CT Scans and more questions

It seems that ever since I began having children, I also began having issues with my kidneys. Now if anyone has everhad a kidney stone, they know, that's it gets compared to the pain of childbirth...only you get a slightly different outcome.

Over a month, I was in the ER, having chest pains. I went in, because, they were not going away, and I thought about how many stories i have read about people dying, or having major issues because they decided not listen to their bodies.

So there I was....EKG, Chest Xray, blood work --- they were very thorough. While I was there, in my room, another symptom, very familiar crept up on me. I began using the toilet literally every 2 minutes. I swear. I would only pee out a drop--but the sudden urges felt like the flood gates were about to burst.

My urine dip came out positive for blood and whatever else they check for, to confirm bladder and kidney issues. UGHH It was horrible. I was sent home with a clear chest xray but a raging kidney/bladder infection!

I found a primary care DR, and went in and unloaded all the issues; NF, kidney, bladder, thyroid, exhaustion etc etc. And despite this Drs horrible disposition, she was very intent, on writing everything down, and addressing all my "issues".

I got a call a few days later, telling me of my blood test results and also that the xray I had done @ the hospital showed some calcification and enlargement of my kidney. So I was ordered to go for a CT scan.

FINALLY---I was going to get some answers...and treatment! The pain meds have not been able to touch the pain I am in! I was excited for the scan let me tell you!

The scan was no big deal. IV hooked up for contrast and .... "breathe in.....hold it" *click* over and over. The contrast make you feel weird...leaving a metal type taste in your mouth and alos makes you feel like you are peeing....LOL I walked out - just knowing answers were coming!

The call from the Dr, 2 days later however, did not bring answers. "We need you to go for another CT scan. The last one showed some nodeuls in your chest (lungs)...and we are referring you out to a urologist for your kidneys." Scared and confused....I wrote down the info for the urologist and took off for the 2nd CT scan.

This scan took about 10 minutes. No contrast IV, just laying there while the scanner looked inside my body.

Looking up at the ceiling and around the room, I felt a comforting peace around me. A sort of "hug"...telling me I will be okay. I accepted this and closed my eyes, until the scans were done.

I got dressed and left.

When I got home, I googled "noduels in lungs" and was not surprised when I saw "neurofibromatosis" as one of the possible things this could be. I guess its not rare, but I couldn't find anything else.

So I am left with questions -- My head is spinning and I am really scared!

Not only do I have this kidney thing, I have this lung thing too.

Why does NF have to be so cruel?

Sometimes I find myself wondering what kind of God, would allow this type of thing to happen. Why cancer? Why this? Why that? I don't have answers to those questions either....but I chose to believe, that God has a purpose for me....God sees me as a wonderful, spiritual child. And I chose....to live my life according to His will.

I'll get answers eventually...but until then....I will live. Live this life as best as I can.

My Story

I grew up in your typical home. Parents divorcing by the time I was 7. A family split in half. My dad took 2 of my brothers, while my mom got me and my other brother. It wasn't until my adulthood, that I understood the reasons for this.

Mike and I were rejects. My father couldn't accept Mike and I, well I was a girl, and he didn't know how to deal with me.
Before the split, I remember a lot of hospital visits, for Mike. I also remember the night, I thought Mike was going to die...We were all camping out in the living room, the rain pouring down outside while we made popcorn and stayed up as late as we could watching TV. I do recall falling asleep, that night, and being jolted awake, by my mother screaming. Mike was throwing up blood all over the living room.



When Mike was 5 yrs old he went in for his Kindergarten exam, and it was found, that he had very poor vision. Further tests showed, Mike had an Optic Glioma. Not much was known about NF back then, so it was never mentioned until years later.

Anyways, they treated Mike with radiation and he ended up blind in his right eye. I'm not sure why they treated the tumor this way...and can't grasp why on earth more isn't know about NF.



As far back as I can remember, NF had never affected my life. I grew up normally, had boyfriends, wore bathing suits, and aside from being a bit chubby, was your average girl. I knew about Mike....I also knew my mom had some issues. My mom would always brush off my questions though. I remember one day, I asked about the bumps on her belly, "Don't worry honey, they're my bumbs, and you won't get them".

NF was never on my mind, and never a concern. And still, to this day, even knowing now I officially have NF, aside from some annoying symptoms, I'm ok with it.


Some people have asked me, why I have so many kids, when I have this disease. Well, for one, I wasn't officially diagnosed, until the 38th week in my very last pregnancy, when NF decided it wanted to "come out". But I have no regrets, and would have 50 more kids, if I could.



I have found that 3 of my 6 kids show signs of mild NF. This breaks my heart, but at the same time....my life is fullfilled. My kids are happy and healthy and I vow to show ALL of my kids, that they are no different than anyone else.