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Take a deep breath! Stressing out won't help and if they are making appointments days away that means the professionals arent worried! ((hugs))
All you can do right now is wait to see the specialist! You are prepared with your questions and seem to know what you want to get out of the appointment, and I honestly think at this point there is nothing else to do! Yes - there are some scary words in there, and while it is good to be mentally prepared for all the possibilities, don't assume the worst either! The solution may be much simpler! You are as prepared as you can be at this point, so take a few deep breaths! You will find out more soon enough. Good luck with the specialist and I hope everything works out for you!
Thanks ladies - I just heard what she was saying and got completely freaked out. Looked up lupus on the internet, and that's so the wrong thing to do! The reason I'm getting this all taken care of now is because we're going to start TTC soon, so I wanted to make sure I was healthy enough to do so.
You're right in that I can only be prepared to ask my questions. I know it's not going to be temporary...it's most likely chronic since I've had this my entire life, and it's not going to be an infection. Hooo...deep breaths!
i hope all goes well, but the days leading up to your appointment will make you feel like pulling your hair out.. totally normal!! wish i could be more help though.. just remember that it could be something super simple to treat!
Wishing you all the best. It sounds crazy, but try not to stress too much. It really could be something much simpler than that. They give you all the information to cover all the bases, but that isn't to say that you should necessarily leap to the worst case scenario. Hugs.
Thanks again for all of the support. Sometimes you just need people to tell you to calm down and wait it out. There was a post on here a few days ago that asked if you ever hated being an adult, and this is one of those times! I want to go back to not knowing that I have any issues! I'm 29, I shouldn't have these issues to worry about!
@2PeasinaPod: Oh hun I'm sorry to hear this {{hugs}}. The best advice I can give you is to pray and let it go. Worrying is not going to solve the situation. I will send up prayers for you. It will all work out for your good. :)
Ok, the first thing to do is to STOP GOOGLING.
I know, from experience, that it's a really really really bad idea.
Secondly, I think you're going about this the right way by thinking about your questions first. That way, you won't be as anxious when you're at the appointment, and you won't forget any of the things you want to know (I work for a specialist, so my only advice here is don't write too much on your piece of question paper or you will come across as a bit nutty...then the receptionists will talk about you when you're gone... dot points are the way of the future!!)
Thirdly, you have to be pretty sick to end up on dialysis. My grandfather has been on dialysis for 10 years, and he was in end stage renal failure with 10% function when they made the decision to go ahead.
Lastly, though "autoimmune disease" sounds like a really scary game changing type of thing, it's not always as bad as it sounds. For example, arthritis and psoriasis are autoimmune diseases, and while they're nasty, they hopefully don't strike terror into your heart. Even if it is something like lupus, there are treatments available and it doesn't necessarily mean that you are going to be condemned to a life of ill health.
Good luck at your appointment, all will be ok!! You are doing absolutely the right thing by asking questions and taking action now. And stop googling! I convinced myself I had colon cancer...not a good idea :)
@IvyBride11: Thanks so much for the encouragement and prayers!
@so_said_ellie: You made me laugh with the note taking. I'll try to keep that in mind on Friday! Thanks for the support as well. Sometimes you just need level headed people who have an objective point of view tell you to shape up and quit being such a spaz! I know Friday is only really a consultation, and they'll most likely send me for more tests, so I'm going to sit tight until I know for sure what's going on.
Thanks again ladies!
Aw... If I were you I would try to take comfort in the fact that this is something thats been going on for DECADES. And you've been going along living just fine up until now right? there is no reason to believe that your quality of life is going to change at this point. And please know that sometimes weird medical stuff is just weird medical stuff. Obviously it is great that you're taking the steps to get it checked out and meeting with the right doctors, but just because there is something abnormal does not necessarily mean they will find anything at all wrong with you so don't assume it does! I am anemic and after a bajillion tests they decided-- I just am because I am-- there is nothing wrong with me! I also have low blood pressure. Nothing wrong with me there either. The testing process is always scary but I am sure that every person on earth has at least one or two things that are "off" with them and they don't always mean that something is really wrong.
Aww, I pray everything works out for you. If, God forbid, they suspect Lupus is the cause, feel free to PM me. My family has extensive experience with it and I'd be happy to help with any questions. I'll be sending positive thoughts your way!
@2PeasinaPod: How did you go? Was your appt with the specialist this Friday just gone?
Thinking good thoughts for you!
Hi ladies! Here is an update for you!
So, the nephrologist thinks it's just benign hematuria (blood in your urine). He looked at all of my test results and said that they tested for lupus and I'm definitely a negative there (yay)! He mentioned that my kidney walls were a little on the thin side, but not abnormal for someone my size. He went through my entire family history (I told him my dad was being monitored for something similar, but he was going to a urologist), and he didn't seem concerned at all. He's going to see me again in 6 months to be sure there aren't increase levels of protien in my urine (which is a bad thing), and we'll keep monitoring yearly after that.
So...good news, and I freaked out for nothing :o) Thank you to the bees for being supportive and talking me down!
Yay! I am glad to hear it all went well...and that we were able to help you calm down a bit!
Oh my goodness I am so sorry you went through all that stress!! I would say you had a perfectly good reason to freak out! Nurses know their stuff, and if a nure told me that I would freak too!! I am SO happy you turned out ok.
I'm glad it worked out well! I went to a nephrologist for hematuria also and they were freaking me out telling me that I could possibly have a disease that would have stopped my kidney function by the time I was 20. Turned out I had kidney stones and a partially blocked kidney which was fixable by surgery.
Glad it was nothing.
Three years ago I was admitted to the hospital bc I was PEEING blood. Not a little blood, but my urine was straight RED. Then they ran blood tests, and my blood work was all wrong. RBC were irregular shaped, high WBC, etc. Everything turned out fine, but that was after ultrasounds, various doctors, they even thought I had cancer... it was while I was pregant. I was discharged with it being unknown... but a doctor told me (my son) might have kicked me in my bladder which caused it to bleed (a lot!) and bc of that my blood was irregular. I'm glad we both got lucky!
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So, I've had some kidney issues basically all of my life. When I was young, they found small traces of blood in my urine, and I always just had it monitored. I stopped once I went to college, mainly b/c it was inconvenient. I decided that it was time to get it taken care of again, and so went for the full workup. Sure enough, I still had the traces of blood in my urine...so off to a nephrologist I go.
My appointment isn't until Friday, but a nurse contacted me to explain a few things and what may be causing issues with my kidneys. Basically, she said the following:
Based upon your high levels of antimyeloperoxidase and microalbumin, it appears to be a sign that you have antibodies which are attacking the ability for your kidneys to filter out the waste products. There can be many causes of this – automimmune diseases such as lupus, infections (viral or bacterial), or inflammation of the blood vessels. Some questions I would ask the specialist are:
So, there are some really scary words in there like Lupus and dialysis. I know I won't know anything until I meet with the specialist, but I need someone to calm me down, b/c I'm freaking out right now!