I was born with Polycystic kidney disease which resulted in my right kidney being removed at birth. It is extremely rare to have only one kidney affected by the cysts, but I like to be different. There were never any followups done on my healthy kidney other than pediatrician appointments.
My maternal grandfather died of kidney failure, my maternal grandmother is in kidney failure and my mom now has "stuff" going on with her kidneys. I figured since genetics are definitely not on my side, I should make an appointment with a Nephrologist. I really don't like picking Nephrologists out of an insurance book, but I rolled the dice and got Dr U.
My appointment was this morning. As soon as I said I had a Polycystic kidney at birth, he went a little nuts. He pulled up a bunch of websites on the computer in the room. He said most kids die by the age of 10. Awesome. I'm 32, so I must be fine. Then he started reciting all the different types of kidney disease and failure. Then continued to tell me that if I do have PKD affecting my left kidney, that there is little that can be done and my children will need to be checked as well. Seriously?!
After agreeing that we should start with some labs, urine analysis and an ultrasound of my kidney, he kinda went crazy one me. He said that a major side effect of PKD is brain aneurysms, so he would probably be ordering an MRI. He wanted to know if I get headaches.. nope. But I appreciate that he fully scared the crap out of me. Then he went on to tell me that he needed to check my liver and then listened to my heart. He said he heard a murmur. That's crazy! NO one has ever heard a murmur and they have listened for it many times.
As I sit there listening to him completely shocked, I hear him say.. get these tests done fast. He wants to see me back in two weeks. Then we will know. I'm sure I'm fine. There are no symptoms. He wants me to get an echo done stat to check on my "murmur", which I am sure I do not have.
The question of the day... is this doctor just totally paranoid because he has never heard of someone having ONE Polycystic Kidney? Or should I be freaking out?
I am getting all the tests done this week and will see him on the 6th. If everything is fine...I'm good! If not.. I am 99.5% sure I'll be getting a second opinion before we start checking for brain aneurysms, cardiac complications and liver biopsies.
Well.. perhaps I will just go ahead and call a cardiologist and schedule an echo now. I was going to do that anyway. It can't hurt.
What a morning. I need a nap.
Wednesday, September 21, 2011
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10 comments:
Yep, get another opinion and you'll already have your lab results that you can take to the new doc. If the new doc says the same thing then look more into things. We had that happen a few months ago with Kaidence. I have learned that some people hear a diagnosis and they totally freak out! Remember the chest x-ray that had Kaidence is severe heart failure? Go and take a nap now!
Wow.
I'm praying that doc is overly paranoid and that everything is just fine. Lots of prayers!
Hope you got a nap! :)
Holy cow! That was seriously a crazy appointment! I am praying that this guy is just overly eager to do tests and that everything is perfectly fine.
Well I come from the experience that has doctors not running tests when they should have and it nearly cost my children's lives more than once. So get the test. It can't hurt and then you will have peace of mind. If he starts wanting to do brain surgery however, get the 2nd opinion.
Second opinion! Sounds like he is going by old textbook and not by the patient in front of him. Has he heard that stress is a bad thing? He should not present things that way,sounds like he needs a bedside manner course.
My nephew has one kidney that was removed at birth, (not sure if it was Polycyctic), but it sounds familiar It ran in his Dad's family. He is doing fine at about age 55.
Well, whatever the outcome, there is a Prayer headed your way Andrea.
Well...I think your Nephrologist may be a little incorrect...my sister has polycystic kidney disease in one kidney (that is now gone), as does my brother (who is in kidney failure), and probably many other people that are not related to me. I would go ahead with the labs and possibly the ultrasound, but I agree...no MRI. Hope has polycystic kidney disease in both of her kidneys (yeah...I know the statistics and mix that with HLHS...nope, I don't try to think about it at all) and she only has labs and ultrasounds done twice a year. She has never had an MRI and has been on bypass twice...which I think probably carries a bigger risk for brain aneurysms and I have never heard that before.
While I think he may be a little paranoid, I also know that our kidney function decreases as we age...even if you don't have any kidney problems at all. It definitely can't hurt to have the minor lab work done.
Pretty sure that Murmur was pure fear. ;)
Good gracious girl!
Bless your heart...and kidney.
and yes, Id def go with a second opinion. Ive found that helpful with my heart issues just to have someone else on board to bounce ideas off of or confirm validity of concern.
Keep us updated!
I think it was quite unprofessional on him to scare you so without his having any tests. To just mention things like brain aneurysms. IMO, he should've just said he wanted to run some tests to make sure everything else was fine, and left it at that for now. Very unprofessional.
Holy smokes, I have been out of blogger land for too long!! OMG!! I had no idea you had this!!! & yes you are so LUCKY!!! My dad & brother & Aunt all have PKD, I was the lucky 1 & steared clear, after having a kidney ultrasound at 21!!! I seriously can't believe it!! Maybe we were meant to be friends?? LOL!! Way too much in common!!! I will have to start keeping up with you guys more!!! xoxo
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