Lymphedema 101

Because Jill asked, and this should have been her big day, I will comply! :)

By definition, lymphedema is an abnormal accumulation of protein-rich fluid in the interstitium, which causes chronic inflammation and reactive fibrosis of the affected tissues.

Hmmmm.

So what does that mean? Basically, lymphedema is swelling of a body part, most often the extremities. While it can occur in the face, head, neck and trunk, most people picture really, really really large legs when they think of lymphedema. Elephantiasis. Of the 3 stages of lymphedema, it is the most severe.

Not only are there 3 stages of lymphedema, there are 2 classifications as well: primary and secondary. The first is a result of lymphatic dysplasia and is either present at birth or develops later in life without obvious cause. Milroy's disease, Meige's Syndrome and Kinmonth Syndrome are a a few types of primary lymphedema. Secondary lymphedema, the more common form, usually results from surgery or the side effects of radiation therapy for the treatment of cancer. Additional forms of secondary lymphedema can be attributed to trauma, infection, chronic venous insufficiency, obesity and filariasis (parasite).

Most of the patients I see developed lymphedema during or after the treatment of cancer. Their lymph nodes were either radiated and damaged or removed. Unfortunately, this potentially life saving treatment can disrupt the lymphatic system. Fluid that once drained to now damaged/absent nodes can no longer filter properly.

Let's say a woman had cancer in her left chest...and I say "chest" because using the proper terminology could draw unwanted attention to the blog...if you get the idea. Anyway, a lumpectomy may be performed, followed by radiation of the left chest. Sometimes the nodes under the left under arm and upper left chest are radiated and destroyed. If a mastectomy is performed on the left chest, lymph nodes located in the left underarm and upper chest are often removed. Again, fluid that once filtered through those nodes cannot be properly drained. This leads to a back up of fluid in the left arm and or left chest/back. Likewise, if the nodes at the right under arm are damaged/removed, there will be swelling in the right arm/chest/back. The same holds true for the lower extremities. Only their nodes are found around the "thigh", again, for the sake of unwanted visitors! There is no cure for lymphedema at this time. That is where I come into play.

When I worked in the clinic, I performed manual lymphatic drainage (MLD). This is a type of massage that is designed to increase the movement of lymph and interstitial fluid. It was my job to help redirect fluid from "clogged" areas to "unclogged" areas. Once finished with massage, the patient's affected limb would be wrapped in compression bandages. The patient would leave the office with ace type wraps in place, although they are NOT ace bandages. BIG difference between the wraps I use and ace wraps but that is another story... They wear the bandages all day and all night. They do exercises in them. They cook in them. Work in them...get the idea? They come back the next day and I remove the bandages and let the patient wash up before I start the process over. Massage. Wrap. Exercise. Leave. Come back. Massage. Wrap... This goes on for 5 days a week, an hour and a half at at time, for 2 weeks or more until I see a plateau in the size of the limb. All the while, the patient is being educated on how to wrap their own arm, exercise, and how to do self massage. They are fitted for a compression sleeve which, ideally, they wear every single day for the rest of their lives. I also get compression sleeves for them to wear at night because the day sleeves are not intended for that purpose. And if the patient is REALLY lucky, they have great insurance that covers the compression pump I told you about a few posts ago! Once the arm/leg/head/neck/trunk is as small as I think I can get it and they and/or their caregiver are independent with their home program for maintenance, they are discharged.

Whew! Was that about as clear as muddy water??? Probably so! I think it is a decent overview of lymphedema and what I do/did in treatment. There is nothing more exciting for me to see in the clinic than a large arm come in the door on the first day of therapy and leave a LOT smaller when I am done with them! For the most part, my patients are wonderful to work with. Needless to say, I spend a lot of very personal time with them and get to know each one on a very deep level. Right up my ally!

Let me know what I need to clarify. I am terrible at proofreading my posts, as you know so I am sure there are tons of runons and what not. I wanted to get this out today especially for Jill. She was supposed to have her baby shower but the weather did not cooperate. I am SURE this post will make up for it!!! :) Or not. Thursday will make up for it!

And just incase I could get in trouble for this post or something...
Most of this information is from my training manual from Klose Training and Consulting, LLC, 2004. The amazing Guenter Klose taught me everything I know!

So long

Farewell. It's been real nice to know you!

That's right folks! She's on a shelf. Packed away. Not to be used again anytime soon!!!Technically, my last day to "sit a spell" with Medela was January 13th. 2 weeks ago. I guess my previous experiences left me scarred so I was dreading the weaning process. But, I am happy to say it was pretty easy, both physically and emotionally. I just knew it would be in tears when I was done, buuuuut, not so much! I saw how easy it was to pour whole milk in his bottle and kinda of liked it! Actually, I have to admit I am having a hard time making myself use the remaining 10ish bags still left in the freezer. It just takes so long to thaw... And to think I used to panic over a few spilled ounces! My, how times have changed!

Mondays with Crosby

At 11:24 am, Crosby Fox turned 1 year and 4 weeks old!!! I cannot believe he is almost 13 months old. I cannot believe we are nearing the end of January. Was it not JUST his birthday? We haven't even taken him for his 1 year picture! Seriously, this "time flying by" business is ridiculous...

We had an unofficial weigh in on the BIG dog scale today. Someone has gotten too big for the puppy scale. Of course this makes me sad. But I won't dwell on that. I knew he seemed bigger and he is. 23.6 pounds to be exact. With shoes, clothes and a diaper. He is still on all fours at this point. He does the crazy crawl with one leg cocked out to the side, with that foot on the floor. Both hands and the other leg are doing the typical crawl. Then he does the crawling on hands and both feet. No knees involved with this one. He does it a lot, actually. He stands from 5-10 seconds and then slowly lowers himself to the ground. Usually into a full squat. But, no steps at this point. And as you can probably guess, I am absolutely fine with that. I'll keep my baby a baby as long as possible. How can he be a toddler if he doesn't toddle? That is what I thought!!!

So this week I am going for less is more. I have been putting up waaaaayyyyy to many pictures and I realize this. It is just so hard to narrow them down because they are all so cute. And, no, I am in no way biased. But maybe my lack of pictures really has something to do with the fact that I didn't spend as much time with the ole Canon as usual. Or maybe it was 2 days of orientation at Stallworth and one lymphedema patient that took up lots of my Crosby time. :(
Can someone tell me why I thought I wanted to work a day or 2 here and there??? And while I am thinking about it, yes Jill, I will do a lymphedema post just for you!! :)

What is wrong with this picture???

Yep. He decided to get in the bathtub with his clothes on the other night. Technically, he did not intend to go head first into the tub. But he did! After the initial shock, he found it pretty amusing. Where was the parent, you ask? I was 2 feet away, with my back turned away from him, preparing a shirt to soak in the sink. Clearly it was not as important as the safety of my child. But I didn't think he was capable. Seeing how he absolutely loves to climb, I am not sure why I doubted his abilities. Fortunately the water was just running and none was standing in the tub. Still, not one of my greatest parenting moments...

The little one has a new "trick". He gives the sweetest, slobbery, open-mouthed kisses on command! I request them often. I am pretty sure I have seen him rolling his eyes at me on multiple occasions. ;) Those eyes...they are getting him into trouble these days. He is quite fond batting those big eyes at me while engaging in forbidden activity! Like picking up the dog bowls. Or throwing his food/cup on the floor. Or grabbing the mirror that he has repeatedly been told NOT to touch. See...

I mean, would you look at his left eyebrow??? All raised, as if he is saying, "What? What are you going to do???"Ahhhhh... And then I caught him on video, reaching for that same mirror...

Oh, yes! I even caught a little of the attitude he likes to show when he is having his diaper changed. I think somebody might be getting a little too big for his britches, if you know what I mean!!! What a stinker!!! But he is so cute while being a stinker that I have a hard time not smiling! I can already tell it is going to be hard to discipline this child of mine. Mainly because his adorable face gets me every time!! Well, most of the time it does! Look how sweet those devious eyes can look by that same mirror...

Chubs...

How can I not give in?

Mondays with Crosby

At 11:24 am, Crosby Fox turned 1 year and 3 weeks old!!! I am pretty sure I was posting pictures of the little tike sitting in snow last Monday. Here we are playing at the park today in 60 degree weather!!! Crazy. Let me be the first to say I will take as many 60 degree days as I can get. This little teaser just reminds me that I very much dislike winter and prefer all other seasons! I would be fine to permanently omit winter in Tennessee. We could just keep the cold weather and snow out West. You know, where you can actually do something with snow. Like ski! No skiing here in Middle Tennessee that I'm aware of. But there are parks. LOTS of parks. Crosby and I had a good ole time at a park today.

He was hesitant at first, my tactile defensive little boy...

So we moved to the swings...

He was confused... Are Margaret and John Christopher connected now???

They thought sharing the swing was pretty fun. Something tells me that will change in a few short years...

I put him back on the ground and he started to venture out a bit, crawling through the mulch and onto a rubbery surface. His hands needed a break so he stood at Margaret's stroller a while, trying to push it like a truck. Funny how it looks like he's got the "red eye" going on. But it's not red eye at all. It it the reflection of my bright pink jacket in his eyes. And yes, in his snotty nose. A stinkin' cute snotty nose I might add...

Showin' of his 5 teef. Maybe 4 1/2 but close enough...

I don't know. Just cute...

Then he really got wild. He kept climbing over this small, wooden ledge into a pile of leaves and mud. He got SOO mad when I tried to bring him closer to where I was standing.

That is because he was determined...

His eyes were fixed on a hill that he needed to climb...

And climb he did!!!

I mean booked it up the hill and started heading down the other side...

Yea, it looks like he is going the be rolling down that hill any second. Which caused another mother standing at the bottom of the hill to flip out because a baby was about to take a tumble. Oh, but she didn't know what a genius this baby is...

He just turned around and started going down backwards, just like he was going down stairs...

Yep, that is my little problem solver. Needless to say, she was quite impressed with his mad hill climbing skills...

I was proud! He was proud!

We headed back to the swings for one last hoo rah...

Happy as a lark...

And no, that is not snot on his cheek and chin. Just a little water from his sippy cup that managed to miss his mouth!

I didn't say anything about what was under his nose... ;) Maybe it will go away one of these years...

And he ends his trip to the park with a wink for the camera!!!

Fun times were had by all. I think he is over his tactile issues now so the stains on his clothes are at least good for something! And I am hoping the polish I got for his shoes will take care of the damage done there!

So I have confused a few folks and need to clarify. I have done a little bit of work over the past year. I teach patients with lymphedema how to use this. I worked for this company a little before going on bed rest and started back up in February or March. I get an email asking if I can see a patient. If I do, great. If I don't, great. I probably average 1 or 2 patients a month. I love working with lymphedema patients so it is the perfect setup for me. It only takes a few hours, including travel time, and I set my schedule.

I am going through orientation tomorrow and Thursday to get back on the PRN list where I did full time PRN work before. I have mixed feelings about actually working a full day like I would have to do in inpatient rehab. But, I figure a few days a month could be good for me. And it will help cover the cost of keeping my license active. Crosby is my number one priority. If it gets to be stressful, I won't do it. I'll just see how it goes!

Seeing how I have to get up at the crack dawn, I should get in bed. Crosby has been spoiling me by waking up at 8:30... 8:45...even 9! 6:30 is going to be a rude awakening...

Prayer Request

My sister-in-law, Kerri, has a friend named Jennifer who gave birth to twin girls earlier in the week. They were born around 35 weeks and both weighed near 4 1/2 pounds. I don't know many details to share at this point other than they are having complications. Would you please say a prayer for this sweet family...Jennifer, Joe (husband), Mallory & Charley (big sister and big brother) and the twins, Hadley and Sloan. I know they would appreciate it...

Mondays with Crosby

At 11:24 am, Crosby Fox turned 1 year and 2 weeks old!!! I am just going with it for now... We had a great week. Having his party behind us made life seem a little more settled. A little less hectic. Now he is just learning how to use his new toys. Or how NOT to use his toys!!! The pictures speak for themselves but I will help...

"Mom, I'm stuck!"
"What if I lift my right leg?""Or what if I try to sit up and pull with my left arm?"

"No. Can I pick up both feet and get out of this jam??"

"Have I tried the right leg?"

"I think I am going to be here forever..."

"I think I figured it out!!!"

"I am SOOOO close!!!"

"What is the deal with my right leg???"

"Man that was tough."

I promise that wasn't abusive. He did want my help but I let him figure it out. We are talking all of 2 minutes MAX. He loves his Tonka truck. It vibrates when you turn the key like the engine is running. The blinker ticks. There is a gear shift and a horn. He is ALL ABOUT trucks, this boy.

But according to Dr. P, he has a condition. It is called the "prince syndrome." Never heard of it? I kind of new the diagnosis was coming but Blake was totally surprised. "You mean, he should be able to hold his own bottle???" Yea, I knew that bit of information but I prefer to hold it for him. My tiny baby... So we have been on a mission since his appointment. Crosby is being
dethroned. He is learning to hold his own bottle. And he is drinking from a sippy cup a whole lot more than he was last week. He was very unhappy about this the first 2 days. He cried and cried when I didn't hold the bottle for him. Hurt my heart... Now he is holding it like a champ. I am thinking we will be bottle free in the near future! Our little prince is adjusting very well! See...

Now Blake constantly refers to him as Prince. Great...

We went to Margaret's birthday party on Saturday and Crosby had more sugary sweets!!!

And Margaret was kind enough to give Crosby his first pile of Cheerios. I know, where have we been? I just kept forgetting to buy them!

Crosby had his second experience with snow!! It was much more exciting than the first...

The excitement faded fast...

Yesterday we took him out for a ride in his new wagon. Yes, it was frigid. But he LOVED it!! And Nugget enjoyed going on a walk too!

And this is what I came home to find at the end of this Monday with Crosby!!!!!

You leave the child with Pops and this is what he lets him do!!! Nearly every book was pulled of the shelf and strewn about!!! It looks about how I felt earlier this evening when I realized I locked my keys in my car. And my cell phone was dead. And I was clear across Nashville. And I still had one more patient to see! At least Crosby enjoyed himself. And it sure made me smile when I walked in the room!! :)