Hi ! I am new ! EGFR 30, high proteinura, HBP, underachieve thyroid... not so lucky !

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Hello everyone ! Just wanted to talk to some people who know what I am going through... I am31, I have been diagnosed recently (year ago) with CKD stage 3, borderline4. I have one kidney and although my doctors and hospital knew about it for years, no one has done anything to help me or at least to inform me I have one kidney and second kidney is poorly. I also suffer from HB, my highest being 230/130(I know!). Two years ago I also ve been diagnosed with underactive thyroid. I work full time 30 h and trying to think positive but some times I think what is going to happen.... what future will bring g how long I ll live and if I need a transplant or dialysis (my doctor says probably yes but it's very hard to determine). So I just really wanted to meet people similar to me, who know how daunting this can be. X

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  • Posted

    Just seen my title....underactivethyroid not underachieve.... stupid t9!
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  • Posted

    Justyns,

    My kidneys were stable at just about the level yours are at now for several years. I'd definitely agree that you need to do what you can to pull your blood pressure down--low sodium diet, exercise, and try to lower any stress you may be experiencing. I know, that last issue is a tough one when stressing about your lowered renal function.

    Have you seen a nephrologist? If not, I'd strongly suggest that you set an appointment. A nephrologist will focus on helping you regain renal function (if that's possible) or stabilize your function. The nephrologist may want to do a biopsy to learn more about what is going on with your kidney.

    I arrive for my appointments with my questions written down (in my smartphone). We work through my questions after my doctor has shared what he has to say and before the appointment ends. I can't take care of myself unless I understand what is going on and what I need to do to slow the progression of my chronic kidney disease. So, I'd encourage you to do the same. I strongly believe that ALL doctors should spend a portion of each appointment providing patient education. We can help them accomplish that goal by arriving with data about our physical functioning, e.g., blood pressure readings throughout the weeks since our last appointments, our daily weight, and, if relavent, our glucose readings. I've also provided detail regarding fluid intake and potassium , phosphorous, and sodium intake daily.

    But don't restrict your diet unless your nephrologist tells you to do so other than adhering to a low sodium diet, 1500-1800 mg a day. (You can do this by cooking your own food rather than eating processed foods.) but unless told to do so by your doctor you should NOT restrict your diet in any way.

    Marj

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  • Posted

    Hi,

    Sorry to hear this.  The best way of protecting your kidney is to get your BP under control.  Sometimes it takes two or three different medications to achieve this.  I take Losartan which is kidney protective, bendroflumiazide and moxonidine which work really well for me.  It is be different for everyone so don't be afraid to ask to change until you get a set that suits you.  Good luck!

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  • Posted

    Hi all,

    Thank you for your kind words and advice ! I have been seeing two nephrologist consultants since may 2016 but I don't find them very good. I feel like they have no need in getting me better my questions are answered shortly. I am due to see a private nephrologist in London , his name is Dr Pattison(arranged by my lawyers as I am suing 6 doctors and hospital and NHS Trust for neglect); so I am hoping for more caring doctor and who actually cares. I can't have kidney biopsy as apparently is too dangerous. I asmm on amlodopine, los art an, avortastatin and levothyroxine. Also currently taking antibiotics on pernament basis due to my UTI (had 3 within 7mo ths). At the moment my kidney has been stale for a year but I am so worried it may crash any time sad

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  • Posted

    Hi,

    Having been in your position I know how scary this is for you, I was diagnosed at 13 so I was watched very carefully luckily.  I wasn't diagnosed with the cause until I was 32 though. I stayed at stage 3 right up until I was 32 then started the decline in April 2014 I was told I would need dialysis in about 18 months to 2 years but the reality was 7 months.  My decline in the end was so rapid it even took my excellent team by surprise!!. I knew I would need the treatment at some point all my life but it was still a shock when they told me it would be soon.  I don't cry often and certainly don't do it in front of people for this reason as it seem to terrify them and I don't want to do that hence my sobbing at traffic lights with people wondering what on earth was up with me lol. Once I got my head round it I was ok with that and everything that followed after.  I was on dialysis for just under 2 years and my friend gave me one of her kidneys (how lucky am I) that was 12 months ago and the hardest thing for me was trying to get people to understand that I was magically fixed it is s treatment not a cure, but I gave up and decided it was their issue not mine. It hasn't been an easy 12 months but I feel great and so that counter acts all the crap.  Its not so bad I worked full time with 6% GFR and ran a business and a home and looked after my hubby and kids (he was made up when I had my tx as he got to tell me what to do for 3 months smile ).  What you need to do now is get your bp under control by whatever means, there are loads of bp meds out that a lot that make you feel like drunk mr soft but keep trying different ones until you find a combination that works as you made need more than one type, I got there in the end, the lovely Mrs O on here is still trying to find the right ones but you need to do this.  You may stay at the stage you are for years to come but the drs really can be exact as you can see from my story.  Your thyroid may be to pot due to the CKD, our kidneys control more than we would realise.  My parathyroid went for a burton but this was controlled with calcium and vit d, I had iron infusions and EPO (iron tablets didn't work) that will help with any tiredness or breathlessness you may get.  So to sum up yes its scary and yes it may put the fear of god in you at times but you get through it. I have the most amazing family and friends oh and a brilliant renal team and I know a lot of people don't have this but I have to say they are the best and it is more than just a job.  If you ever get worried or want to shout or rant come on here there are loads of amazing people who will be happy to help.  I would say be wary of people claiming they were cured by potions and herbs no offence but if this were the case everyone would be cured we wouldn't have minimum 4 year waiting lists for transplants would we? I wouldn't have put my friend at risk if I could of had a nice cup of potion.  take care x

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    • Posted

      Thank you Helen for those encouraging words. As yourself,I have great support in my family and friends, and potential two or three donors if there is possibility of transplant. Can you also tell me if you have had any issues with memory and concentration? I start forgetting what I did or where I put something very often and I hate myself for this but this is something I guess I can't control...

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    • Posted

      Justina,  

      I know Helen will reply to you--she always provides such encouraging support🐶  But, I thought I'd respond to this question too.

      I definitely have trouble with my memory some as my renal function declines as well as when my anemia is causing me more trouble. (My hemoglobin is about 5.6 without treatment. That creates a lot of symptoms for me including "foggy" thinking.)

      One reason I write stuff down to take to my doctor's appointments is due to how frequently I can forget some of what I want to ask during these appointments. Thank goodness for smart phones!! It's easy for me to have my medication list, my current symptoms, and so forth at the ready when and where I need them.

      Of course, I've had to laugh at myself numerous times as this forgetfulness has created to some rather humorous situations.

      Marj

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    • Posted

      Hi,

      Yessss it was really bad to the point I couldn't remember the name of every day items, it was awful it became like a game to make myself known. I would have to describe what it was for etc. I would ask what something was called and had to ask at least 3 times after, and in work how my poor boss didn't slap me I will never no lol he would ask me to do something and again I would have to ask loads as I would forget. It was still like it on dialysis I had to set up a meds app on my phone to remember to take all my meds. As soon as I had my tx it went back to normal I can remember again.  There is nothing you can do about it, I just put everything I needed to do in my phone so it would go off and I would no to do the things. I would also start saying something and completely forget what I was on about so frustrating just laugh about it is my advice or it will drive you made.  In fact that was my thing for the whole situation have a good laugh at myself it really helped x 

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  • Posted

    Wow...thank you guys ! I didn't realise I'm not the only one... my partner always tells me off I always lose my keys (basically I don't remember where I put them!) Or recently I started losing my school id (I work for secondary school) like twice a week which never happen beforw... it's so frustrating ! And I wanted to mention this issue to nephrologist but...i forgot ! I may message her on patientview... I guys are amazing and these messages mean so much to me x

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