Living With Lymphoedema
by Helen F. McKay
Lymphoedema – It is not a nice complaint. It’s a shock, at first, to hear this diagnosis – but it isn’t the end of the world: it’s just another of life’s challenges. It’s important that, following diagnosis, you come to terms with, and accept the challenges, that lymphoedema presents.
Many people never have the diagnosis made and just struggle onwards through life, without any medical assistance. I see them, frequently, struggling to get around, with swollen limbs that blind Freddy, could recognise, as Lymphoedema.
I believe that when some doctors are confronted with a chronic disease – such as lymphoedema – they often react negatively, because they feel helpless: unable to prescribe a cure for it. Many do not want to waste their valuable time, with a problem that they perceive, cannot be solved. Often, they tend to forget about its ongoing management, for a patient’s better lifestyle.
Over the years, since the initial diagnosis, I have had to print out many pages of information, available on official Internet sites, to hand to a number of the doctors treating me, so they cannot say, “they didn’t know”.
A recent case in particular, was prior to surgery two years ago, when I gave the information, about the dangers of using venous pumps, on lymphoedema patients, during surgery, to the surgeon, and other key people, at the hospital, where my operation was scheduled. No one, appeared to know this information, and all were thankful, I had taken the time to download several pages about it and inform them. The information is all out there, but isn’t usually accessed, by those who need to know.
I only wish my surgeon, in 1992, had known about this. Use of venous pumps back then, escalated my lymphoedema 100%. Resulting from this use of vascular pumps on my legs, I developed a pulmonary thrombosis that travelled from my leg and became an embolus on my lung. It was a serious situation and I almost died, as the large blood clot passed through my heart. Fortunately, my friend, Kate – a visitor – sought immediate attention for me and oxygen was used, to save my life.
When the lymph system is not functioning, it is necessary to give it some help along. Physiotherapists can help teach you the special massage technique, CPT. For assistance in learning this special massage technique, get a doctor to refer you to a physiotherapist, who works with lymphoedema.
These very professional people can teach you the complex massage therapy, which you and a partner can do, to relieve the congestion of the lymph nodes. You may find in doing the massage together,with your husband,it helps in the romance department too!
I have lymphoedema, bilaterally, in legs, arms and abdomen. My lymph system seems to have collapsed and it has to be stimulated to work. Although it’s very inconvenient – believe me – it’s not the worst thing that can happen to you! There are many worse challenges you can face!
You may not be able to cure lymphoedema; but it can be managed – to allow you to live a good life. I do. I’ve found that it’s a matter of trial and error, persistence, and acceptance of the challenges Lymphoedema presents.
NEVER be persuaded to take diuretics to eliminate lymph fluid, as that’s like trying to drive a dry pump – it causes only damage to the pump and makes it fail. Using diuretics for lymphoedema will only do damage to your kidneys.
The lymph system works differently, from the vascular system, as the lymph fluid is channelled just below the skin’s surface, and flows through the capillaries to the vascular system. The lymph system clears the body’s cells and pumps the toxins and fluid, back into the vascular system, which then eliminates it through the liver, kidneys and bladder, as urine. Drugs do not help this process.
Special massage – the light brushing of the skin’s surface up to the armpits, from where the lymph is passed back into the venous system – is the way to help eliminate excess fluid. It is unlike any other therapeutic massage, which stimulates muscles; but is a very gentle stroking of the lymph nodes and skin, to direct the flow of lymph fluid through the lymph nodes, and up from the armpits to the capillaries around the clavicle (collarbone). The lymph fluid passes through these capillaries to the veins, which then take it to the liver and kidneys, where it is expelled from the body.
To do this, you must start at the armpits, and gradually, clear the fluid upwards, as you proceed down the body. This eliminates problems with backup of lymph fluid. Keep clearing back to the armpits, from the top downwards and outwards and from the head and neck down.
If you have tried the compression garments, but found them unsuccessful, I have a question: Were they specially made for your measurements, or bought off the shelf? There is a world of difference! A physiotherapist can measure your legs and order properly fitted custom made garments, designed for your particular needs. To hold them in place, you may need to use body glue, which is water-soluble.
I wear Jobst, grade 4, compression garments, to control the swelling in my legs and I use body glue, applied correctly, to hold them up. I do the special massage – to move the lymph fluid round my body – surface only, like brushing – but never, deep tissue massage. Despite this, I manage to live a very interesting life, as an author, workshop facilitator, public speaker, storyteller, and ceramic artist, and find that I can do most things, “in moderation”. If I try to outdo my energy resources, I’m swiftly made to realise that I need to take things a bit easier.
I drive a car, travel in trains and buses – but have some restrictions on flying – due to inactivity during the flight, plus the lowered oxygen levels in the cabins of many planes. This, particularly, affects people with lymphedema, and can cause life-threatening blood clots and heart attacks. If you fly in airplanes, get up every 20 minutes and walk around the plane. Try not to endure long airplane journeys, because of the risk of blood clots.
Swimming, in a heated pool, is a useful exercise, and I recommend it. Never! Go into a pool where the temperature is above 34*C! I go to a hydrotherapy pool, here in my hometown and I use a foam floatie straw to support me, as I pedal my way around the deeper part of the pool, exercising my legs. The water pressure helps to circulate the lymph and it drains better, through the lymph system, under water pressure.
This helps eliminate a lot of fluid from my body. I always have an urgent need to use the toilet, immediately I vacate the pool and then, pass a lot of urine. The pressure, of the water, helps to gently massage the legs and body and eliminates the waste.
Make sure the water is between 30 and 34 degrees Celcius, (you may need to convert this to Fahrenheit). Hot water will make your condition worse, so avoid: hot showers, saunas, spa pools, etc. and use a pool thermometer, to measure the water temperature. There are some special exercises for use in the pool, to help eliminate lymph fluid that a physiotherapist can help you with.
Try to avoid getting overheated. In summer, during the day, I wear shorts or skirts, which keep my legs cool. I sleep cool at night, taking care not to get overheated. Sleeping at temperatures that are too hot, can affect lymphoedema, as well as, your immune system, and synthetic quilts are the worst offenders. Cotton is absorbent and breathes – so, go natural, with cotton and lightweight wool.
Elevating the affected limb(s) is also helpful, so I elevate my bed at night, with a foam wedge. You can either elevate the bed on a couple of bricks, or, as I do, use a wedge shaped foam pillow, 20 cms – or 8 inches – higher at the high end. I cover my wedge with a thick towel, which I launder, frequently, as the lymph is inclined to leak through the skin at night. I have found that elevating my legs, to a higher level than my hips, and resting my arms on a pillow at night, helps to get rid of fluid, which has built up during the day. It means a few extra trips to the toilet, but the relief is worth it.
Whenever I’m sitting, in my armchair, I have my legs elevated, on an ottoman, covered by a sheepskin fleece, which is washed frequently. This elevation assists in clearing lymph from the lower extremities. Take excellent care of your skin, to avoid dryness. Moisturise it, with a good skin cream and avoid cuts, splits, and abrasions on your heels. Massage in heel balm, to prevent splits in your heels and consult a podiatrist regularly. Try to avoid scratches and cuts, when gardening, and treat bites and stings from insects, instantly, to prevent infection, which can complicate your lymphoedema. Cellulitis can become extremely dangerous.
It is important that you make the effort to do some sort of daily exercise, to keep your vascular system in good shape. A short brisk walk, each day, in comfortable walking shoes, helps move the lymph fluid round. Do not sit, or stand in one place, for long periods of time. That can cause other unpleasant and dangerous problems, such as thrombosis. Standing still, for long hours in a job, is not advised, so you may wish to swap to a desk job. Even then, you should get up and walk around frequently, to keep your circulation active.
A vascular specialist should be able to put you in touch with physiotherapists, who help teach you the massage techniques and fit compression garments. The vascular specialist will be familiar with new medications (bioflavonoid, etc), specialist services, and research facilities, for this affliction, which could be of use to you. Use your computer to do the searches. Type in: Lymphoedema, or lymphedema, and trawl through the responses on official sites.
My lymphoedema specialist, suggested that I take some bioflavonoid tablets, sold here under the label, Lymphodran. This Lymphodran helps eliminate both urine and faeces from the body. I find it helps.
Do read through the information, available, in the links on our website. There is much valuable information there, to help you overcome the helplessness, you feel at first, when diagnosed with severe lymphoedema. It’s a limiting disease and gets you down occasionally. I know about this – I’ve been there.
In Australia, we have a very good research centre, specialising in the treatment of lymphoedema – the Flinders Medical Centre – in Adelaide, South Australia. Many people find their way to it, from all around the world. You can access it through the website links, all of which are helpful. Try either: www.lymphoedemasupport.com/ or: www.platywebs.com.au/lymphoedema I found a great US site with valuable information. I recommend it. It is “Lymphedema People” http://www.lymphedemapeople.comKeep looking for information about this disease, so, as an informed person, you can help avoid some of the appalling mistakes, made by uninformed medical practitioners.
I think a positive attitude, and a happy state of mind, is essential to dealing with this life challenge. In this regard, my book: “Links to Your Happiness”, about a helpful strategy: is now available, at www.happinesslinks.com as are some of my beautifully covered Happy Books.
Use a notebook as a Happy Book, covered with a pretty textured cover. (The cover is part of the strategy). In this Happy book, you regularly, write the down things that make you happy. They don’t need to be big, over the top things; just simple things, such as, these excerpts from my Happy Book:
Seeing the dewdrops on a spider web, after a gentle rain.
Following a giant dragonfly, as it darts hither and yon, around the yard
Finishing the dishes, the dusting – or the ironing– etc. and sitting down, to enjoy a cuppa.
Talking on the phone to a special friend, or family member.
Getting a wonderful newsy letter from a friend; not a bill.
Relaxing and listening to beautiful music.
Breathing fresh country air, far from the city.
Travelling along the waterside, with Bouzouki music on the stereo
Hanging in a tree, at my home, we have a seed ring, to which, four species of brilliantly coloured parrots, visit several times, during the day. They frequently feature in my Happy Book, as their antics are so funny, their songs – so beautiful, and watching them, you can’t fail to be happy.
When you are having a “Blue Day”, look back through your Happy Book, to find the things that make you happy. Choose something to do, from the list of your happy experiences, to change your mood. In no time, using this strategy, you will experience fewer Blue days, and enjoy a happier, more contented life.
I write in my Happy Book, each day, acknowledging all the good things that happen in my life. At night, before I go to sleep, I give thanks for the happy experiences, I’ve enjoyed, during that day. It is amazing, how that exercise, helps you gain a happy outlook and a positive focus. Using your Happy Book will also provide surprising insights, to your inner self.
Lymphoedema can be a problem – but it doesn’t have to screw up your life. Be smart! Become innovative, and learn how to how to live happily, with this challenge.
Be Happy!
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