Beth's Sepsis Journey

Christmas celebrations did not happen for our family as it did for the majority of others. As around 6am on Christmas morning 2022, My little sister Beth left my house in an ambulance bound for Basingstoke A&E and hasn’t been back to her home since. It was the beginning of an epic battle that not only nearly cost her her life, but also resulted in her having multiple life changing surgeries.

Beth arrived at my house early evening on Christmas Eve and it soon became evident Beth had not quite shaken off what she thought was a cold earlier in the week and wasn’t feeling her usual self. She was also complaining of a dull pain around the left-hand side of her back and couldn’t get comfortable enough to eat, sit or lay down. Putting it down to a recurrence of suspected sciatica she went to bed to see if that would make her more comfortable. As the night went on, I did what I could to make her as comfortable as possible, but nothing helped, and in the early hours of Christmas Day, as Beth had admitted that the pain was becoming worse so I decided to call 111. Whilst on the phone, Beth began to throw up blue/green liquid & I now realise that it was the combination of the pain & colour of the vomit which led to 111 sending an ambulance to my house to take her to A&E.

I took my dog over to my mum’s so that I could tell her what had happened & leave him with her so that I could head to Basingstoke A&E. After the first few tests the Dr’s confirmed that Beth had both flu & pneumonia it became clear that she had severe respiratory problems, and they were struggling to get enough oxygen into her blood, so she moved from A&E, to a side room and then to RESUS.

Having had several doses of morphine on an empty stomach Beth kindly gave me my first Christmas gift of the day when she projectile vomited all over me! Beth’s oxygen markers were now at just 86% (usually anything below 95% is cause for concern), and her kidneys were now starting to fail. The room was suddenly full of people so I had to leave RESUS. I called Beth’s twin sister Liza and told her that she should head over to Basingstoke hospital ASAP. After Liza arrived, Beth was transferred to ITU where she was confirmed as having sepsis.

After a quick catch up with Beth, Liza and I were sent home and planned to return the next day. Before Liza and I set off to Basingstoke, we had a message from Beth which just said “ Don’t come, they’re knocking me out”. We went over and were able to spend some time with her in an HDU room in ITU where they had put her into an induced coma. We talked general rubbish in case she could hear us but after an hour or so had to leave her again.

At around 5.30 PM I had a call from the doctor to let me know that Beth was going into complete organ failure and that life support was no longer working. They advised that there was nothing else they could do for her and that we should prepare ourselves for the worst. Not quite sure how I got there but I went and collected Liza and we went to our mums to relay this very worst of news about her daughter, our sister, and to be together. A short time later we had another call and they advised us that the only hope of saving her life was to see if there was an ECMO machine available.

None of us had ever heard of an ECMO machine before and had no idea what it did. It transpired that it was a machine that takes the patients’ blood outside of their body, oxygenates it and removes carbon dioxide, allowing the heart and lungs to rest (similar to a heart bypass machine). There are only 4 Centres that had these machines in the whole of Southern England (only 8 in the entire country).

I was then asked a series of questions which (unbeknown to me at the time), was to enable the Drs to decide if Beth’s life was worth saving and whether or not she was deemed suitable to be put on one of these rare and potentially lifesaving machines. Thankfully we were told that Beth would qualify and that there was a machine available at St Thomas Hospital in London. They blue lit it in an ambulance to Basingstoke hospital along with a medical support team.

On arrival at Basingstoke the team would perform the operation to attach Beth to the ECMO machine and take her back again on blue lights to ITU at St Thomas’.

We had what seemed like the longest wait and it was after midnight we heard that she had arrived and was critical but stable. We now had to wait to see how she would respond. Because Mum was still displaying flu symptoms she could not go and see Beth, so Liza and I travelled to London where the Dr’s told us that as well as flu and pneumonia, Beth had contracted Strep A and that it was as a result of all of these, that she had Sepsis.

They told us, that the drugs that were needed for the ECMO to work can have severe side effects when given for only a few days, and it was anticipated that Beth would need to be on ECMO for between 1 & 2 weeks.

New Year's Day 2023

The days that followed were agonising for all of Beth’s family & friends, waiting to see if the huge number of drugs and machines that she was hooked up to would save her life. We continued to go up to London as often as we could and just hope that Beth would beat the odds and that ECMO would save her life.

After 8 days the Drs told us that the ECMO machine had done its job and that they would be taking her off of it. She would remain in ICU at St Thomas’ for some time, to recover from being on ECMO and continue receiving dialysis for her kidneys. Beth was brought out of her induced coma but was very weak & could not talk whilst she remained on a ventilator. They gave her a Tracheotomy but the only means of communicating with her was by trying to read Beth’s lip’s, which was extremely difficult & frustrating for all of us.

Beth continued to make slow progress, which was hindered somewhat by an ongoing infection in one of her lungs (the other had already undergone a chest draining procedure). By this time we were more than aware that her hands and feet had experienced some damage and it was mentioned that some of Beth’s fingers and toes may need to be removed due to the lack of blood flow to her extremities.

Beth stayed in London until the end of January, she was then moved to Winchester ICU and although she was still on a ventilator and was still having dialysis, from this point on we began to feel more positive and hopeful for Beth’s recovery.

Shortly after arriving it was decided that they could place an attachment on the tracheotomy to enable the air to flow over her vocal cords and allow her to speak again for the first time in 6 weeks.

This went according to plan and we were overjoyed to hear from the Drs & nurses her first word was “Yay!” Shortly followed (when both Liza and Beth’s stepdaughter, Catty visited), by “Hello, I Love you!”

Once the ITU delirium had cleared, the Drs gave her some news which would change her life forever. She rang Liza and said“I’ve just been told that they have to take my feet off! So…yeah, apparently that’s a thing!”

So on 10th February, Beth had to travel down to Southampton to have both legs amputated below the knee.

After only 24hrs, instead of being taken back to Winchester ICU she was told that they would also be operating on her right lung to remove the sepsis scaring that was preventing her full recovery.

In the weeks that followed, there were visits to Portsmouth hospital 3 times a week for 4hour rounds of dialysis. After only a few weeks Beth’s renal specialist confirmed that since her amputations, her kidneys had healed themselves so significantly, that they were going to remove the permanent port that they had put in for her dialysis as it would no longer be needed. This was the first real positive news after a very long time in intensive care.

After this things seemed to slow to a snail’s pace. Beth was waiting for the necrotic digits on her hands to be operated on and spent what she describes as a torturous 2 months on a surgical ward in Winchester waiting to be moved to Salisbury for this operation. It was during this time that despite Beth’s continued positivity in a truly awful situation that her mental health took a real knock.

During this time it was the love and support of her friends and family, the help of her physio team & one of the anaesthetists who became a real champion for Beth, that got her back on track and she received confirmation that the world renowned Douglas Bader Rehabilitation Centre in Roehampton would take her as a inpatient. Spurred on by this, Beth worked tirelessly on her strength and instead of being hoisted was able to transfer herself from her hospital bed into her wheelchair and back.

On Easter Monday Beth was transferred to Andover community hospital to build on the physio she had been receiving before travelling to Salisbury for her hand procedures.

What she actually received (due in no small part to the positive mindset & relationships that she’d built with staff along the way), would be far more beneficial for her than anyone could have hoped for. Nearly 2 weeks respite care felt like a holiday for Beth after all that had happened and we began to see real glimpses of our Beth again.

The hospice staff gave Beth a bedpan drumming performance on her departure from the unit and despite a small blip with a false positive covid test the day that she moved from Andover to Salisbury (meaning that she couldn’t have visitors), she embraced the last major surgical stage of her journey with real spirit and determination to get to Roehampton ASAP and start the rehab phase that would ultimately lead to her being able to return home and live independently.

Due to the nature of the necrosis on both of Beth’s hands the plastic surgery team at Salisbury could not confirm what they would need to remove & what would be viable to keep, until they got Beth onto the operating table. Beth came out of theatre having had all fingertips on her left hand removed and having managed to keep 2cms of the last three fingers on her right hand. Beth managed to keep an even smaller index finger but sadly they were not able to save her thumb.

Beth is now at Roehampton and has progressed enough to be allowed to return to our mums for some weekends “at home” and with the help of family, friends and some self-funded equipment we are all adapting to a new “normal” supporting her on her road to recovery.

Beth has worked tirelessly for 16 hours a week in the gym and as I write this has had her new (sunny bright yellow) legs for a week now. She is absolutely smashing learning to walk and after just one week has already walked outside of the bars with the aid of just one stick, and is now looking to her next major goal of making it to her brother’s wedding and standing for photos!

23rd June 2023, just a couple of days short of 6 months after being admitted to hospital Beth takes her first steps!

Beth’s journey will not get easier upon her return home. There will be many struggles ahead making it really hard to have her independence and many of these will carry a huge additional financial burden on top of this the company that Beth worked for went into liquidation and she has had no income since February. Once able to, Beth will be looking for new employment but moving forward she also has to consider things such as maintenance of wheelchairs, adaptions to her home and a bespoke pairs of legs (of which she will need several), costing anywhere between £6 & £12k per leg, which is where we hope you can help. We are aiming to raise 50K to help Beth with the ongoing costs of the situation she now finds herself in, having won her battle to survive Sepsis.

Because of the sort of person Beth is, she does not want people to feel sorry for her, and indeed every person who has spent time with her in these past months comments on two things, her continual smile and how her amazing positivity actually lifts them. She is already thinking about ways that she can "payback" and hopefully help others who are unfortunate enough to go through a similar experience. But in the meantime she has asked even if you are unable to donate, that everyone who reads this story can take a few minutes to learn and share the symptoms of Sepsis so that their loved ones can be treated as quickly and effectively as possible should they catch it, then her smile will remain. If in doubt remember to ask the question ... Could it be Sepsis ?

https://sepsisresearch.org.uk/

Thank you for taking the time to read Beth's story and I have attached a few addtional pictures of the sorts to things Beth used to do and hopes to do again. (Climbing the O2, Skiing, Go Ape, Snorkelling and just living/loving life)