03/06/2024
3rd June 2023
This is an indepth update so it's a long read if you want to know all the facts then kerp reading.
Otherwise thankyou for your very kind donations and support. Please Keep Sharing... thankyou xx
And here is the link if you would please consider making a donation.
https://gofund.me/7b128781
We have been to Leeds Infirmary (another hospital to add to our list) today to speak with the Liver specialists and cardiac anesthetist to discuss the possibility of a procedure under full general anesthetic to block the shunt (a rare extra vein). This is known as a porto-systemic shunt. Its like an extra vein leading directly into the main vein that feeds blood into the heart from the liver. Think of the Liver as a filter... the blood should flow through that to metabolise and store important nutrients, vitamins and kick out the toxins. The blood passing through the shunt is not filtered this is what has caused the PAH (lung disease) and therefore heart damage etc. If they can sucessfully block off this shunt then her blood should flow through the liver then to the heart like a normal healthy person. IF... completely successful it should HOPEFULLY stop the PAH from getting worse and relieve the pressure on her heart and lungs or at least really slow it down enough to have better quality of life and HOPEFULLY live past her 50s. The procedure is done through the Vena Cava vein in the neck and the vein in the groin. They will place a stent into the main liver vein (portal vein) to open it up more and this will also block off the shunt at the same time. This is a tricky procedure. They start by inserting a catheter into her heart to accurately assess pressure and damage to the heart, then insert a balloon into the portal vein ( liver vein ) to temporarily block the shunt for about 20 mins so they can assess the pressure in her heart. IF all is good then they go ahead with the stent. If not good they will try to block just part of the shunt to see if that works. Which, over time, can be gradually increased until hopefully the Portal Vein is then fully open and the shunt is completely blocked. She will be put on Warfrin (blood thinners) for several months then Asprin for life in case of any clotts. Although this sounds like a small procedure, it is extremely risky for Beau to have anaesthetic because of her heart and lungs and the possibility of creating more pressure when they block the shunt. She has had another ultrasound scan today and they will have further discussions with her heart specialist at Freemans to discuss the risk.
Without this procedure Beau's lungs and heart will continue to worsen as well as the problems caused by the liver not fully functioning... toxins in her blood stream creating more complications to other organs including the brain. This procedure has been carried out on adults before but because of how rare it is there isn't a lot of case studies to accurately weigh up the risks versus benefits. Also a persons life expectancy is unknown because the procedure hasn't been around long enough to know the statistics, also not enough people with this very rare shunt for them to give ling term statistics. It's all IF's and HOPEFULLY's but without it, her prognosis isn't good. During the procedure there is a 3-5% chance that Beau could go into cardiac arrest and also a small percentage of that 3-5% it could be fatal. It will be 3-6 months when this will be done IF it is done at all. So for now its just the usual routine... medication, blood tests and monitoring with the odd trips to A&E when she has chest pains. She is booked in for consultation at Great Ormand Street Hospital London mid June to check on her lungs.
So please keep the donations coming in by sharing this with friends and family as it is a massive help. Even simple things like having fish n chips and an icecream down or lical Redcar seafront cost £50 yesterday as a treat for Beau.... then today fuel to Leeds and a sandwich and drinks for lunch, then more drinks at 5, then we went for a carvery at 8.30pm when we got back to Teesside because we were all tired and hungry. We left for Leeds at 12.30pm and got back home at 9.30pm... a long stressful tiring day because we had to wait 3 hours to get the scan. So without your donations they couldn't afford those things, it just takes away the extra financial pressure and stress. So thank you, we appreciate it so much
Regards
Arlene ###
