm, but need the support of this community right now, because my husband is not responding at all to this information. (How did I just change my font style? Lol)

Anyway, if anyone has some helpful words of advice, they are greatly needed right now, because I have tried for 4 yrs to do this all on my own, and I just want to cry.

The nephrologist I found is really nice, and appears to be one of the good doctor's. I am lucky.

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Natura,

Sorry about your kidney news. I went through a bad flare about 5 years after being diagnosed with lupus and it also scared me. I was single and went for cyclophosphamide IV for 4 months when the pills where not cutting it. It put me in remission and although the long term side effects probably screwed up my white counts 25+ years later, I think it was one of the best things I ever did. Of course myco was the second best after a current flare. I can't remember if you were just doing mainly natural remedies or not but I hope your new Nephrologist continues to impress. I know this support group is very special in that they are there when family just doesn't understand what you are going through. I think sometimes that my life evolves more around me than around my husband's needs but that is how life with lupus is unfortunately. You have to look after yourself first in order to get through this. Some people can handle the stress of a loved one with an illness and some can't. Your partner may also have something going on that he doesn't want to burden you with which also may cause him to pull away more.

I know I babble on but,.. if you can keep up with your daily routines together, things will start to improve. Structure goes a long way.

Stay strong. Good luck with your next appointment.

Roanna

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What a lovely , well considered reply Roanna, I too have had six months of Cyclo infusions recently , and am currently on Mycophenylate, not specifically for my CKD but the bonus has been that the meds have helped it considerably. Like Dalilatm (see reply below) I had no clear signs of the CKD, it was part and parcel of what I now know was a Lupus flare about eight years ago, at that time my lupus was undiagnosed and the major problem was Crohns and Colitis and also Diabetes, osteo arthritis, and chronic iron deficient anaemia, now I know that these things were all from my bag of Lupus goodies!

I check my urine regularly with test strips from Amazon, and my blood work is done two weekly, WBC is stable at present, but I do work very closely with my diabetes nurse, the DMARDS and high dose steroids play havoc with my blood sugars and so we are constantly adjusting my Diabetes meds.

Ditto the advice from Roanna , stay hydrated ( really important) rest and gentle exercise, and watch your diet.

Good luck

C.c x

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What are cyclo infusions? Is it possible I can save my kidneys. I have to make an appointment for a sonogram, and he wants me to do a bunch of bloodwork.

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Cyclophosphamide infusions, the 'gold' standard DMARD. A kind of chemotherapy , used to be used for cancer patients but not very successful, is VERY successful for autoimmune issues, and slows the progress of disease damage down.

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Thanks Rosanna...your caring words go a long way. My husband is going through something too. You are right. His grandfather had alzheimers, and he is having memory issues and he is only 51. I fear mostly for my 2 beautiful daughters who are

only 15 and 17. I love them so much that I am afraid for them. I lost my mom to illness when I was 11. That is why this is hitting me so hard.

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Natura no wonder why it's hitting you hard. But take heart because you're under a good nephrologist now and have learnt for yourself how to use diet abs natural remedies to good effect. Clearly this is not enough for CKD but there are drugs which people have mentioned here which may well get you into remission. We all understand here about family and the difficulties with conveying the seriousness of our diseases. You have somewhere to come where people (your online friends) understand. I hope the memory issues your husband is experiencing can be investigated. At least he has good reason to be distracted.

Poor both of you. But hopefully treatments will be very successful and you will both live to be a grand old age. Twitchy X

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Natura, you have been so upbeat every time I read anything from you on here. You and your husband both are probably great at adapting to what ever is thrown at you and in turn your lovelies will have learnt to do the same. (They may not realize it yet though).

The doctors scared the heck out of me also but I think they have to give you a worse case scenario so you prepare yourself better. Sometimes I wonder if it weren't for me having someone to look after, I wouldn't be here still but it's being needed that keeps me going.

Stay strong and good luck with your next visit.

Roanna

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Hello!

Yes, I do. Stage 3, too. Diagnosed two years ago in the middle of a flare that included haemolysis. After three months of steroids and Cellcept my kidneys were responding and back to normal. I don't know when my kidneys started to suffer as I had no clear, visible symptoms of kidney problems. It was a blessing that my doctors were so experienced and saved me.

Nowadays, they are stable. But you always have to keep an eye on them. The treatment lasts about two years, but it will also depend on your progress. Nothing to be scared of. Take care of yourself, take all your daily pills (don't miss any), try not to feel stress, no smoking at all, good balanced diet (you can find online good diets for kidneys), no extreme exercising and constantly check your protein in urine till it's all fine. I regularly get the urine tests strips on Amazon or EBay. They are easy to use and if I'm not feeling well plus I have too much protein in urine for several days, I book an appointment.

Good luck! :)

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Dalilatm...good news is I didnt have protein in the urine today. But, dr is concerned that my function dropped so much in the last 7 months. I am trying to pinpoint what happened 7 months ago. I went on a program to heal my gut and liver. Maybe it wasnt the best idea for me. I dont want to go on meds, but I cant let my kidneys progress to not working at all.

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I understand. As you said, that program could have been the reason. Kidneys like stability and balance, in food and life. So it's better to take it step by step and be more traditional. They do heal. And, it's now or never. We were lucky to find out when it was still reversible (stage 3). Unfortunately, there's nothing we can do about the meds. But, thankfully we have them, and they work. When I see that one of my organs isn't working as it should, I imagine all the pain and suffering that must be going on inside my body and that we can't see. All those good cells fighting against each other, like a family fight, and that gives me the strength to take all my pills. It's my way of helping to stop this and go back to peace and balance :)

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So sorry Natura at your kidney news!. Glad though you have a good nephrologist and I hope you both work together to get good treatment for them. Keep posting and take care. X

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Hi, I'm sorry you're having to go through this feeling unsupported at home. It's scary as you say to know that you have kidney failure and there's nothing you can do to stop it's progress. When I was diagnosed with SLE in 2000 I already had a degree of renal failure and was told that eventually I would lose both of my kidneys function. I had 5 cycles of iv cyclophosphamide at my hospitals oncology department. It was supposed to be 6 but after 5 id had enough. This did slow down the inevitable end stage renal failure and I managed to get to the end of 2004 before I was extremely ill. My createnines were 1600!! 😮 I was still going to work but boy did I feel unwell and poisoned due to my kidneys inability to filter out the body's toxins. I was being very stubborn in not giving up and allowing the start of dialysis to happen. Anyway after my first grandchild came into the world safely in Jan 2005 I let the dialysis department 'have me'. I tried 6 weeks with the peritoneal dialysis but it was not for me sadly and after 2 ops for a tenckhoff and those not working I had to have an emergency vascath, a line into the neck to start heamidialysis immediately. This was started gently and then built up until I was going on a machine for 4 hours, 3 times a week. The vascath became a heamocath, a line in the chest and then I had a fistula made in my arm to dialyise through. You have to follow a strict diet avoiding caffeine and foods with potassium, Tomatoes, dried fruit, bananas etc. You may stop producing urine and have a very strict daily fluid intake which is an extremely small amount. This didn't happen to me personally though. I still went to work daily all throughout my dialysis time. It's important to follow the rules and take all your meds and you should be ok. I was lucky enough to be opted in for transplant and have a unrelated live donation from a friend back in March 2006 which was and is still successful. Life will change for you, try not to be too scared as you will be looked after very well by renal staff that are amazing. They will do their utmost for you to keep you as well as possible. I found that going to dialysis was like being in club and a huge one at that. There's an enormous amount of people on dialysis so if this becomes you, you won't be alone. I do hope your husband comes around to bring a rock for you. Could he be frightened too by what's happening to you? Some men can be rubbish at expressing their fears and feelings about a situation. Big hug. X

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Thank you Manda for describing what you went through. Stated so calmly, I hope that I will be able to be as strong as you are.

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Natura I just have a get on with it attitude. What will be will be, do or die. Some call it cold hearted, I call it being a realist! Lupus is a royal pain in the harris, that's for sure and when I'm having relentless illness like I did last year, well even the strong crack! It's then you need to dig deep and regain the strength to jump back up, kick everything into touch and fight back. Nobodys going to do it for you, it has to come from within. I do hope you find the strength within you Natura but never be too proud to accept help where offered or ask for help when you need it. Xx

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Sorry you are have a rough time I've had kidney infections and kidney pain for yr but luckily nothing serious unless you count sepcis from uti are they altering your Meds ,I'm sorry I don't understand stage 3 ,as for your husband he is doing the man thing I am guilty of this it is called terminal ostrich sindrome ( berry your head in the sand and hope it goes away) trust me he is scared and dose not know how to deal with it talk to him go to the dr with him and get them to talk to him to help him understand and remove him head from the sand hope you feel better soon

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MandmM provide a very sensible account of their own experiece which should be encouraging to Natura. The advice to follow the instructions of your nephrologist and other members of the renal team is important as there is a lot of detail in keeping in good condition despite kidneys failing to a level that makes dialysis a probability. Until that time has arrived it is critical to follow advice, especially that for controlling lupus activity in the kidney and for keeping blood pressure under very good control. There should be staff available to explain the details of your care and what needs to be done to make the transition from your own kidneys tp a dialysis machine as easy and as afe as possible. There is now 50 years of patients having dialysis and very many of them have had a good life, despite the restrictions, and then, if a transplant is possible and successful, then life can be close to that of individuals of your age who have never been ill. The time until dialysis is very variable and sometimes a condition can stabalise even for years (and usually your nephrologist can calculate the probable period until dialysis will be essential to remain fairly well. In summary "stay calm and sand other seek out reliable information and advice, and take the advice of your renal team other professionals involved. It is NOT a situation where alternative health advice should be trusted.

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Mark as you say it's essential to follow the rules set to keep as well as possible. Take ALL your meds, and there is ALOT after transplant. Don't be a fool like some and think that you've had a working, successful transplant and feel much better so dont need your meds anymore! 😣😮 My renal unit at Brighton has seen people do this and then lose that precious gift that was given to them. Lupus can & might get to your new kidney if you allow it to do so. As Mark also points out DON'T think alternative medicine will do the trick either. It takes powerful chemo meds plus in a lot of cases steroids on top to protect your kidney from attack & rejection. 11 years and 5 months down the line for me and onwards.

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I cant help much with the kidney problems you have Natura but I'll tell my story. I know what its like to try and manage on your own, tends to make things seem so much bigger and harder to handle

I discovered my kidneys weren't at full function 2 years ago when I picked up an e coli infection but they were working well enough not to cause problems. The e coli and consequent urine infection damaged my kidneys and function dropped. I spent 10 days in hospital on saline drips. I'd had a course of antibiotics at home after calling out a gp and the infection cleared up. After call outs and several phone calls telling them I didnt feel right, couldnt eat or drink and generally not improving much he took a blood test one afternoon. In the early hours of the following morning what turned out to be ambulance drivers were banging on my door! We ignored them thinking someone was fooling around, a drunk on his/her way home. Then my son picked up a phone message from an NHS doctor to say I needed to be in hospital asap....he was more shocked than I was...bit of a wait and then a second ambulance arrived. My son is agoraphobic so he wouldnt go with me to hospital. Not a pleasant experience, I really needed someone with me. The ambulance crew weren't particularly sympathetic, they laughed and joked with my son while I staggered across the road to climb in the back. Then sat in a wheelchair while nursing staff decided where I was to go feeling so unwell...

Although my kidneys are still pegging away and function is up its not as it was before the infection. In a review appointment much later as an out patient I was told they couldnt guarantee me another 10 years...and again I was on my own not expecting such news. I'm no spring chicken but thats not what you want to hear. 2 years on and all is well so far. I go for bloods and urine tests every 4 months as they said they wanted to "keep an eye on things".

Diagnosed with mild SLE in 2005 I asked the renal consultant in 2015 if the disease had contributed to kidney damage and he said no, it was all down to e coli. Whether SLE has done any damage pre diagnosis I dont know, its never been mentioned. I have primary sjogrens, osteoarthritis and asthma, walking has been a nightmare at times

Recently I was referred to a health trainer at my gp's surgery and I pretty much poured my heart out, realising I've struggled for far too long on my own and hadn't come to terms with health problems. Talking to her was a huge relief and although its not taken the problems away I dont feel quite so alone any more, she was very positive. If you can find someone to talk to outside nearest and dearest, maybe a nurse?? Professionals might have the answers to whats wrong and what treatment we need but they dont always know how we feel and the emotional impact these problems have on us...sending a hug xxxx

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Thank you Chris for sharing your story. Frightening. I have always been a strong person, but just tired of doing all this by myself. Perhaps, i finally found a doctor who cares. He called me after his office hours to speak with me. I may have to start meds reluctanly. I am very sensitive to medicine, and not really on board with it. But, if I can keep my kidneys and improve function, it might have to be something I need to do. I understand a lot of people dont trust natural, but it is something that feels a part of me. In this case, I will listen to my nephrologist.

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I think I'd be too nervous about going the natural way. The tablets prescribed back in 2005 for SLE thankfully have suited me well and helped with all the symptoms I'd been struggling with. Not gone but not so severe and more manageable. I do hope your doctor gives you the support you need as things are a lot harder when you feel alone with them xxx

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Natura, All this is very frightening. I have SLE but I remember when my consultant told me how it was affecting my kidneys and the shock. But it is great that you have a consultant you can trust. He will do all he can to save your kidney function and if this means medication then so be it and if your blood pressure is high then take the hypertensives prescribed. Kidneys do so much more than we first think. You are actually very lucky in that you have a good consultant (calling after hours, wow) and that you are not on any meds yet for it. Don't panic about dialysis, it may never happen. Avoid UTI's and keep hydrated. Talk to your husband, it is as big a shock for him as for you and he may want to hide from it all but you are facing up to it all and he will too. Best wishes x

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My blood pressure is good ironically. My dad always had low blood pressure. Plus the food I eat helps. I eat very clean, except for my dark chocolate. He is doing a load of blood tests to try and find out why they declined in function over the last 7 months. I cannot understand why either. I have been doing ok for 4 years. I did notice Sjorgren symptoms arising though over the past 4 months. I am going to try and stay calm. I am not going to tell my girls. They dont need anymore stress. My husband, I wish he wouldnt ignore it all. He hasnt responded. Its same old same old. Me cooking, doing dishes, cleaning, laundry and a full time job. In fact, hes in bed sleeping. Sometimes he sleeps more when he doesnt want to face things.

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Sjögren's, similarly to Lupus, although not as often, can affect the kidneys. I do understand and really admire your natural approach. And if you hadn't stuck with it for all this time, let's face it you would almost certainly be very much worse off.

But I think you know that natural medicine isn't always enough by itself and can occasionally be more harmful than helpful.

I'm so glad you've got a good doctor on your side. X

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Thank you tritchytoes. I will post as I learn more.

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Twitchytoes...hate this ipad. Lol.

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Just a thought, could your husband be depressed? Mine was like that for a while until he got on a few meds and now he is so much more attentive. Still has the small backfires but to the most part I get a lot more support.

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Roana...he has bad bouts of depression, chronic fatigue. Hes always dozing off. I know he is having health issues, and he wont go to the dr.

I need him to stay healthy, in case things go bad for me. My mom died in 3 weeks, her liver falied and she died from sepsis. Everyone in my family thinks she died from colitis. I still think she had some form of lupus. She was on iron pills prsecribed by the dr. Sounds like anemia to me. Possibly her kidneys failed too. No one in 1974 probably even knew about inflammatory disease.

I just got yelled at by my sister that I shouldnt have told my other sister about my kidney troubles. Wth. I have no family support! Unbelievable.

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Wow,

Natura, So sad about your mother. I had an Aunt that went through similar things and till this day, they still think she had Lupus and they never understood it back then. I was diagnosed when I was 19 and back then (1985) they told me I'd never use my hands again so little was known even then. I had a full 18 year dental assisting career until my hands got too stiff to feel competent at what I was doing. Back then my family didn't believe it and till this day they still don't understand because I look so normal. WTH is that about your sister. is she sensitive or something, REALLY.... I'm sorry but I don't have a lot of patience for people like that anymore. I don't have time with dealing with everything else going on with me. What do they expect from you. You want to share for support and they do that to you. :( I often wondered why I don't have a lot of friends and it's because sometimes other's just don't understand and it's too hard for me to articulate.

It's so nice to have this support group even if sometimes they haven't experienced what you have, they still throw a good word in to help you along. I too have little support locally, but many years ago when I did try groups I found I was brought down a lot more than lifted. I know it works for some people but I found it very depressing for my own reasons. I push myself hard and think that is what has kept me going. I try not to let this illness define who I am. When I do, that's when I will drop.

You need to communicate with your husband before things get crazy with the new meds and all you will be taking. He may be afraid to let you down. I've been there and if you want to private msg me, please do. I don't get on here often but would love to share more about that and my successes around it.

One day at a time.

Take care.

Ro

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Thank you Ro. I should be hearing from dr by end of week, if its serious. Or at my appt on the 13th.

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You are having a very hard time without much support. I know what it's like believe me. You've got a good ,kind doctor. That's worth all the tea in China.

I'm afraid I can only lend you a shoulder to cry on. Crying is good. The others seem to be very clued up about the kind of problems you are having so will be a great help I'm sure.

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Thanks bones-bones...

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Hi Natura. Just wanted to pass on my good wishes to you and hopes that all will work out well for you. XX

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Hi Natura,

If you need more information about lupus and the kidneys, we have a booklet which you can read or download at lupusuk.org.uk/wp-content/u...

It's understandable if your husband is having a difficult time processing this information. Do you think he may benefit from speaking to someone like a counsellor? Have you considered looking to see if there are any lupus support groups in your area that you could attend together?

P.S. You can change the style of your font to italics or bold by pressing 'Ctrl' and either 'i' or 'b'.

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There arent any support groups in this area. They are further away, and i am not interested in driving far. Thank you for the support and information.

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I do have a coworker though with lupus.

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Thank you Paul for the information. Very helpful to know what my possible course of action my dr may be prescribing. At least I wont be surprised. He did mention possible dialysis.

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Hello Natura

I'm sorry to read your posts about your kidney function deteriorating and hear what you and your family are going through right now.

I'm afraid that I cannot offer any advice on this kidney issue but it does seem that now is the time to take the advice and medication your new, good, doctor recommends, as it sounds like this could really be a life line for you and the alternative of dialysis and/or transplant is avoidable.

None of us wants to take these conconctions of strong meds but let's face it, like you said, in the 1950s, 1960s and even 1970s people were dying from untreated lupus or it's aggressive symptoms that no medication could stop. Thank goodness we are more aware of this illness now and have some life changing/life saving medication options.

I have 3 children aged 9, 12 and 13 but still cannot completely comprehend the fear you must feel for your daughters. Horrible situation. Mums feel enough guilt on a daily basis without adding illnesses into the equation.

But like everyone has said you must keep communicating with all of your family. Time to be totally honest with eachother. All of you. Can you take your husband or your oldest daughter to your appts? They are old enough to take on board what is happening to you. Maybe if they all know how serious this is for you, they will help out a little with the house work. At 15 & 17 they can clean and do the washing etc. With you working full time and your health issues, this is way too much for you and you will break if you carry on. My 3 have helped me over the summer holidays - washing the cars, cutting the grass, emptying the dishwasher, putting the bins out, cleaning windows, washing up, hoovering rooms etc.

Please keep us posted on your test results and appointments. We are all concerned for you and are hear to listen and help however we can.

My very best wishes. Thinking of you.

Wendy x

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Thank you Wendy. Your words are of great comfort. I am very afraid still. I was angry for awhile, and now trying very hard to accept my unfortunate inheritance. I cant make it go away, no matter how much I wish it could all be gone in the morning.

I will be seeing the doctor on the 13th.

In the meantime, we are spending several days celebrating my sweet daughters 16th birthday. We are going out to dinner with her friends one night, dinner another night with her grandparents, a broadway play on Saturday, and brunch with her aunts on sunday. I will try to attach pictures of our celebration.

Thank you everyone for your strength and courage!

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Would you mind me asking what program you went on to heal your gut and liver? Have you told your doctor about it? Enjoy your daughter's birthday celebrations. I remember celebrating turning sweet 16, a long time ago. x

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Well, this is interesting. My last appointment with my kidney dr. Told me I might need dialysis, maybe a transplant someday. Stage 3 kidney disease. Saw him today. Miraculously, negative on lupus, sjorgrens, and normal creatinine levels. Backto stage 1, which is normal for my age. See you in 6 months.

Say what?

I was very worried, upset, looking at a very dismal future. What just happened?

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Were you dehydrated at the blood draw before? That can seriously impact kidney tests.

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Puska...I may have been. Interesting. I still have ups and downs. I think it really depends on what your body is doing when they take the tests. Today my entire abdominal area felt bloated. Couldnt sleep. Got up and put a heating pad on my abdomen, and fell asleep. Still woke up in discomfort. Took a probiotic, fiber....better.

I still have one small kidney and scarring on the other one. Dr says stay hydrated. I drink tons of water. Comes right out.

I will continue to put heating pad on my liver and kidneys everyday to help them function better. I believe it is working. Plus my supplementing.

There is most certainly a link between liver, intestinal function and kidneys removing waste. I believe that is why we have problems. Organs arent working so well.

Drs will call it normal, and aging. But, i am only 54. Feel like I have the body of a 70 year old though.

Take care everyone!

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Doctors always resort to 'old age process' and it's extremely annoying, dismissive and a convenient excuse. Add being Female, menopausal etc and they just pick us off and dismiss everything in one convenient package.

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Yup.

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