Just diagnosed ckd 3 with 20 week old baby. Having panic. Need a lift out of this preoccupied state of mind. Can anyone help please?

Im 43, and just been diagnosed with ckd 3a 20 weeks after having my second daughter. Im in shock and freefall, and my mind s running away with me. Dr said he was surprised another gp had flagged me up to see the doc so quickly as he thought my numbers hadnt changed much, im 56 and not sure what previous numbers were. He thought I was already au fait with ckd and where I was in it. I knew nothing about declining function, apart from initial consultations when one of my kidneys was found in a routine scan to be damagedabout 18 years back, when I was told i did not have ckd .Since then no one has called me back and discussed ckd or irreversible decline with me after any blood tests or scans, so ive happily taken that as good news. There seems to be a missing consultation somewhere along the way that would have explained things to me and counselled me, given advice on diet and lifestyle whilst I was in an earlier stage, but none given, so I left the surgery yesterday very alone lost and confused. Of course ive been googling like mad, against my better instincts, but I feel like ive got no control over this thing and need to know what I can do to give my babies their mum for as long as possible. Im living in a different world, with a different future from 2 days ago, probably due to the speed and shock of finding out and I just wish I could stop feeling this sickening dread, especially when I look at my beautiful girls. I need to know what I can do to make a difference, and for that, surely I need a specialist, as the doctor didn't suggest I do anything different, just 6 month blood test. Who can I request, under nhs rules? And should I be pushy if they dont want to refer me? Thanks for any replies. I'm just so worried and downhearted, and want to get to a point where I can enjoy my family and laugh again without this wave of sickening dread pulling the ground from under me all the time. My blood pressure, managedwith beta blockers has been lovely 117/70 until this last 2 days, when it reached 154/100 in docs surgery, and isnt getting down again , my shoulders are sore from hunching them up and i cant even have a drink to relax me. Anything anyone can say to give me a lift will be appreciated

7 Replies

  • Hi Alibick, I felt so moved when I read your letter,I am at stage 4 have had one kidney removed and only 25% left on the other one but the specialist is still quite happy with the way I'm going,of cause I'm still worrying but at 71 I just feel lucky I've got this far, I didn't know I had anything wrong with my kidneys until just over a year ago (a long story I won't bore you with) so it was all a terrific shock, the person I couldn't cope without apart from my hubby, is my specialist who I see every 3/4 months.So you have a long way to go yet. It is a cruel thing for you to have just had a baby and to cope with this news, it's no wonder your blood pressure has gone up, it's easy to say but try not to worry too much,and enjoy the joy of your little one . I would suggest you ask your Dr. ( or insist if he/she is reluctant) to have a referral to a kidney Dr. at hospital, and he she refer you on to a specialist, I hope all will be o.k. for you and not be as bad as you are thinking. I am sure you will get a lot of replies with good advice on here, there seem to be some very knowledgeable people who come on here, I know reading some of them have helped me understand a bit more, but do go back to your Dr. Good Luck and let us all know how you get on . Jill. a B.

  • try not to worry as this will make your blood pressure worse my hubby was in stage 3 for about 15 years or so you can stay for years at this level eat a healthy diet & enjoy watching your children grow up he used to see the consultant only once a year & never found them much help at that stage they just used to want to keep his blood pressure down below 120/80 as high blood pressure is one of the many causes of CKD you don't normally need to watch your diet unless electrolytes are out which your GP would test for! if your symptoms get worse then go back otherwise try to relax & get on with your life thats what my hubby did after his initial shock!

    i also forgot to say my mum who is 81 now was in stage 3 now back to stage 2 after having a kidney stone removed she was in stage 3 about 6 years ago so you can also improve depends what was causing it!

  • It would be a shock to you I know, but if it is any help I have have renal problems since the age of seven (born with bifid kidney and chronic cystitis due to a stricture.) At 45 I was told I was facing kidney failure. I'm now 82 in May and the deterioration has come so gradually over the years and I hope yours will be the same. (Mine is now still only 53, and I'm Level 3 CKD.) I have seen specialists and always been given treatment when necessary, and I do think you should at least be referred on. The majority of GPs it seems either haven't the time or inclination to research renal problems, their management and effects, and I would say find out as much as you can. Try not to be scared (easy to say, I know!) At present the shock is still kicking in, but as your BP has been so good previously it will surely settle down again. Good luck and all the very best to you.

  • Please do not worry. Two years ago I dropped to stage. 4. My doctor sent me to see a Nephologist who told me that I could end up on dyalasis if my function kept dropping so quickly. When he asked what medication I was taking and I said diclofenac he told me to stopit straight away. I did and over the last 2 years I have gone up to stage 3.so do not take or use anything that has an antiinflamatory in. Read the labels or ask the pharmasist. I have blood tests every 6 months and aslong as my gfr stays above 40 I do not havd tk see my neph. The best thing is to eat heathily and watch your medication. Do not worry as most people st stage 3 do not go on to stage 5. Enjoy your children and enjoy life x

  • The best rule is to live your life and enjoy your family , eat sensibly and fresh foods rather than processed foods , reduce the salt in your diet to help maintain a good BP . The worst thing you can do is let something you can't change take over your life and the more you obsess about it the worse it makes you feel . Keep fit as that helps with BP too. Good luck and enjoy life I know many people who have been stage 3 for decades with little change .

  • Hi Ali,

    this is not a death sentence, you are not going to die. Just keep that in mind. CKD can be serious and can lead to dialysis or transplant, but you have already heard from people here who are in their 70s and 80s and still going strong! I was diagnosed with polycystic kidney disease just a year ago. I'm 60 and have obviously had this since birth, but never knew. I went into free fall for about 6 weeks. Now I just get on with life and most days don't think about PKD at all. Like you I had a GP who seemed to think as I was only stage 2 (my GFR is pretty much normal) I didn't need to see a specialist. Even when he conceded to make a referral the wait on the NHS was about 4 months, so I went private. A consultation with a nephrologist (also called renal consultant or kidney doctor) costs about £200. For me it was the best £200 I have ever spent because the consultation lasted over an hour and I had the opportunity to ask every question I could think of. The relief was immense because prior to the consultation I just didn't know what I was dealing with. Your GP still has to write a letter of referral to the nephrologist but if you go private you are likely to be seen within a week or two. I found my nephrologist through googling and calling the local Spire and Nuffield Hospitals. You will get through this!! Take care and keep asking questions. x

  • Thank you to all of you who have responded so positively to my post. I do feel a little less panicked than last week and am seeing my regular doctor tomorrow to talk through the situation. Your posts have brought me a great deal of calm and I will keep you updated. Thank you x

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