|This article is contributed by Anthony Ortlepp, a 54 year old male whose Lymphoedema over the past 8 years or so has impacted on his life style to a considerable degree: –|
Initially both legs were effected then the lower body eg. scrotum and then lungs – to me it seemed as if I was gradually filling with fluid which caused some degree of pain and reduction of leg movements eg. climbing a ladder or stairs became very difficult with “heavy” legs to lift up the steps.
Chronic ulcers developed on the second toes of both feet and during one experiment of not wearing a compression garment, the calves of both legs began to `weep’ with fluid causing wet stains on my trouser legs.
At one stage breathing became somewhat labored and 2.2 litres of fluid were drained from my right lung with another 0.5 litre said to remain. However, the lung began to fill again and within several months I had a Pleurodesis (the sticking of the lung to the chest wall to remove the cavity within which the fluid apparently entered the lung). This was successful and only moderate fluid levels are now experienced.
Eventually I had to retire from my job that required standing all day, to a job requiring a more appropriate sitting down position.
I think my lymphoedema over the years has resulted in diagnosis that with the benefit of hindsight may have been incorrect. eg. I have had my spleen removed and have had several varicose vein operations.
In addition to my lymphoedema I am currently diagnosed with venous thrombosis in left and right superficial femoral veins and occlouded popliteal artery.
The purpose of the above detail is by way of background in that my experience may differ from others with lymphoedema alone.
“Over the years my condition has resulted in numerous trials of various devices to make life easier – the best of these I list below:”
Currently I wear a made to measure Jobst pantyhose style, closed toe, zipper on right hip, with braces that I cross over on my stomach. I wear cotton socks over the top of the garment so with long trousers it is just about undetectable. It is necessary to undo the braces on the garment if one wishes to urinate. It also requires your trousers to be undone and eventually you reach the conclusion that sitting is the preferred position (which is not normal for a male however it makes life easier!)
I have tried garments without braces and experienced constant “falling down” problems – I recommend braces which go a long way to solving this problem. Jobst garments have a lining behind the knees which I find to be very effective. Even for a female I am sure compression pantyhose would be a challenge to fit (I cannot yet do it unaided – even with help my first try took nearly 1 hour!). However help with a fitting frame (mine is a Venosan applicator $30.00 in 1995) now results that with my wife’s assistance we can have the garment on in well under 10 minutes.
My wife and I wear rubber gloves when fitting or removing the garment to help grip and avoid holing from fingernails. The cost for one of my garments is $545.00 (you need at least two – one to wash while you wear the other). One year would normally require 4 garments in total.
I personally cannot tolerate the garment whilst in bed, however this may be due to my other leg problems.
My Jobst garments were made to measurements taken by Louise Koelmeyer (Occupational Therapist, Westmead Hospital and Community Services). In my case I was fortunately supplied with two garments and Louise’s services free of any charge. Louise – I am very grateful for your help and the assistance of Helen Chamberlain (Jobst Rep.).TIP: At Louise’s suggestion I wrote to my Private Health Fund regarding the possibility of increasing the yearly limit on the cost of garments claimable. Their response was that in view of my long membership they would double the amount – well done Louise!
My first recommendation is to see a Podiatrist! My podiatrist, Lindy Begg, has been very helpful with advice and assistance. Lindy has offered a paper on footcare, which hopefully you will be able to see in coming Lymphformation editions. (Lindy’s article will be published in upcoming edition – Ed.)
Lindy eventually cured my previously chronic ulcers (on one toe of each foot). The dressings she applied were changed daily and within a month the ulcers that had been nearly a thumbnail in size had virtually healed.
The sides of my feet (near the little toe) become painful with the garment on. The best cure to date is to cut 2 little squares of foam rubber Â¬” thick and place either side of the painful spot and hold in place with Beiersdorf Fixomul Stretch Tape.
The tape needs to be firmly affixed or otherwise it will roll off when trying to put the compression garment on. TIP: Spray the area where the tape sticks to with “Skin-Prep” aerosol spray (Smith & Nephew Pty. Ltd. Clayton Victoria) It helps adhesion and strangely makes easier removal in that skin is protected to some degree from direct contact with tape.
Cracked heels and other arrears can be eased with a product called “Du-it” heel balm. Continued use results in smooth skin instead of rough and is a recommended purchase for arrears in need of TLC.
We have a waterbed and I cannot tolerate blankets touching my feet, so my plumber son made a `frame’ of copper water pipes that are screwed to the wooden sides of the bed to lift the sheets and keep them off my legs.TIP: A chair can substitute if away from home.
Perhaps because of the frame, in bed I use bed socks to keep the feet warm and also to help in circulation (best buy “Explorer” brand from Lowes, Coles, K-Mart – cut off the tight fitting tops and enjoy!)
During one of my hospital stays I purchased a sheepskin rug (“Kyda” Sheepskin, Kootingal NSW) for my back. At the suggestion of my podiatrist I have now also purchased one for my feet – ah heaven! TIP: Write name and telephone number on the back with texta if staying in hospital! For the elevation of feet the best product I have found is a “Relaxa Wedge” shaped to fit calf/thigh ($45.00 1995 from Vita Pacific Kilysth Victoria).
A mohair blanket provides relief and warmth if the weight of a blanket is a problem.
I find it best to shower at night. A plastic stool is helpful to `stand’ limbs on while washing them with Hamilton’s Dry Skin Treatment “Wash” ($14.30 500ml)
When working with feet it is very handy to have a chair the right height. in this regard a convenient choice is normally a toilet. However, not all toilet lids are strong or comfortable enough to sit on. TIP: Purchase a “Pressalit Caroma” lid, which has all the attributes necessary for a comfortable seat!
My wife bought me a lightweight walking stick (made in UK) with a handle that folds up to form a seat. This which takes some of the weight off your legs when out and about and seats are not available.
I find a minute or so on the feet relaxing using a Black & Decker device that has a shiny chrome circular head beneath which is a vibrator and also a heater if required. This unit “Dr Feelgood” operates from a normal power point.
Shoes need to be wide and provide room for swollen toes and feet – your Podiatrist will recommend brands/suppliers. My local Bootmaker made modifications to my existing shoes. He drilled holes to allow some degree of air to the ulcers and also cut a hole in one shoe that he covered with kid leather to allow a deformed toe which stuck upright to protrude through.
Use of the garment, aforementioned aids, occupational therapy, a podiatrist, sound medical advice, and a sympathetic nerve blockage have all contributed to regaining control of my problem. Life is much more comfortable now. My weight is now approximately 1 stone less (was 12 stone now 11 stone). Most of this was in the legs and scrotum. Now there are no ulcers or weeping calves – ah enjoy! (& I can climb ladders!) ???
Anthony Ortlepp © 2000