So, I had an appointment yesterday with my kidney doctor. I hadn't seen him since August. It's nice that we keep going longer and longer between appointments. That means I'm improving! Woohoo!
I had labs drawn last week, as I always do the week prior to my appointments. Of course, I looked up my results that day. I was pleased to see they were improved from last time. My urine protein level had decreased by HALF since August! 3.3 grams of protein down to 1.5 grams. YAY!
As my doctor sat down to talk with me, I asked him just how sensitive my kidneys were to further damage. I remembered at the beginning of my treatments, he mentioned how my kidneys were scarred and that they would be more prone to damage from here on out. He told me today that no, my kidneys are not scarred like he initially thought! He said they were not any more suseptable than before I was diagnosed. Meaning, I don't have to worry that they will be damaged again. Of course, there is always a chance they could be, but it is not any more likely than if any other body system was attacked by lupus.
Here's where it gets crazy awesome! ;)
He told me that yes, at the beginning of my treatments, he thought for sure my kidneys would be scarred and things would end up worse. I said, "oh?" He then proceeded to tell me that he was surprised that the steroid treatments had worked. He told me that after my biopsy results came in, and he saw how bad the damage was, he really thought that I would have had to undergo dialysis. "Thank you Lord!" I said out loud. "You must have had a lot of people praying for you." He said. My response was, "oh yes, I did!"(and do! Thank you all!)
Our God is so good!
He is a healing God.
My doctor decided I could half my doses of prednisone and cellcept, but stay on everything else. I was hoping to atleast remove SOMETHING from my med list. But that's ok. I'm very happy with that! ;)
I'm looking forward to the weekend! Fun things are planned and I am feeling good enough to participate!
Here's to the weekend and seeing the good in me. Where I am, from where I have come!
Thank you Jesus!
Make it a great weekend and bless someone with the grace you've been given!
Showing posts with label Labs. Show all posts
Showing posts with label Labs. Show all posts
Friday, November 2, 2012
Wednesday, August 29, 2012
Wonderful Wednesday!
Wonderful things this week:
A friend asked me how I was doing one morning. I precede to explain to her how I had only slept 2 hours and haven't even been able to go back to sleep. She then tells me she was awake with me, praying for me to sleep!
The next night, the Lord heard my cry. I only woke up twice!! Sleeping 8 hours! YAY!!
Haircuts. When you have had just one of those days and tell your mom, "you better come over and cut my hair before I chop it off myself!!" Thank you mom!
So thankful that some of the specific "lupus" tests I had this week came back great! The one I was praying was not detected was NOT! People with lupus have a specific antibody that may be detected, which would cause them to need treated daily with heparin, aspirin, or other blood thinners.
In addition, studies suggest that the presence of
these antibodies may also increase the future risk of such problems.
These complications would be:
- deep venous thrombosis (thrombophlebitis)
- stroke
- gangrene
- heart attack
Having a healthy, strong baby girl when her momma is not quite
there yet!
Have a wonderful Wednesday!
Tuesday, August 21, 2012
Please Hurry, I'm Already Patient Enough! Part 3
So I tried to be patient that weekend as I was dealing with more and more symptoms and discomfort. Like I said previously, I was glad to be busy to help keep my mind off things.
Saturday evening was a work party at a local eatery/bar. I remember going, feeling uncomfortable in heels mainly because my feet were a size wider due to the swelling. (ok, Rach really? Why did you think you could pull off wearing heels?!!?) I sat there, chatted with my girlfriends, but was quickly feeling wore out and extremely tired as the evening went on. My lower back began to ache along each side (this is called flank) Hmm, I remember thinking, that pain is right where my kidneys are! I left the party early. Partially because I was feeling so terrible and knew my family was at my sis and brother-in-laws house where I knew I could just lay down are relax. And that’s ALL I wanted to do at that point! I remember being there watching the football game feeling SICK. I stuck it out, trying to enjoy the game, but at the same time feeling like my body just wanted to shut down. We went home, I rocked E and put her to bed and barely had the energy to change my clothes and throw myself into bed. I laid in bed looking at my guy who really didn't know what to do for me or what to say. My body shaking, my back pulsating from the pain, I was crying and wondering what was going on inside me that was making my body feel the worse it had ever felt. (ok, childbirth and recovery was really bad for me but this was a different kind of bad, not knowing the outcome bad. I had a beautiful outcome then, my daughter. My wonderful guy held me and prayed over me for healing and rest. Thank you Jesus for a husband that prays over his wife when he doesn't know what else to do!
Sunday was a day we were really looking forward to, A Night of Worship at church. Unfortunately, it would be a night much like the previous night. This night was a little different though. We were able to experience, as a corporate body of Jesus believers, the awesome presence of the Lord. Freely worshiping our risen savior and the finished work of the cross. What a night it was! Usually at an event like that you would have to hold me down to my seat if you wanted me to sit. But this night, I needed to sit. I HAD to sit. The pain in my back was overwhelming me. I used those times seated, to kneel down to my Father, humbly giving my hurt to Him. I then felt warm hands on my back, my mom’s hands. She knew my hurt and the problems I was facing. Oh the comfort that brought to me. Knowing that she was touching me with her love, but also Christ’s comfort and love which is so much more than hers! THAT is hard to believe people! My mom is the best, it is hard to imagine anyone else loving me more.
After the time of worship and praise my lovely friend Brandi, who is in medical school, and I were talking and I explained to her what was going on. We get each other’s medical humor and love to talk and converse about medical things that others would find offensive and gross! She told me she would be glad to give me one of her kidneys if I needed it! Haha. We laughed and joked. At that moment, little did I know I really might need one! That night at home ended up being much like the night before, as would the next night, on and on.
That next week I went to work and continued hearing the, “umm, you feeling ok Rach?” and “You really don’t look good at all!” Yeah, I really do feel like crap. But instead said, “yeah, I’m feeling ok”. I’ve found it’s much easier and quicker to say your doing fine when your really not. I would go into my patient’s rooms, wash my hands and take a quick look in the mirror and realize, oh wow, their not joking, I don’t look so great! Haha. Throughout the previous week and weekend, I had also been experiencing these awful night sweats. I’ve heard of night sweats and thought I had them during pregnancy. Boy was I wrong! Those weren’t even close to a night sweat! I would wake up multiple times throughout the night drenched in a pool of my own sweat! I would have to get up, change my clothes, sometimes many times during the night. I felt like I was washing my bed linens every day! I remember thinking ok, THIS is a night sweat! Shout out to my menopausal mammas! I know how you feel when those hot flashes come on! YUCK! No fun!
I finally got a call from the nephrologist’s office. Tammy, the physicians assistant, called me (who I would soon feel like was a close friend to because we would talk on the phone multiple times a week). She wanted to fit me in ASAP. Great ASAP being that day I hoped. No. Unfortunately not. The only available time was Wednesday. Ok, more waiting. The doc ordered some more specific labs for me to have done before the appointment. I go, have my labs drawn and of course have to look them up at work! And then the self diagnosing continues. With the help of my nurse buddies of course!
The labs that were ordered kind of blew me away, particularly my urine protein. Oh lovely, 753.1 mg/dL (normal is 0-11.9 mg/dL). My ANA (an indicator of autoimmune diseases) was high as well. As a nurse, there was one lab I had never seen ordered before. My lab book at work didn’t even have it listed. So thank you internet where you can cure your suspicion and find real answers! Ha! So that’s what I did. Got online and looked up this lab: Free Kappa and Lambda Light Chains (which was abnormally high) And the results?
At that point all I could think of was my girl and the rest of my family. If this is really is what I think it is then how long will it be before this takes my life? Will I beat this? I knew I needed to get rid of these thoughts. I quickly thought of the phrase, ‘He’s got the whole world in his hands!’ Yes, He has me in his hands, I do not need to be afraid. Then I had to tell myself, there is no diagnosis yet, you are fine! As I tried telling myself these things, satan kept trying to get in my head. So until there was a definitive diagnosis made I thought the worst and thought I had cancer.
Ok, maybe I shouldn’t have looked at my labs. I should have listened to my momma who kept saying, “Rachel, just don’t look. Let the doctor tell you what’s wrong.” Sorry mom. It’s like the feeling when you’re a kid and you know exactly where the Christmas presents are hiding, not wrapped yet. That is the feeling of a nurse, with her own test results at her fingertips trying not to peek! To that I say, yeah right mom! (I love you mom);)
Saturday evening was a work party at a local eatery/bar. I remember going, feeling uncomfortable in heels mainly because my feet were a size wider due to the swelling. (ok, Rach really? Why did you think you could pull off wearing heels?!!?) I sat there, chatted with my girlfriends, but was quickly feeling wore out and extremely tired as the evening went on. My lower back began to ache along each side (this is called flank) Hmm, I remember thinking, that pain is right where my kidneys are! I left the party early. Partially because I was feeling so terrible and knew my family was at my sis and brother-in-laws house where I knew I could just lay down are relax. And that’s ALL I wanted to do at that point! I remember being there watching the football game feeling SICK. I stuck it out, trying to enjoy the game, but at the same time feeling like my body just wanted to shut down. We went home, I rocked E and put her to bed and barely had the energy to change my clothes and throw myself into bed. I laid in bed looking at my guy who really didn't know what to do for me or what to say. My body shaking, my back pulsating from the pain, I was crying and wondering what was going on inside me that was making my body feel the worse it had ever felt. (ok, childbirth and recovery was really bad for me but this was a different kind of bad, not knowing the outcome bad. I had a beautiful outcome then, my daughter. My wonderful guy held me and prayed over me for healing and rest. Thank you Jesus for a husband that prays over his wife when he doesn't know what else to do!
Sunday was a day we were really looking forward to, A Night of Worship at church. Unfortunately, it would be a night much like the previous night. This night was a little different though. We were able to experience, as a corporate body of Jesus believers, the awesome presence of the Lord. Freely worshiping our risen savior and the finished work of the cross. What a night it was! Usually at an event like that you would have to hold me down to my seat if you wanted me to sit. But this night, I needed to sit. I HAD to sit. The pain in my back was overwhelming me. I used those times seated, to kneel down to my Father, humbly giving my hurt to Him. I then felt warm hands on my back, my mom’s hands. She knew my hurt and the problems I was facing. Oh the comfort that brought to me. Knowing that she was touching me with her love, but also Christ’s comfort and love which is so much more than hers! THAT is hard to believe people! My mom is the best, it is hard to imagine anyone else loving me more.
After the time of worship and praise my lovely friend Brandi, who is in medical school, and I were talking and I explained to her what was going on. We get each other’s medical humor and love to talk and converse about medical things that others would find offensive and gross! She told me she would be glad to give me one of her kidneys if I needed it! Haha. We laughed and joked. At that moment, little did I know I really might need one! That night at home ended up being much like the night before, as would the next night, on and on.
That next week I went to work and continued hearing the, “umm, you feeling ok Rach?” and “You really don’t look good at all!” Yeah, I really do feel like crap. But instead said, “yeah, I’m feeling ok”. I’ve found it’s much easier and quicker to say your doing fine when your really not. I would go into my patient’s rooms, wash my hands and take a quick look in the mirror and realize, oh wow, their not joking, I don’t look so great! Haha. Throughout the previous week and weekend, I had also been experiencing these awful night sweats. I’ve heard of night sweats and thought I had them during pregnancy. Boy was I wrong! Those weren’t even close to a night sweat! I would wake up multiple times throughout the night drenched in a pool of my own sweat! I would have to get up, change my clothes, sometimes many times during the night. I felt like I was washing my bed linens every day! I remember thinking ok, THIS is a night sweat! Shout out to my menopausal mammas! I know how you feel when those hot flashes come on! YUCK! No fun!
I finally got a call from the nephrologist’s office. Tammy, the physicians assistant, called me (who I would soon feel like was a close friend to because we would talk on the phone multiple times a week). She wanted to fit me in ASAP. Great ASAP being that day I hoped. No. Unfortunately not. The only available time was Wednesday. Ok, more waiting. The doc ordered some more specific labs for me to have done before the appointment. I go, have my labs drawn and of course have to look them up at work! And then the self diagnosing continues. With the help of my nurse buddies of course!
The labs that were ordered kind of blew me away, particularly my urine protein. Oh lovely, 753.1 mg/dL (normal is 0-11.9 mg/dL). My ANA (an indicator of autoimmune diseases) was high as well. As a nurse, there was one lab I had never seen ordered before. My lab book at work didn’t even have it listed. So thank you internet where you can cure your suspicion and find real answers! Ha! So that’s what I did. Got online and looked up this lab: Free Kappa and Lambda Light Chains (which was abnormally high) And the results?
“The serum free light chain assays are capable of detecting free light chains at their normal (non-elevated) levels in the blood. Importantly, these assays can detect mildly increased levels of free light chains even when these levels are undetectable by SPEP and IFE. This means that multiple myeloma could be detected earlier than might be possible with either SPEP or IFE and it is particularly useful in instances when only small amounts of light chains are produced by the myeloma.” SOURCE
At that point all I could think of was my girl and the rest of my family. If this is really is what I think it is then how long will it be before this takes my life? Will I beat this? I knew I needed to get rid of these thoughts. I quickly thought of the phrase, ‘He’s got the whole world in his hands!’ Yes, He has me in his hands, I do not need to be afraid. Then I had to tell myself, there is no diagnosis yet, you are fine! As I tried telling myself these things, satan kept trying to get in my head. So until there was a definitive diagnosis made I thought the worst and thought I had cancer.
Ok, maybe I shouldn’t have looked at my labs. I should have listened to my momma who kept saying, “Rachel, just don’t look. Let the doctor tell you what’s wrong.” Sorry mom. It’s like the feeling when you’re a kid and you know exactly where the Christmas presents are hiding, not wrapped yet. That is the feeling of a nurse, with her own test results at her fingertips trying not to peek! To that I say, yeah right mom! (I love you mom);)
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