Had my 6 month checkup with my lymphedema doctor on Tuesday and it went better than I had anticipated. First of all, for those who are unaware of what lymphedema is, I'll explain in my own words.
There are two types of lymphedema: Primary and Secondary. Secondary is when something injures your lymphatic system. It can happen if you have lymph nodes removed due to cancer for instance. Without the correct amount of lymph nodes, the fluid that used to be easily moved throughout your body now builds up in the area/limb where the lymph nodes were removed. I have Primary lymphedema. I was born with a screwed up lymphatic system (missing and impaired lymph vessels) and the onset of my fluid buildup was when I reached puberty. No one knows the cause of why the lymphatic system is screwed up with primary lymphedema, it just is. I have it in my lower extremities: both legs from my hips to my toes. Fluid runs down your body with toxins and is supposed to be "flushed" clean before traveling back up. This is where those lymph nodes come in handy. Because of my lymphedema, I don't have enough lymph nodes to get all the fluid back up, so it just stays in my legs and I get swelling. Sometimes I even get an achy pain in my legs due to the toxins that are in that fluid.
There are different stages of lymphedema.
- There is visible swelling with protein-rich lymph.
- This swelling can be temporarily reduced by elevation of the limb; however, the swelling soon returns when the limb is returned to a normal position.
- The swollen tissues are soft and pitting edema is present.
- Elevation of the limb will not reduce the swelling.
- The tissues become increasingly firm due to fibrosis. Fibrosis is the formation of fine scar-like structures within the tissues that cause them to harden.
- Pressure against the limb produces only a slight indentation or no indentation at all.
- The tissue changes at this stage increase the risks of even greater swelling, fibrosis, infections, and skin problems.
- Stage II lymphedema can usually be improved with intense treatment.
- The tissues become increasingly fibrotic (hardened). Pressure does not produce any pitting.
- Normal elasticity is lost and the skin hangs in folds.
- The skin may change color.
- Papillomas, which are small solid benign tumors that project above the surrounding tissue, may develop.
- Hyperkeratosis, which is an increase in the thickness of the outer layer of the skin, can develop.
- These changes in the texture of the skin are disfiguring and can limit mobility.
- Infections become more common because of increased risks of breaks in the skin. These infections include fungal infections and open wounds that form within the folds of skin.
I have Stage I lymphedema. Even though it took doctors about 16 years to diagnose me, my swelling has stayed pretty consistent and I have not progressed to stage II - thank God!
People with lymphedema are more susceptible to infections such as cellulitis. This can be a serious infection that can cause hospitalization. Anything can cause a cellulitis infection, such as a bug bite, a nick from a razor, a scrape or cut, even an ingrown hair, or an ingrown nail. Taking care of your skin is so important. Most of the time people with lymphedema are covered up with compression garments. These are those very tight stockings, thigh highs, or knee highs, that you have to get on with donning gloves (rubber gloves).
OK, back to my story.
So, I went to my lymphedema appointment I made when I was still working. I made the appointment so I would go before work. My appointment was for 8:15 am. I never thought to change the appointment to a later time once I went out of work on disability, and when I did finally remember, it was too late to change it. Oh well. It was hard to get going that early, but I managed it. I know 8:15 is not that early, but when you're pregnant and were up at 3 am, for God knows what reason, and you couldn't get back to sleep, an 8:15 am appointment is torture! I was 15 minutes late. Not too bad.
Right away I was greeted with "Oh my God!" and "Congratulations!" from all the ladies in the office. I get weighed, normally at the end of my appointment, but they were quick to get me on the scale that day. UGH! Now, I weigh myself every morning. My scale is accurate with a weight of not wearing clothes, and having just woke up with no food in my stomach. I don't mind that weight too much. But get me on the scale at my appointment with my boots and clothes, and some food in my stomach, and I'm quick to defend the weight I was earlier in the morning. But, of course, they stick with what they see on their scale. It's a conspiracy!
Once I got into a room to be measured (they measure different points in both legs to make sure swelling isn't getting worse) I get asked by my lymphedema therapist if I'm wearing my garments. I can't lie about this one so I say no. I told her that almost the entire first trimester I wasn't wearing them because I was so sick, but I was hardly ever on my feet because I wasn't working and I was on the couch most of the time. I did try a couple of times during this second trimester to wear them, but they were so hard to get on and I felt way too constricted. I asked if I could get knee highs instead of the thigh highs I typically wear. Better to wear something than nothing. She agreed and ordered me a couple of pairs. Now I just have to make sure I'm not lazy about wearing the knee highs once I get them. Luckily my legs have not gotten much more swollen than 6 months ago. Just a slight increase and that is most likely due to the weight I've gained with this pregnancy. So now I don't feel too bad about not wearing my garments!
Because primary lymphedema is hereditary (although I don't know who has had it in my family) I've done some research about those women out there who have lymphedema and are or were pregnant. Not much to be found, just little things that don't really give too much information. There is this one article on the website LymphNotes that explains a little bit of what needs to be done when you are pregnant and have lymphedema. For the most part, I should be wearing my compression garments everyday, keeping my weight under control throughout the pregnancy, and doing manual lymph drainage everyday. Duh. Things I already knew.
Now, since lymphedema is a hereditary disease, will I pass this on to Lily? I have done some research on this as well. What I've found was that I have a 50% chance of passing this gene on to our child. Hopefully lymphedema stops with me, but anything is possible. I've read a lot of stories of women with primary lymphedema who have children and none of them have developed it. So there is hope for our little one.
You can read more about living with lymphedema on my other blog: Lymph Girl
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