Please help is it CKD for sure or not??
Posted , 7 users are following.
Hi all,
Im 30 years old female.
So,my story is long but to make it short, I had 2 autoimmune diseases since childhood which resuls in severe chronic dehydration in my body. I was embracing it and adapting to it all these years, until a month ago where I was given a shocking news that I have risk of developping Kidney Failure!!
So I've done blood tests which shows: anemia, high cholesterol,thalesemia,
hyperhomocysteinemia,and severe deficiencies in the following vitamins: D, B6,B12,iron,potassium.
My GFR 61 and creatinine 105 umol/l
Now my albumin is negative in blood and urine.
Im in healthy weight plus I usually have healthy diet.
I don't have diabetes or high blood pressure.
I experienced recently mild swollen shoulders and arm and had middle back pain and sometimes kidney cramps in the morning due to dehydration.
I havent seen renal specialiast yet but my 1rst appointment is next week.
I read somewhere that gfr above 60 is normal unless having blood abnormalities but dont understand what does that mean?! Like is high levels of homocysteine and other test results mentioned above are considered blood abnormalities??!
Im really panicking in here! I feel asif my life went upside down all of a sudden and still cannot wake up from this shock! I wish to wake up one day to realise it was all a bad dream and not true!
My life was going sooo good full of achievements and success but my happiness was wipped away by this bad news!
Im struggling to know what to eat even at the beginning I stopped eating i felt like eating would kill me and i started starving myself thinking im conserving my kidneys for longer! Still havent seen dietitian yet and no clue of what to do with my diet .. I found Davita website online but I feel recipes are not enough and daily portions for each meal is very confusing i cant find enough resources on how much i eat protein daily or do i have to reduce salt ? Im totally torturing myself in here i stopped enjoying everything i eat food just to stay alive but I dont enjoy it ..
Please if anyone can reassure me based on my results and tell me if these results indicate CKD for sure or not!
0 likes, 54 replies
abee30
Posted
fran32391 abee30
Posted
abee30 fran32391
Posted
Hi Fran,
Not really... I'm not actually! I was having rare autoimmune diseases since childhood which affecting the quality of my life however I decided I will live normal and accept it. Now Kidney failure is another freaky story that stood up against my life achievements, my career my ambitions... that is why I'm in denial right now ! However, I started realizing it soon and trying my best to defend the obstacles.
fran32391 abee30
Posted
The reason I asked if you were a health anxiety patient was because I don't understand anxiety so I have learned I probably wouldn't be of much help. The other reason is because I was thinking that if you aren't an anxiety patient you probably have Connective Tissue Disease. Am I correct? I have had CTD all my life, so far I have Arthritis, Lupus, Raynaud's , Myositis, and Sjogrens. At the beginning the symptoms are all over the place not belonging to one disease but a mixture of a little of each . Every so many years I get another one added to the list.That may be something you might want to ask your Dr to look into. It's a possibility and that could explain why your symptoms are all over the place. I have CKD as well so I often have Drs working overtime trying to solve the puzzle, me. Be patient and know that you will get answers, you just haven't gotten them YET. It's just another bump in the road hun. At this time, like Marge said, it could do more harm than good to change your diet. Write down ALL symptoms, when they start/ end. When you feel unwell take your temp, keep record of it. In other words this might sound crazy but keep like a diary every day of symptoms, temps , swelling, changes in breathing, any changes in your health. That could really help you see a pattern so you can tell your Dr. Like if you have low grade fevers without having a cold or flu, how often, etc. I hope I'm making sense to you, I hope what I am saying is clear. Sorry. If this sounds even a little familiar you will know what I'm talking about. Stay strong, you have come this far, you can keep it up. It's not a death sentence, just life. Get in to your Drs and get some labs. Sorry this is such a long comment. Feel free to ask any questions, I'm 63 so that's how long I've been dealing with this. Life is too awesome not to enjoy, you just need to get some plans in place, right. Don't let it rule your life, get up and dust off your but so you can keep going. I am so sorry to know how much you are struggling. It's in you and I know you can do it. Hugs.
abee30 fran32391
Posted
Hi fran,
Sorry for the late reply I was having an appointment with my GP and got some good news, my potassium level is improved and my gfr was increased to 65 after it was 61 last month and 58 two weeks ago but I was fasting for this latter blood test.
My albumin is negative again in urine 😀
I'm sorry that you are having all these conditions🙁. I feel for you because I was having sjogren syndrome and hypohidrosis since I was baby. I'm not yet fully diagnosed yet . My GP suggested sjogren when i was 26 years old but immunologist said never heard about my case before! And my team specialist couldn't tell what kind of disease I'm having when i was young.. i've been admitted to hospital every week from childhood to teen age around 13 years old then because specialists failed to tell us what is wrong with me my parents decided they will no longer take me to hospital and do further tests and they preferred me living normally. Now of course this wasn't good idea since my immunity system was attacking my organs all these years and it affected my health obviously.
Never heard about autouimmune disease in my life until i was 26 so yep maybe was too late lol.
I did some research on sjogren and found that im having same symptoms no more no less and compared my symptoms with all other common autoimmune diseases like lupus, arthritis,Raynauld's ect... but no they're different so according to myself i guess it is for sure Sjogren as for hypohidrosis specialists since childhood until now keep telling me we have never heard about your symptoms ever but i did myself few seconds click on browser to find out what the disease name based on symptoms was very easy to find and still can't get it why specialists are pretending or ignoring this condition seems they do not want to bother assisting me with it or give me advice about it . It is rare and not curable yes but they could tell me at least the disease name.. imagine ive been suffering 30 years from a disease that specialists and doctors didn't mention to me even its name!
Anyway we need to deal with it and be positive all the time
Sorry for long reply
KenR abee30
Posted
I am not a medic but a CKD sufferer. Your numbers do not look too worrying, it would be rare to have any symptoms with Egfr over 60, and a reasonably normal creatinine. However you do seem to be doing the right things by seeing relevant experts, who may account for the oddities and deficiencies. I would have thought that a normal balanced diet would be fine, drink plenty of water, and exercise sensibly without overdoing it. It is easy to become overconcerned by medical jargon, but ask sensible questions about the bits you do not understand.
Oh and enjoy life, that will probably do more to make you feel good than anything else!
KenR
abee30 KenR
Posted
Hi Ken,
Thanks for your reply and I hope you and all CKD sufferer recover from it?
Now actually as for symptoms, I believe my body was sending me signs. Sudden headache which I never had before at all, severe mid back pain on the right side only that shoots to the right kidney and it lasted 2 months.
Dizziness and mild fainting which never had ever before in my life, my vision blacked out for seconds many times too.
I knew about my vitamin deficiencies but I felt these signs are something else and that my body is acting strange and there is something not quite right. So I went to my GP and asked for comprehensive blood tests and when I came back for results she was not happy at all and told me this is not a joke i am at risk of having kidney failure and she established a team of specialist for me. My renal ultrasound came back good no signs of damage i got relieved then my gp freaked me out again after receiving blood test results from endocrinologist who told her that im having issues with some glands and yes im having kidney disease!!!! It is quite confusing especially thay i was going through IVF and nurses there called me and told me your blood test shows you have kidney issues too ...so it is now like confirmed for doctors to say i have CKD 😕 but I'm still sighting for hope of not having it.
marj01201 abee30
Posted
abee, this additional information is helpful. It's definitely a good thing that you will see a nephrologist very soon. I suspicion the nephrologist may be able to determine what is going on with your labs.
Many primary care physicians don't know much about kidney disease and so those who are diligent don't fool around a lot with unusual renal data. Instead, they refer the person directly to a nephrologist. That's actually good! I wish all primary care physicians did this.
You'll have a clearer picture of what is going on soon.
Marj
rick39522 abee30
Posted
Why are you going to a kidney doctor? Was this a decision on your own or did your primary care physician suggest it? The gfr number you gave is normal, although right on the minimal "normal" range. Perhaps this is why you are sent to a kidney specialist. Now you are already adjusting your diet to one recommended for a person with CKD? Without even being classified CKD? And maybe some of the recommendations of this diet do NOT take into account your Vitamin, Iron deficiencies and you are actually making things worse. Just wait until next week and then see what the specialist says or tells you. You are likely in panic mode without cause. And IF there is something they want to see about your kidney, you certainly have found it at a very early stage.
?It is hard to wait. I appreciate that. But you are not going to do severe damage in one weeks time, by just living your normal life and diet. You doctor said you were at risk of failure???? I'm no doctor. But you sure seem a long way from that worry, if it is a worry at all.
abee30 rick39522
Posted
Hi Rick,
Thanks for your reply and support.
I agree I'm lucky to have known about it at early stage but angry too because I found blood test results from 2014 and 2015 that indicate declining in gfr and increase of creatinine but at that stage it was like 78 and 75 for gfr so it was quite early and I could have maintained it this way for longer but doctors didnt mention kidney at all they just told me about potassium deficiency!
Now at this stage I have asked my GP for full blood tests because my body was acting out of its charachter and I was experiencing things that never had before in my life and I knew there was something wrong: like headaches, back pain, extreme thirst,extreme fatigue and dizziness what the most telling sign.
This is how I knew about it.
My ultrasound was good no sign of damage but all other specialist endocrinologist and IVF called me urgently to inform me that blood tests show im having kidney damage!!!
Im still confused actually and waiting to go and see specialists next week
marj01201 abee30
Posted
anew,
I'm not a medical professional but your renal data actually looks pretty good. However, as you say, you are seeing a nephrologist in about a week, so you'll definitely know for sure how your kidneys are doing after that appointment.
In the meantime, if I was in your situation, I wouldn't change anything with my diet. Frankly, what some of us with chronic kidney disease have to do with our diets is needed to support our decreased renal function. But these extremely restricted renal diets are not healthy for a person without CKD. (e.g., I have to limit my potassium intake to 2000 mg or slightly less daily, my phosphorous intake to 600 mg daily, and I also have to take both a potassium binder and a phosphorus binder; I also eat a lower protein diet.) They could actually create malnutrition for persons without CKD.
Right now, I'd be focusing on preparing for the appointment with the nephrooogist. I'd write down my questions. And, in case I don't have CKD, I'd be sure to ask what I should do to protect my renal function since I'm at a higher risk for developing CKD.
Let us know how your appointment goes. And nothing but good thoughts until you have reason to think otherwise🐶
Matj
abee30 marj01201
Posted
Thank you marj
I aporeciate your support ?
You're right starting a diet without having confirmation of having CKD can be harmful for my body and kidney. I knoe if someone has high potassium should limit it anf i following diet for ckd at the moment which may not be good for me. But I was afraid it gets worse quickly that's why maybe I should relax and live normal as u said until I get a diagnosis from renal specialist!
Thank you very much
marj01201 abee30
Posted
The good news is that your data still looks quite good. From the additional information you've shared it is clear that there is some deterioration in your renal function. BUT you still have plenty of renal function at this point. However, it's important to get a read on what is going on.
My nephrologist manages my electrolyte imbalances and my severe anemia. He also actually manages my blood pressure. So the nephrologist you see will be able to help with your potassium level if it is renal related.
Marj
abee30 marj01201
Posted
Thank you marj,
yes hopefully my nephrologist can find out soon wether it is CKD or just malnutrition that may be affecting my kidneys...
I'm keeping my hopes up for the moment and will try to be positive
Thanks for the support I'm more relieved now to know that my data is still somehow good ?
Guest abee30
Posted
You have just stated you are deficient in Vit D B6 B12 Iron and potasium!!
You have Thalassemia and connective tissue disease.
You need to correct your severe anaemia and Vit D and B problems before anything else!!
Your kidney function is likely to get better once you have treated your other deficiencies.
Good luck
abee30 Guest
Posted
Hi Jane,
Thanks for ur reply.. yes sure I am now on vitamins supplements and my potassium is already improving and also my vitamin D. As for gfr today i came to know it has increased from 61 to 65 within a month so I'm.quite happy and staying positive ?
Guest abee30
Posted