Newly diagnosed CKD with GRF of 56. Aged 25
Posted , 7 users are following.
Hi! Just looking for some advice and information as prior to this forum I've gone to Google and hoped for answers, which as most people know, isn't a wise idea!
I recently had a baby (now 8 weeks old) I was taken in to hospital to be induced as I previously had preeclampsia with my 1st child, 6 years ago. The doctors thought preeclampsia was returning, however, took tests and came to the conclusion it wasn't preeclampsia but that I had a high creatinine of 110. Fortunately, my baby was delivered fine and she is healthy, however, I was refereed to a renal clinic. I see my GP for a 6 week check up last Friday who wanted to refer me for an ultrasound and chase up the renal clinic. The Renal Clinic don't want to see me unless my blood tests come back abnormal and my urine has protein in it. I am yet to have more tests and scans but can't help but worry and panic, it's making me a little ill. Any advice or information to ease my mind would be greatly appreciated or someone who is going through the same thing, to share their story would be great!
0 likes, 13 replies
LynQ carly98495
Posted
Hello Carly,
I'm sorry to hear that your GFR is causing you worry. Presumably the hospital or GP did blood tests earlier in your pregnancy to check that things were OK? It would be useful to get him to loo up any earlier blood tests to see if your GFR was lowish then as well. A GFR of 56% is not a problem as such as your kidneys have lots of spare capacity and lots of people don't have a GFR of 100%. Also many people who have a slightly lower GFR don't progress any further. But it will be good to have other tests and scans to make sure that your kidneys are OK. It is possible that your GFR will get better over time as you have just given birth. Try not to worry too much at this stage and enjoy your beautiful baby!
carly98495 LynQ
Posted
Thank you for the reply LynQ. Yes I am yet to have a scan and more blood tests to see if it has raised anymore. According to doctors, it has been the same for a while and actually raised a little since having blood tests with my 1st daughter 6 years ago. I think they just want to take a look and make sure there is nothing underlying but I still can't help but worry, especially with a newborn! Thank you for your reassuring words though, they do help. Do you have CKD?
KenR carly98495
Posted
I would also say that your 56% eGFR is not a major worry as likely it will cause no symptoms, I was at around 50% for years and never really noticed anything. However it is a good thing to have a full kidney health check to see if anything obvious is wrong. I think scans ought to be part of the check as they can detect physical abnormalities, as well as the blood and urine tests. Probably if nothing obvious is seen then you will be advised to keep weight down, eat a kidney friendly diet, stay hydrated and be very careful of meds as many can damage kidney function,( this includes the contrast medium used for some xray/MRI scans) The tests are no big deal so meantime have a great time with your baby!
KenR
carly98495 KenR
Posted
Thank you for your reply, they think I have had the same level for a few years but just want to know what's caused it as it's quite a low figure for my age. I'm yet to have scans and further tests so we will see, always a worry waiting though isn't it! I'm a natural worrier!!
KenR carly98495
Posted
Hi Carly,
it is inevitable that you worry, especially with young children. You just have to tell yourself that the checkup is for everyone's benefit, and if anything were found then something can be done before it becomes serious.
If your figures have been stable for a while probably they will not find anything and you will just need to adopt a "kidney care' lifestyle, which is good for all general health!
KenR
jenny93409 carly98495
Posted
Hi Carly,
I am a 20 year old who was diagnosed with Stage 3 CKD about 10 months ago. I have a different situation to you in terms of health but, your GFR of 56 isn't something to be too concerned about. You are Stage 3A which is the earliest stage of actually detecting CKD, if anything you will have regular check ups and blood tests, as sometimes during pregnancy, you use your kidney functioning more and That can be pressure on your kidneys themselves in supporting you and your baby, so regular blood tests just to check your kidney functioning and you may be put on some kind of medication to maintain your kidney functioning which has minimal side effects. Please don't worry, you will be fine as its early Stage of CKD and can prevent any further damage
hope me this helps!
carly98495 jenny93409
Posted
Thank you! It does indeed! I think I was initially petrified because I just had a letter from the renal clinic that was just a copy sent to my doctor, stating I had CKD and haven't spoken to anyone since that letter, I go to the doctors tomorrow. I wish doctors would explain more. Thank you for the reassurance though.
Sorry to hear about your CKD, I hope it's under control.
marj01201 carly98495
Posted
Carly,
I agree with what others are saying--try not to worry. You are doing everything you can to support your kidneys.
I would just encourage you to write all your questions down before your doctor 's appointment. I do that. I then cluster them into groups with headings for each group. I bring two copies of the questions with me to the appointment. I give one copy to the doctor and ask him to please take time to answer my questions. If he or she seems heasitamt I just say that I can't take good care of myself without understanding what is happening with my kidneys.
It is critical that our doctors take time to provide some patient education during appointments. The more I understand the better care I can take of myself AND the less I worry.
So, I hope you will go to your next appointment armed with your questions🐶
And, in the meantime, enjoy your little ones🐶
Marj
carly98495 jenny93409
Posted
LynQ carly98495
Posted
Hello Carly,
Yes, I do. It started after I had a kidney stone removed. It took a few operations to remove it and finally they broke it up internally by laser. I am at Stage 4 now (GFR=22%), but disease progression has been slow-I'm 75 now and still hanging in there.
helen54849 carly98495
Posted
Hi,
My GFR was around that for years and some peoples stay like that and don't change. I would advise you find out the reason that it is like it is. I had scans and they don't always show issues up, it was a biopsy that got me my diagnosis. Have the scans and ensure you have repeat blood tests every 6 months even if it only your GP that does them just to keep an eye on things. I creatinine level of 110 is only slightly raised too not high so try not to worry too much about that. Its is easy to say but try not to worry, I know its scary I have been through the whole hog dialysis, transplant the lot so at the moment I really wouldn't worry unless you are told there is something for you to worry about. Enjoy your children
carly98495 helen54849
Posted
Linda_Mac carly98495
Posted
I have had ckd for about 15 years and my primary doctor and the specialist at the time didn't really tell me that I had ckd - they just spoke about my decrease in kidney function, which I knew I was at risk for because of a medication I had taken for many years. So when I got a new primary doctor 3 years ago and she was insistent that because my creatinine level was inching up slowly that I needed to see a specialist again, I responded to her concern. Now I am paying more attention, but I do wish that one of my doctors would have told me that I have this diagnosis. Mine was probably caused by two medications I took long term for other health conditions, and even if I knew at the time that they would cause the damage, I probably would have chosen to continue taking them, as there weren't any other good medication options at the time. I am now 62 years-old and I have no symptoms because I am at Stage 3B and I have sufficient kidney function, so I am just living my life and enjoying the good health I have now. I am taking care of myself by seeing my specialist and avoiding things if I can that might cause kidney damage. Hopefully your levels will increase and if they don't, you can choose to focus on your numbers that are indicating the good kidney function that you do have. Take care of yourself and your children. Congratulations on your new addition to the family!