Life leading up to my diagnosis
I found an old blog i'd written back in 2018 just before my diagnosis of thoracic endometriosis. I thought it would be powerful to share my thoughts leading up to diagnosis and my experiences that led me to diagnosis. The thoughts and journalling are fresh, at the time.
4th March 2018
So finally… I get to write in the present year (if not a couple of months late)
I had a few January goals as usual:
Take next step in my career
Get fit and healthy
Think about future plans
Veganuary (2nd year running)
So far, so good! I was promoted at the end of 2017 and started my new position 1st January 2018. I am still vegan on the 4th March and have had one meal with fish since 1st January. I am feeling good on it. My bloods are all good and I have good energy.
I also had some mini goals:
Get back to yoga
Read more
Start HIIT training in mornings again
Save
I’ve had a little set back generally with my health over the past year and most recently spent 5 days in hospital (for the first time in my life) with a collapsed lung (pneumothorax). It was scary to say the least so this has affected, work, fitness and travel plans.
So my main aim right now is to get well and then I can get back on track and make some plans for 2018!
LBH x
I mentioned my crazy stay on the AMU ward and wanted to document some of the mad things that happened. I know I was a hospital virgin and had only been a visitor in the past so some of this is probably completely normal to most. It makes me laugh now thinking back.
Day 1 – A&E – Thursday 22nd February
So initially the 13 hours in A&E consisted of a couple of eye opening experiences.
Lady who had taken an overdose and needed mental health support sitting next door to me. She was on oxygen and panicked and seemed to ‘put on’ the breathing difficulty as soon as she saw a staff member. Calmed as soon as they left. Lets call her Needy Nora. Needy Nora proceeded to sleep with the loudest snores ever on a nice bed in A&E and on waking screamed that she wanted to take her clothes off and she was hot (it was freezing). This is pre snow days! She then exclaimed i’m panicking i’m panicking and I haven’t eaten so that they provided a sandwich. The community support for drug users tried to help her and talk to her about why she wanted to end her life and did she want to join the programme again and she refused each time.
I was sat on a chair with a collapsed lung, so uncomfortable and in pain. No food offered to me as I was apparently nil by mouth only to find out at 5pm by the consultant of course you can eat no problem.
The next door booth to me had a prisoner with chains around his feet – lets call him I hate women Jack. He talked to the officers with him about how every woman who smiled at him he thought was a slag. He had little respect for women. He then decides to freshen up with some deodorant spray whilst i’m struggling to breathe on oxygen
An old man with a stick who was very confused bless him and impeccably dressed in a trench, suit and hat. Lets call him Featherweight Frank. He was talking to the prisoner about how he used to be a boxer and then proceeded to fall into the bay nearly coming into me. He kept trying to find an escape route and asking everyone where the exit was.
Another old man with a catheter hanging out and dragging on the floor full of urine in a gown was wandering around. Lets not name him as i’m scared for life he got up and turned around giving me full view of his naked bum cheeks… I did not need to see that.
This was just A&E! So around 10pm I was taken up to the AMU ward. Acute Medical Unit. The nurses were lovely and helped settle me into a bed. It was a little noisy and a poor lady next to me died and my bed was knocked and hit a few times in the process of getting her out of the ward. Needless to say I didn’t sleep that night with that and observations. Lots of people coming and going in this ward it was like Clapham Junction the amount of patients coming in from A&E and going. At 12 midnight my friend Needy Nora arrived in the ward and fell asleep like a light with her extremely loud snoring again… lucky me!
Day 2 – AMU ward – Friday 23rd February
So day 2 on the ward, little to no sleep and now a full ward of people. Needy Nora, two poor old ladies with Dementia – one next door to me and one opposite to the right. The old lady opposite I am not sure what was wrong, and the lady next door to me on the left had an infection so needed to be in. My bestie Charlotte came to see me before work with some magazines and sat for a little it was so nice to see a friendly face.
NBH came in with some food as being vegan and milk free NHS do not cater for that which is understandable. NBH also bought me a Soya latte from Costa – bless him heart and I needed that coffee to get me through.
I saw a lovely medical student who explained everything to me and wanted to listen to my chest as this was strange that I was so well but lung was collapsed completely. She showed me my X-ray from yesterday and explained what it showed. She made me feel at ease. I then quickly saw a member from the airways team and she said they wanted to avoid giving me a chest drain as I was young and fit and the oxygen should work. She explained they wanted to do another X-ray and an MRI scan but that I needed a pregnancy test first as sometimes pregnancy shows in pain for some. (I’d just finished my period so I didn’t think this was the case).
The nurse (we will call her Muggy Mary as she was so rude and mean to me during my stay) came in and threw a pregnancy test at me with no instructions or pot to use and said I couldn’t leave my oxygen. At this stage I’m desperate to go to the toilet and they are ignoring my bell. So NBH goes to try to get a pot and we bump into the doctor. I ask whether she can explain how to use it and whether I can go to the toilet without oxygen. She said yes and explained. I go into the toilet and the nurse Muggy Mary knocks on the door. She says do you know how to do it? I say yes the doctor told me!! Typical hey. Anyway, I finally finish my first ever pregnancy test and it was negative as expected. I mentioned it quietly and she started shouting out it’s negative, it’s negative across the ward! How rude and inappropriate. What if it has been positive?! That’s awful invasion of privacy.
I explained to Muggy Mary that my cannula was not in right and was going to fall out. She didn’t want to re do it so said it was fine. She then tried to get paracetamol through it which then leaked down my arm. I showed her again it was leaking and she said it was ok. My arm then burnt from the paracetamol and had a reaction. Eventually someone took it out for me.
I was given another X-ray to see how the in oxygen was working and the lung had collapsed further. An hour or so later I see another doctor who said that I would have to have a chest drain as soon as possible?! I was confused as the airways consultant said otherwise. I said that this was the case and that I was confused and the consultant had said otherwise and I wanted her to check. I spoke to the lovely medical student again and she said she would check for me as I was so nervous that they were going back and forth on something. The doctor came back and she said she disagreed with the decision but they said not to do it! Phew that was worrying as I was hearing different opinions. It’s scary when your health is left up to many specialists and doctors opinions.
The same doctor struggled with the ultrasound machine as she was trying to work out why I was getting the pains or the main pain I came in with. She kept saying it was broken then finally managed to get it to work and said she thought she saw kidney stones (hmmmm) the urologist and the doctor I saw after said that it was unlikely and I was not a classic case for kidney stones.
NBH being the lovely man he is stayed late with me although he was tired and had been there all day. It was nice to have someone there with me. He bought me clothes and my toiletries so that I could wash and change.
It wasn’t a great night on the ward. The two ladies with dementia started shouting abuse at staff and kicking and punching and scratching them. I got up off of my bed and took my oxygen off and went to sit outside as I was scared and couldn’t sleep. I was in tears. I was sent back into the ward and whilst I was out of bed my bed got swapped and given to someone else whilst I was distressed. I was given a hard uncomfortable bed that could not be adjusted.
I was so upset I packed all of my bags and said I wanted to move to another ward/bed. They said I was at the top of the list?!! Hmmm nothing happened all weekend so I doubt it very much. In the end the ladies calmed down but it was a scary experience the air con was on and it was freezing I was so cold I slept in NBH's hoody and my night clothes and had two blankets on.
I could not wait for morning to come to see NBH again.
Day 3 – AMU ward – Saturday 23rd February
Mum and NBH came in to see me. NBH was worried about getting me a coffee as Costa had closed for refurbishment (just my luck) he found one from The Dining Room and it was lovely. He bought me food and more clothes and ear plugs.
I was a bit ratty as I hadn’t slept and people completely ignored me most of the day. My lovely best friend Ruth came in to visit with grapes, non dairy goodies and some beautiful bright tulips to cheer me up.
NBH left earlier as I was tired and I had my ear plugs so I thought I was all prepared for a nights sleep. Again the night time experience was awful the two poor ladies with dementia started kicking off around about the same time. The earplugs did nothing for me The poor nurses I really felt for them. I sat outside and they let me this time to calm down and stay out of it. I stayed out for 30-45mins without my oxygen and started to feel a bit woozy and light headed. So I had to brave it and go back in. Eventually they calmed again but I struggled to sleep again just kept thinking and waiting and worrying.
Day 4 – AMU ward – Sunday
NBH came in again to see me and got me my usual morning coffee and some breakfast. My gorgeous best friend Siobhan came to visit with a cute card and some goodies (sparkling water – my fave) to keep me going.
Mum and dad came later to see me and stayed for a bit which was lovely again to see them. I was so worried again about the night time. It was much better and calmer with less people in beds and I was so tired I slept a few hours.
Day 5 – AMU ward – Monday
NBH without fail came in again and got me a coffee and had made me my breakfast and lunch. I was so pleased it was a Monday! I hoped I’d see a doctor to find out what was going on with my lung. There was a lovely student nurse on the ward from Ireland who was so sweet and said she would be looking after me today.
I got taken to X-ray again and for an MRI on my chest. The airways consultant came to see me in the afternoon and explained that my lung had mostly re inflated and she talked about how they would normally treat it and that I would be referred to a thoracic surgeon. They wanted to do a CT scan on my pelvic area but luckily I already had an appointment privately for this so I explained and was discharged later that day.
I went to see my doctor the next day and was signed off for just over a week. My ultrasound on my pelvic area was fine and my cystoscopy on my bladder was also all fine.
I had an appointment with the thoracic surgeon and he explained as it seemed as though I’d had these episodes if not on a smaller scale a few times over the years it was important to have surgery to prevent it from happening again.
I booked in for surgery on the 28th March 2018 (my late grandads birthday) as I thought it would be a good day. I’m petrified by I know it’s important I get it done.
I’ll be having a VATS Bullectomy and Pleurodesis with a Pleural abrasion. This means they find the holes in my lung (cut any blisters if any) staple the holes/seal them shut and take a biopsy at the same time.
They then make the chest pleural membrane stick to the lung pleural membrane to stop it from happening again. I’ll be under general anaesthetic for the first time.
I’m sure it will be absolutely fine! I’m just worrying over the unknown.
I’ll keep you updated on my progress!
LBH x
I have added some photos a few months before my full lung collapse. It just proves how tough invisible illness is to identify in others.
Comments