Am I In School Again? Kidneys 101. Part 7

Yes, more waiting for us as we wait to here from the other nephrologist about my biopsy report. My doc just rips out a piece of my kidney and leaves for vacation! Haha.

I felt a little in limbo about hearing from him. Since my doc said no news is good news, did I really want to hear something before my appointment that following week? At the same time, I wanted to know what was going on with my kidneys that was making me feel so terrible!

After coming home from the hospital, I had a couple days off before I had to return to work. I was to work Monday, Tuesday afternoons, and Wednesday midnights. I remember my guy asking me, "what are you thinking? You feel terrible. Call off!" I knew I was feeling terrible but didn't want to give up just yet. My stubbornness was getting ahead of me. I went to work that Monday and worked with one of my awesome fellow nurses, Sammie. From the beginning of the shift I knew I was in for a long night! I was so tired but knew I had a job to do and was determined to do it! I wanted to care for my patients just as I always had. Unfortunately, my body was getting in the way. Luckily, we had been having a pretty low census and there were only a handful of patients that evening which made the workload light.

I remember coming back from my supper break and was beginning to feel aweful. Sammie expressed that I was looking not myself and pretty bad. I agreed! Once again, I love my blunt co-workers. Nothing like co-workers who are real with you and vice-versa! We had done most of our evening duty's, such as; VS, getting all the patients into bed, med passes, snacks for patients, etc. Honestly, Sammie did most of it! She insisted I just sit at the nurses station, but I wasn't listening! ;)

I was helping get a patient ready for bed. My patient was in the bathroom and I was getting her bed ready for her. I felt like I could collapse. I was so dizzy, the room spinning, my back pulsating with pain, I was having cold chills but sweating profusely at the same time. I was stubborn. I didn't want to let this get me down. Sammie, who had just got done assisting another patient, came into the room where I was. She took one look at me and pretty much demanded that I go sit down the rest of the night! I listened this time, considering it really would not be a good thing if I had passed out in front of my patient! I knew if I didn't sit down that is exactly what was going to happen. My colleagues would be calling a Rapid Response on me!! (a RR is not quite a code blue. Called when a patient (usually), visitor or colleague takes a turn for the worse, falls, passes out, etc.)

After all of the patients had been medicated and were in bed, Sammie and I finished up our charting at the nurses station. We talked a bit about my biopsy. I had her take a look at my biopsy site to see how it was (us nurses like stuff like that). As she was looking at my back I explained how my lower back felt swollen. She agreed and said it was pretty swollen. I was really filling up with fluid by this time. The back dimples I had always had were filled in! Lol. Since the water had no where further down to go, it was beginning to creep up!

While at work I ended up talking to the nursing supervisor (I'm pretty sure Sammie made me call her too! What would I have done without her!?) She explained to me how she would possibly need to EO (Excused Off) an RN the next couple of nights. Knowing my situation, she said she would put my name down on those nights to be one of the first called. I was so grateful for her and knew it was God working. Finally the end of sift came. I never thought that night was going to end! I remember walking through the door at home that night, barely able to say 'hi' to my guy. I literally crawled, hands and knees, up the stairs to my room. Barely able to take off my scrubs and crawl into bed. My wonderful husband just loved on me the best he could, praying for me and just letting my cry myself to sleep. 

I got called off work the next two days! Thank you Jesus! I think my family was even more glad I was called off than I was. They knew it was wearing on me and that I was too stubborn to call off.

Those nights that I was called off work were the beginnings of some of the worse days I have ever seen. All I could do most of the evening was lie on the couch and watch my girl and guy play. Mommy was pretty much useless. I was having those terrible cold chills and night sweats in the evening and well into the night. Nausea and pain were taking over my body. 'Though there is pain in the night, JOY comes in the morning!' Psalm 30:5. That verse was such a help to me during those nights! I remember crying that verse out to God MANY nights. The afternoons and evenings were my worst moments of the day. In the morning, I felt my best and knew if I could just make it through the night, the morning would come and bring me a little energy and less pain.

Tuesday, my guy called my doc's assistant Tammy, to ask her if she had heard anything from the pathologist yet. She said no, but would check and give us a call if she had, regardless of the results. 

Wednesday came as I anxiously waited a call. Then that afternoon my phone rang. It was Tammy calling. Tammy explained that the pathologist report had come back and that the doctor filling in for my doc was going to be calling me shortly. About 10 minuets later the nephrologist calls. He had quite an accent so it was a bit difficult for me to understand him. I sat at the table with paper and pen in hand. I didn't want to miss anything he was telling me.

He stated that my kidneys were showing on the pathology report extreme damage and he wanted me admitted to another hospital first thing in the morning (one where they could monitor me a bit closely). At first I thought, oh man, this must be bad if I have to go there first thing tomorrow and be admitted for 3 days! He then explained to me the reason for the hospital admittance was to complete 3 rounds of intense I.V. therapy. He said he would like to do chemotherapy treatments to reverse the damage. Then he asked if I wanted to have more children. "Yes, I would!" I exclaimed. He then changes his mind and says, "well since you do want to have more children, we will go with high doses of steroids instead." (chemotherapy can cause infertility issues) I asked him if there would be any other treatments or monitoring other than the IV steroids and lab draws. I didn't understand why this couldn't be done at MY hospital. He confirmed that it would just be IV treatments and I could have it done at my hospital if I preferred. I then told him we had outpatient special procedure treatments where you can go in on a scheduled time, have your treatment, and go home. He said it would be fine to do that too! (it really paid off being a nurse and knowing these options existed!) I REALLY did not want to be that far from my girl for 3 days if I didn't have to! He agreed that it would be fine and set it up where I would go in for my steroid IV treatments, Thursday, Friday, and Saturday. I would then follow up with my regular nephrologist that following week for my scheduled appointment. 

He then explains to me a little more about my diagnosis. He says I have been given the diagnosis of lupus nephritis. Honestly, I can say I was a bit relieved by the news that it was lupus and nothing worse. (even though right now I can honestly say LUPUS SUCKS! ;) He explained that because of my high ANA lab level and my joint pain back in December it all came together and was lupus. He said he was unsure what exactly caused my lupus to all of the sudden "come out" of hiding. At that point, I was unsure as well. 

Just to give you a little idea of what the kidneys do and how mine were damaged, here is a description of normal kidney function followed by my pathology report for those medical people out there who are interested! :) 

The kidneys' function are to filter the blood. All the blood in our bodies passes through the kidneys several times a day. The kidneys remove wastes, control the body's fluid balance, and regulate the balance of electrolytes. As the kidneys filter blood, they create urine, which collects in the kidneys' pelvis -- funnel-shaped structures that drain down tubes called ureters to the bladder.  

Glomerulonephritis: An overactive immune system may attack the kidney, causing inflammation and some damage. Blood in the urine and kidney failure are common symptoms of glomerulonephritis.

Source

Stage IV Lupus Nephritis (Diffuse Proliferative) is both the most severe, and the most common subtype. In it, >50% of glomeruli are involved which can be segmental or global, and active or chronic, with endocapillary or extracapillary proliferative lesions. In Electron Microscopy, subendothelial deposits are noted, and some mesangial changes may be present. Immunofluorescence reveals the so called "Full House" stain, staining positively for IgG, IgA, IgM, C3, and C1q." Clinically, Hematuria and Proteinuria is present, frequently with Nephrotic Syndrome, Hypertension, Hypocomplementemia, elevated anti-dsDNA titers and elevate Serum Creatinine.Source

So that gives you a bit of an idea what the kidneys do and what mine were not doing! Filtering. In a nut shell, as you see in my diagnosis at the top of the pathology report; Active (happening now), diffuse (affecting a large area), global (entire kidney involved),  proliferative (multiplying) glomerulonephritis. Whew! 

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. 

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!