Matt and I left the Nephrologist with quite a bit of fear in our hearts. He gave us a list of diseases I could have; minimal change disease due to untreated strep, Lupus Nephritis due to SLE, cancer... None of them walks in the park but at least minimal change disease is a temporary and very treatable thing. God, I really wanted it to be minimal change disease.
Next up came Christmas.
The drive from Indiana to East Tennessee usually takes five hours. This time it took eight. I've never in my life been car sick. I am one of those people that can read while riding in a car. It just never bothered me. Until I got pregnant. Now, Matt gets car sick going through the drive through. His kid was doing this to me. Around about Cookeville I seriously contemplated stopping, getting a hotel room and calling the family and letting them know if they wanted to see us they'd have to come there. I threw up about every 50 miles. I was miserable. But I perservered and made it to Dandridge, TN. Dandridge is located right in between both our parent's places'. We are going to my side on Christmas Eve and Matt's on Christmas Day. Yay, more time in the car.
Thursday, March 11, 2010
Tuesday, March 9, 2010
My Story Vol. 7
Since all the immediate (and not so immediate) family knew about the appointment with the MFM doc the phone started to ring not too long after Matt and I got home.
Matt answered the calls from his side and I took the ones from mine. Not easy phone calls to take, let me tell you. How do you tell your dad his little girl is very sick? Not only very sick but sick and pregnant with his first grandchild and living five hours away. I stuttered a lot. My mom took it as she always does when it comes to me. She acted like I was making much ado about nothing but that is a whole other story there.
They all wanted to know 'what next?' and there was not a lot I could tell them other than my kidneys were spilling protein in huge amounts and the doctors don't think I could survive the pregnancy. Jeez, that sucked to have to say out loud much less think. It sucks to have to type even now.
The next appointment I had was with a Nephrologist. Nephrologists are scary. Their offices are filled with very sick people. I didn't belong there. I felt like a fraud. But I wasn't. The nurses were so nice. The doctor was so nice. He explained things to me and called me 'sweetheart'. I'll call him Dr. Suresh.
I've said it before, but again, I was so scared.
Now Dr. Suresh explained to me what they thought might be going on and why they all were freaking out so bad. See a person can spill a minute amount of protein and be ok. If you work out really hard or, for women, are near your period you can spill a little bit of protein. Something like less than a milligram. Mild kidney disease spills between 1 and 3 grams. Moderate kidney disease spills between 3-5 grams. Severe kidney disease is over 5 grams. I was spilling over 9 grams of protein a day. Not good. Not good especially since I was only 13 weeks pregnant (at the time of the Nephrologist appointment) and protein spilling like that, without prior kidney disease is due to pre-eclampsia. I was way too early to be pre-ecplampsic. I had to have far advanced kidney disease. They needed to find out what was happening with me ASAP.
Matt answered the calls from his side and I took the ones from mine. Not easy phone calls to take, let me tell you. How do you tell your dad his little girl is very sick? Not only very sick but sick and pregnant with his first grandchild and living five hours away. I stuttered a lot. My mom took it as she always does when it comes to me. She acted like I was making much ado about nothing but that is a whole other story there.
They all wanted to know 'what next?' and there was not a lot I could tell them other than my kidneys were spilling protein in huge amounts and the doctors don't think I could survive the pregnancy. Jeez, that sucked to have to say out loud much less think. It sucks to have to type even now.
The next appointment I had was with a Nephrologist. Nephrologists are scary. Their offices are filled with very sick people. I didn't belong there. I felt like a fraud. But I wasn't. The nurses were so nice. The doctor was so nice. He explained things to me and called me 'sweetheart'. I'll call him Dr. Suresh.
I've said it before, but again, I was so scared.
Now Dr. Suresh explained to me what they thought might be going on and why they all were freaking out so bad. See a person can spill a minute amount of protein and be ok. If you work out really hard or, for women, are near your period you can spill a little bit of protein. Something like less than a milligram. Mild kidney disease spills between 1 and 3 grams. Moderate kidney disease spills between 3-5 grams. Severe kidney disease is over 5 grams. I was spilling over 9 grams of protein a day. Not good. Not good especially since I was only 13 weeks pregnant (at the time of the Nephrologist appointment) and protein spilling like that, without prior kidney disease is due to pre-eclampsia. I was way too early to be pre-ecplampsic. I had to have far advanced kidney disease. They needed to find out what was happening with me ASAP.
Friday, March 5, 2010
My Story Vol. 6
Now, I realize my last instalment was all vague and scary, well, that's exactly how the whole experience was.
Here is this woman whom I have never seen before comes in and rips my life apart. Tells me to give up the one thing I've fought for, for so many years, and the one thing I've ever truly wanted - my child. All based on one set of lab tests and a couple cups of pee. She orders lots and lots of new blood work, tells me she wants me to have an amniocentesis at 14 weeks gestation, then gives us all her phone numbers, email addresses and even home address. Holy shit, this is serious.
Oh, and then she tops is all off by telling us we are the last patients she will be seeing in Indiana because she is moving to Arizona the next day. NEXT DAY!!! WTF?!
Matt and I are then led out of "the room" and back to the receptionist's desk. This time she is nice to us. We scheduled our next appointment for two weeks away , I stop off and give twelve vials of blood (not exaggerating) and we leave.
Matt and I get in the car not speaking. each of us too afraid to say anything to the other for fear of what those words could unleash. Neither of us wanted to breach that levee yet. Neither of us could. Too much had been heaped upon us and we needed that drive time to process all we had just been told. I remember listening to myself breath. Listening to my heart beat. Trying to ask that little life deep inside me what I was supposed to do. Lots to ask of a fetus, I know.
Here is this woman whom I have never seen before comes in and rips my life apart. Tells me to give up the one thing I've fought for, for so many years, and the one thing I've ever truly wanted - my child. All based on one set of lab tests and a couple cups of pee. She orders lots and lots of new blood work, tells me she wants me to have an amniocentesis at 14 weeks gestation, then gives us all her phone numbers, email addresses and even home address. Holy shit, this is serious.
Oh, and then she tops is all off by telling us we are the last patients she will be seeing in Indiana because she is moving to Arizona the next day. NEXT DAY!!! WTF?!
Matt and I are then led out of "the room" and back to the receptionist's desk. This time she is nice to us. We scheduled our next appointment for two weeks away , I stop off and give twelve vials of blood (not exaggerating) and we leave.
Matt and I get in the car not speaking. each of us too afraid to say anything to the other for fear of what those words could unleash. Neither of us wanted to breach that levee yet. Neither of us could. Too much had been heaped upon us and we needed that drive time to process all we had just been told. I remember listening to myself breath. Listening to my heart beat. Trying to ask that little life deep inside me what I was supposed to do. Lots to ask of a fetus, I know.
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