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.
Anyway 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.
Anyway 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.