Guest Post – My First World Lymphedema Day

This is a guest post from my husband Brett.

Today, 6th March 2019, is World Lymphedema day and most of you reading wouldn’t of ever heard of this, this includes myself until recently.

January 2019 was the time i finally got a diagnosis of a condition I have been suffering with for the last 8 years, since 14th March 2011. This is called Primary Lymphedema.

For further information on all lymphatic issues this website is a great reference.

Lymphedema (LE) has a primary and secondary status in the UK and this is how it is determined:

• Primary lymphedema is a rare, inherited condition caused by problems with the development of lymph vessels in your body.
• Secondary lymphedema can occur when any condition or procedure damages your lymph nodes or lymph vessels. This can be surgery, radiation treatment for cancer and infection. Infection is most common in tropical and subtropical regions and in developing countries.

At this time I had some swelling in my left ankle which I thought was a result of an injury from running, which i had just started to do. I kept an eye on this and a month later I still had it and now I was unwell. I had a temperature of 39.1c and couldn’t even get up. Lisa had enough and dragged me to the doctors who straight away said that I have cellulitis in my lower left leg and off to the hospital I went. (Cellulitis is a very common bacterial skin infection which gets extremely hot to touch and is very painful).

My condition got worse and worse and as I had been untreated for so long it was tough for the doctors to treat successfully. After 4 days I still wasn’t responding to IV antibiotics and daily I was visited by surgeons in preparation for amputation, as they where concerned it would manifest into a flesh eating disease and if it got to this the survival rate is very low.

They wanted to try one last antibiotic, as it was so strong I needed to be isolated into a separate room away from all the other patients. Thankfully we saw results in the next few hours and It was incredible how fast it worked. Leg saved and this was the start for a very long and frustrating 8 years.

Since that first episode I have had a ‘flare up’ 8 more times and the story is always the same. I either have a trauma to my left leg and this can be a cut, blister or even a bout of athletes foot and then the tell tale signs start. I get either very tiny red dots on my leg, extreme pain in my groin where the lymph node is swollen and fighting infection or a temperature of 39.1c – it doesn’t matter in what order I get these I always end up with all of them.

The picture below shows top left me cycling 45 miles and the remaining pictures are the four days that followed with me being unable to walk.

The trouble is the bacteria in my leg spreads so quickly I have a couple of hours to get to the hospital, but knowing these signs help.

I have had a break from flare ups from June 2015 – July 2018 and now it has started again.

I now had more than enough of this and decided to seek private medical advice and within a matter of a month I had the answer I have been looking for after so many years. The NHS really did their best in looking after me but as this condition is classed as a rare disease and disorder not many doctors or nurses know the signs or have the knowledge to treat it effectively. Every time I went in as an emergency, except once, they saw me quickly and treated me extremely well.

I was lucky enough to be seen by Professor Peter Mortimer at the Parkside London hospital in Wimbledon. He, without a doubt, changed my life with the explanation of my condition. The long and short of it is that my lymph nodes on the left side of my groin do not work and this causes the lymphatic system in my left leg to fail. Now I know what you are thinking is that why do I have primary and not secondary LE and the results of my tests showed that my right side groin lymph nodes are ‘weak’ as well so it was something I was born with and these infections have brought it to light.

Now having this condition I do have issues to deal with. I have to wear compression wear everyday and my leg swells to at least 50% more than it should.

The other thing Is that this is a condition not many people understand or have ever come across before and don’t have an idea of what the issues are so I will try and educate the best I can.

• swelling can come and go in a matter of hours or last for days
• it’s painful – not a sharp pain more of a big bruise when swollen
• the pressure it causes is unbelievable and feels like my leg is going to burst
• flying is not pleasant at all
• leg is heavy

They are the most common feelings for me.

Currently I am having my leg wrapped twice a week to control the swelling in preparation for a medical grade compression garment that I will have to wear for the rest of my life. I am also on medication for this.

To manage this condition I have made many life changes and this has really helped and these include major diet changes (no meat only fish), lots of veg , no dairy and lots and lots of exercise and I can not recommend this enough. The exercise has seen me, over the years, complete multiple sporting events as I will not let this condition dictate my well being or life.

The biggest difference is the unconditional help and support from Lisa (Fat Girl Fit) and her willingness to do anything to make me as comfortable as possible. I wouldn’t be able to do this without her.