The story of Louise
In Feb 2017 I had a routine angiogram at Bedford Hospital. I have protein c deficiency (meaning my blood clots without medication) my consultant requested a careful bridging plan, monitoring pre and post op. The hospital provided the post op dose of heparin, I had no reason to question them, until I developed a blood clot a week later. I had been given the wrong dose. Things spiralled from there!
Once I got to see the sister at my anticoagulant clinic (whose care I have been under since my 1st DVT in 2002) it was apparent that Bedford Hospital had incorrectly dosed me, wrong heparin dose plus having protein c in my opinion caused me to develop a DVT. Then in March I started to get excruciating pain in my stomach, I couldn’t eat without pain, every time I ate the pain was horrendous, until I became too scared to eat at all, I was surviving on fluids. I was told later down the line the pain was like having an angina attack in my stomach. The vascular consultant whose care I was under was a locum, he was very concerned and sorry I had been mis dosed when he requested a tight bridging plan, he organised ct & mri scans to get to the bottom of why I couldn’t eat. It was now may, and I met him for my results, in 2 months I had lost 1 1/2 stone already due to been unable to eat. He showed me my scan and showed me I had a narrowing and clot in my mesenteric artery in my stomach. He said as he was a locum he would need to consult the MDT team to see how to proceed. The MDT decided this was not a vascular issue and said they couldn’t help, the locum was very concerned and empathetic but it was out of his hands. I was grateful this locum showed me on the scans and highlighted the clot in my artery as it helped me to seek help elsewhere. I got a copy of the scan results which stated I had a narrowing of my celiac artery – known as celiac artery compression syndrome (CACS) I wrote to the MDT team begging for help, I was losing weight rapidly, I was unable to eat solids and in constant pain, I had all the symptoms of CACS and I highlighted this time after time. I was in a fight with the then CEO of Bedford Hospital and their vascular team for care, but they wouldn’t help me, for me their duty of care failed me, they kept telling me this is not a vascular issue, even though a search of CACS shows this should be dealt with by a vascular Consultant. They referred me to a gastroenterologist, this was their idea of a 2nd opinion, even he didn’t know what was wrong. So even though I had the results in black & white from the scans, nobody there was willing to help me, they just put up barriers, tried to tell me it was in my head and because they had sent me to gastroenterologist in their MDT they believed that was that, and basically waved me away. I saw my GP regularly throughout and he was fantastic, he saw the scan results and saw the decline of my health and he knew I was in serious trouble and wrote to a vascular surgeon I had found at St Thomas’ in London. My GP and my haematologist both wrote a letter of referral for me to St Thomas and I got an appointment in Oct 2017, by this time I had lost 3 stone and was very weak, I was on liquid fortisip to help but it wasn’t enough. I’d lost my job at the school I’d been at for 12 years due to sickness absence and not able to work as my symptoms were preventing me from doing any daily tasks and I was on oramorph and many other drugs. Privately during this period my life was turned upside down. We lost our family business and our home as my husband devoted himself to helping me. At St Thomas’ they organised MRI, doppler scans prior to seeing the consultant, he confirmed CACS & also diagnosed may-thurner syndrome, I was so relieved this amazing consultant had found the reason to my deteriorating health and was able to start the process of organising intervention to help me live. I was still in communication with Bedford MDT at that point and I advised CACS was confirmed & also may-thurner, the consultant in charge of MDT at Luton & Bedford Hosp signed off saying this is not a vascular issue and he’d like to see that documented from St Thomas that it is vascular, he also went on to say he had re-checked my scans and he couldn’t see any sign of may-thurner. CACS is very rare in the UK with only 2 in 100,000 cases, but it was in black & White on a scan result, I felt my local hospital basically left me to die, as without intervention at St Thomas that’s what would have happened. Since being referred to St Thomas, I’ve had many venograms, angiograms, a major op to release the CACS ligament, this wasn’t enough to relieve my symptoms, I then needed further procedures of ballooning and stenting, also celiac axis block. I was back and forth to St Thomas for 2 years needing intervention, in one year alone I had 17 procedures (Bedford had said this was not a vascular problem, yet here I am in the hands of one of the top vascular surgeons internationally who was helping keep me alive).At one point I was hospitalised at my worst for 3 months when multiple organs started to suffer due to the malnutrition. Finally after 21 procedures and 4 years I was at a point with my CACS settled they could proceed to stent my may-thurner. Then covid hit so this was delayed. I have now had may-thurner stented and I am still recovering & rehabbing. I have been told that may-thurner as well as my protein C could explain why I’ve had 5 DVT’s, something my local hospital objected to. As I reflect now and see how far I have come from where I was. I know that without my amazing vascular surgeon at St Thomas I would not be here today, he saved my life. Bedford MDT who was still in denial in our last communication in 2018 were willing to let my 2 sons grow up without their mother and my husband without his wife. I didn’t contact Bedford MDT again since Jan 2018 or share my story as I involved the Parliamentary Ombudsman, who I feel also failed me due to the type & timing of communication due to the pandemic, my biggest wish was for the hospital to learn. Plus I was working on staying alive. So now I feel ready, I feel that I should share my story, March is Blood Clot awareness month, this very rare condition is called Celiac Artery Compression Syndrome, I want to share how rare and debilitating it is and that other people shouldn’t suffer like I did by highlighting it’s symptoms.