Days Like These, I Love Seeing My Doctor!

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!  

Do I Have A Deflate Button?

Where to begin.

Simply put: swelling is terrible.

Taking care of patients, I have seen my share of swollen feet, legs, etc. When I worked in the telemetry unit, I witnessed this in my CHF (congestive heart failure) patients. Then, when I moved to rehab, I saw swelling from surgery or injury to knees, hip, legs, etc. 

I then started to experience it first hand, in my own body.

What was causing all the swelling in my case?

Heart, liver, or kidney disease. Sometimes swelling can indicate a problem such as heart, liver, or kidney disease. Ankles that swell in the evening could be a sign of retaining salt and water because of right-sided heart failure. Kidney disease can also cause foot and ankle swelling. When kidneys are not functioning properly, fluid can build up in the body. Liver disease can affect the liver's production of a protein called albumin, which keeps the blood from leaking out of the blood vessels into the surrounding tissues. Inadequate albumin production can lead to fluid leakage. Gravity causes fluid to accumulate more in the feet and ankles, but fluid can also accumulate in the abdomen and chest. If your swelling is accompanied by other symptoms, including fatigue, loss of appetite, and weight gain, see your doctor right away. If you feel short of breath or have chest pain, pressure, or tightness, call 911.

http://www.webmd.com/a-to-z-guides/swollen-ankles-and-feet?page=2 

Ascites is another form of swelling I saw quite a bit of at work. I quickly beacame a little more familiar with it once it "hit" me. It was a bit more personal.

Ascites is excess fluid in the space between the membranes lining the abdomen and abdominal organs (the peritoneal cavity). http://www.webmd.com/digestive-disorders/ascites-medref

When I first noticed the swelling, before my diagnosis, it was pretty minimal. Pitting edema, as I shared about here, started to appear, and then it slowly started creeping up to my thighs. This caused me to feel as if I were growing out of my pants. The term "bursting at the seams" became oh so real. The swelling began worsening after my IV steroid treatments. Frustrating. I thought that was going to be my quick cure all. HA. 

My ankles were slowly getting "lost" somewhere in my leg. My legs were so filled with fluid that I had kankles. :) 

What are kankles? 

Kankles are calves that become feet without taking an ankle break. 

http://www.urbandictionary.com/define.php?term=kankles 

During this time, I had asked my nephrologist if I could double my dose of lasix (the water pill that helps you dispose of extra water). He agreed that it would be fine, considering I would take it first thing in the morning and by 1:00 in the afternoon I would be unbelievably swollen again. At the time, I really didn't think the lasix was doing a thing because I was SO swollen. When I look back on that time, I'm sure it was indeed helping. I can't imagine it being worse, but I'm sure it would have been if I hadn't been taking the lasix. 

When my swelling was at it's worst, oh my did it control my life. I experienced swelling for about 8 looong weeks. 6 of those weeks were filled with some serious swelling (no pun intended ;) 

I couldn't sit or stand for more than an hour without my feet and legs blowing up. This caused my feet to be too big for my shoes. If I was planning of going somewhere, doctors, church, (that's about the only places I went besides families houses), I would have to lie on the floor, on my back, with my butt up against the couch, legs over the seat, plus multiple pillows under my legs to make them even higher. This would push my swelling up to my abdomen and pelvis. Oh what a sight I was. 

Another position that I found highly effective was lying on the couch on my side with my legs propped up and my upper body somewhat upright. Like a V. This pooled all the fluid to by abdomen. The best place for it to go I guess. It was already stretched out from pregnancy anyway. Thank you Elin! ;)  

Remember this picture? 

The one on the right is of me pregnant. The one on the left is me swollen. I gained 35lbs during my pregnancy and 30lbs from the swelling. Oh yes. 

Can  believe I only had one person ask me when I was due? Gotta love the receptionist at the eye doctor. I was expecting it. I knew I looked like I was going to give birth. I had a huge belly plus I had swelling to my feet. The poor lady was so embarrassed (as well as all her coworkers who witnessed the awkward conversation). I could tell she wanted to crawl under the desk. I explained to her that no, I was not pregnant, although I wished I were, and that I had just been diagnosed with lupus and was on a high dose of steroids. Yah, maybe I didn't need to go into detail. But hey, I'm a nurse, that's what we do. And maybe, she will not ask someone else who may be in the same boat as me and who may be a bit more sensitive than I. Ok, I guess I was a little sensitive. I did go to the car and shed a few tears wondering if I would ever look "normal" again.

The other day, I was telling Jared how I was working on a blog post about when my swelling was so bad. We were remembering how bad it was and couldn't help but laugh a little. As I said above, the best place for the swelling to go was to my abdomen and pelvis. I was telling Jared how I was having a hard time figuring out how to describe the swelling happening to my "lower" parts. So, I asked him to help me out. Lol. His response? "Umm, you were puffed shut." I laughed and laughed! Yup. He was exactly right. Puffed shut for a month. Poor guy. Need I say more?

 Here is Elin. Chillin' out in her car just like her mommy had to! She's much cuter though!

This is how I looked whenever I would have to drive somewhere (well, my right leg on the peddles of course). My left leg would be up at the window. If I would have to go multiple places, I would allow myself extra time so I could recline and put both my feet up to decrease the swelling.

When I was younger my mom would NEVER let us put our feet on the dash. This time, I was able to get away with it! She let me! Lol. I remember one time she was driving me somewhere when I needed to have my legs up. She said, "you know Rach, I've been learning a lot from you lately, and I won't look down on another person with their feet up on the dash again. Who knows what they are going through!" I laughed and thanked her again for letting me put my feet on the dash. I know it was tough for her to let me. ;) 

There were days where I resorted to wearing my support hose and tied my shoe laces very tightly when I had to go out to push the fluid up. Other days, my flip flops were my best friend. Even in 40 degree weather.

My current status: I no longer have swelling. And no longer have to take lasix. It lasted much longer than I thought, but praise the Lord I am no longer living as if I were pregnant again! That was an awful time for us, and I am so grateful it is over. 

Pills, Pills, and More Pills. Part 2

Gotta find it fun somehow! ;)

After receiving my med list from my nephrologist, Jared and I spent the next 3 days trying to create a schedule for my meds(he is so great at stuff like that). It was CRAZY to try and figure it all out! Here is kind of how it went:

Cellcept, that I have to take twice a day, has to be taken on an empty stomach 2 hours after eating and an hour before eating. It cannot be taken within 3 hours of the zantac. Prednisone needs to be taken with a meal and is best to take in the morning. Zantac should be taken with the prednisone first thing in the morning so it will help with the side effects. Lasix, taken twice a day in the beginning, needed to be taken sometime in the morning and afternoon, just at the right time so my swelling wouldn't get out of control, but not at bedtime or I would be peeing ALL night! Bactrim MWF whenever. Tums same. Lisinopril best at night. 

WHEW!! This literally took days to get right! I finally have a pretty good routine! But let me tell you, it sure does stink to have a pill control when you can and can't eat!!

Through this, I have learned just how important it is that when I send patients home with their med list, I need to give them details and make sure they understand things completely!

I'm not blaming anyone, but want to let you know how important it is that we know the details of the medications and treatments we take. No doctor, nurse, or PA told me about side effects, interacting medications with one another, when to take them, when not to take them, etc. I'm glad I wanted to know the details of what I was taking. KNOW WHAT YOU TAKE, HOW TO TAKE IT, PRECAUTIONS and SIDE EFFECTS OF YOUR DRUG! Because, someone may not tell you. 


I had some anxiety (thank you again prednisone)about how the heck I was going to remember taking all these pills! One evening, when I was in denial about my disease, I and wanted to be "normal". My mom, grandma, sis, aunt, cousin and I went out to a movie and dinner. It was a wonderful time! On our way home, my sis INSISTED we go into Walgreens and buy a pill organizer! I don't know what I would do without my nifty organizer divided into AM and PM! Plus, I can remove a day and put it in my purse if I'm going to be out when I need to take it. I really should have got the one for Morning, Day, Afternoon, and Evening because I was taking pills at least 5 different times a day in the beginning. I refused to go that far. The thing was the size of a laptop! Lol.  

My glass cabinet has now been converted to my med cabinet. And this is how I spend my Sunday afternoons; watching the Browns and getting my pill box together for the week! Lol. What an exciting afternoon! ;) The little red thing in each photo is a pill cutter from my grandparents. They had an extra one laying around and I needed one! Hehe. 

As much as I HATE taking pills, I am glad they are working and I know this is just for a time. We are so blessed to have insurance through the hospital! For example, here is the label from one of the meds I take:

That is for a 2 month supply. Is that not crazy?! I told my doctor how much insurance saved me and that I still had to pay close to $300. He was taken aback. Speechless. I asked him what people were supposed to do if they didn't have insurance coverage. He said he didn't know. I said, "well, I wouldn't be taking it!"   

My goal is to get off ALL medications and try to control my lupus as natural as possible. I pray I won't have to go through much trial and error. I try not to think of the long term side effects that some of these medications have. Because quite frankly, they scare me. 

Pills, Pills, and More Pills. Part 1

The week after my IV steroid treatments I had a follow up with my regular nephrologist. I hadn't seen or heard from him since my biopsy because he was on vacation right after the procedure. I dropped Elin of at my sisters house and headed to my appointment. Jared of course wanted to come and hear what he had to say. I was NOT feeling better at this point and wanted to know why. I had that huge dose of steroids that weekend! Why wasn't I feeling better!?! 

I was seeing my nephrologist every 2 weeks then and having blood work done every week before the appointment to check my kidney levels among other things. Now I go every 6 weeks, yay, I've made progress!

He started discussing my progress and my treatment plan based on my lab levels and controlling the lupus. I told him my blood pressure had been running high (which it was that day at my appointment).

He started telling me about the meds he wanted me on. Then said, "umm, I better write these down." Oh boy, I knew I was in for quite the med list!

Prednisone 60mg daily, taper to 50mg daily. As I posted here on Monday, the prednisone is used to reverse the kidney damage. You MUST taper off steroids. I am on 10mg now with pretty minimal side effects compared to when I was on 60mg. I cannot WAIT to get off it!

Cellcept 250 bid (this means twice daily) week 1
         500 bid week 2
         1000 bid week 3 = This is my current cellcept dose.
I have been on this dose since May. When my doctor first told me he wanted me on this drug it had sounded very familiar to me. I quickly remembered having a patient that was taking it who had just received a liver transplant. This drug is given in patients who receive transplants to keep their body from rejecting the organ. I was a little confused as to how this was going to help me. Was he preparing me for a kidney transplant? No.  

Basically, cellcept is an immunosuppressive. In lupus patients, during a flare, the immune system is going CRAZY, as in, hyperactive. The tiger needs tamed!! That's where cellcept comes in. For all my medical buddies, here is more detail on cellcept: http://www.drugs.com/cellcept.html

Bactrim DS 1 tab MWF. This is an antibiotic taken 3 times a week as a preventative to infections. I take this because both the prednisone and cellcept are suppressing my immune system, making me VERY prone to infection. So far, during my treatment, I have only had ONE infection in June. My doc quickly put me on another antibiotic for 5 days and the cold only lasted about a week. As soon as I show ANY signs of infection; fever, chills, green/dark snot or phlegm, sore throat, etc. I MUST call him right away and get put on yet another antibiotic.

Lasix 40mg BID There were some days where I really wanted to overdose on this med. Not to kill myself, but because the swelling was SO bad and painful, I wanted it GONE! 
I am not on this anymore. I stopped taking in June because my swelling was GONE!!

Lisinopril 10mg daily. I had to increase to 20mg because my BP was not controlled on the 10mg. I'm only on 5mg today! Yay! (I'm still on a higher dose than my grandma though! Ugh! Lol) My BP became elevated due to the prednisone, but more so from the kidneys not doing their job.  

If the flow of blood through the renal arteries decreases for any reason, the kidneys can be tricked into thinking that blood pressure is too low. The kidneys detect this decrease and release the hormone renin in an attempt to raise blood pressure and restore normal blood flow. Problems arise when the decrease in blood flow is not actually caused by low blood pressure. In these cases, the kidneys end up raising blood pressure to very high levels in order to push more blood through the narrowed renal arteries. http://highbloodpressure.about.com/od/associatedproblems/a/renovascular.htm

Zantac 75mg daily. This was a requirement for me every day! The prednisone ate up my stomach so terribly! The pain was unbearable at times! Since I have only been on 10mg for about a month now, I do not take is every day. Still, there are days that I feel that pain coming in the morning and have to take one. Nothing compared to before though!

Tums ES 600g BID I took this to help with the above ^ problem. Stomach issues. But also, to increase my calcium level from the prednisone that was depleting me of it. 

As my doc was going over all the meds, adding and adding, I could not help but become overwhelmed. My eyes filled with tears as I thought about how quickly my life was changing. From never needing any kind of medication to a bazillion pills! (Ok, exaggeration). Not only was I overwhelmed with the pills, but also his explanation of the kidney damage and how bad it really was, that I was going to be off work for months, and that the lupus was a pretty big deal, more serious than I thought. Hello denial? Maybe. I asked him why I was feeling worse and not better after the IV treatments. He told me that it just wasn't that easy for my kidneys to heal based on how badly they were damaged. 

Because of my amazing God and wonderful family and friends who have encouraged me, I am not going to let this disease define me. Who I am is not found in a disease, but in WHO I am in Christ! I am His and He is mine. No one can take THAT away! 

Think about your current struggle. Are you allowing it to define you? Let Him have it!

"Who I am is not found in ________, but in who I am in Christ!"

Who are we in Christ?  

I have the mind of Christ (1 Corinthians 2:16; Philippians 2:5).
I can do all things through Christ Jesus (Philippians 4:13).
I have the peace of God that passes all understanding(Philippians 4:7). 
I am more than a conqueror through Him Who loves me (Romans 8:37).
I am the light of the world (Matthew 5:14).
I am forgiven of all my sins and washed in the Blood (Ephesians 1:7). 
I am healed by the stripes of Jesus (Isaiah 53:5; 1 Peter 2:24).

I am greatly loved by God (Romans 1:7; Ephesians 2:4; Colossians 3:12; 1 Thessalonians 1:4).
I am strengthened with all might according to His glorious power (Colossians 1:11)
I press on toward the goal to win the prize to which God in Christ Jesus is calling us upward (Philippians 3:14).
For God has not given us a spirit of fear; but of power, love, and a sound mind (2 Timothy 1:7).

It is not I who live, but Christ lives in me (Galatians 2:20).

...and oh so many more here! 

If It's IV, Why Does It Seem Like PO? Part 9

Infusion Thursday came. The beginning of my steroid treatments. This would be a 3 day adventure for me. My mom insisted on taking me to my first treatment. I was feeling pretty exhausted and was unsure of how I would feel after my treatment, so I obliged. ;) 

I headed up to the outpatient special procedure room a little before noon. I walked in to to the treatment room where I was met by one of my nursing friends who runs the small unit. She was running around, very busy, dealing with other patients there for infusions, injections, etc. Most everyone receiving treatments were well over 60 years old. Needless to say, I felt a little out of place. The nurse registered me into the computer system quickly and called down to the pharmacy so the IV medication could be delivered. She told me to sit wherever I wanted to. There were about 10 large, comfy, reclining chairs all around the room with an IV pole at each chair.  

I waited and chatted with my mom, waiting to begin the treatments. The nurse comes over and takes my VS. She took my blood pressure and was surprised at how high it was. (I'm pretty sure it was something like 145/90) It had been running that high when I was admitted to the hospital that past weekend. All my other vitals were fine. Just that darn high BP and high heart rate (which I have always had). 

The nurse sends some of the patients who are done with treatments on their way. It's just me sitting next to a sweet, little elderly lady who is receiving a blood transfusion. The nurse then puts in my IV and begins the treatments. 

Knowing that I am a nurse, she gets me the IV solution and treatment medication book out so I can look at symptoms, side effects, etc. of the drug. Each treatment will be a whopping 750mg! The nurses, including myself, were a bit surprised at such a large dose, saying that we had never given a dose that large before. All I could do was laugh at the "firsts" I was experiencing and pray this treatment would reverse the damage to my kidneys. 

If your like me and want a more detailed explanation, this is why steroids are used for treatment of my lupus nephritis class IV:

Classes III and IV

Patients with either focal (class III) or diffuse (class IV) lupus nephritis are at high risk of progressing to ESRD (End Stage Renal Disease) and thus require aggressive therapy.

Administer prednisone 1 mg/kg/day for at least 4 weeks, depending on clinical response. Then, taper it gradually to a daily maintenance dose of 5-10 mg/day for approximately 2 years. In acutely ill patients, intravenous (IV) methylprednisolone at a dosage of up to 1000 mg/day for 3 days may be used to initiate corticosteroid therapy. 

In patients who do not respond to corticosteroids alone, who have unacceptable toxicity to corticosteroids, who have worsening renal function, who have severe proliferative lesions, or who have evidence of sclerosis on renal biopsy specimens, use immunosuppressive drugs in addition to corticosteroids. 

Mechanism of Action

Glucocorticoid; controls or prevents inflammation by controling the rate of protein synthesis, suppressing migration of PMNs & fibroblasts, reversing capillary permeability, & stabilizing lysosome at cellular level

http://emedicine.medscape.com/article/330369-treatment#aw2aab6b6b2

She started my treatment and explained that I would probably have a terrible taste in my mouth after the treatment. Boy was she right! The horrible taste started within 15 minutes of the treatment! I tried chewing gum to take the taste away but that hardly helped. It's so hard to describe the taste: metallic, bitter, nauseating, unnatural...disgusting! Lol. This taste lasted pretty much till evening every treatment day. I did learn, after day one, to order a meal tray before, and eat lunch during the treatment. This helped a little bit. The infusion lasted about an hour each day. I was usually there for at least 2 hours due to; IV placement, waiting on pharmacy to deliver meds, the nurse who was very busy each day, and of course, computer problems! :)

I asked if I could keep the IV in place since I was coming back for another treatment the next day. I thought, no sense in poking me twice if I don't have to be! The nurse wrapped it up good and gave me a couple flushes so I could be sure it was going to stay intact. With Elin pulling on it saying 'boo boo' all the time, showering and dressing, I was surprisingly able to keep it in until the next day!

By the 3rd day of treatment I knew my IV wasn't going to make it. It was starting to become red, painful and just plain annoying. So, I pulled it out Friday night! I figured I'd just get stuck again. No big deal.

My mom was awesome! She took me to get groceries after my treatment because we didnt have much of anything to eat in the house. I had been so busy with doctor and hospital visits and not feeling up to it. Even though I was feeling pretty bad, I wanted to prove to myself, and others, that I was still able to function. HA! (I still say that and act like it on a daily basis) ;) As I was walking down the aisles at the grocery store by myself, (mom was getting her own groceries) I remember feeling like I was having an out of body experience. I was dizzy, in a total fog, ready to pass out from exhaustion. I ran into one of my moms friends (surprisingly, not literally) and talked for a minute about how I was doing. Once again lying about how "good" I was feeling! Then later, my mom tells me how her friend told her how out of it I was. My mom agreed. I was not really "there". Walking around the grocery store was the most activity that I had done in weeks and boy did I push my limits with that one! 
 
I guess I expected that I would be completely healed up and feeling amazing by the end of the 3 IV treatments. HA. That's funny. Aside from having a lot of energy at 4:00 in the morning (thank you steroids) I was still just as exhausted, in pain, and now much more moody and on edge (thank you again...steroids). 

Sunday I began my PO prednisone of 60mg. Yes, this is a very high dose of steroids. I was just wondering when the side-effects would start kicking in. Oh, and did they ever! Little did I know that next Wednesday at my nephrologist appointment, I would be substantially adding to my pill collection. Oh boy!
 

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!

 

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!