I am tired and so very scared
Posted , 6 users are following.
I am a 37 year old man with a beautiful wife and my wonderful boy age 6. I have had protein in the urine for a year off and on this time last year I had none (June). When we first found the protein it was determined to be prostatitis. So treated that however, still getting blood to check my kidneys and showing everything was okay and the kidneys were functioning properly. At 6 months ago I had trace protein in urine and rechecked kidney functions; they were okay. Fast forward to today and what brought me back to my Dr and this forum. for the last couple of weeks I developed a thirst that could not be quenched. Went to the Dr today and was +1 Protein and will be going to the Nephrologist in the upcoming days. I do have back pain where the kidneys are. Not constant but there. I do not have diabetes - I do have reactive hypoglycemia and B6 toxicity (just found that out). Didn't think I could be more down - until this week.
I am terrified. My Dr is rather convinced we're looking at kidney disease. Not sure why if it's just the kidneys (root cause) or autoimmune etc.. I feel my life is over. I slept very little over the last few days. Worrying of what might be. in my mind I've already jumped to kidney failure final stages. At this point I pray that it's manageable and that I'll be here for my little guy. I'm so sad. So sad.
0 likes, 15 replies
pa34735 nicholas24806
Posted
Hello Nicholas,
Dont give up hope. My husband we found out that he also have protien and trace of blood in his urine this past June from buying life insurance. We thought maybe it just a one time deal thing but it was consistent with the second and third time. So we decided to make appt with the dr. Indeed he still show proteins and trace of blood. We were referred to a nephrologist too. We did blood work, the 24 hr urine test. Blood work came out normal and test for other diseasee like lupus came back normal as well. So the nephrologist thinks its the kidney itself, maybe a kidney dieases. They wanted us tk do a biopsy but my husband we opt out. Bc his egr number came back ok at 84 but he wasnt drinking much water that 24 hr test maybe the egfr number could be higher. We dk. But husband dont have diabetes or high blood pressure. So the nephologist dk what to do next since we opt on the biopsy. So now we have cut down on his protein intake, meat intakr, he's keeping himself hydrate and exercise at least 30 mins day. And he has lost tons of weight and he feels better than ever. We had a small fam. We have a 10, 6, 1 year old and one on the way this June. For the last yr Ive drived myself crazy trying to understand why this happened to us since my husband is still very young age 35. But take one day at a time. Kidney function over time will decrease. Just remember to keep yourself active and eat healthy. My husband and I are monitoring his condition every 6 months to see if theres any big change. If theres every a big drop on his egfr number we will consider the biospy again. Egfr 60 is still considered good. Take one day a time. I have pass the stages of crying and worrying myself to sleep bc I realized by doing all that Im not helping my husband or my fam. I gotta be strong. Stay strong its early stage, with the right dr ans the right plan you will live for a very long time.
nicholas24806 pa34735
Posted
Thank you so much for your reply. It was very encouraging to read that. I just got the blood results back for kidneys and the Dr said that it's normal as it they have always tested before. I'm hopeful from that news, still there are more test to go but as you said it's early!
nicholas24806
Posted
pa34735 nicholas24806
Posted
rick39522 nicholas24806
Posted
Hi. Look, all the feelings you are having, and thinking the worst, is natural, and every person on here has had those feelings. And no words we can write, or experiences we can share, will make you feel one ounce better. BUT, you right now are facing the unknown and have no firm reason for your "illness". I assume your doctor ran a lot of blood and urine tests. Do you know the results specifically? The numbers you want to look at are your albumin, creatinine and GFR. These will indicate to you the "condition" of your kidneys. Yes it may be as your doctor says a form of kidney disease. But you will first find what is the cause. Is it actual kidney failure or is it damage caused by another condition, which can be more controlled. Many things can cause damage. High blood pressure over time, medications you take, trauma to the kidney, Toxins, Infections. Perhaps there is a growth on one kidney causing it to not function and the other is perfectly normal. The possibilities are endless. It is senseless for us to tell you to calm yourself and take it one step at a time, because your mind will not let you. You are on the correct path. See the kidney doctor as soon as possible. Keep us informed, especially of your blood and urine results and what the kidney doctor tells you. With your diagnosis, you will likely find many on here who had the same diagnosis and can help and share experiences. IF it is CKD, you will be given a stage of the disease and understand it a lot better. Definitely keep in touch. Rick
holley95735 nicholas24806
Posted
mari11869 nicholas24806
Posted
Hi Nicholas,
CKD typically has no symptoms, that's why many people do not know they are in 4-5 level kidney disease. On one hand, it is good you know your kidney situation and how to slow any further damage. On the other hand, millions of people live their lives with CKD by watching their diet, exercise. low salt, low protein. I have Polycystic Kidney Disease and Nephrogenic Diabetes Insipidus. GFR, 4.1 and Creatinine 1.3, The worry that comes with this makes it worse. It is hard to say "don't worry." My nephrologist said I can live a very normal life for many years, he actually said 30 years and I am 60 yrs. old. The danger for me is no access to water. My tubes are weak so my kidneys don't hold water in the body like they should. It's very easy for me to become dehydrated, more so than most.
Look online in places like https://www.medscape.com/today. There are excellent sources for information. Many millions of our population are not aware of their kidney disease. Primary care doctors are now sharing this information more and more. I quit worrying and concentrate on a healthy lifestyle. Medical issues can happen at any time to anyone! I'm grateful we have clean water, private bathrooms, and all the comforts many countries do not have. I pray the ACA stays intact so we are guaranteed health insurance regardless of pre existing conditions.
Megan3031 mari11869
Posted
I read your post and i saw you wrote that some people could be in stage 4 and 5 of chronic kidney disease and not know it. that is really scary. Do some people who are in stage 4 and 5 not feel sick or tired or anything? That's what i'm worried about too. I am worried that i might be in stage 4 or 5 already and just not know it yet because I don't feel sick or tired. I am going to the doctor soon but i am like very scared about going now.
Megan3031 nicholas24806
Posted
I hope you are alright. I know how scary it can be. I am worried that I might have kidney disease too. I am going to the doctor soon and getting a blood test and a urine test. I am like terrified about going. And oh my goodness that is very scary that some people are in stage 4 and 5 and don't even know it. I am like so worried that i am in stage 4 or 5 too. I could be and not know it yet. I think i will probably have a big melt down when i go to the doctor since I am so scared. well i hope that your doctors appointments go well.
rick39522 Megan3031
Posted
Megan,
?First of all you are doing the right thing by going to the doctor. This first visit is nothing to be scared of. They will take your blood and urine. You likely will not know anything on this first visit. It takes a while to test the blood. They will not have you wait. If they do a dip stick of urine those results are immediate, but if they do a "full" urine test this too will take time. So this visit do NOT be afraid. It is routine. My doctors post the results of our tests on the internet within 2 days so that I do not have to wait for an appointment to know the results, hopefully yours will do the same. But you are assuming the worst. It is understandable to worry and be nervous, but you are way to extreme thinking it is CKD and even moreso assuming it is stage 4 or 5. That would be like having a little pain some place in your body and assuming it is cancer. And not just cancer, but stage4 and being on deaths doorstep. I am not saying to not worry, because you are obviously an extreme worrisome person. But cut it down my friend. Any disease, even a common cold, is taken one step at a time. Recognize symptoms, do tests, verify tests, diagnose the disease, treat it with all that medical science has at its disposal. I know from personal experience that waiting is worse than disease. I waited for four months for my tumor to be removed. Will it be huge, will it be stage 4, what is that pain I feel, is it real, what if, what if, what if. While the news was not wonderful (the kidney was removed, the tumor was stage 1, grade 1 which means slow growing, encapsulated) here I am typing to you, being treated by the best physicians I can find, and living life. Could my cancer come back? Could my other kidney fail? Is every pain and ache that comes with age a symptom I am on my way out? The answer is possibly to each question. But the answer could equally be no to each question. And it is just as possible I could be in an accident, or fall, or experience heart failure, or some disease. So to sit and worry and think of these things constantly is the way to live and experience life? Of course not. I take care of myself the best I can, I work with my doctors, but to sit and worry does far more harm than good...so just get to the doctor as soon as possible, why it takes so long for you to get there is silly. GO. Get some peace of mind.
Megan3031 rick39522
Posted
Oh yes i will ask them if they have a way for me to look at the results online. But i don't think I will understand what the results of the blood tests and urine tests say. So i might need to go back a week later and ask them to explain the results to me .And I'm sorry to hear that you had a tumor on your kidney. I hope that you are doing better now. I will try my best not to worry unless the doctor says something is wrong though. And I didn't go to the doctor yet because I'm trying to find a primary care doctor to go to since I don't have one. I will make an appointment as soon as I find one though.
rick39522 Megan3031
Posted
Most blood and urine test results are really fairly easy to understand. It shows what your measurement was for each thing tested for. For example it will say Glucose (sugar) and give your reading. Then next to it will be what is called the "average" or "normal" range (in other words what your number should be). This way you can tell if you are below or high on each item tested for. Maybe there will be a term you do not understand, perhaps something like "BUN". You just then go to google, type in the word and you will easily understand what it is, what it means if it is high and what it means if it is low. And don't forget we are all here too to help. I do not know how it works in your location to find a primary care physician. Here it is relatively easy. Each hospital in our area (we have 3) has what is called an association of their doctors. These are doctors who have their own practice but that are associated with the hospital. In other words they send their patients to that hospital, they have their own representatives in the hospital, they are "on call" for that hospital if you are ever in the emergency room. Just call the hospital, or look at their website, and it will show a listing of these doctors and where they are located. Most of the time it will also indicate if they are accepting new patients. Even without this availability is should not take such a long time as it has for you to find a doctor. Sit down with a list of doctors in your area (gleaned from the yellow pages either in paper of from the internet) and start calling and just ask "do you accept new patients". You may or may not like who you get but at least you will get an immediate test and then can determine if you have any condition that you fear. It does not take a good or bad doctor to perform a blood test and post the results. from there you can decide to stay with them or if you even need a doctor. The priority at this time should be get tested.
Megan3031 rick39522
Posted
Where are you from? I live in the Usa. Here we can just find a primary care physician by going to our health insurance company website and finding a list of doctors that will accept our health insurance. So like my health insurance company that i get health insurance from is called Blue Cross Blue Shield. So i just need to go on their website and find a list of doctors that would take my health insurance. They also have a list of hospitals that I can use my health insurance at. I guess i should just pick any doctor that I find on the website. And yes true. If i don't like them then i can pick someone else later if I need to. I guess another reason why it's taking me so long to go to the doctor is because I am really scared that my blood test and urine test will come back bad. But yes i know it's important for me to go. Because if I do have kidney disease then maybe I could at least slow down the progression of it. I know i just need to try and be brave and come up with the courage to go to the doctor.
rick39522 Megan3031
Posted
Megan3031 rick39522
Posted
Aw i'm sorry to hear that about your kidney. I hope you are feeling better now. And yes you are right. I know i need to go even though I'm scared. Because if I do have kidney disease or another health problem then at least I will be able to do something about it and make changes to get healthier so that I can live longer. And I actually did call a doctor today, but they told me that they wouldn't have any appointments for 1 month. I told them about my blood pressure being high. But they said that if they have any cancellations anytime soon then they will call me and let me know. I just said ok thank you. But i won't wait for them to call me back. I will just find someone else to go to that can see me sooner. I didn't have time to find anyone else today though because I work 8 hours a day. But i will look online tonight for someone else and call them tomorrow to see if they can get me in this week or next week. If not then maybe I could call a walk in clinic and see if they take my insurance. We have those sort of places around here and they are alot cheaper than going to a hospital. And they can see patients as soon as possible. So i could go there and if there is a problem then i could just find a primary care doctor later on.