Gastric Pacemaker Surgery

My dear and best friend Abi has been a nurse for almost 20 years, giving selflessly to others, always caring and worrying about everyone else above herself.

Now she needs our help….

As a teenager, after months of medical investigations, Abi was diagnosed with Lupus, an autoimmune disease that makes your immune system damage organs and tissue throughout your body. There is currently no cure.

2020 was a challenging year for everybody, but for Abi it was the last year when she ate real food.

Symptoms started with indigestion, but quickly progressed into violent sickness after a mere mouthful of food or drink, with Abi quickly falling into nutritional crisis.

By the time Abi saw a Doctor, due to Covid restrictions, she was in a critical state; she was admitted to hospital instantly and tube fed into her bowel to save her life.

Within days of being in hospital she was told she would never eat again, with very little explanation as to why.

After months in hospital, a multitude of painful procedures and trial feeding methods failing, her only option was to have drastic surgery to insert a permanent feeding tube. She survives now on liquid feed that is fed into her bowel. No solid food can be eaten and any sips or drinks will be vomited back up. She had to flush her tube 6 times plus a day and feed for 10 hours a night for any nourishment at all.

Unfortunately this hasn’t been so permanent……the tube itself has been replaced 24 times over the last two years, each causing multiple occurrences of sepsis and periods of time with no effective or sustainable feeding method.

With this being her only source of nutrition and failing so frequently, her body has been slowing shutting down; she is chronically anaemic, now dependent on frequent blood transfusions; Lupus has damaged her body, causing heart and kidney issues and life threatening sepsis.

Abi has seen so many doctors and been subjected to 100s of tests; for example one surgical procedure, that should have improved the situation, led to pancreatitis, her being unconscious in hospital for eight weeks and very nearly dying.

The chronic post-surgery pain has resulted in Abi being prescribed subcutaneous pain medication which she has to administer herself six times a day, along with a further six daily anti-sickness injections. This has severely inhibited her quality of life.

I can only imagine what it must be like to be unable to drink a cup of tea or eat a sandwich. On the rare occasions that Abi has actually been well enough to spend time away with her family, she has to carry huge bags of liquid feed with her – something that certainly doesn’t fit into the standard 20kg allowance we all complain about.

We need a permanent solution for Abi to receive the vital nutrition she needs to save her life, and to give her son and husband extra time with her.

A life-changing solution is for Abi to have a gastric pacemaker fitted, it works in a similar way to a heart pacemaker and instead of stimulating the heart, it stimulates the stomach muscles. The device sends electrical impulses to the stomach muscles in order to help them to work more normally. This would enable her to actually eat and drink again, preventing her body shutting down and allowing her to live again.

Unfortunately, in the UK this surgery is not funded by the NHS, although it is funded in other countries. The treatment in the UK costs £30,000 and is available now. This seems like such a small sum, bearing in mind the NHS costs for all of the medication and medical intervention she currently has to undergo.

Please help me to save Abi; this surgery is her last chance.

The constant distress being caused not just to Abi but to her family has to stop, it’s just not fair.

For the medically minded I have included further details below:

• Abi has Gastroparesis and Bowel Dysmotility

• A NG tube was inserted initially and was replaced many times.

• She now has a permanent PEG-J feeding tube, enabling her to receive Enteral nutrition (EN)

• Her life is mostly spent in hospital

• Over the past three years she has had in excess of 36 hospital admissions, equating to more than 50 weeks in hospital

• She has had PICC lines inserted on numerous occasions; it typically takes up to 23 times to cannulate and take blood - this in turn has led to her developing sepsis five times, resulting in Abi needing further lifesaving care in hospital

• Abi has Lupus autoimmune disease, including myocarditis and pericarditis which have been exacerbated by her ongoing gastric problems and nutritional crisis

• She suffered Pancreatitis following surgery on a bile duct to aid with gastric issues – again she nearly died

• Abi has ongoing infections from her PEG-J tube and is on antibiotics constantly

• She is chronically anaemic due to her lack of nutrition and needs blood transfusions regularly

Abi needs our help to get the surgery she so badly needs that will give her a life, her life.

She spends so much of her time supporting and saving others, never complains about her own pain and suffering, she really deserves our help.

Please help in any way you can; your support is invaluable and really will be life changing.

Thank you so much,

Ann-Marie Inkley

Guts UK