In November 2020 I underwent major abdominal surgery in an effort to correct multiple vascular compressions which were destroying my quality of life.
The surgery itself was the biggest test of courage in my whole life. The months we spent beforehand, raising the money for it - were the biggest test of determination in my life.
I am so proud and grateful that we achieved such an inconceivable goal under the circumstances (COVID, lockdown, lack of fundraising opportunities, and of course the fact my condition was getting increasingly worse.)
In spite of all we achieved, the surgery has unfortunately been a failure and I am markedly worse off than before. My remaining quality of life has now been mostly snatched away from me and I spend most days in bed or in a chair, in a horrendous amount of pain. This has been nothing short of devastating for me.
I am in a position where most of the normal things that people take for granted are a rare luxury for me, or even a distant pipe dream. I cannot eat without pain and discomfort for the rest of the day. I’m in agony for hours after I empty my bladder or pass a stool. I can only drink bottled water and nothing else. I can’t stand up for longer than 10-15 minutes without being crippled with internal pain. The list goes on really. I am constantly struggling with nostalgia and grief over the life I have lost. I am struggling to accept these new limits and pains as a 28 year old male, still full of fire and enthusiasm for a life which I can’t physically pursue.
If I’m honest - it exhausts me to repeatedly go into the details for everyone that wants an explanation - so I hope this section of the page describes my situation sufficiently.
Medically (during the surgery) - I had my median arcuate ligament cut. I also had two solid PTFE plastic tubes inserted around various blood vessels in my body. I can feel these tubes inside of me everyday, pushing on things and causing very intrusive pain.
I have had two separate professionals - a vascular surgeon and a radiologist - both confirm that at least one of these PTFE stents was a catastrophic failure, crushing the vein it was supposed to protect. This stent was placed around the outside of my iliac vein, like a big shell, to protect the vein from further compression. Instead however, it has reduced the diameter for blood flow inside of my iliac vein down to a mere 7mm, which is absolutely insufficient (and very obviously painful) for a fully grown male.
I was told this would explain some of my symptoms, such as the constant throbbing pain in my left leg, and the fact my left foot is often dark purple and cold.
I will spare you the rest of the gory details, but basically I am going to need to pursue further testing and scans in various fields if I want any hope at navigating where the fuck I’m meant to go with this chaotic spiders web of a disease, and what kind of potential future I am even capable of having here.
I have literally been waiting since January for the vascular team on the NHS to make an effort to help me. It is now September and I refuse to spend the next few year sitting around and waiting for them to actually put me for a scan or admit me.
I am in enough pain to cause me to consider self euthanasia as a legitimate option every single day. It is the first thing that comes into my head when I wake up. Not because I am pessimistic or depressed, but because my life is unethically limited and I am in abhorrent amounts of pain. I do not want a life or a future like this. I have so much more to give to the world.
So my next step is to simply raise enough money for a private IVUS scan with a UK radiologist whom I trust. An IVUS is an Intravenous Ultrasound scan - which is essentially a camera / ultrasound scanner passing through the inside of your vascular system. This type of scan is really the only feasible way to see the extent of the failed surgery in Germany, and what is truly going on inside of my veins.
This only really addresses one aspect of my pain / symptoms, but it’s certainly the right place to start.
I have been quoted at around £3000 for the full procedure, including anaesthesia for the scan etc. I have put my full goal at £4000 (if we can) to account for accommodation, travel and to create a bit of a safety net.
Like I say, I really don’t know where half of these confusing symptoms will leave me in life, or what bloody scans etc I even need to discover what exactly is causing all my pain - but an IVUS is considered absolute gold standard for vascular diagnosis, which has obviously been at the root of most of my problems from the beginning. So let’s start with that.
I cannot describe to you how deeply appreciative I am for the support and love you have all given me since this GoFundMe campaign started. Although the surgery was a failure, this whole journey has taught me how many people truly love me, and just how good people can be. Some of you people that I’ve never met. That has humbled me massively, and I’m a very different person to who I was before all this started.
So regardless of all the pain and bullshit. I want to thank all of you for providing me with hope and support. I am grateful beyond words.
Love Jak x
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