2 months ago I set this up with the dream to raise enough money and take my family on the holiday we never made it to, when I suddently became ill.
Having to cancel my kidney transplant set for 12th June from my Dad has been very upsetting for all my family so now we are trying to raise the funds for Eclizumab.
Every penny raised is going towards this cause and my Mum and Dad are setting up a Trust for all the funds.
Earlier this year my Mum wrote down my journey so far for a local paper to thank riders for raising funds. I thought I would share this with you.
23 March 2013 and we were finally counting down, 2 days before heading to Florida. This was quite a trip and one which had been arranged 2 years earlier. It was a very special family holiday as at Christmas we had surprised Grandma to join us on this holiday to celebrate her 70th birthday. Cases were packed, we were so ready to go.
Abi, then 10 years old, was recovering from a second throat infection within the space of two months. My husband and I were convinced the sunshine was just the tonic she needed to bounce back to her usual energetic ‘life loving’ self. That Friday I couldn’t wait to get home, fully expecting to be greeted by a house full of excitement, if not a little prepared for pre-holiday hysteria! But, when I got home Abi was no better. Normally a whirlwind of energy she was quiet, lay on the sofa and looked drained.
The following day we noticed a slight puffiness in Abi’s face. My husband and I decided it best to take her to a drop in centre thinking we could dispense the prescription before then heading for the airport. However, we sensed something wasn’t quite right, ditched the idea of the drop in centre and took her to A&E at Pinderfields hospital just to be confident we had the right prescription.
My husband drove Abi to A&E leaving me to sort out the last bits of packing and to check we had all our tickets and currency. He promised Abi they wouldn’t be long.
We didn’t know at the time, but the doctor who assessed Abi was a renal consultant and immediately linked Abi’s symptoms to what we later understood was the latter stages of kidney failure. We later learnt he was in immediate contact with our paediatric renal consultant, Eric Finlay, based in only one of a few specialised paediatric renal wards within England.
Abi was admitted to Pinderfields and I slept with her there that evening. 24hrs hours later she was transferred by ambulance to the paediatric renal ward at the Leeds General Infirmary.
As the next 2 days slowly passed the penny dropped we wouldn’t make our flight. The initial disappointment that our holiday was lost, was quickly replaced with the shock of what was actually happening.
With the exception of a couple nights at home, Abi remained in hospital until 14th May.
Abi underwent a number of treatments in an attempt to save her kidneys. High doses of steroids and cyclophosphamide (chemotherapy) had little effect. A visit to theatre to fit a line into her chest to carry out multiple sessions of plasma exchange left her immunity stripped and Abi in an isolated room on the ward for her own protection. Her skin thinned, stretch marks appeared, her hair began to fall out and her body continued to swell with fluid. Sadly the treatments had no success. A kidney biopsy finally confirmed Abi had Dense Deposit Disease, a rare but aggressive kidney disease.
The line in Abi’s chest remained as she became dependant on haemo dialysis, just 3 weeks from being admitted. Following her discharge in May we travelled to the LGI between 3 and 4 times a week to the paediatric dialysis unit. Abi struggled so badly with the treatment but never ever moaned.
September 13, Abi visited theatre for a third time when a Peritoneal catheter was inserted and since then she has had dialysis at home for 10 hours every evening.
In November 13, her haemo line was removed in theatre once stable on peritoneal dialysis.
Recognising Abi’s continuing selflessness is overwhelming. For example, the tears shared with nurses after Abi lost consciousness following a session of haemo dialysis to come round and immediately look into my eyes and ask if I was OK at a time she was petrified.
It has taken time to understand the ever changing challenge of Abi’s kidney loss and her disease. Reliance on dialysis, the many daily tablets, fortnightly injections, monthly infusions and frequent blood tests, blood transfusions, the management of potassium and phosphate through diet, the management of blood pressure through fluid restriction, flare ups of gout, significant weight loss/muscle wastage and the likelihood of the disease affecting a transplanted kidney.
But as our daughters demonstrate, life need not stop, it just needs to adapt and change. For what has been ‘lost’, a million treasured moments have and will continue to be experienced.
Thank you so much to Dr Eric Finlay and the whole team at Leeds General Infirmary for continuing to unconditionally walking this path with us today and guiding us on the best path for Abi’s ‘tomorrow’ – how privileged we and all your patients are. Thank you .. the Longfellow’s x