Bedrest, Bedpans, And Blessings! Part 6

After the biopsy is complete, my doc then has the radiology tech take a look over the kidney punctured, to confirm there was no damage. As they look, there are comments like, 'hmm', 'oh', 'yah, right there', 'I see it'. Ok, people, SEE WHAT!?! WHAT IS IT! Oh my gosh my kidney is bleeding to death! Lol. Those were the thoughts going through my mind. Then my doc says that I seem to have formed a hematoma at the puncture site of the kidney.

Hematoma: A localized swelling that is filled with blood caused by a break in the wall of a blood vessel. The blood is usually clotted or partially clotted, and it exists within an organ or in a soft tissue space, such as muscle. Treatment depends on the location and size of the hematoma but usually involves draining the accumulated blood. Source

They call the radiologist in to take a look. He is needed to see exactly how big the hematoma is. Both he and my doc decide they want to keep me there in that room, on the small stretcher I was laying on for another hour. They would then do another ultrasound to make sure it had not grown. The nurse sends my guy in to see me. I'm still a bit loopy and in a bit of pain at the puncture site. Doc explains how the procedure went, that a hematoma had formed and that they need to re-scan me in an hour. During that long hour of waiting I am beginning to feel very out of it. My back begins to really hurt, my head is hurting and I start feeling sick to my stomach. This may be due to the fact that I have been NPO (nothing by mouth) since the night before also. I just wanted to curl up in a ball and go to sleep! Doc then calls the hospitalist doctor of the day. (the hospitalists are our house doctors who admit and make rounds on all of the patients throughout the hospital. The doctor of the day is the doctor who admits on that particular day) I am then assigned a room where I will be staying for the next 24 hours.

An hour is up! I flip to my stomach again, everyone making sure I do it oh so carefully! The radiologist decides he wants to scan me himself to make sure he gets the view he wants. The hematoma got bigger. Not a good thing. My doc and the radiologist then discuss what they are going to do. A small, friendly argument begins over me. My doc doesn't want me to move a muscle. Even into my bed in the room I am assigned to. He is trying to tell the radiologist that they need to bring the equipment up to my room and scan me up there, on the same uncomfortable stretcher I am on. The radiologist explains that they have a busy day and that I need to come back down there to have it done. They finally agree and my doc says I can go down in 4 hours but I have to go down in the bed in my room. No moving back and forth. Yay! I can get off this stretcher at least!

I am taken, by stretcher to my room on the 3rd floor. My doc goes up with me so he can explain some things to me. He is very on edge about me transferring to the bed. He doesn't want me making a move afraid it will aggravate the already growing hematoma. I get onto the bed as smooth as possible. Phew! My parents arrive and my guy is already with me. Doc explains how he is going to order lab work every 4 hours to monitor by H&H. (hemoglobin and hematocrit). A drop in these will indicate how much blood I am losing as it is being pulled into the hematoma from my blood stream. My vital signs (BP, heart rate, temp, SpO2=oxygen saturation, respiration's) will also need to be taken every 4 as well. I would also not be able to lift greater than >20lbs for 2 weeks. Good thing I have a little peanut of a daughter!! Work would be a bit of a challenge though. I would have to rely on my fellow colleagues for help. He then proceeds to tell me something I really didn't want to hear. "I want you on complete bedrest for 12 hours." WHAT?! (I knew what complete bed rest meant, but I thought maybe I could make an exception) ;) "You mean, I can't even get up to pee?!? I have to use the bedpan?!?" I said surprised. "Yes." He says ever so calmly! Ugh. I remember praying I would only need to pee that night! Lol. Come on 11:30pm!

It was lunch time so I ordered some lunch (yay, I could finally eat!) My guy then went home to get my girl down for nap time, and my parents left as well. It was a pretty lonely afternoon spending my time in the hospital on the other end of things. Nurses came in to check my VS, check my bandage, do their assessment, ask me questions, etc. Things that I was used to doing there. Not lay in bed for 12 hours! Later in the afternoon I was taken down for another ultrasound and as soon as I returned to my room the phlebotomist was there to draw my blood. After being so busy and enjoying my excitement for the afternoon,the hospitalist who admitted me came in to assess and go over my lab and ultrasound results. I was glad it was this particular hospitalist seeing me. Sometimes you just prefer some over others! I know this because I work with them and was hoping I would have one that I liked! He explained that the hamatoma had not gotten any larger (praise the Lord!) and that my H&H had dropped slightly. The drop in my labs were pretty much expected, but it wasn't too bad. We would then just recheck H&H that evening and then in the morning. No more ultrasounds.

I spent that afternoon and most of the evening in God's word and listening to music. I had my iPhone so I was able to listen to some of my favorite tunes. Letting the music, full with words of peace, love, and God's goodness fill my mind and soul! It was a day full of my mind wanting to wander. But I was trying to rely on God to not let it! My biopsy would have to be sent to a children's hospital where it could be read by a very experienced pathologist. My doc said it would be multiple days before we would hear anything. All the "what if's" wanted to creep in. Cancer, kidney failure, dialysis, transplant, on and on. I am so grateful for a praying family, church and friends. I was able to keep my mind on the truth. Going back to scripture and spending time in the bed soaking up HIS love. 

I had some visitors that evening. My family all came back in, as well as my sister, brother-in-law, and nephew. They had gone out to eat at the local steakhouse and brought me my favorite salad! Mmm! My in-love's also came in to see me that night. What a blessing it was to have everyone there, helping me keep my mind off things! 

Soon everyone had left. The staff kept coming in to check on me. I decided I wanted to go to bed, even though it was pretty early. I was tired and hurting. I was glad to have only needed to use the bedpan twice! Yay! I tried to hold out as long as possible, and I did manage to put myself on and off it by the way. Evey time I voided (ok, peed :) my urine had to be saved to make sure the color was ok (not too much blood). I was still taking lasix so I was peeing quite a bit. I probably had like 10 little cups in the bathroom in a variety of colors by the time I left. Haha. My urine was pretty dark/rusty due to some blood and my kidneys not filtering properly. 

That night of sleeping wasn't the greatest. I was awaken multiple times for VS and lab draws. I was still having the most terrible night sweats so I had to get up and change a couple of times. Oh, and of course pee. My H&H had gone up that morning so I was free to go by lunch time. My doc explained that no news was good news as far as the biopsy goes. He was actually going to be out of town that next week on vacation (great) so he explained my situation to another nephrologist so that if I needed immediate treatment before he got back it would be handled. More waiting. 

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

Source

Having a healthy, strong baby girl when her momma is not quite

there yet!

Have a wonderful Wednesday!

My B-Day! Oh Darn! Not Birthday, Biopsy Day! Part 5

Friday morning came. Biopsy day! I got up early that morning. We had to be there at 8:00am, so I wanted to be sure I had plenty of time to get my girl up, fed, and to her aunties house. I knew this morning would be the last time I would be nursing my girl. She was a year and a month now. I had been weaning her for about 3 weeks and was just waiting for the right time to pull away (no pun intended) Haha. I was planning on breastfeeding for a year. That was my goal. I had heard about people who said it was hard giving nursing up. I didn't think that would be me. But yes, it was. It was a bittersweet morning. I knew I was going to be on medications and away from her for 24 hours. I thought this was probably going to be the best opportunity. This made my morning all that more emotional though. 

We headed to the hospital, my guy and I. We were meet by my parents as we waited in the women's imaging waiting area. I told my parents not to feel like they had to come, but they did, and I'm glad! I checked in. Then sat and waited with my family. My dad was making jokes (of course) to keep my nerves down. It helped! :) I was a little nervous of the unknown. How bad is it going to hurt? Will I have any complications? Will I be able to hold still long enough? Gee, I hope he hits my kidney and not my lung or something! Haha. Oh how the mind wanders. That is, until...medications and prayer of course!

The door to the "back" opens. One of my nurse colleagues calls me in. Knowing me, she says, "I was wondering if this was you," as she pointed to her clipboard.  "Yup, it's me," I said. She takes me into a small room has me put on a gown and lay down on the bed. She then was joined by one of my other nurse colleagues who says the same thing as the other nurse did. Wondering if I was the Rachel there for the biopsy. They then proceeded to ask me questions about why the heck I was there and what was going on. Then started asking me questions they were supposed to be, putting my patient identification band on, putting in an IV and drawing some labs. I had to have some labs done prior to the test showing pre-biopsy kidney levels, blood levels, and to rule out pregnancy. This would NOT be a good time to be told your pregnant! They then sent me back out to the waiting area to wait till my lab results were up. More joking and talking with my family! I get called back again. This time going into another room where more questions are asked. The nurse confirms that I am NOT pregnant. She say's, "now I can give you the goods!" Valium PO (oral) and Demerol I.M. (intramuscular, shot) was a wonderful combination to keep me VERY relaxed! I asked the nurse about how long before these would both take effect. "Oh, about 45min," was her response. I was sent out, again, to wait. This time I was the joke! HA! It took only about 15 minuets before I needed to slouch down in my chair and lean my head against the head rest! Oh my! No more wandering thoughts! Lol. I felt like I was on a cloud.

The nurse comes out a third time and says we are going back for the real deal. My guy came back with me this time and sat outside the procedure room. Mom and dad stay in the waiting room and send me back with hugs. I'm led by the nurse down a hallway that seemed so long with a floor moving back and forth. Oh drugs! I told her, "umm I'm going to need your help walking!" She laughed, and I said, "I'm not kidding!" She guides me back to the dark procedure room. Has me sit on the bed till my doc comes in. The radiology tech is there along with nurses. My doc arrives. Greets me, and asks how I am doing. I think my response was something like, "really good! Thanks for the meds by the way!" He explains the "plan". Has me lay on my stomach. He gowns and gloves up and then creates his sterile field on my left lower back. The nice thing is that what is happening in one kidney happens in the other, as far as damage goes. So he only needs to take tissue from one side. So we decided the left was going to be the side to do!

Source

He gives me a couple shots of lidocane to numb the area a bit. The radiology tech then guides the ultrasound wand over my kidney to get a clear shot so doc knows where he is going. He then tells me he is going to make two passes to my kidney. Making sure he can get two good pieces of tissue. At this point I remember praying, asking God to guide his hands. He has me take a deep breath in,  hold that breath, and hold my body very still until he says 'ok'. As I take that big breath in, I feel pressure to my back. A sharp pinch and then one of the weirdest feelings I have ever felt! (those other weird feelings were those of my child birthing experience. NEVER to be forgotten!) :) This felt like something going inside of me, very deep into my organs. I think I described it to my guy as like a transformer experience! (don't ask me why!) A large needle stuck through my back, deep into my kidney. I could actually feel the little grabbers ripping a piece of tissue out of my kidney. The tool he was using was like a spring loaded gun with a large needle that would retract quickly with the push of a button. He then tells me to relax and breath again. To where I said, "oh my, that felt weird!" We then go through the process one more time. He then places a small bandage on my back. He and the nurse go over to the counter where they are putting my tiny pieces of kidney into a little sterile cup. I watch them intently thinking, 'you better not drop that!' Heck, I probably said it out loud! Haha. (the meds were still very effective at that point) :) Once I knew they hadn't dropped anything and it was securely in the container with the lid tightly on, I asked if I could see it. The nurse and doc both turned around and looked at me with confused faces as if thinking, 'really'? "Really," I said, "I want to see it!" After all, it is MY piece of kidney you have there! The nurse brings it over so I can see. I reply with a thank you! Two very small pieces of tissue. No blood. They just looked like a little chunk of flesh. Nothing exciting,  but it was intriguing to me!

Source

To the K-Doc I Go! Part 4

I go to my appointment to see the nephrologist. I felt pretty comfortable seeing him. I have had to make calls to him in the past regarding some of my patients. I felt like I kind of knew him a little already. My guy insisted on coming with me because his office is actually right next door to the doctors office. I go into the office and let them know I am there. I sit in the waiting room with a bunch of people well over 60. Thinking about how I would have never expected to be in this room, for myself. Ever. Many thoughts going through my mind. Tammy(PA) calls me back, weighs me, and then to the bathroom I go. To pee in a cup. Let me just say, the nephrologist office has it right! No narrow plastic cups like the OB office! Seriously, how often do guys go into the OB and pee in a cup?!? They should be the LAST place that has small cups! This office has these awesome wide mouth cups! Haha. Oh the little things! Made. My. Day! Take a hint OB! Ok, off my soapbox!:)

Tammy then takes me to a room where she takes my blood pressure and I wait for the doc. I see the boards on the wall explaining kidney disease and wonder if I will rank anywhere on the scale. Mainly concerned if I will get to that lovely dialysis level. Sometimes as a nurse, it's not so great knowing these things! My guy and I chat about what we think he is going to say. Finally, the doc comes in. He asks about my symptoms. I tell him about the pain, swelling, fatigue, night sweats, cold chills, and just plain BLAH feeling every day. That all I want to do is sleep, when just a couple weeks ago I had to most energy I had ever had! By this time, not only did I have the regular swelling that made my legs a little bigger, but I started experiencing pitting edema. 

Pitting Edema: a physical examination finding that occurs when you press on a patient's skin, usually the shins, ankles, or feet, and a "pit" forms at the site of pressure. Pitting edema is graded on scale from 1 to 4, which is based on both the depth the "pit” leaves and how long the pit remains. Source

             

 Source

  (I did take a picture of my actual leg when I had the pitting edema. But my sister was grossed out that I had it on my phone so I deleted it :-P)

He then starts going over my labs. I acted surprised, like I hadn’t seen the results. Knowing that I’m an RN in the hospital he says, “you already saw these didn’t you?”  Well yes, yes I have! ;) He then confirmed that I did indeed have nephrotic syndrome, but was not sure what was causing it (just as my PCP had told me). He explained that in order to treat me he would need to perform a kidney biopsy. A what!? As in big needle, jammed through my back, straight into my kidney, pulling out a piece of my organ!? Yup, that’s exactly what he meant! 

I remember looking at Jared, then looking back at doc. Back and forth. They were both just looking at me, waiting. Waiting for my reaction I guess. My eyes began to well with tears. That wonderful lump stuck in my throat. “Really?” I exclaimed. My doc is so calm. Just like my guy. Not saying anything, but letting me think. Then there is me who wants to ask question after question, anxiously trying to process everything.

He wanted to do the biopsy as soon as possible so we could begin treatments before the damage got worse. So we scheduled the biopsy at the best hospital around, for that Friday at 9am. I would have to stay overnight for observation to make sure no complications occurred (for those of you that know where I work, you know which hospital I am referring to) :) 

I let my family know what was going on and that the biopsy was scheduled. I also had to call work to let them know that I would not be able to work that day or weekend. Oh, I would be there, as a patient unfortunately, but not as a nurse.

The next night was the traditional Maunday Thursday service at church. Maunday Thursday is held on the Thursday before Easter and commemorates the Last Supper of Jesus Christ. Ever since our current pastor has been at our church, he uses this service not only to participate in communion, but also as a healing service. My family was there, as we usually go each year. There was some music at the beginning. A time of preaching from Pastor J. Then a moment where people from the church shared about their hurts and how God had healed them. Some people spoke of physical healing, while others spoke of emotional healing. It was a powerful night of testimony, hearing about the Lord's faithfulness. One man from our church shared his story of recent healing. He was healed of kidney disease. Sometimes we think that God only heals miraculously. Like, in a moment, without medical intervention. And let me tell you people, HE STILL DOES!! But in his case, healing came through a gracious kidney donor in our church. His story is quite amazing! I was captivated by his story, knowing that I may find myself there where he was. Sharing my own story. After the time of sharing, Pastor J invited those who would like to receive healing from whatever! Physical, mental, emotional, habits. You name it. We all need healed from SOMETHING! James 5:14 says. "Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord." I went up front that night. Surrounded by my family, friends, and church family. I asked God to heal me however he chooses. Sure, a right now healing would be great (and I still expect and pray for that every day!) He didn't choose to heal me right then, but in that moment I was able to let him take all of me. My worry, control, fear, anger, confusion, and say here you go. It's all yours. What a relief not to have to deal with it. (and just to make it clear, this is something I also have to choose to do daily!) Just to know that I don't need to have control of this situation is so great!

It is so awesome to know that no matter where you are in life, HE WANTS YOU! You may think, but I'm a terrible person, or you just don't know the things I've done. Psssht! Aren't we all undeserving of his love!?! I won't even get to where I've been and the things I've done. That's a whole other blog in itself! I don't have time for that. It doesn't matter anyway because Jesus already gave himself for me and you! He loves you regardless. Accept that today! Know his love for you. His amazing love!

 

Wonderful Wednesday!

 

       Wonderful things this week:

My wonderful, fellow Lupites or Lupies (what those of

us with Lupus call ourselves), who come

together every 3rd Monday evening for a support

group. Just a little bit of how totally awesome God is: this

support group started a month before I was even

diagnosed! At my home church people!

Is that not awesome!?!

Friends who 'get me'! Leaving me my all

time favorite beverage at my

door on a day I needed it most!

Little things that make me smile. Like
 first time ponytails on
such a sweet little darling! 

         

 Wonderful, family filled weekends, spent with

  family I wish I got to see more often!

Remembering on days like these how grateful I

  am for healing. A couple of months ago I most 

 likely would not have been able to be at

 an event like this!

      Have a wonderful Wednesday!

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? 

“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);)

Did I Really Just Gain A Pant Size Overnight? Part 2

Some days, it feels like this most recent "fight" began just yesterday, with the details so clear in my mind. Other days, it feels like this change in my life happened long ago.
My life had been pretty routine. I was working about 3 days a week, taking care of my sweet girl who turned a year old this past February and was enjoying being a wife, mother, daughter, sister, friend etc. Then there came a day when things began to change. Not all at once of course, but subtle changes in each day. Although they were subtle, I quickly realized how your comfortable, routine life can change in an instant. Is it really all that bad for things to change? Or is it needed to wake you up and cherish the more important things in life?

These changes began this past March. I noticed swelling in my left foot and ankle on Thursday the 20th. I tried to think if I had twisted my ankle or hurt myself recently? I had been attending Zumba classes at church and working out a lot. I really couldn’t pinpoint a time of injury. So what was going on? Throughout that weekend I noticed the swelling creeping up my legs. I say legs now as the swelling is now taking over both my legs. That weekend at work, my nurse friends and I were trying to diagnose! (just as we had the joint pain back in December) One evening at work, my pants felt particularly tight! This was unusual because I had recently lost 20lbs and was the lightest I had been in years! All of my work scrubs had been loose and baggy until this point. I went into the bathroom and noticed deep crease marks all aver my thighs, hips, pelvis and shins. Ok, I thought. This is a bit more than a simple workout injury. 

Throughout my work weekend we continued to try diagnosing. And then it began, “wow Rach, you don’t look so good!”, “are you feeling ok?” I have such wonderfully caring yet blunt co-workers! I love them!

That Monday I decided I needed to quit procrastinating, trying to figure things out on my own and call the doctor. I called my PCP (Primary Care Physician) Thankfully she was able to get me in 2 days later, which does not happen in her office! She ordered labs, checked me over, and asked me questions about what was going on. She was baffled. She really couldn’t give me any answers as to what exactly was going on. She ordered Lasix 40mg to take daily (a water pill to help reduce the swelling. Oh, and of course make me pee more than I was already peeing, great!:) I was hesitant to take the meds. I had been on a “health kick” for months and was learning about natural health and just didn’t want that in my body. But then the discomfort began to get more extreme. I was thanking the Lord for the Lasix because my legs felt like they had an extra 50lb attached to them! Little did I know this was only minor swelling compared to what was to come.

I went and had my labs drawn. CBC, CMP, Urinalysis (basic labs). Because of the nosy nurse I am, I of course had to look up my results at work the next day! My urine showed very high protein, serum proteins were of course low and my BUN and SED rate were elevated. (BUN is mainly an indicator for how the kidneys are working, along with monitoring some other things in the body, SED rate is an indicator of inflammation)

Ok, what was causing me to dump all this protein? That day (Friday) I got a call from my PCP, yes, she called me personally. I was impressed. She went over my labs, (little did she know I already known the results. But I didn't let on) She stated that I had Nephrotic Syndrome, but was not sure what the cause was.

What is Nephrotic syndrome?
Nephrotic syndrome is a sign that your kidneys are not working right. You have nephrotic syndrome if you have high levels of protein in your urine, low levels of protein in the blood, and high cholesterol. Nephrotic syndrome is not a disease. It is a warning that something is damaging your kidneys. Without treatment, that problem could cause kidney failure. So it’s important to get treatment right away.

What causes Nephrotic syndrome?
There are tiny blood vessels in the kidneys that filter waste and extra water from the blood. When these filters are damaged, you get nephrotic syndrome. Protein helps move water from the tissues into the blood. Healthy kidneys keep the right amount of protein in the blood. Damaged kidneys let protein slip from the blood into the urine. Without enough protein in the blood, fluid builds up in the tissues. This can cause swelling.

Many things can cause this blood vessel damage, including diabetes, lupus, infection, certain cancers, and some medicines. Sometimes doctors don't know what causes it.

SOURCE: http://www.webmd.com/a-to-z-guides/nephrotic-syndrome-topic-overview

My doc told me she called a nephrologist (kidney specialist) and gave him a heads up on my condition. She told me they would be contacting me to set up an appointment next week because this was a bit more than she could handle. Because it was Friday, I knew they most likely would not be calling me until Monday. So I was going to have to wait another weekend.

That weekend of “waiting”, I was glad to have multiple events going on so that I could keep my mind off things. So I thought. My body began acting up in more ways than just the swelling in by legs. It was beginning to be very hard to keep my mind wandering off. I was very thankful to have my family encouraging me that God was in control and I didn't need to be!

Wonderful Wednesday!

Throughout these last few months, I have had to keep my eyes open to the wonderful things in life. There were many days I felt it was impossible to find anything good. Because of so many encouraging people in my life and a God who is always present, I was able to see these little bits of wonderful!

        Wonderful things this week:

  

A sweet surprise left on my porch from a wonderful

 friend to lift me up when it has been 

a tough week.

 

A wonderful mother-in-love who hears from the

 Lord and acts on it! Making me this

 scripture card to read to help me with my latest problem.

*see below :)

 

 (so this is the best pic I could find of

 my guy laying on the couch. Haha. And just look 

at that sweet little baby) 

Wonderful 3hr stretches of sleep at night and a wonderful

 husband who will sleep on the couch for a week (or more) 

and not complain because your insomnia 

is out of control!!

A wonderful life-long friend who's friendship 

is forever true. She has inspired me to enter the 

blogging world and so much more! Check out her blog here at 

Something Beautiful

She wrote such a kind post about me yesterday, 

encouraging her readers to check out my blog. 

Thanks Jess :)

 (Not For A Moment (Live) Meredith Andrews)

And finally, I leave you with a song I heard this week.

It reminded me of how constant the Lord is.

 Even when I felt like I could not go on, I was reminded

of his promises and that he will not forsake me. 

Beautiful lyrics:

after all You are constant
after all You are only good
after all You are sovereign
not for a moment will You forsake me

You were singing in the dark
whispering Your promise
even when I could not hear
I was held in Your arms
carried for a thousand miles to show
Not for a moment did You forsake me

and every step every breath you are there
every tear every cry every prayer
in my heart at my worst
when my world falls down
not for a moment will You forsake me
even in the dark
even when it's hard
you will never leave me
after all 

 

Have a wonderful Wednesday! 

Why Do I Feel Like I'm 90?!? Part 1

I’m going to go way back to my first fight with Lupus. Yes, I call it a fight and I WON! She put up quite the fight. But my God dominated! This was the first sign that I had an illness. Unfortunately, I did not realize what it was until months later. This was mostly due to the fact that I refused to listen to my family and call a doctor! Opps. 

In December 2011 I woke up with pain and stiffness in my fingers and hands. My hands would be stuck in the position as if I were holding a pop can. But eh, there was no can there! They were often red and sometimes swollen. Some days were worse than others. Most days, it would take till afternoon before the pain and stiffness would subside. It started out mostly hitting me in the mornings, but then the pain would go well into the afternoon and evening. It was during these nights where I would save the dirty dishes for evening just to get some relief from the pain! Ahh, warm water! What a relief! And added bonus, I got the dishes done! :)

I remember one evening getting so frustrated that I couldn’t even change my own daughters diaper or put on her pajamas. I cried and felt helpless. I felt like a horrible mother. My guy quickly stepped up during these times, helping me do what I just simply couldn’t, and reminding me that I am NOT a horrible mom!

My work girls and I would try and diagnose. Carpal Tunnel Syndrome was a hit. There were a couple days at work where I would have to ask the other nurse working with me to open up my patient’s pills and fill syringes for me. My fingers just would not work how I wanted them too!

Then this crazy pain and stiffness threw me for a loop! One weekend around Christmas my knees were attacked by pain and stiffness just as my hands had been. Only now, my walking was affected. That weekend I remember having to crawl up the stairs! “Look E, mommy has to crawl like you now!” Lol (She wasn’t walking yet at that time) Some days it would be both knees, other days, just one knee.

She (lupus) didn’t stop there! She just HAD to find another spot to try and debilitate me! To the toes she goes! It’s like the pain and stiffness was working its way down. Well, there’s nothing past my toes so good! 

My family kept telling me to call the doc. But I didn’t. Just when I actually thought about it I would have a good day with hardly any pain or no pain at all! I asked my unit doc for his opinion. He wasn’t sure, but told me it sounded like Rheumatoid Arthritis. I disagreed and said I was too young for that!

There was an end in site! Praise Jesus! My sis and I stared Prism at church. Basically, Prism is a weight loss group where you rid your diet of refined sugar and flours. I wanted to lose some weight, but more so, wanted to be healthy and create a better healthy eating lifestyle for my family. 1 ½ weeks into the program, the pain and swelling in my hands, knees, and feet that I had been experiencing for a month now had vanished!! All I have to say is that it’s amazing the simple changes we can make in our lifestyle to better ourselves!

To find out more information about Prism visit: http://www.pwlp.com/

A new class starts often at DFC. I highly recommend this program! It really works!

Here We Go...

I first want people to know I am a terrible writer. I am not an English teacher or an A+ student! I own run-on sentences! I AM a nurse, who is taught in school to chart to the point not worrying about punctuation. Therefore, this blog is to the point. Containing my thoughts and not really focusing on how proper or correct I am. My hope is that my lack of proper writing does not deter you from reading. :)

Because of my medical profession, I will do my best to explain terms and try not to use nursing shorthand too much! Also, I will not hold back details. Yes, I am the wife whose husband says at the dinner table, “hun, I’m eating,” when sharing the details of my work day!

I decided to start this blog to share my recent life happenings. My life took a major turn a couple of months ago. I have been forced to adapt to a new lifestyle. I have witnessed first hand how the beauty of Christ shines through even in the darkest of moments. God is so faithful! I feel it is my responsibility to share how much love he has for me as well as for you! He is in every detail and I want people to see how personal of a God he is! I also think this will be very therapeutic for me as I put my thoughts and feelings out there!

I plan on writing bits of my story here and there throughout the week. Most of it will be things that happened months or weeks ago and some will be the here and now!

Even though I will share a lot of the difficult times, please don't feel "sorry" for me! I pray you will find encouragement and will sense the abundant love Christ has for you! Please feel free to leave comments/feedback for me as I'm just starting! I would love to hear that people are reading.

Rachel