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. 

Prednisone: How Can Such A Little Pill Make Me So....AHHH!!!

After my IV steroid treatments of 750mg x3 days I tapered down to 60mg Prednisone daily. (Prednisone is the name for the oral form of steroids where Solumedrol is the name for the IV form)

I knew some of the side effects of steroids. I had seen the effects first hand, and had also heard of some of the side effects from patients and friends who had been on high doses. 

Right after my IV doses, the only thing that I started experiencing was lots of energy early in the morning. I would wake up around 4am every morning, ready to get moving! This started to get very frustrating because by the time Elin woke up I was getting pretty exhausted.

My mom had received an email from a friend of ours at church who had undergone a kidney transplant due to kidney failure. I wrote about him a little here. He had been on high doses of steroids as well and wrote my mom, giving her a heads up on what I may experience on the steroids. My mom so kindly sent it to Jared to "warn" him! Haha. I'm glad my family was a little prepared as to what they were going to be experiencing! See below...this sums it up.

 

http://prednisonesupport.tumblr.com/

Here is a chart describing the side effects of steroids. The intensity of side effects will vary from person to person and size of dose. I will explain below a little how each has affected me, or not affected me. 

Emotional Disturbances: Where to start? Feeling on edge 24/7. Anxiety every moment of the day. Excitability. Shaky. Wanting to snap at the littlest things that would bother me. (I am currently on 10mg daily and still have my days when this affects me but definitely not as bad now!)

Enlarged Sella Turcica: A depression in the base of the skull where the pituitary gland is situated.http://www.medterms.com/script/main/art.asp?articlekey=9683

Moon Facies: This is a moon face. Your face going from nice cheek bone definition to a very round "puffy" face! I noticed my face getting "puffy" one day when I was putting on my makeup. My cheeks felt like I had them puffed. When I looked closer in the mirror I realized I looked like it too! I don't really have any good picture of me with my moon face. Now that my face is "normal" again, I wish I would have taken one! Here is the best one I could find. It's hard to tell. You can also see my large abdomen if you look closely. If anything, this picture shows off some pretty special people! :)

Osteoporosis:Osteoporosis, or thinning bones, is a serious condition that can result in tremendous pain with fractures. http://www.webmd.com/osteoporosis/default.htm
This possible side effect is one of the reasons why I get to "indulge" in at least 2-Tums Extra Strength tabs each day. They give me the added calcium I need to keep my bones strong. They also are much needed for the abdominal pain caused by the prednisone! 

Cardiac Hypertrophy (Hypertension, high blood pressure): I remember one night, the week right after my IV treatments and just a couple days before seeing my nephrologist, I was in bed and woke up at about 12am with the WORST headache! I had taken Tylenol just before bed (which I had been doing for the kidney pain). This concerned me that a headache woke me up! As I sat up in bed, my heart felt like it was going to explode, I was sweating and hot and did not feel right. Because my BP had been high at previous appointments and in the hospital, I thought I better check it to make sure I didn't need to go to the ER. (not that I would have anyway, and I didn't when I maybe should have) I stumbled down stairs to get my BP cuff and stethoscope, brought it up to bed and tried my best to put it on myself. (that was funny) I told Jared what I was doing, but, he is a great sleeper and didn't wake up enough to know what was going on! :) My BP was 158/100 I believe. Luckily my doctors appointment was soon so I knew it would get taken care of then!

Buffalo Hump: Oh yes. A buffalo hump is extra fat that develops at the back of the neck and upper back. Mine developed pretty much at the base of my neck. 

Obesity: So...I had just finished loosing 20lbs doing Prism (I talked a bit about Prism here) I was already gaining weight quickly due to water weight from the swelling, add the prednisone and the abdominal weight gain began.

As you see in the picture below, one of these photos is of me carrying my sweet Elin in my belly and the other is a picture of me on 60mg of prednisone and ascites (accumulation of fluid in the peritoneal cavity) due to the kidney damage. Can you tell? ;)

 The photo on the right is me pregnant

Adrenal Tumor or Hyperplasia: The adrenal gland producing too much cortisol. Cortisol is the bodies natural steroid.

Thin, wrinkled skin: I really haven't experienced this. 

Abdominal Striae: Oh stretch marks! My stomach was already "blessed" by you while I was cookin' my sweet baby girl! ;) With the abdominal obesity caused by the prednisone, I now have added stretch marks.  

Amenorrhea: Or, absent menstruation. This is, I believe, the ONLY positive thing about prednisone!! Unfortunately, due to my crazy mood swings, abdominal bloating and acne, you would have thought I was PMSing every day! ;) 

Muscle Weakness: Just to give a little example. Back in June we had our vacation bible school program at church and I held my 18 month old nephew (who weighs a bit more than Elin) during most of the program (only about 20 min). I woke up the next day and my arms were soo sore! They were tender for about 2 days after that! Haha.

Purpura: Bruising. I Bruise pretty easily now. Not as much now compared to when I was on a high dose of prednisone. I have one reoccurring bruise on my right forearm, right below my antecub. It's weird. It just likes to "show up" every now and then. 

Skin Ulcers (poor wound healing): I was lucky enough not to get any ulcers. And when I went on the prednisone I didn't have any sores or cuts that required healing. Since I'm pretty prone to injury, I have had to be VERY careful not to injure myself. I'm pretty amazed at how well I am doing!

A few other side effects this chart does not mention that I also have experienced while on prednisone: acne, insomnia, hyperglycemia (high blood sugar), hot flashes, increased hunger, excess stomach acid secretion (not so much heartburn but severe stomach pain/burning, like my insides were eating themselves), and abnormal heart rhythm (which I currently deal with on a daily basis, it's really annoying!)  

 

http://complicatedfabulous.wordpress.com/

I have tapered down from 60mg to 10mg (my current dose) over the course of a couple months. I must say, this drug is NOT fun, but it DID do the trick as far as healing my kidneys up. I am so grateful it has worked so I would not have to go through; chemotherapy, dialysis and/or a kidney transplant. Thank you Jesus!

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!