no one seems to care

Hi, sorry to go on, i have had 3/4 of my thyroid out, and breast cancer, and a heart attack, and now I have been told I have CKD3 and I have to have it out, and no one told me about any of my illnesses no one explained anything, now I see all these letters and numbers about CKD and I don't understand any of it,.Now when I was 18 I collapsed and woke up in hospital days later, I was told I had pylitis ? then in my 30s I had a pain in my side went for a scan and was told I had a small cyst on my left kidney, if it bothered me I could have it took off that's it ? years have passed with other illness I have mentioned I am now 67 and have moved to another county ,having some pain in my left kidney I went to the hospital here and they told me about me having CKD3 and said I have had it for years and have to have it out, it is swelled up 3 times bigger than the other one,but I don't know anything about it ? Now why didn't the other hospital keep an eye on me with my kidney ??

14 Replies

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  • Are you able to consult a nephrologist, a specialist in kidney disease for an opinion in addition to that of the hospital staff? I rely on my nephrologist for advice on the best treatment for my CKD3. If you read more about kidney disease, you will learn that you can function well with one kidney if you have to have the other removed. I too have had pyelitis in the past, but wasn't told whether or not it could have contributed to my condition.

  • That's the trouble no one tells me anything my consultant said it needs to come out and I can manage with 1 so now im waiting for appointment to go in had nothing since.

  • Hello Jeanie 164,

    I am wondering why your Doctor has not discussed your problems with your

    kidney before now.

  • I don't know either x

  • I had Chronic Pylonphritas and had 1 kidney removed which

    was deceased. After about 6 weeks i started to feel really well,

    something i hadn't done for years. Have a good talk to your

    Doctor ask him to explain what is happening.

    I wish you all the best x

  • Thankyou so much x

  • oh you poor thing! You can do well on one kidney, so please don't worry. I just can't get over the fact that you were kind of forgotten and no one sat and talked to you about it!!

    I really do wish you all the very best xx

  • Jeannie, in normal circumstances being diagnosed with CKD3 isn't a reason on its own for removing a kidney. Many people are diagnosed with CKD3 and providing the disease remains stable they can continue to live quite normally for many years. However, if your left kidney is now causing you pain and tests have revealed it is 3 times the size it should be, then it seems that that is the reason behind the recommendation to have it removed.

    I hope it helps to reassure you when I say that I had my left kidney removed very many years ago and it was a great success even in those days. I'm sure that with the advancement of medical techniques and equipment you have nothing to fear. My very best wishes.

  • Thankyou so much x

  • Dear Friend, I am so sorry to hear that. I sincerely wish you health and I pray for you to be cured as soon as possible. May God bless you.

  • Thankyou so much x

  • My prayers and best wishes for a good outcome, I know have been diagnosed CKD 3B in past few weeks along with Myeloma how difficult it is to find all the info you need to answer your questions.....especially from hospital doctors/ staff who are working flat out in an overburden NHS ( UK ) , what I have found helps is if Zi write my questions and then when med staff have a free minute...to ask my questions but with my wife there as I miss quite a lot of the replies ( and that's me been able to multi, multi task up until 6 weeks ago ) , I've also found Internet an excellent source of info and a couple of books...one called Smoothies For Kidney Health.....gives a lot of info up front of chemical effects re, diet.

    All the best.

  • Thankyou x

  • Hi Jeannie

    I have also had breast cancer and recently had a heart attack leaving me with moderate heart failure. I have known I have kidney disease for years and have very large kidneys due to many cysts on both of them.

    I have never been advised to have either removed as I am maintaining at stage 3b with my latest eGFR being 36. I also suffer right sided loin and back pain which is controlled by taking Pregabalin capsules.

    I find it dismaying that the first thing the doctors have suggested is surgery. I would push for a second opinion from a nephrologist before you let anyone loose on your insides!!

    Best wishes

    Christine x

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