Hello, my name is Jen.
I am trying to raise over £40,000 to cover the costs of my double Lymphnode Transfer surgery including all pre/post-op procedures, that are only available privately as it isn't done on the NHS. I've spent the majority of my adult life in and out of hospital for long periods of time as an inpatient due to my chronic condition, Lymphedema. When I fall ill, it is a race against time to get to urgent care, as what starts as a skin infection (cellulitis) then proceeds to rapidly enter the blood and turns into life-threatening episodes of Sepsis (blood poisoning) which is fatal if not immediately treated with IV antibiotics. Not only am I living in constant fear of falling ill, I also suffer daily from the physical restrictions of Lymphedema (constant, heavy & painful swelling of both legs). This is why I need your help...
More About My Condition
Since birth, I have suffered from a congenital condition called Lymphedema (painful and severe swelling of both my legs due to defective lymph-node function). Not only has it been an ongoing struggle to get on with normal daily tasks without being in severe pain, but it has also had a profound impact on my mental health and has lead to depression, anxiety and a very poor self-image. It has life-threatening complications that have lead to sepsis (blood poisoning) in the past and am highly susceptible to contracting again. I struggle to stand for any period of time, to find shoes and trousers that fit, or to walk without recurrent leg cramps. The surgery is unfortunately not available on the NHS and has to be done privately.
Not only does this condition significantly decrease my quality of life, but it also puts me in danger of contracting frequent bouts of recurrent Cellulitis (skin infections in various parts of the body derived from breaks in the skin, even sometimes as simple as a papercut) which have subsequently turned into Sepsis on a number of occasions - resulting in over 20 long-stay hospital in-patient admissions.
How does it feel to have Lymphedema?
To put it bluntly, it feels like I have heavy lead weights permanently strapped to both ankles while experiencing a 'Chinese-burn' type pain on my skin due to the constant tension on my skin.
For the majority of my life, I've resigned myself to the thought that this horrible condition is something I will have to struggle through for the rest of my life and accept that the pain, swelling, fatigue & heaviness is only going to get worse as time goes on. I've had to also try to come to terms with the fact that I will never be able to live a normal life, pursue my dream job or to live without fear of hospitalisation and disability.
It has been my mission to hide this part of myself from the world as best as possible up until now, so I'm finding it quite the struggle to bring this to light.
Any time I travel anywhere or leave home, I have to take a daily course of low-dose antibiotics as a preventative measure to lower my chances of contracting cellulitis (which have often proved futile as I have still ended up being admitted).
Despite being told there will never be a cure - I have refused to give up hope.
After years of endless knock-backs from specialists and consultants with no outcome, I managed to find a plastic surgeon who specialises in Lymphedema treatment, Anne Dancey.
Lymph Node Transfer Surgery (taken from Anne's website)
"The procedure involves harvesting several superficial lymph nodes from the underarm area. The superficial lymph nodes are not responsible for draining the arms and therefore it is unlikely that you would develop lymphoedema of your arms. However, to reduce the risk of donor site lymphoedema even further, we use a videofluoroscopy camera to identify which lymph nodes are important for draining the arm. These important lymph nodes are then avoided to reduce the risk of developing further lymphoedema. The lymphoedema begins to improve rapidly and many patients will notice a reduction in the size of their affected limb before discharge from the hospital. However, the limb will continue to soften and reduce over the following 18 months. The lymph nodes have been shown to release cytokines (cell signalling chemicals) that encourage old lymphatic pathways to open up and new networks to develop. Most patients will notice reduced discomfort and heaviness in their affected limb immediately. Those suffering from recurrent cellulitis should also notice a reduction in the number of episodes."
This surgery (and all surrounding treatments and consultations) will take place at the Spire Parkway Hospital in Solihull.
As well as a double lymph node transfer, I have been advised by Anne that I will also need a follow-up surgery of Liposuction on both legs (approx 6 months after first surgery) to even out the appearance of my legs and to help bring them back to a normal size.
Here are screenshots from Anne's fee page that we have added up as the initial estimate for the surgery cost:
Any pledge, no matter how big or small that you can make to aid me on my journey to recovery would be appreciated more than you would know. We are still awaiting the confirmation of the final amount to be paid (hospital quotes are being delayed due to covid), but basing the fees on Anne's website as seen above, this is the goal we are initially aiming for.
Any additional fundraising we might manage to attain will be donated to the following charities:
- LEARN (Lymphedema Education and Research Network)
- Women's Aid
- Cancer Research
- Marfan Trust
Thank you for taking the time out of your day to read this, and blessings may be upon you whether you choose to donate or not.