I am stage 4 end of life COPD, and there’s no further treatment that I can have. The only way to save my life is a double lung transplant.
I must take you back to 2016 I was diagnosed with asthma. I started to struggle with my mental health, I was an accountant and I started to sit at my desk staring at the screen and I had completely forgotten how to do my job, and then came the day that I had a complete melt down and lost my job.
I lost all my confidence and became a prisoner in my own home, long story short…my husband started plying me with alcohol, and I began to self-harm with my prescribed medication, until one night in 2017 I did my usual self-harm after being plied with alcohol. I called the Samaritans (as I did quite often) and they realised what I had done, I was persuaded to give them my address and they sent for an ambulance. That night I walked to the ambulance the last thing I remember vaguely was voices stating my possessions. When I awoke two days later, I was in a cubical with a nurse, and was told that I was in intensive care after having a cardiac arrest. This was 2 days before my grandson’s 3rd birthday. This was the turning point and I never self-harmed again.
I had involvement/help with many organisations. I did suffer with panic attacks, and on several occasions, I had emergency hospital admissions to hospital with respiratory issues. Two hospitals in Wales and one in the Midlands diagnosed me with anxiety, but I know my body and know the difference between what I was experiencing and panic attacks. I once visited my GP my oxygen levels were down to 66%, she panicked, by the time the ambulance arrived at the surgery I had already had a complete tank of oxygen. Then once when visiting my parents, I had a severe asthma/breathless attack and my mum sent for an ambulance and I was admitted to hospital.
Whilst in hospital I kept telling the doctors that no-one was listening to me and it wasn’t panic attacks, this time they listened to me, I had the most amazing team of doctors and consultants. I was admitted for 10 days when lots of bloods, x-ray, scans and tests were conducted, and I was diagnosed with asthma/COPD overlap syndrome and prescribed several more medication. The hospital agreed to continue with my care despite living in South Wales, knowing how desperate I was to relocate back to the area.
MIND started working with me, in October 2018 with the assistance of the police, I left my husband of 30 years and my home in Wales….I was scared but free! After a few days of battling with the council they placed me in Emergency accommodation.
I was allocated a flat on Christmas Eve, it was awful. no carpets or flooring, water running from the flat above through my wet room light (therefore it was condemned for 6 months) There was mould in every room which was detrimental to my health.
I divorced my (ex) husband and relocated to my hometown, closer to my family.
My breathing really started to get worse, and I was having more and more admissions to hospital, and was having to use my nebuliser a lot! I was diagnosed with Alpha-1 antitrypsin deficiency, which is a generic condition, Alpha-1 antitrypsin is a protein made by the liver to help protect the lungs, I’m a ZZ, (two bad genes) which means my lungs have no protection.
My lung capacity dropped down to about 30% and I started to have more and more health issues and suffered from malnutrition and was just skin and bones, my consultant stood by my bedside and told me not to even consider transplant, as my body was far too frail to undergo any operation, yet alone recover from it. She left me sobbing on the bed, just thinking about making some memories for my very young grandchildren. I’ve missed out on so much with my grandchildren, their special moments because I’ve been hospitalised, and real feel like I have let them down.
I agreed to a feeding tube, I would be connected up to my feed overnight that would give me extra calories and nutrition, and to eat what I could to get to a healthy BMI
I continued to have more and more hospitalisation, whilst in hospital March 2022 I remember asking for some meds, but the next thing I knew I was waking up in Critical care, I had gone into respiratory failure. This started to happen more and more. I was diagnosed with type 2 respiratory failure, which is when the lungs do not extract the carbon dioxide from your blood which is deadly if not treated quickly. I cannot have any oxygen treatment now as this would be fatal to me. This has become very regular. The paramedics are called by my lifeline, and they are on an 8-minute response to me, by the time I get to hospital I am grey/blue. It got to the point that I would only be home between 13 hour and 2 days before I was back in resus, on the positive side though I do recover quite quickly, therefore my other organs are not being damaged due to lack of oxygen for too long. As I live alone it’s terrifying and depend on my lifeline. Due to the frequency of this happening,
I now have ventilators at home which I spend about 16 hours a day on. I get breathless from everything I do, even going to the bathroom! I now have carers to assist with personal care and domestic chores.
In May 2022 I saw my consultant, she realised how hard I had worked on getting as healthy as I could and I had reached my BMI, she referred me to the Lung Transplant Team. I had to have a few primary tests conducted, one being a scan of my bone density, which confirmed I have osteoporosis, I felt like I had fallen at the first hurdle! I have an appointment in January 2024 to commence some bone protection treatment.
I was accepted by the transplant team for some preliminary tests and following the results, I was admitted for 4 days of full screening and tests, cameras into both sides of my heart which was a bit scary, and all the air flow tests, which shown that my lung capacity is now at 0.7lt and psychological screening. At the end of these tests the consultant came to see me after a joint review of all teams involved. He had to tell me all the risk factors, and how they decide who should be offered a place on the national lung transplant register, there’s so many criteria’s that need to be considered, it’s not a work your way to the top of the list. As they had seen how hard I had worked, how positive and cheerful I am and I’m quite young to be needing lung transplant, they offered me a place on the national transplant list in September 2022 and have 3 monthly reviews to ensure that I am well enough to remain on the list.
I still have many respiratory failure admissions, I was then told that a Respect form was in my file with DNR (do not resuscitate) conditions, I am now terrified every time I’m breathless, which is numerous times a day, praying that today isn’t that day.
A decision was made to address my condition from the asthma side, is it my asthma causing my COPD exasperation? and hence the respiratory failure. One of my consultants was fearful that the numerous admissions could have a detrimental effect of me remaining on the transplant list. My case was discussed at several meetings with many high consultants within this field, and it transpires that I have a rare sever type of asthma, Eosinophilia Asthma. It was agreed that I should receive a very expensive treatment for this, Benralizumab Injections.
I have an extensive list of invisible conditions, fibromyalgia, spinal damage (I have a neurostimulator), glaucoma, osteoporosis just to name a few, and even the nursing staff state that they would never put my medical file against me, as I’m always so bubbly and positive.
As I have been on the transplant list for almost a year, I feel the clock is ticking and am looking down the route of living donors I’ve been researching this route, which would be as a private patient, not NHS. Firstly, I need to see a consultant, to establish how this process is addressed as it requires two compatible donors.
I am looking for kind-hearted people who are willing to give me a donation to help save my life. My financial situation is not good. I am unable to work anymore, and my income is from benefits, but some of my benefits are suspended when I am an inpatient at hospital. I am living hand to mouth, and had incurred debts from setting up my new home, which are now being managed by an IVA, which I am ashamed about, but I have no alternative option. I will be extremely grateful of every penny donated, to help my journey to a new healthy life with my grandchildren and family.
I have no idea how much I will need to raise in total, until I ha a consultation with a consultant, I have discovered three consultants who conduct this life saving procedure, but currently I do not have enough funds for the initial appointment which is in the region of £300+.
If you would like to donate please use this secure link
https://www.paypal.com/paypal.me/jue273
Kind regards
Jue