The two of us Michelle Andy Holidays Our sites

Living with lymphedema
It isn't about waiting for the storm to pass
It's about learning to dance in the rain

How it began
It was around lunch time and I'd just nipped into town for a computer part and was on my way home trying to decide whether to make some lunch at home or buy lunch on the way home.
Then out of the blue, there was a car just a few feet in front of me and not moving, it happened so suddenly that I didn't even realise where it had come from and certainly there was no time to react to it. Then there was a sickening crunch and a feeling of flying through the air followed by several summersaults quickly followed by a feeling of shock and confusion and then excruciating pain. My bike was a write off and I had broken my femur but this was just the beginning.

After a stay in hospital and a few weeks recuperation I had my new bike and was ready to carry on as before, but I noticed a small swelling just above my sock each night which I put down to the socks being to tight and wasn't really too concerned by it. Over the next few month the swelling became more noticeable and it started above my boot rather than the top of my socks which had been replaced with looser ones. Again because it was such a gradual process I had learned to ignore it most of the time although occasionally there would be a degree of discomfort associated with it. Over the coming months and years this discomfort would increase in severity.

Things get worse
After about five years the slight swelling had become really quite a large swelling which ran from my ankle to my knee not only that but my skin appeared to be covered in small blisters. At this point I really should have sought medical help but somehow I felt I had already left it to long and I really didn't want more medical intervention although I was quite worried at this stage. I did confide in Michelle which helped. Then one day my skin broke down along the back of my leg. I treated this myself with salt baths and a simple sterile dressing which did the trick because my skin healed up, but this was a temporary situation because it wasn't long before it broke down again.
I was fighting a losing battle because my skin had broken down in several places and was leaking quite a lot of fluid but still I persisted with my self treatment. I did occasionally mention this to my good and most trusted friend Michelle. One night we were chatting about it and I happened to mention that I would like to revisit Cornwall before it was to late!!! because by now I was quite certain in my own mind that I would lose my leg which by now was grossly swollen, heavily blistered, ulcerated and infected. This process had taken five years from the original injury but deep down I knew it was about to change. Michelle arranged to come over from Canada and make it possible for me to visit Cornwall that is the action of a real true friend and it  blew me away to be honest.

Then things come to a head
Before all this really started I used to visit my local tropical fish shop every Tuesday where I had permission to take all the photos that I wanted to. I carried on doing this even when my leg was in decline. But one day this proved to be too much and it became another landmark in my lymphedema story, this particular Tuesday I found that the pain was so intense that I couldn't even tolerate my trousers touching my leg. I did try to get to the shop but I had to turn back and come home. The other thing which had reached a point where it was unmanageable was the leaking fluid from my leg, I was having to sit with my foot on a towel on a plastic sheet with my trouser leg cut off so it had become almost impossible to try to carry on as normal I simply had to seek help but I was afraid that doing so would set events in motion which would end with me losing my leg. It looked like I'd left it to late to go back to Cornwall. Later that week I confided in a district nurse who was visiting about a different matter. She called my GP who sent me to hospital. Much to my relief I discovered that the condition could be treated and that what I now know is lymphedema wasn't all that uncommon.

The rocky road to recovery
Lymphedema occurs when the lymph system is damaged or when there is a heart or circulation is compromised in some way. The lymph fluid doesn't get taken away as it should but remains in the area which is compromised. One treatment is compression, where the affected area is bandaged quite firmly with a compression bandage which literally moves the fluid in to an area where it will be removed in the normal way. I was a little sceptical about this to say the least but I was prepared to give it a go.
After a few days the first bandages were removed and well, it seemed like a miracle had occurred, all the swelling had disappeared without a trace. This compression bandaging was carried on for a little while and then replaced with a special compression sock which hopefully would maintain things. Initially this seemed to work quite well and Michelle and I had a fantastic time in Cornwall, we even decided to get engaged (every cloud has a silver lining). I'd like to be able to say that everything was concluded but...

Here we go again
After a short time I started to get a little swelling above the compression sock causing it to roll down and make matters even worse.
My circulation was being checked every six months with a doppler test and when I went to my next test I mentioned the problems that I was having and the solution was to get some made to measure compression socks rather than off the shelf ones. This was done but the problem was unresolved in fact there was no improvement at all which was a little frustrating having come this far. At my next doppler test I brought this up again only to be told that it should have been ok with made to measure and perhaps I had been measured wrong? So I was re-measured and guess what, still the same problem persisted. Not being very happy about this I made more of an issue about it but for the next five years nothing changed, it was always a case of lets re-measure and try one more time but things were going in the wrong direction once again. Why don't people listen?

Unexpectedly, things go in a new direction
I was exiting a shop (my local chippy) when CRASH my false leg broke!!! fish and chips everywhere. Having quickly realised that I wasn't really hurt in any way (other than a bruised arm) I kinda sat there wondering what my next move was going to be.

sore armAnyway the lady in the shop offered to give me a lift home (where I had a spare leg) once the shop had closed so things worked out in the end or so I thought.
Having waited a while we were ready to get me home but just as we were on the point of leaving an Ambulance turned up - siren, blue lights the lot. Apparently some woman in the chippy panicked and called an ambulance when she saw my foot come off!!! At this point I'd like to dispel the rumours started by some friends of mine - I came home in an ambulance because of my leg, it was nothing to do with the psychological trauma of dropping my chips !!!

Things didn't improve once at home, my spare leg was on top of a wardrobe (have you ever tried climbing a step ladder with one leg?) any way falling off the step ladder didn't hurt to much and at least I grabbed the leg on my way down.

Then it was off to Preston to get the leg fixed/replaced.  Not surprisingly the leg couldn't be fixed and worse still my spare wasn't that great and wasn't even rated to carry my weight so it was confiscated. I had only had it for nine years without incident but now suddenly it was deemed to dangerous to let me use it. I enquired just how I was meant to manage in a house with steep narrow stairs and no leg? But they didn't want to know and were completely unbending on the issue. This didn't really help my normally good humour because it would take approximately ten to twelve weeks to make a replacement. During the discussion the doctor noticed the compression sock which as usual was all rolled up below my knee. He pointed out that in his opinion it was dangerous and that they had a dept there which could make a better garment. I thought this was little more than a distraction and politely declined his offer (except without the polite bit) I couldn't believe the situation I was being put in to.

Things settle down but not for long
I ended up living upstairs, basically sat on my bed for the next ten weeks during that time the swelling disappears again and my leg feels great, carers are coming three times per day and the district nurse persuades me that the Preston dept really is the better place for me to get the compression garments which I reluctantly agree to. Eventually I get the new leg which is ten times heavier and a poorer design than the old one but that's another story. The district nurse arranged the appointment to see about a new compression sock but when I turned up no one knew anything about it. This happened four more times!!! For me this involved a sixty mile round trip each time.
Then finally I get to see the person at last only to discover that there is no referral and at Preston if there is no referral nothing gets done, another wasted trip. When I got home there was a message for me - they had found the referral and I should return the next day, which I did and they measured me!!! Now is it me? I mean measuring someone is hardly an invasive treatment was it really necessary to drag me back for another 60mile round trip in an ambulance the next day just to take a few measurements, surely taking a few measurements could have been done referral or not?

Things get really bad
Next thing that happens is that I get a message to pick up the new compression sock, so I make the trip to Preston only to find that there has been a mistake and that it hasn't arrived yet, this was followed by another appointment to see the doctor there a week later who wanted to know how I had found my new compression garment, I explained that I didn't have it yet and he apologised and offered to pick up the tab in the cafe there. Two weeks later and another appointment is arranged over the phone, I asked the person to check that it really had arrived this time which she did and assured me it was there waiting. I made the journey yet again and on arrival I was greeted with - "Sorry I have some bad news" the measurements we sent weren't acceptable to the garment makers". So I was measured again, meanwhile the compression socks I was using which should be replaced every six months were well past their best and my leg was starting to deteriorate as a result. But the new measurements were taken in the correct format and a few weeks later the garment arrived (this whole process had taken countless appointments over a twelve month period to get this far).

When I saw it I was disappointed, it looked horrendous one and a half legs, bib and braces and several sizes to small. It took me and two others almost twenty minutes to get it on and I couldn't walk, sit or even move while wearing it due to the discomfort. It was obvious that this wasn't the answer, so much so that they even cut the leg off the garment while I was there in an effort to rescue the situation. The leg on it's own went on easily enough but didn't stay up and when I pointed this out it was met with a shrug and the comment that there was nothing else they could do, and true to their word they never arranged another appointment.
Changing to Preston from the DN's was an absolute disaster, my leg worsened under their 'care' and using my own experience I would say that Preston could be used as guide on how not to treat patients, in just about every way.

A new low point
By this time my leg was in serious decline, the swelling and the soreness were both returning so in desperation I bought a compression sock off the internet but my leg had swelled so much that it wouldn't fit despite being xl size. Then I began pestering the district nurses because I had no where else to turn eventually one listened and said she would try to arrange something. Due to past events I didn't really hold out much hope and by now my leg was just as swollen as it had ever been due to not being in compression.

Then out of the blue, the nurse rang me back and told me that my details had been passed on and that I should here something soon which I did. (Many thanks AP, you know who you are, despite my cheekiness and grumpiness (mostly grumpiness) , I owe you more than you'll ever know). A specialist lymphedema nurse came to see me and after talking for a while I felt a ray of optimism about things. An appointment was made for me to visit the clinic and get properly assessed. Unfortunately my now very swollen leg broke down again before my appointment. For me this was a real blow because it meant things went back on hold until my leg was healed, I felt that it wouldn't heal without the compression - catch 22.

The district nurses were called in to change dressings and to try to get my leg healed so that we could take things forward again, unfortunately my leg carried on getting worse until it reached a stage where I had to be hospitalised.
In hospital I had intravenous antibiotics but for a while my leg still got worse. Once again I really thought my leg had gone past a point of no return and that I would lose it.
If only lymphedema treatment was open to all instead of restricted to cancer patients none of this needed to happen. Worse still, an amputation is a big operation, with me being over weight and having breathing problems I didn't think I would survive such an operation.

While in hospital I developed some pressure sores on my foot and my leg is in its worst ever condition and the pain, I think this is right up there with the worst pain I have ever felt in all my life and I am no stranger to pain. Quite simply it is unbearable when touched, changing the dressing is an absolute nightmare and something I have learned to dread, even the morphine only has a limited effect on the pain.
Tests showed that I can have compression treatment, with this news some optimism returns,  but me being housebound for the last eight months coming on top of all the other recent events has taken its toll on me and I feel quite low, this occasionally means I'm quite grumpy and although I'm aware of it the grumpiness ends up being in places where it shouldn't be.

The fight back begins
Eventually the original sores on my leg dry up and I'm discharged from hospital. The pressure sores on my foot will take longer to improve but with compression and proper treatment the worst really is behind me.
A couple of months after leaving hospital I am attending a lymphedema clinic for treatment three times per week and things are very much better and are improving by the day. There has also been a marked improvement in how I feel in myself and I am much brighter.
So despite all the ups and downs I believe my leg is really going to improve now that I'm receiving proper treatment from people who really understand and know all about lymphedema, how to resolve the problems it can pose and how maintain things once they have improved sufficiently.

You can just tell when something is right.

Life should not be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in sideways, covered in scars, body totally used up, screaming 'Yahoo - what a ride!'

Update - Sept 2010.
My foot has finally healed although the skin is still quite delicate so I will have to wear a special shoe to offer the skin some extra protection and to prevent a relapse. I am finally out of bandages Although I have to wear a compression sock instead which is much more comfortable and  unlike all the past compression socks this one actually fits properly and stays in place.
The new sock has made a huge difference, even after just a few days. My leg is now probably the best it has been for years, it almost seems miraculous.

A few months back I discovered that a chronic lumpy rash on my tummy and on the base of my back was also lymphedema. This has some implications for me because this hasn't been caused by a trauma unlike the lymphedema elsewhere on me. So there was no place left to hide and kid myself - it was down to my weight. Now the bottom line is that I wasn't all that bothered about being over weight, I especially didn't (don't) care what other people think and if something was bothering me it was nice to "treat" myself without any pangs of guilt what so ever, sure I know there are benefits to losing weight but to be honest there was no real incentive and without that there was no chance a diet would work long term.

So has this "new" lymphedema provided the incentive? Well not really but... and it is a big but (no pun intended).

Let me explain, I have been treated by a couple of people who have worked their socks off to try to help me, when I haven't been able to get to the clinic for whatever reason they came to my home. They have tried everything and more in order to help me and the realisation that my weight (ME) was actually working against what they were doing, well, there's the incentive right there.
So now I've lost 28lbs in 6weeks and it has been relatively easy (with a real incentive) so far, I think this is the real thing too because already I have seen a reduction in the lymphedema on my tummy.

So now it is time to pick myself up, dust myself down, keep smiling and make an effort to get back to some sort of normality in my life.

This whole episode has been quite life changing as it has turned out, and to think - I only wanted a new compression sock!!!

Only one question remains.

How on earth can you adequately thank a small group nurses, and a few other health professionals after they have just given you your life back?

Update January 2011

Another quick update mostly regarding my weight loss, and it is great news. I've lost ---- 91 lbs (6 1/2 stone) so far and although there is still a long journey ahead it does now feel to be achieveable, time will tell. My leg is doing great although my caste is doing less well lol and has had a few DIY repairs.

Michelle's view

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