What can I expect at level 4 I am currently not on any drugs as they don't know what is causing the damage they reckon it's somethink in my own body thats destroying my kidneys
I have had 3 biopsy blood transfusion iron transfusion bone marrow biopsy ct scans
But still no answers my legs hands and ankles swell all I am taking at the min is folic acid I am getting very tired and my legs hurt to walk
I was o stetiods for months but made me feel so I'll ended up in hospital as I couldn't breath with them
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Thirza1
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Hello I am at stage 4 too with about 16% kidney function working. My kidney problem the doctors think is also due to an auto immune system issue where the body attacks the kidneys but they don't know for certain. Everyone is different but this is what I get at stage 4. I get very tired and feel sick mostly in the mornings. The tiredness just comes on suddenly. I have to watch what I eat as if I have red meat, cheese and in some cases fish then the next day I feel terrible. My feet and ankles swell up. I have to drink little and often as I find if I was to drink a pint of anything in one go then it seems to go to my chest and I get short of breath. Aside from that I am doing ok. I am not on any medication.
I am still working full time but since September 2016 I only go into the office once a week and work 4 days from home. I work with computers for a global company so they have been very understanding and supportive. I would not be able to work full time if I had to travel to work everyday as I would just be too tired.
I really don't know what to do i keep on having days off with really bad heads and swallon feet and hands and belly and I am getting in trouble for it I work for a large company but I an walking all night as I work nights I walk on average 12000 steps a night don't know what to do thank you for the reply
remove red meat from your diet dont eat high fat food..avoid like the plague ibruprofen and other nsaid drugs tbey damage kidneys..keep water intake above 1.5 ltr a day..and keep your chin up ..regards chris
Hello Thirza1, I am assuming your job makes you have to walk so much at night! If it is that, I think you should see your Human Resources team or your top manager and explain to them what is happening to you - it is clearly more than you are able to do at present and they may be able to find you another job in the Company which will suit you better (not be so demanding physically). Try to get your doctor to write a letter about your state of health and show it to whoever in your Company decides about medical issues. Usually, big Companies are very good at helping their employees in this situation. Hope you will be able to cope better soon - Curleytop1.
THANK young have seen the specialist today and he has put me back on stetiods not impressed at all it made me so I'll last time kept closing my air ways he has told me its either those or the other tablets what are taken for cancer
And the side effects are worse so looks like i have no choice oh and antidepressants
What else can I expect at this stage 4 I was feeling sick every day and very tired an til i was put bk on steriods at present i am on 8 tabletts a day plus water tabs and folic acid
Hands swell every day so do my feet and ankels
Does the stetiods helped I have been in them 5 times now and it has made no difference at all
If your disease is caused by autoimmune issues, you are likely to have intolerances to food and environmental issues such as mold, dust, perfumes etc. and/ or allergies as toeragthecat suggested. it seems they often go hand in hand. If you do have intolerances and/or allergies, getting them under control can help you feel better and might help slow progression.
I'm speaking from personal experience, plus several people I know with CKD and food intolerances. Usually this specific to forms of Nephropathy that are immune related. Gluten, dairy and soy are usually the main culprits, but I also have issues with lemon, carrots and a whole slew of other healthy foods. When I eat too many of the suspected foods, I get a flair, my body gets inflamed and I feel terrible. My doctor said that is probably what is causing my kidney scarring.
To find out if you have food intolerances, you can try an elimination diet. There is also a controversial test called "ALCAT." Its quite expensive, but tests over 200 foods. It helped me when I couldn't figure it out from an elimination diet. If you were to go that route, make sure to read up on it to see pros and cons as it is not usually covered by insurance.
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