Thursday, November 24, 2016

Real Talk: Lymphedema

What is lymphedema? 

Lymphedema is medical condition that is incurable, but can be treated. When lymphedema is mentioned, most people equate it with cancer, which is correct, as it happens to people with cancer a lot, some symptoms even beginning before they have surgery (which I learned from actress Kathy Bates when she spoke on the show The Doctors). However, lymphedema can also occur without someone having cancer; through injuries, trauma, or congenital defects that exist in the lymphatic system.

 From information I gleaned from LTA, when the problem gets bad enough the lymph fluid will be more than the system can move, and swelling will begin because of the build up of protein-rich fluid collecting in the tissue in the affected area. The site goes on to explain that there are two types of lymphedema: primary and secondary. Primary is the kind that is present from birth, or it can develop when puberty begins, but it can also wait until adulthood to present. These are called congenital, praecox, and tarda respectively. Secondary lymphedema occurs when surgery, radiation, cancer treatments, trauma, or injuries that either damage or completely remove lymph nodes or vessels.

It is important to seek treatment for lymphedema immediately, from a doctor or physical therapist trained in this area. Sadly, I am learning on a personal level that not a lot of people in the medical field know much about lymphedema, save for those that treat cancer patients, and are not really capable of diagnosing it. If it isn't treated, is poorly treated, or is treated incorrectly under the assumption that it is something else, it can lead to infections, dis-figuration, pain, and disability. According to the LTA site, it can also prove fatal in the long term.

How do doctors or physical therapists treat lymphedema? 

The answer is Complete De-congestive Therapy, or CDT, which is the standard care for the condition. This treatment, according to BreastCancer.org, started in Europe and Australia, but is now becoming used more and more here in the US. While the BreastCancer.org site states that there are two phases to treatment; Reductive and Maintenance, the LTA site says they are called Acute and Ongoing (so you will probably see all of those terms used) and expands on there being four elements to treatment - manual lymph drainage, compression therapy, lymph drainage exercises, and skin care. Manual lymph drainage is fairly self-explanatory; the use of the hands to massage the affected area to promote the draining of the lymph fluid that has pooled in the affected area. Compression therapy is a series of wraps, usually three or four layers, but there can be more, to help 'squeeze' the fluid up and away from the affected area and send it on to where it would be heading in a healthy, non-lymphedema body. Lymph drainage exercises are exercises the patient is taught to help keep the lymph fluid on the move, and skin care is necessary to make certain the area doesn't get dry, cracked, or injured through the use of lotions, keeping the area protected from cuts and bruises, and keeping the area dry (aside from the use of lotions), especially when wraps are being used. Never get the compression tools wet while wearing them! When this treatment is successful, and the affected area's swelling is under control, one would have to obtain permanent compression garments, and depending on the level of severity of the lymphedema, may have to wear them daily, only removing them for showers...or may only have to wear them during daily activities such as work, the gym, and so on. Some may even only have to, at least eventually, wear them a few hours out of the day, or even only have to wear them a few days a week. They still have to be cautious, however, because neglect could cause them to have to return to the therapist or doctor to begin the treatments over again.

Now, there are those, as mentioned previously, that go a while without knowing they have lymphedema, or may never even know that's what it is. This is where my reason for writing this post comes in. When I was in high school, I fell over something. While it wasn't too painful, mostly just itchy, I had gained a scrap on my lower left leg that became infected. I got something called impetigo. I had it explained to me then as an infection in the blood, which got in through the scrap, probably from the older steamer trunk of my great-grandmother's I had tripped over in the dark. Being the stubborn teen I was, I figured a bandage and some Neosporin, and it would go away like anything else...as least until the itching became unbearable and I showed it to my mother, who discovered red lines extending partially up my calf from the scrap. My family doctor was the one that filled us in on it being impetigo and gave me an ointment and some antibiotic pills to take. It cleared up, of course, and I forgot about it, aside from a slightly scarred spot on my leg.

I still cannot say with 100% certainty that this was when my lymphedema issues began, but it seems possible, now. I had no further issues with my leg until around 2006, six years after I got out of high school. I began to notice my feet and legs, though mostly just my feet, would swell and stay that way for extended periods of time. I had to start wearing men's sandals in the summer and around my apartment because my sneakers were uncomfortable. In colder months, I just had to tie them loosely and wear longer pants to cover up just how swollen they would get. Then, one day I was at work, or rather on a break eating some supper, and I felt a little off. By the time I got back into work from said break, I was alternating between hot and cold and felt dizzy. My manager stated that I looked pale, and I felt like I was going to pass out. She had me lie down and my father was called. He came to get me and had to help me out of the building, taking me home so he could go get my mother to go pick up my car and bring it to my apartment. My boyfriend then arrived some time later and told my parents he would stay the night, which he did, in case I needed someone. Later that night, I woke up feeling as if there were dozens of knives being stabbed into my left calf. When he looked at it, it was very red and swollen, and had the beginning of sores. At that time, he had taken me to the local ER, and they decided it was a bite of some kind, and sent me home with a prescription he had to go fill for me. Over that next week, I couldn't go to work, and I lay in bed in pain, waking to eat a little and take medicine. When I recovered, I went back to work and, aside from still having the swelling in both lower legs and feet, my life went back to normal.

Fast forward to 2012-13 (I get a bit blurry on the exact year now) and everything is still swollen, but manageable. It's just a common thing in my life, as I do have other relatives who have swollen legs and feet. Water gain, I was always told. I acted on the assumption that was all I had. Then, however, it happened again. I woke up one morning feeling absolutely freezing, despite the room not being cold. In moments, I was burning up, and then freezing again. I went to another ER, as I lived in another town now. I still live there, but I digress. The doctor there told me it was most likely a bladder infection that was making me feel ill, and sent me home with a prescription. I went to sleep once I got home, and again...a few hours later, woke up with that familiar knife-stabbing pain in my left leg. This time, it was more red, swollen, and actually had places forming that looked almost blister-like. Back to the ER, where they looked it over and said it was cellulitis. I was given an IV and kept there until the bag emptied, then sent back home. I was told at first to put a hot compress on it and to keep it elevated, but that didn't work...and then I was told to use a cold compress, never a hot one. It took a long time, and barely being able to stand because I felt like I had pins and needles stabbed into me every time I moved. I had to have help getting up and moving about, at least until everything finally got to some semblance of normalcy.

That didn't last, however. From that point on, I began years of re-occurrences, and more trips to the ER to be told it was cellulitis. After a while, I felt it couldn't be that, or at least, not JUST that, and I became discouraged and made my error; I stopped seeking help. I began to just lie in bed a lot, and when it wasn't as painful, I worked. It was always at the very least an ache, and standing for long periods was difficult. My work required standing and moving around constantly, and in the end I had a bit of a meltdown at work that resulted in a panic attack (which was due to things outside of just my leg, but that is another matter entirely). I went home, with help, refusing an ambulance ride someone had called in. I didn't go to the ER, and I returned to work the next week, and realized I just couldn't keep up anymore. I put in a resignation and stayed at home. I should mention that during all of this time, I would have sores on my legs, which the ER had said (before I stopped going) were just part of the cellulitis, and I had looked up cellulitis and seen pictures online that supported that. I was convinced that's all I had, even if I couldn't explain why that caused my right leg and foot to be swollen as well.

At the beginning of 2016, I had another onset of cellulitis, this time so severe that it was actually weeping clear fluid that soaked through my sock and pant leg, and I was back to the ER for the first time in a while. That visit led to a night and day checked into the hospital with IV bags constantly being changed out, and then I went back home. I broke down sometime after that and went to a doctor's office. After sitting in the room waiting on the doctor for a few moments, she came in...and one look at my leg and some light touches told her what she needed to know.

"This is lymphedema."

I had no idea what that meant, but the 'lymph' part set off bells in my head, equating it with cancer. Obviously, that worried me. I have a family history of cancer. She quelled that thought and explained to me that I needed to see a specialist for this, starting with wound care and then an actual therapist the specialized in lymphedema treatments. She made some calls, and found someone she knew of, named Morgan, and told me to contact one of the places she worked out of to set up an appointment. After I left there, I felt some relief, but then came a bit of accidental placement with one of Morgan's coworkers in a building in another town that was strictly for cancer patients. Once that was straightened out, I was sent to a hospital in my hometown, and began to see the doctor in charge of the wound care center. I had to go to them first to heal up at least the majority of the open, still slightly weeping sores. This was cellulitis, but it wasn't being healed up because of the lymphedema. There was too much fluid pooled in my lower legs. After several weeks, which felt like more months than it probably was, and a lot of medicated wraps and progression photos (Yes, I have photos...but trust me, you don't want to see them.) I was finally able to start seeing Morgan. She started my treatment of manual lymph drainage and compression wraps. She saw me two times a week for most of this year, and we've gone down to once a week now. In the beginning, I didn't have to worry with doing the wraps at home, since she saw me so often, but now when they loosen between visits, they can be re-wrapped until I see her again. Not quite sure what I'd do without her, really.

Unfortunately, the wound problem has never fully gone away, and it is currently back with a vengeance. The wound care doctor saw me again, and we are now on a second type of medicated wrappings on my left leg, while my right remains in the regular compression wraps. My right leg is pretty much ready to be placed in a compression garment that I will wear for the rest of my life, but my left leg is still a swollen, wounded work in progress. We have not been able to figure out as of yet what causes the wounds to continue to come back despite all things tried, and I will not be able to use a compression garment on that leg, or stop coming in for treatments weekly until that can finally be put to an end. I have a lifelong road ahead of me.

I cannot work, and I walk with a cane to support my left leg a little more, and I take some medication for the pain...as well as some antibiotics to try and help facilitate the wound care, for now. There may be a day where I can work again, but it may be far off, as I have to wear 'air boots', those things people normally wear over a cast, and no job I am qualified for would be safe to do with open toed shoes.

This was the longest post I think I've ever made on a blog to date, but I felt like it was time to ramble this out. It's now a little after 7:30am where I live, but I can honestly say I feel good to have gotten this out.

I am going to place some links below that go into more information on lymphedema, in hopes that people will educate themselves. This is, sadly, something that affects an estimated 3 to 5 million men, women, and children in just the US alone, and as I've explained, not just those who have gone through cancer treatments. It is also one of the least mentioned or funded through events, nonprofits, and the like. It isn't, as some can crudely put it, a 'glamorous' disease.

I can certainly attest to the lack of glamour.

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For more information:

  • The Lymphatic Education and Research Network
  • The Lymphedema Treatment Act
    • Help those of us affected by lymphedema convince Congress to pass a bill that allows for us to have insurance coverage for our medically necessary compression garments, which can go up to over $100 per garment, and we have to have a few pairs.You can also sign up to be part of your state's team to work on convincing your state's government officials to sign on for helping with this bill.
 Suppliers of Compression Garments & Other Supplies:
For those that are curious about what, exactly, lymphedema can look like in various stages of severity, click below. There ARE some NSFW (or the squeamish) images, so you've been warned.

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