Lymphedema garments in the heat grrrr
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Sheryl
What a bummer! People always think I am weird when I say I'd rather have got lymphoedema soon after surgery (as I did) rather than years later, but I still think I was better prepared for impacts and outcomes than I might have been when I reasonably could expect it was all in the past.
Best of luck with your new garment. The all in one is supposed to give best results although I had a bad experience (partly through a local supplier who couldn't fit properly) so my excellent therapist has settled for an arm and glove that keeps us both happy. I wear them daily (occasionally skip but only if it's cool) and also keep up daily exercises. My swelling is much less though and I manage well with monthly massage (self massage and elevation when I remember). I hope you get some improvement very soon.0 -
Hi Ladies this was on my facebook this morning thought I would share it ....
http://www.mylifehouse.org.au/teach-patients-self-manage-lymphoedema/
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@Share My lymphedema therapist told me that you can develop it at anytime after treatment, but I guess by 13 years you would have thought you were not going to, so I feel your pain. I had initial diagnosis 2009 and had 7 nodes removed and went on to have lumpectomy, chemo and rads. No lymphedema and thought I was sweet. I had developed a pesky infection around my fingernail and never once thought of lymphedema. I unfortunately at around the same time (18mths after all treatment finished) had a recurrence. This time I had a mastectomy and another 6 nodes removed and more chemo. I had to fly every 3 weeks for chemo and that probably didn't help. It was about half way through that treatment that I developed my lymphedema. My problem area was my hand. I initially saw a private therapist and because at the initial stages my problem area was my wrist and I balked at a glove she only put me in a sleeve. Of course the fluid was pushed straight into my hand!!! So I then managed to get into the public system and had an amazing therapist who told me to grow up and I needed a full sleeve. I hated it and it caused all sorts of problems at work as I am a nurse. I managed to find a good two piece for at work that I could slip the hand on and off quickly. I persevered with the long garments for a couple of years but as my problem was mainly my hand I was able to swap between a long and a short (only to my elbow) garment. I would self massage in a very particular way as shown by my therapist for a good 20 mins each night. Eventually I was able to go glove free at work and only wear a short glove the rest of the time. This was great for about three years and then wammo I had a bit of a blow out just below my elbow last year. So was back into garments at work, and the long garment. I have no idea what caused it to flare up again . I am now self massaging daily for longer (had probably dropped down to 5 mins before flare up). The hard work is paying off. I feel for you with a 50cm difference. Keep up the daily massage, has someone shown you the correct way to do it? Let me know if you want a description. Sending you a huge hug.
Paula xxxx0 -
@Soldier Crab thanks for sharing, what an amazing place that lifehouse must be. A great legacy to Dr Chris O'Brien RIP.
She is so right in that lymphedema is only just being realised and treated in the way it should and people are still often getting referred too late.
Paula xx0 -
Great, thanks for the updates and info ladies - forum always a font of knowledge and support. Thanks @soldier_Crab for the facebook link and @mum2jj for the info.
Yes, my lymphedema therapist has shown me several exercises to be performed 3 x times a day (bit difficult to try and find a quiet spot @ work to do for 10 minutes - sometimes I lock myself in the toilet !) along with self-massage once daily for 10-15 minutes.
My physio has also recommended a night garment now (will speak about that at my appointment next week). More additional costs - grrrr.
Up until a few weeks ago, there was some reduction in the swelling overnight (I always keep it elevated) but that is no longer the case.
Just cannot believe the huge change in such a short period of time.
My physio said it could have been something as simple as a mozzie bite, small scratch etc even though I am vigilant with my hand sanitizer !
Enjoy the w/e ladies.
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P.S. - Oh and @soldier_crab - you are not going to believe this but the lovely lady featured in the Lifehouse link, Jessica, was my initial lymphedema therapist who recommended me to another physio as when the cording developed she said I may benefit from laser treatment and she does not perform this !
What a small world !!! xx
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OK I just read post from where I had put the LINK today.... you can claim the garments through various government departments depending on state.
NSW is ENABLE I will find the links and get it up here ....http://www.lymphoedema.org.au/about-lymphoedema/compression-garment-schemes/Compression Garment Schemes
State
Garment Subsidy
Eligibility
Subsidy
Limit
Prescriber Guidelines
ACT ACTES (ACT Equipment Scheme) 1) Lymphoedema diagnosis
2) Means test - Commonwealth pension and/or health care card holder100% Two sets of Compression garments every six months Public or private lymphoedema trained health professional NSW EnableNSW 1) Lymphoedema diagnosis
2) Centrelink, or full pension holders eligible
3) Means tested for those in receipt of an income with some co-contribution for those on a low income100%
$100 Co-payment required annuallyTwo sets of compression garments every six months. Lymphoedema therapist registered with the Australasian Lymphology Association - National Lymphoedema Practitioners Register – Level 1 (or eligible for registration) VIC Lymphoedema compression garment program (LCGP) 1) Lymphoedema diagnosis
2) Centrelink, Pension or healthcare card holders eligible40-60% of cost of garment
Limit of 6 garments per year Lymphoedema therapist registered with the Australasian Lymphology Association – National Lymphoedema Practitioners Register – level 1 (or eligible for registration) QLD Compression garments for adults with malignancy related lymphoedema 1) Scheme available for those with cancer-related lymphoedema
2) Aged over 16 years
3) Pension or healthcare card holders eligible100% Provision based on clinical need as determined by treating therapist Lymphoedema therapist registered with the Australasian Lymphology Association – National Lymphoedema Practitioners Register – level 1 (or eligible for registration) TAS CES (Community Equipment Scheme) 1) Lymphoedema diagnosis
2) Centrelink, Pension or healthcare card holders eligible100%
$50 co-payment required annuallyLimit of 2 sets of garments per 6 month period Public or private lymphoedema trained health professional WA CAEP (Community Aids and Equipment Programme) Centrelink, Pension, healthcare card, or Commonwealth seniors healthcare card holders eligible Contact the WA Disability Services Commission for this information Limit of 2 sets of garments annually Public lymphoedema trained health professional NT Lymphoedema Compression Garment Subsidy (accessed through the Occupational Therapy Department, Royal Darwin Hospital)
(08) 8922 8888Lymphoedema diagnosis
100% Limit of 2 sets of garments per 6 month period Public or private lymphoedema trained health professional SA None National DVA (Department of Veterans Affairs) 1) DVA gold card holder
2) Lymphoedema diagnosis
3) GP referral to lymphoedema trained health professional100% Provision based on clinical need as determined by treating therapist Lymphoedema therapist registered with the Australasian Lymphology Association – National Lymphoedema Practitioners Register – level 1 (or eligible for registration) Information provided in this table has been simplified, please refer to the relevant websites for full details and eligibility requirements.
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Hi I am lucky to only have mild lymphodoema but had an appointment in December to get new garments and still waiting on two of them.0
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@Soldier Crab Thanks for all the info. I am lucky enough to get my garments through the public system in Cairns, however they are on such a tight budget that people with mild lymphedema who get referred to them often don't get seen. I am ok as I am now in the system, but I get the feeling they would be happier if I went private... Not the lovely therapists, but they are under lots of pressure due to budget restrictions. At around $500 a garment I can't afford that and am very grateful to be able to still get them.
Paula xx
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Ladies my therapist orders mine from this place I had them in a few days .... http://www.tslaustralia.com.au/
I also got my sizing and bought some off Ebay.... they came from Lativa and were here in less than a week.1 -
Mine are Jobst, Germany. Made to measure, ordered through my therapist and usually here in 7 - 10 days.0
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Thanks for advice I am following up on the orders and also ordered one off ebay0
