Few things are more terrifying to a lymphie than a bout of cellulitis – except, perhaps, getting a bout of cellulitis while abroad in another country.
Andy has had cellulitis a number of times, so he’s a bit lucky in that he knows the signs of infection and the importance of acting swiftly to treat it. No matter how prepared one may be, however, there’s still an element of panic when hit with an infection thousands of miles away from home.
In this guest post, Andy writes a day-by-day account of a recent episode of cellulitis he had during a business trip to Australia. If you’re a globe-trotting lymphie at risk for infection, take note – Andy’s peppered some helpful tips throughout!
I was diagnosed with primary lymphoedema 45 years ago when I was 15. From then till I was 30 my lymphoedema remained just a curiosity, a minor swelling in my right foot. Things changed in the summer of 1989 when I got cellulitis for the first time. I took me 2 weeks to recover from that first infection and it left my right leg significantly larger than it had been before. That first infection was followed by several other infections which occurred at roughly 3 month intervals. After a couple of years, and several courses of antibiotics, I got quite good at dealing with cellulitis and finally shook it off (the cellulitis not the leg) sometime around 1993. By that time my GP had taken to prescribing antibiotics for my to carry with me, just in case.
I remained free from cellulitis till August 2000 when I got an infection while holidaying in France. That resulted in a 5 night stint in a French hospital with accompanying crash course in French. I then managed to clock up 14 years and quite a few air miles with four different airlines before I fell foul of cellulitis again. During time I always carried my antibiotics with me when travelling and took care to ensure that my travel insurance covered my condition.
What follows is an account of a more recent brush with cellulitis. The account is based on notes I took at the time and includes a number of ‘learning points’, notes I made to myself about things to remember to do if I ever went down with cellulitis again. I have included dates and times to give the reader a feel for how long each “phase” lasted. My key learning point from this was that even though I started taking antibiotics within 2 hours of thinking I might possibly have cellulitis I still became very ill and took several days to recover. Cellulitis can be challenging enough when you are at home but if you travelling when it happens that adds another dimension. This experience hasn’t put a stop to my travels however there are a couple of things I won’t be doing again.
Wednesday 2nd July 2014
It was confirmed that on the following Saturday I would be off on a 2 week trip to Sydney Australia courtesy of my company. I was quite happy to have someone else paying for my first trip down under. However I knew I’d be busy and that the I would need to take care of my lymphie leg. As I was travelling on business my company healthcare insurance would cover my condition and I packed my antibiotics and compression stocking etc. The bad news was that my company’s travel policy didn’t stretch to business class flights so this was going to be a long haul.
Saturday 5th July
I left home at about 10 am to drive to Gatwick with a late morning check in at Emirates. 23 hours in Economy class lay ahead to me. As I am 6 feet 4 inches tall I requested a seat with extra legroom. My luck was in and I got extra legroom all the way to Sydney. I wore my usual compression, a knee length class III compression stocking and a Fallowwrap, round my right calf during the journey and gave my legs as much gentle exercise as I could during the flight. I used to fly to the US between 4 and 6 times a year so I was used to 9-11 hour flights but 23 hours was breaking new ground.
Sunday 6th July
Most of Sunday was spent on planes. I finally arrived in Sydney at 10 pm after 23 hours travel (21 flying, 2 hours changing planes in Dubai). I took a Taxi to hotel and crashed out at 11:30pm.
Monday 7th July
I was up and in the office by 10:30 am then I started to orientate myself round office, currency, client background etc. On Monday evening I was desperate for some exercise so I used the hotel swimming pool and jacuzzi (more of that later) and decided I should get back into swimming again.
Wednesday 8th July
I remember admiring my right leg that evening and thinking how well it had coped with the travel! I almost posted a photo on Facebook to my Lymphie friends to show that long distance air travel is possible when you have lymphedema.
Thursday 9th July
I walked 3 miles to work from South to North Sydney over Sydney Harbour bridge. The walk took just over 1 hour which I suppose wasn’t bad given traffic and some less than perfect navigation.
Friday 10th July
We had a meeting scheduled with our client in North Sydney at 10 am. The office was a brisk 1/2 mile walk from the station. The weather felt slightly cold as it was winter in Sydney, however it was a bright and sunny, about 12c. The meeting started a few minutes late however at about 10:30 I noticed that I was shivering slightly. I put it down to the walk from the station. Maybe it was colder than I thought? It wouldn’t have been helped either by the ice cold Coke I had been drinking. I decided to ease back on the Coke though looking at the bottle I hadn’t actually drunk much. Something odd here!
By around 10:40 I noticed some pain behind my right thigh, it felt like it was running in a line from just behind my knee to about 6-8 inches up the back of my thigh, I started to get concerned, could this be cellulitis or was I just being paranoid? The meeting ended at 11:05 and I decided that paranoid or not this could be cellulitis. I told my colleagues I needed to return to the hotel to get some “medication”. At this point I wasn’t 100% certain that I had cellulitis but it seemed highly likely.
Learning points: Learn to recognise the symptoms of cellulitis. In my case it manifests itself as pain in the lymphatic system (nodes and sometimes in the vessels), flu like symptoms e.g. tiredness, shaking, possible temperature and maybe some redness in the limb but that usually comes later. Be ready to take action immediately.
Don’t stray far from your antibiotics, never more than a couple of hours away. I won’t be packing my antibiotics in my checked baggage on 9 hour flights again or taking day trips without at least some to hand. It didn’t matter this time but I wouldn’t want to be 2 hours into a 9 hour flight and go down with cellulitis.
I perked up a bit on the walk back to the station but headed straight for my hotel and my antibiotics.When I got to my room I took two tablets, tracked down some details of the company travel insurance then called hotel reception to find a local doctor.
Learning point: Make sure you have full travel insurance including cover for pre-existing conditions, i.e. declare your lymphoedema, make sure you covered, read the policy so you know what to do if there is a problem.
By now, noon on Friday, I was feeling quite light headed and very tired, like I had bad flu. It turned out there was a medical center 200 yard away from the hotel so I walked over there to see a doctor and get checked out. When I arrived I told the receptionist I had primary lymphoedema and probably had cellulitis. She booked me in and bumped me up to the front of queue. I probably got to see doctor at about 12:30. He took my medical history, examined my leg, diagnosed cellulitis, prescribed 2 oral antibiotics and one topical and sent me for ultrasound scan to check I didn’t have thrombosis after a long flight (23 hours) I’d had on Sunday.
At about 1:15, I saw the receptionist at x-ray and got in queue with just one person in front of me. 1st in queue hadn’t done her prep so I got her place. More medical history then the scan. That was probably completed by 1:45pm. I paid the $175 Aussie dollars on my credit card and returned to the GP for the results. The pharmacy was next to the doctors so I picked up my prescriptions whilst waiting for the results. At about 2:45pm, the doctor came out and told me the ultrasound was clear so I paid him $100 Aussies dollars for the consultation and said goodbye.
Learning point: Make sure you have some funds available to pay emergency medical bills. You should be able to claim it back on your insurance provided you keep the receipts but be prepared to pay out first. This amounted to 400 Aussie dollars in my case and I reckon I got off lightly.
Having sorted out the medical stuff my thoughts turned to food. Eventually I settled for a large carton of Wanton soup, that would do for lunch and dinner and would help to rehydrate me. I returned to my hotel room, took the new antibiotics then waited 30 minutes and ate.
At around 6 pm a colleague who was working on the same project and staying at the same hotel called, could she get me anything? I provided a short, well actually quite long, grocery list. Then I tried calling home but got no answer, back in the UK it was 9 am and my wife would have just left for work, communication was going to be difficult. My colleague returned at about 9 pm with the groceries. Once I had stashed them I took my medication, then I used a ballpoint pen to make line on my leg recording the limit of the redness and went to bed sleeping thru till about 4 am.
Learning point: It helps to mark the extent of your cellulitis regularly, that way you know how much its spreading and others e.g. medics, can see your history written in ink. It also helps establish your credibility with them!
Saturday 11th July
4:00 am in Sydney, about 6 pm in the UK. I awoke from my slumbers and it seemed like a good time to call the UK however my wife was not answering her landline or mobile so I sent a text then watched a replay of Australia v Holland in the world cup. This was followed at 5:30 by taking my pills then breakfast at 6am followed by watching some more TV, it’s not easy sleeping when cellulitis kicks off. As I didn’t have a hard copy of the company travel insurance policy I downloaded a copy and started to study it. I decided I better put these guys in the picture because I would probably need to change my return flight which was due to return to the UK 6 days later. I called the Insurance company at 9 am and they took down my details and asked me to call their medical line in Sydney. I called their Sydney number and gave my details again. They then asked me to go to my nearest Accident and Emergency taking my passport. It turns out that the UK has reciprocal healthcare arrangements with Australia so showing my passport established my right to treatment.
Learning points: Take a printed copy of your medical insurance with you when you travel. I was able to download mine to my laptop using the hotel WiFi but had I not had access to my laptop, my email and a WiFi I would have struggled.
Get in touch with your insurance company early, even if you don’t need them immediately , they may be able to help you but even if they have nothing immediately to offer you’ve established the case and given them details so if you do need them your next call will be shorter.
I arrived at A&E at about 11 am, filled in a form, showed my passport, got triaged and then waited 30 minutes to see a doctor. A&E was quiet, only me, a middle aged man in Lycra and a Chinese guy who was struggling to get past the admin because he didn’t have his insurance documents with him. I gave the doctor my medical history including my previous episodes of cellulitis. They took some blood, well quite a lot of blood actually, I hadn’t volunteered to be a donor, come on guys!! At around 2:30 pm the doctor told me they wanted to hit me with a lot of antibiotics so it was Intravenous drip time. That also meant they are keeping me in. At 3:00 pm a porter and nurse wheeled my bed up to the ward. On the way up the nurse filled me in on some of the history of the place. This was Australia’s oldest hospital, financed on the proceeds of rum sales. Florence Nightingale sent two nurses out here to train the others. I was deposited in a male bay on the ward. There were four of us in the bay, two alcoholics, two methadone addicts and me (go figure). I spent the rest of the evening getting used to hospital routine including IV antibiotics every 6 hours.
Sunday 12th – Thursday 16th July
I won’t bore you with the details of the next 5 days. The summary is as follows. I received IV antibiotic every 6 hours for the next 5 days. My right leg got bigger and redder from the knee down for the next two days, by Monday morning it was pretty big and quite red however the swelling was confined to below my knee. By Wednesday morning the leg was looking a lot better and by Thursday it was back to ‘normal’. My fever and general malaise followed a similar timeline to my leg however I do remember being particularly shattered on the Monday night. During the first few days I spent a lot of time checking the colour of my leg to see whether it was improving or not before concluding most difference was caused by the difference between viewing it in daylight vs artifical light. I spent a lot of time asking the doctors when I would be discharged, if they knew they kept it a closely guarded secret till late on the Thursday when I said I would be discharged the next day. I also had several conversations with my company’s HR and my insurance company about rescheduling flights but couldn’t progress that much till I had a discharge date.
Friday 17th July
By Friday morning I was desperate to get out however at 8 am the guy in the bed opposite told me that a Malaysian airline had been shot down over the Ukraine. Our route out took us south of Ukraine over Turkey and then where? The three countries bordering southern Turkey are Syria, Iraq and Iran, no worries about the return journey then. Maybe I should stay in hospital for a while?
I spent most of the rest of Friday pacing the ward and asking what time I would be discharged. I didn’t wish to seem ungrateful for my treatment but I had mentally checked out and was craving for some decent food. I was discharged from hospital at 5 pm on Friday 18th complete with a doctor’s note saying for medical reasons I had to travel back business class. The additional costs associated with the upgrade were picked up by the company’s travel insurance company :-). I stayed on in Australia for another 5 days finishing up my assignment then flew home.
Some Additional Learning points
I have always been advised to stop using my compression when I have cellulitis and I had always followed that advice however this time I made one exception. This time I put my compression on before getting out of bed. This helped me in two ways. Firstly it hugely reduced the pain that I got when my infected leg went from being propped up in bed to being below the level of body, hanging over the side of the bed. In the past I have found that when my leg goes down fluid seems to rush into it and stretch the skin, this is extremely painful (8 out of 10 in pain scale). Fortunately I found the pain only lasted for about 1 minute while the skin stretched. This time I found that wearing compression when I got out of bed reduced the pain (4 out of 10 on pain scale), probably because it reduced the stretching which also resulted in my leg returning to normal faster than had previously happened.
Bathing or showering is difficult when you have cellulitis especially if you’re wearing compression and trying to keep it dry. The tip I got in hospital was to wrap a bin bag round the limb and tape it up. It wasn’t always perfectly water tight but boy was it nice to have a shower.
Make sure you have credit on your mobile phone and a charger for the phone and kindle or life will get hard very quickly.
Mobile phones & Kindles are a godsend in hospital. If you have a kindle with 3G you can get daily papers or download a book when you are almost anywhere in the world at minimal cost. Last time I had cellulitis I got stuck in a French hospital for a week with one paperback that I didn’t get on with, this time life was much easier.
While still in Australia I had made arrangements to see my GP and Lymphoedema nurse back in the UK. When I got back my GP put me on a low dose of antibiotics for 12 months.
What could have caused the cellulitis? The $64 million dollar question. The blood cultures at the hospital didn’t throw any light on the cause of the infection As to the point of the infection, well remember that walk I mentioned across Sydney Harbour bridge? On the Friday I when was taken ill I noticed I had a cut and some blood on my 3rd toe on my right foot, the cut had been made by the nail on the fourth toe. I think blood was just a signpost to the point of entry. The entry probably took place in the swimming pool or, more likely jacuzzi. My lymphie right leg then acted as a bug incubator till, on Friday morning, the infection spread into my lymphatic system and then into my general circulation.
Learning Point: Andy! Cut your toes nail more often and stay out of Jacuzzis . Incidentally I had several bouts of cellulitis in the early 1990’s when my kids were young and I often spent time with them in warm kids pools in public swimming pools.
My experience in Australia has made my think a little more carefully about foreign travel, in future I want to stay within striking distance of a decent hospital but I’m still travelling. In the 12 months following the trip to Australia I went to the States 3 times on business and Italy twice on holiday. I am not going to let my experience with cellulitis rule my life but hopefully I’ve learnt something from it.
-Andy B., 2017
A big thank-you to Andy for sharing his experience as well as some great tips for fellow lymphies!
How about you all – have you had cellulitis while abroad? What was your experience like, and do you have any ‘learning points’ of your own?