Galtyboi just giving an update.: Hi all,my name is Larry... - LSN

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Galtyboi just giving an update.

galtyboi profile image
21 Replies

Hi all,my name is Larry and although I haven't been here in a while ,some of you may have seen my posts.I have lymphedema in both legs and feet and I must say I am one of the lucky ones.I am under the care of the lymphedema clinic at Mount Vernon ,Northwood,Herts,and the treatment I am getting is amazing,the male and female nurses have been fantastic and couldn't do enough for me ,without them I would have been lost.I have now resigned myself to a life with lymphedema,I wear two pairs of compression stockings which keep my swelling down ,and allow me to walk with shoes on ,something I have not been able to do when I first got lymphedema.I have got used to wearing them and take very little notice of them when I have them on,sometimes I struggle a bit getting them on ,but my good wife is at hand at most of the time,so I call on her if I should need any help,again I am so lucky to have that help at home.I have read many of your posts on here and not every is as lucky as I am,and feel like they are been let down by the NHS and their GP's,but believe me there is help.out there ,its just finding the right place is the problem.Many lymphedema clinics are, after treatment for some time,referring patients back to their Gp's to carry on with the treatment.Although this hasn't happened me yet,I fear after my six month visit to my clinic,I fear I might get the bad news that I am going to be referred back to my GP surgury for the treatment to proceed.My Gp's have been excellent to me ,and for that I am truly grateful,but lymphedema is something they have not been trained in ,and I fear I wouldnt get the same treatment as I am getting from the experienced staff at Mount Vernon ,but I guess ill have to deal with that when the time comes.Now just before I get carried away and forget to stop,I want to tell all my fellow lymphedema sufferers new and old,that lymphedema is not the end,its just something we got and it can be controlled, and we will learn to live with it ,I have it and I look upon it as my best friend,wherever I go it comes with me,till we meet again ,best wishes to all .

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21 Replies
Anne16 profile image
Anne16

I agree, although I wouldn't call lymphoedema my best friend, it does certainly follow me around! Personally, I feel better now that the temperature has dropped somewhat. Good luck and best wishes.

galtyboi profile image
galtyboi in reply to Anne16

Best wishes Anne,yea now that the temperature has dropped it makes it a little easier,We will soldier on ,at the end of the day ,we are here and we are dealing with it,thats the way to look at it.

AnneBury profile image
AnneBury

Really good to read your update. Best wishes.

galtyboi profile image
galtyboi in reply to AnneBury

Thanks AnneBury,look after yourself,theres a world out there that can still be enjoyed,don't let lymphedema stop you.

Mon1caM profile image
Mon1caM

Really good to hear positive comments, for once - thank you Galtyboi! I endorse what you say - once I had found the right clinic and staff (at St George's Hospital, South London) my cellulitis was dealt with (antibiotics) and good advice re compression garments helps me keep it under control. I wear compression knee length stockings and Proskins waist high tights. Also I use Farrowwraps on prescription at night regularly. One tip, Galtyboi - I have found it very helpful to use a stocking donning aid - I found several types sold by Complete Care Shop. All the best!

galtyboi profile image
galtyboi in reply to Mon1caM

Hi Mon1caM,thankyou for your reply and you tip about the stocking donning aid,would you believe it I already have one but found it more of a hindrance carrying around everywhere I go,I have discovered that sitting on the side of the bed and putting stockings on half way then by pushing my feet firward on a carpet surface while pulling up at thecsame time is much easier and less stressfyl than a donning tool.try it sometime ,must be a carpet floor,your feet will.not grip on a wooden floor and wood possibly damage the stocking.best wishes.

Mon1caM profile image
Mon1caM in reply to galtyboi

Well, whatever way you have found to work for you is obviously fine! I think keeping a positive attitude and getting on with life, enjoying it whenever possible, is half the battle. Education, especially of the health care staff, is the other half ! All the best!

galtyboi profile image
galtyboi in reply to Mon1caM

Your 100% correct ,you must show a positive attitude,you can't let it destroy your confidence,life must go on ,there are millions a lot worse off.There are young children in hospitals with cancer,it is these poor children I feel sorry for,these are the ones that need all the help they can get,who am I to complain about two swelled legs and feet,its only a headache compared to what others are going through.My thoughts and prayers to the parents of all sick children,they deserve a chance of life.God bless them and protect them.

Mon1caM profile image
Mon1caM in reply to galtyboi

Just wanted to add that the LSN is doing a good job of teaching GP's but I guess they need to be alerted to the training available. We can all do our bit there!

galtyboi profile image
galtyboi in reply to Mon1caM

Where would we be without LSN and also the magazine LymphLine which I have just got through my letterbox in the past few days which gives a world of information ,all these people involved do a terrific job and I thank them from the bottom of my heart.Education on lymphedema is now coming more into Gp's surgery's ,some want to know about ,others think they have enough on their plate ,but its getting there.As you say ,we can do our bit here too by discussing how it is effecting us,every bit of information is a help.

4Gotten profile image
4Gotten

Despite suffering for 28 yes still no federal for the lymphodema clininc, terrible support in bradford

galtyboi profile image
galtyboi in reply to 4Gotten

Really sorry to hear that,maybe you should talk to your Gp and ask how much he really understands lymphedema and see if he knows what clinics are available,if no answer then change your GP.You have a right to treatment same as everybody else.

galtyboi profile image
galtyboi in reply to 4Gotten

Airdale NHS foundation do a self referral service for patients with lymphedema,at Airdale hospital ,keighley ,west yorkshire.telephone ( 01535) 292712.Ring them and make an appointment and get treatment,sometimes you got to do things yourself,Your gp probably doesn't know this.

Thomas45 profile image
Thomas45 in reply to 4Gotten

If you mean Bradford as in West Yorkshire that's where I live. I was referred to Airedale Lymphoedema Service by my GP. While they're based at Airedale General Hospital I've seen the Lead Lymphoedema nurse twice in Manningham at Westbourne Green Hospital. Yesterday I received my new knee length socks which I'm wearing now. You can self-refer. Telephone 01535 292712 See also airedale-trust.nhs.uk/servi... They are wonderful.

Bijingo profile image
Bijingo

I'm a therapist - retired for now - still learning all the time! Larry, thanks for your inspirational post - all the best with your future management of this condition. Just a tip, I haven't used this product yet, but this type of thing might extend the life of your garments (or help you deal with wooden floors) - selfcare-solutions.com/prod...

Have a great day, y'all! :)

galtyboi profile image
galtyboi in reply to Bijingo

Thanks Bijingo ,only problem with a mat is it will slide when pressure is put on it,whereas the carpet is static and will not slide making it easier to pull stockings on ,but probably a good stocking saver if somebody can stand on it while you slide you feet into stockings using mat.

Bijingo profile image
Bijingo in reply to galtyboi

The mat should stick to both the floor and the stockings, me thinks :)

galtyboi profile image
galtyboi in reply to Bijingo

Yes well worth a try if the mat will not slide,and easy to carry ,will work well.for a wooden floor if it doesn't slide,and it looks good too.

Snaomi profile image
Snaomi

I all. I wear thigh high stockings. I have a hard time getting the stockings over my calf and knee area. I have tried the Butler and it isn't that great. Everything else just seems to be for the foot area. I am planning to have the SAPL surgery in a few months and have heard that putting the stockings on for the first several weeks after is pretty painful. Does anyone know of an easier way to get them up the leg and not just over foot and ankle?

galtyboi profile image
galtyboi in reply to Snaomi

Hi Snaomi,my stockings go just to the knee and I put mine on sitting on the bed and using the carpet flooring as a grip.First of all I have two pairs of stockings ,one heavy tight pair which I put on first and a looser pair on the outside.First of all from sitting on the bed I bend over and put on the first stocking on my foot and pulling it half way up my leg between my knee and ankle,grasping tightly the top of the stocking and pushi g my foot forward on the carpet while pulling up the stocking the remainder of the way,repeat this for all four stockings using the carpet for leaverage while pulling them.on ,hope this helps.

Snaomi profile image
Snaomi in reply to galtyboi

galtyboi thank you for your input. Appreciate it.

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