Worried about my kidneys. : Hello, I am a... - Early CKD Support

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Worried about my kidneys.

Kwesley profile image
14 Replies

Hello,

I am a 35 year old woman who is five months postpartum with my third child. Three months ago I became very ill with many unusual symptoms. Severe fatigue, itching, muscle twitching, dizziness, chronic flank pain, nausea, stomach cramping in the morning, swollen eyelids upon waking and metallic taste in mouth. I have basically had the million dollar work up and the only notable thing that has showed up is a sudden decrease in my eGFR from above 100 down to the 80s. I have probably had my creatinine checked 10 times via ER visits over the past three months and my creatinine seems to be different every time but mainly comes back between .80 and .75 which I know is pretty decent. At one point for about a week it went up to 1.4 suddenly which was very high for me but now has gone back down again to the numbers I stated above. I am so confused because when I look up conditions related to my symptoms I keep getting kidney failure as a result. My doctors keep telling me my creatinine levels are fine and that it is not related to my kidneys whatever is going on. But with the pain I have in that area and the unusual symptoms I just keep fearing that I am having some sort of kidney issue or failure and for some reason it's not registering in my creatinine levels. I had two chest Ct with contrast while pregnant for suspected pulmonary embolism and am concerned that the contrast dye has somehow damaged my kidneys. I am seeing a nephrologist on Monday but I am beyond freaked out. I feel so sick and have the symptoms of kidney failure. I have three little children and cry everyday thinking that they will be left without a mother when I suddenly drop dead because the doctors aren't figuring out the problem. Has anyone here ever heard of kidneys having major issues but blood levels being pretty normal? I should mention my BUN has been slightly low at 6 lately too. I have had two kidney/liver ultrasounds and they were both normal.

Thank you so much for reading my post.

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Kwesley profile image
Kwesley
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14 Replies
Kwesley profile image
Kwesley

I have also had tons of urine cultures and they comeback fine. Occasionally there is a high number of epithelial cells noted. But no proteins or blood.

jaykay777 profile image
jaykay777

I'm not qualified to respond to your question, but it sounds as if the doctors you have seen are competent and will lead you to the answers you need.

Kwesley profile image
Kwesley in reply tojaykay777

Thank you for responding. I hope they can too. And soon!

Nutbrownhare profile image
Nutbrownhare

Your blood levels sound fine and don't worry about your efgr as it is never above 100. Worrying will only make you feel worse and it looks like your doctors have looked at everything. All I can suggest is that you make sure you drink plenty of water and eat healthy, avoiding processed foods such as ready meals, pies and pizzas.

Keeping a log of your symptoms and what you have done or eaten that day will also help you to feel you are taking control and hopefully help you to stop worrying and perhaps see a pattern. Remember to get good quality rest and have time for you. Can someone else look after your other two children when you have a rest to give you good 'you' time?

Whilst I am not a qualified doctor I have kidney disease and have lived with it for many years, I also had a successful pregnancy during those years.

Hope that helps.

Kwesley profile image
Kwesley in reply toNutbrownhare

Thank you so much for your kind response. I am definitely trying to take care of myself which gets harder with three little children and not feeling well. I so appreciate you taking time to read my post of offer such good advice and reassurance.

Sunsetter profile image
Sunsetter

Hi Kwesley, from reading your post, and I'm not a medical person, just someone who has CKD with a egfr of 40 (40% function) was 60% a year ago..., from what you say, your kidney function has dropped but they are still functioning well at 80%.... although it's nicer to know everything is working 100%, there are times when they don't for whatever reason and because people aren't being tested all the time, probably everyone in the world is at some "stage" of kidney disease (they call it a disease if you are anything other than 100% functioning - which is very misleading). Again, although I'm not an expert by any stretch, the symptoms could be almost anything ... but you need answers and I understand that. I assume you are not in the UK, so maybe getting free healthcare is not an option so hopefully you are still able to get healthcare through insurance... but as many people on this site have said, you must be the master of your own destiny with health so you need to keep pushing the health experts for answers... It's good you've had tests and are seeing a nephrologist to talk it through. I mean to me some of things you talk about like swollen eyes could be an allergy... but I'm not in a position to say. So my best advice, because I can hear your anxiety loud and clear, is please please please calm yourself down, do some relaxation, meditation, just listen to some nice music, do something you enjoy .... like giving your kids a big hug, go for a lovely walk, watch a film or read a book you enjoy... like the previous writer suggested, you need some 'me' time. Sometimes symptoms get worse when you worry, I am sure from what you said, that you will be there for your kids and your gran-kids.... thinking positively and looking forward all help to alleviate the stress and thereby the symptoms - it will give your bodies natural and very powerful resources of recuperation to work better. When you worry, it depletes those resources... so concentrate on the future and see it as a wonderful future with your lovely family. You take care and love yourself. All the best X

Kwesley profile image
Kwesley in reply toSunsetter

Very good advice and I definitely need to find a way to address my anxiety over these symptoms as stesss is so terrible for the body. I so appreciate you taking time to read my post and offer input. I am so unbelievably greatful.

Helen62 profile image
Helen62

Hi Kwesley, Sunsetter's advice about relaxation etc is spot on. I am not a medic but a Midwife for a number of years. Kidneys can be adversely affected by pregnancy/postpartum haemorrhage. Have your iron/ferritin levels been checked? Worth doing if not. Are you taking any supplements? They are assumed safe but often cause unwelcome symptoms. Sorry lots of questions, but nothing life threatening so try not to worry. Bit sensitive now.....but various psychological difficulties can occur around childbirth from antenatal/postnatal depression to PTSD and are more common than people assume. If you think this is at all possible then speak to somebody about it.

All the best, everything will be okay! Helen x

Kwesley profile image
Kwesley in reply toHelen62

Hello and thank you so much. I agree that the postpartum period leaves a window of opportunity for many health issues, physiological and emotional. I am already seeing a Couselor to help me through the anxiety portion and am finding that helpful. I just wish I could feel better physically. I am normally such an active person and have never done anything to my body that should warrant this type of rebellion. Hopefully the nehrologost can shed some light on why my kidneys seem to be jumping around a bit in terms of function. It's so confusing. I read stuff stating that increases in creatinine like I had from above 90gfr to 60gfr can mean something very serious. But then they checked it again two days ago and it was back above 90. So weird. I just have so much pain in that area. It's very confusing. I do struggle with anxiety but have never in my life felt this bad physically. I do deal with some autoimmune issues from the time I was a teenager and wonder if something has been triggered post pregnancy. Before I left the hospital after giving birth they noticed I hadn't ever had an MMR vaccine so they give me one. Following that I ran a 103 fever for nearly 10 days and broke out In little blisters allover my body. That was kind of the start of my downhill health decline. Ugh.

Anyways again thank you for taking time to respond to me and for your kindness. It means a lot.

Helen62 profile image
Helen62 in reply toKwesley

You are most welcome :)

I think that modern demands upon mothers are unattainable, we are not superwomen and at some point it all comes crashing down. So prioritize viciously. Delegate jobs that others can do just as well.....get a cleaner.......have your ironing done......reduce your workload......find unwind time and activities for yourself every week. Have fun with your family and most of all if your body tells you that you are tired or overdoing it then rest! I am 55, getting divorced, my kids no longer need me and I wish I had spent more of my life enjoying it rather than slogging away, but it is too late for me.....I'm knackered and sad!!

curleytop1 profile image
curleytop1 in reply toKwesley

Hallo Kwesley, Have been reading the posts between yourself and Helen62 and have to agree that modern mothers have to face too many pressures, not least from those articles featuring 'personalities' who bounce back from pregnancy and childbirth in an instant and are pictured looking as if they live permanently in a beauty salon! They never mention the many support staff and helpers that are often employed to get to this state and I often think these features do immense harm to the wellbeing of the average mother who cannot have this lifestyle!

Maybe you can put some 'coping strategies' into place, as Helen62 says (she is a very wise former Midwife). I hesitate to make suggestions because I do not know your circumstances, but even a little time to catch up on sleep, knowing your children and the baby are being safely looked after and fed by a loving father, relatives or lovely neighbours could work wonders if available. If anyone reliable offers to help in any way, please do not say 'no, I can manage' most people are only too pleased to help if they know they will be appreciated and it can be good fun for the children too. Perhaps I am being naive in mentioning the above ideas, but in my experience, asking for a bit of help can often be a very good thing. Best wishes and hoping your health and energy levels improve soon Curleytop1.

Becks26 profile image
Becks26

Hi Kwesley, I am 12 months pp and started with my symptoms about 5 months ago. I had preeclampsia at the end of my pregnancy (baby was 6 weeks early) have you ever had preeclampsia? My consultant advised that some kidney disease can be linked to it so just thought I would ask? It sounds like your creatinine levels are generally ok and EFGR isn't bad at all so please don't worry too much at this stage. Hope you manage to get some answers from your doctors soon x

Kwesley profile image
Kwesley in reply toBecks26

Hi there. I have fortunately never had preeclampsia during pregnancy. I'm so sorry that you had to go through that and ended up with health issues after. Pregnancy is certainly a very hard thing on some woman's bodies. I have something called POTS and during my last pregnancy it was unbelievably bad. I was out on beta blockers to try and help keep my heart rate down. I was having it at nearly 170bpm just walking around in my last trimester.

I will definitely be asking the nephrologist a lot of questions on Monday.

Hope you are feeling well today.

Thank you for your advice.

X

ScoobyDoo910 profile image
ScoobyDoo910

One thing I know blood tests are not 100 percent but it seems to me with a bun of 6 and your creatine normal your kidneys are doing what they are suppose to. Doesn't explain your other problems you are having. Did they do urine tests 2, probly soo huh. It's hard when your pregnant to because even though it didn't happen with your other pregnancy it's happening with this one and might all go away after baby's born. See what the nephrologist says

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