"To look at, you wouldn't really see a problem..." Well duhh, that's because it's well controlled now *sigh* but YOU know how it feels. And no-one else does. Unless your lymph system magically healed itself, then the underlying causative problem hasn't gone away so it needs to remain under control as far as I can see. And it sounds like you did give it a good trial. I think there's a procedure called something like scintillography(?) that shows the real-time movements (or not) of lymph, but I heard it's rare/expensive which is why they use simple stuff like measurements instead. By the time the measurements go up, quite apart from your discomfort, the damage is being done :(( which I see as pretty similar to, Would you like me to have a hypo and *show* you I'm diabetic? or to skip my anti-epileptics and wait to have a fit in front of you? I've known a lady who retired because her company couldn't gaurantee to get her off to lunch the correct time after she had injected her insulin, you wouldn't think that would be so hard. Condition medically well controlled, situation apparently not well managed, although there may have been other factors I'm not aware of.
You said your last LN told you "...of course I can wear [a sleeve] because it would be discriminating against me if they didn't let me wear one!!!" Errr, no, they also have a policy about hand hygiene and standards of dress in clinical areas, because they have a primary duty of care to protect their patients. Your acquired disability is something they have to make reasonable accommodations for, offering to adapt your role if they can't adapt the conditions you had to work under.
From your point of view as a patient, Having got it (mostly) under control, do you want it to swell again?
Merc, women like that are inspirational, so sad to hear she passed away. I'm sure she would be very proud to know what you achieved, and probably astonished to know the impact she had on you.
I was trained and mentored by a fantastic lady that passed away only a few years ago. She wore a lymphoedema sleeve, and trained me to be a scrub nurse in theatre, a recovery nurse, and then gave me the confidence to specialise in anaesthetics.....
It's very different being the other side of the 'table'......perhaps thats what made her so great?
Good to hear from you again, hope you're OK.
Thanks for your advice, that's a really good idea to ring the helpline which I hadn't thought of. Yes, that's so me, I come out of the meeting and then remember all that I wanted to say and didn't. One thing that concerns me is that what if they think my lymphodema isn't bad enough? It is only me saying it's uncomfortable and achy, but to look at, you wouldn't really see a problem. One minute I feel OK about going for ill health, then I completely panic and worry that I'm not going to get it because I'm not bad enough.
My last LN knew about all the problems I was having, and suggested I went back to clinical work. After I explained about wearing a sleeve she said it was a load of rubbish, and of course I can wear one because it would be discriminating against me if they didn't let me wear one!!!
I didn't wear one when I was clinical, becaues of my concerns re:infection control (I would wear it to work, remove it in the clinical area, and put it back on after work - not really useful and now look where it's got me - a swollen (non visible) arm!
happyshopper, I would suggest you do what's called rehearsal - ring the helpline here and go through it with them, clarify all the exact points you need to make, write them down and then practise telling your OH or in the mirror so it comes out coherent when you have to do it for real. So easy to go in to a meeting, feel intimidated and your head goes blank and you make like it's all right when it isn't. Then on your way home you know exactly what you should have said and it's too late.
Good luck to you, and to Katyb 🙂
Hope your return to work is going OK and things aren't getting worse.
I have gone back to work after 3 weeks off sick (mainly due to ? fracture vertebrae- I have OP as result of AI and LD).
My LD is really quite mild I believe(sorry Norberte, I know you don't like me saying mild!).
Since I have gone back, have noticed it worsening again - my arm feels heavy and achy and trunk area feels tight and uncomfortable.I actually forgot to wear my sleeve the other day, and after about an hour or so of computer work, I was nearly beside myself with the discomfort. Thng is, it doesn't LOOK swollen (except for area on top of forarm by elbow), but sleeves on clothes feel tight, and when I wear gloves, my thumb and index finger on those are tight.
I am due to go back to OH end of May, and am due to see LN in 2 weeks time for them to do a medical report for OH. Thing is, I have never met this LD nurse before (other has left) so am getting into a bit of a state about this really, and making sure that I get across properly what I need to.XXX
I have just returned to work last week on a phased return (3 full days/week for 5 weeks) as per Occ Health instruction.I am not to do any hands on clincial work for this 5 weeks - lymphoedema and the limitations have not been mentioned again since last review.I have already found that sitting at a computer makes my hand more swollen so am not happy to go down that line if it is suggested.I have a review at Occ Health next Tuesday so it will be interesting to see what their take on clincal duties is.I am still reviwed by the physiotherapist who has recommended I do a "challenge" every day-this involves removing the glove and sleeve and try to replicate some of my clincial duties (need to use some imagination here!)and see what happens to the hand.So far there has been no increased swelling during this time,but I do rush to get the sleeve and glove on again after an hour (just to give me piece of mind).
Saw my oncologist last Friday-he doesn't think the lymphoedema will get worse now (1st noted start of Oct)unless there is trauma etc to the arm.The fluctuation inn swelling is definitely less.
As a clinical physiotherapist (who also manages a Trust-wide paeds service)I could not see myself doing full management-I think my arm would not do as well with sitting and computer work.
Will let you all know after next visit to Occ Health re infection control.....
Just wondering how you are all getting on with the issues of wearing a sleeve and working in clinical areas?
I am off sick at mo as lymphodema getting me down and have to say, the break from the computer has really helped. Due to see OH next week, and am not sure what my options will be if they decide to suggest redeplyment. Just spoke to infection control at the local hospital (if I was to return to clinical) and was told that compression sleeve is a "no" due to being unable to properly was hands. thing is, if i wear sleeve alone, then my hand gets swollen, so sure that I glove would be out of the question. just wondering what advioce you have all been given re:sleeve and clinical work?
Had review at Occ Health on Monday and am glad to report I met with someone who knew the facts and was not rude! I will return to work at start of April on phased return and have been told not to concern myself with the lymphoedema just yet.It is recognised there will be an issue in relation to hand washing/bare below the elbow if I need to wear a sleeve and glove.Ill-health retirement was not mentioned;neither was re-deployment out of physiotherapy.It was highlighted that there is a risk of infection to myself working on wards(eg TB)and this must be minimised.I was also told that the Trust must make all reasonable adjustments as I am now a disabled person-that bit came as a shock!
Plan to enjoy the next few weeks as much as possible and will comply with my physiotherapist's very good advice on management of lymphoedema!
Manny-I tried kinesiotaping and it worked really well for the hand but my fingers became the biggest problem.It seemed to be the sleeve was causing a "bottleneck" at the wrist and my hand swelled up.I now wear combisleeve with a made-to-measure glove on the top!Lots of pressure but it is controlling it.Not sure what will happen when I leave one part off.
I was working as a midwife/ childrens nurse. I was advised by my lymph nurse not to work on the labour ward as lifting, scratches, pinches to the arm would not help the lymphodema also the potential of having a needlestick injury in relation to suturing/cannulating/blood taking also a no no.
I always wore my sleeve in the clinical area.I have been fastidious in regard to hygiene, wearing a clean sleeve etc and have not had problems. I have since retrained and wear my sleeve all of the time. I'm on the computer more and do find that I am starting to get more swelling on one corner of my hand. I do have to work and I feel that I am working in the best environment for my health.
I have a review appt with Occ Health on Monday 6th and have requested a more senior practitioner to discuss my options.My lymphoedema is worse in the hand and the arm is quite good but am currently wearing combi sleeve/glove and a glove to keep all under control.I don't want to compromise my health by having to take the sleeve etc on/off to be able to do clinical practice but I am lucky that I also have a management role.At my first Occ Health visit I was told about ill-health retirement but that a Dr would have to ok that and it would take at least 3 months! I had just started chemo and was totally gutted by this approach.Now when I think there needs to be discussion around this I was told I may be re-deployed!!! Not exactly helping the individual to a successful return to work!!!!!!
Hopefully Monday will be more satisfactory for me.
I'm struggling here as well. My lymphoedema has gone into my hand (or it does if I wear the sleeve mainly) so I really need the glove. But I am clinical, so most of the time I end up wearing nothing and my arm is getting worse. Due to see my LN in a few weeks to see if kinesio taping will work to avoid the glove.
Non clinical isn't easy from what I do ATM, and ill health retirement isn't an option when you are 31 with 2 young kids.
I am even due to restart 13hr shifts in 2 weeks (directed by OH). My LN doesn't think my arm will cope with it but I have to try and get ill rather than assume I can't.
What is the betting I am due another Occ health trip by the end of the month??
thought that I would just update on my lymphodema - hope you are all getting sorted with your issues.
Swelling in my arm persists (even though told mild) and I sought help with "Access to work", who assess your work place to see if improvements need to be made to help you manage with a medical problem. They advised new chair and arm supports that fix onto side iof the desk, which should support the weight of my arm at the elbow. As per the usual hoops you have to jump through, i have had to wait 6 months for this eqipment to come (has had to be approved my different managers), butit should come this week, so will let you know how I get on.
I am due to see OH this week too, and am now certainly going to look seriously at the option of ill-health retirement - i'm not sure what more I can do, and am very keen not to worsen the lymphodema.
How has anyone else got on with OH? i will be intersted to see what you have been told. By the way, any of you in the RCN? they have been very helpful indeed.
This is so interesting I never considered this. I work as a midwife and naively never gave a thought to having any problems following treatment. I need to discuss this with occ health as you can imagine I use both arms quite a lot...... Yes like I say the disease that keeps on giving!
I was interested to read these posts on pressure garments and infection control.I had a mastectomy in May 2011,6 months chemo,5 weeks radiotherapy and have just started herceptin.I developed lymphoedema at the start of October and the surgeon and oncologist were hopeful it was chemo related (taxotere)as I had a lot of fluid retention.I wear a sleeve and glove (the hand is worse than the arm)but it has been very difficult to get under control.My problem is I am a clinical physiotherapist working in an acute hospital (paediatrics)and am due to go back to work soon but there is an issue with being "naked below the elbow".I don't want to give up work,or do full time management (which may involve being redeployed)and by all accounts,being at a desk all the time isn't the answer.
Yes, I think that my topless modelling days are long behind me too....!
Well, here's something else to add to the mix - got results of MRI scan today for back pain - fortunately nothing sinester found -other than a wedge fracture of T6 due to osteoporosis of the spine following teatment with Arimidex! As someone on here so rightly put it - it's the gift that keeps on giving!
So there we are - changed from clinical due to lymphodema/wearing sleeve (as well as fatigue and coping with shift work) to non clinical, non shift desk job, and now worsening lymphodema ? as result of computer use (would poss worsened anyway but computer work not helping) and wedge fracture in spine possibly worsened by sitting in a chair all day... HELP!!! I think my upcoming appt at OH will be very interesting....
Good luck to one and all XXXXX
Redeployment and ill-health retirement are really not bad options. I'm convinced that some of my friends got BC because of the high stress levels in healthcare.
After you have been through the warzone and survived BC, I think you do reassess your priorities and abilities, there is lots of other things to do with what's left of your life, which could be long and fruitful or short and complicated, we don't know what's round the corner. If you have honestly and honourably served Queen and country for over twenty years there's no shame in having second thoughts and wanting what's best for you for a change.
I think with a sleeve you should probably not be in a clinical environment, both because of the infection risk and also should probably not be doing any manual handling, but as others have found a desk job may not be much better. Risk to patients and risk to you.
So, should I go back to topless modelling?? um, well with my scars, maybe not. LOL. Maybe we could all use that multicultural NHS experience to get involved with teaching English to adults from other countries (whatever the politically acceptable way to say that is these days!)....
Boxes of chocolates and bottles of wine come under the maximum permitted load limits even with lymphoedema. Disposal of dead Christmas trees and mouldy leftover Brussels sprouts however is definitely someone else's job.
Hi all, this is an interesting thread. i developed right sided trunkal lymphodema in 2006, and then noticed aching in right arm so was advised to wear a sleeve. At this time I was clinical, and had to write notes most of the time following patient assessments. This madfe my arm ache more, but I was also having the problem of wearing a sleeve and constantly washing my hands made it very impractical.
In the end I used to leave it off, which didn't help my arm!
i didn't go to OH (should have done) but changed to a non clinical job at the same grade to try and resolve the problem.
However, sitting at a desk and working on a computer all day means my R arm (right handed)is becoming achy, heavy and I have now noticed swelling in my hand (L nurse told me to wear sleeve, but added glove too). I think this is where my arm is rested on the desk with using the the mouse and my arm swelling has worsened. This time I have involved OH as I really don't know what to do. OH have ruled out returning to clinical practice due to bare below the elbows policy. So what do I do now??!! I did speak to RCN for advice, because I got the impression that my options for alternative work are pretty reduced at present, and they mentioned ill=health retirement(I am now 47 and have been nursing for 27 years).
Good luck - I am due to see OH again next month so will keep you informed. XXX
Hi all, thanks for your replies sounds like a visit to occy health may be helpful. Have any of you had difficulties with moving and handling patients when you have swelling in your arm?
I have a sleve and glove and wear disposable glove over the fabric glove. With regard to patient handling and infection control you basicaly should not let your sleve come into contact with a patient. This is obviously going to happen and I don't think you can get around it. Although I have just remembered seeing the chemo nurses wearing disposable paper sleves, now they might work!
Hope this is of some use.
I have just returned to work and have been told to wear my sleeve (I don't use a glove), and that I need to have a fresh one everyday. That was from occupational health - but he did say infection control may not be happy with it - but told me to do it anyway for now.
I need to be able to examine patients else I simply can't do my job at all.
Anyone got experience of working in a ward environment while having lymphoedema? Am trying to find out if it had impact on types of activity you can do and infection control issues eg. Can you wear a pressure garment and still have patient contact?