3rd Lung Surgery, Endo removal & diaphragm repair

February 2021

Lungs & breathing 🫁 two of many things we take for granted!

Since having my first lung collapse on the 18th February 2018, I hadn’t really given my lungs a second thought before. You are born breathing and you wake up breathing each day (if you’re lucky like most of us) and our lungs and diaphragm work hard each and every day to allow our bodies to do many incredible things.

I hadn’t realised endometriosis could cause so much damage to now ALL organs in the body and there is no cure!

Thoracic endometriosis is a form of endometriosis where endometrial-like tissue is found in the lung tissue and/or the pleural membrane.

Diaphragmatic endometriosis occurs when tissue similar to endometrial tissue grows into your diaphragm. Your diaphragm is the dome-shaped muscle beneath your lungs that helps you to breathe. It usually affects the right side.

In my case the tissue grew full thickness through my diaphragm and caused holes during my period air would escape through the holes and build up over time to collapse the only soft organ in that area my lung.

How does it feel? Stabbing shoulder pain, tightness around the chest as though a belt has been tightened or someone is stepping on your chest, breathlessness, bubbling/crackling when you take a deep breath, sharp abdominal pains where air trapped in the chest cavity tries to escape, dizziness, pleuritic inflammation causes the referred pain to the shoulder.

My hope is that I can bring more awareness to others suffering similar problems or seeking diagnosis and to help me move on from a long battle following several surgeries and ongoing chronic pain. It is also to show fellow warriors that you can still work and have successful careers and lives. It might not be easy but it’s possible.

24th February 2021

Pre-op

In February 2021, I went in for my pre op for my 3rd lung surgery. The aim of this surgery was to have open surgery through my back to access my lung and diaphragm. Remove any endometriosis, ensure that my liver and lung were clear of endometriosis and repair my diaphragm with a biological mesh.

Journal entry

It's my pre op appointment today. My first time i'be been out of the house in 12 days and such a beautiful day too 🥰

✅ CT scan with contrast

✅ Covid swabs

✅ Blood tests

✅ MRSA swabs

✅ ECG

✅ Blood Pressure

✅ Lots of forms and questions

So that’s done now and all set and ready for Saturday’s operation (medically) anyway.

Back to self isolating and waiting for my Covid swab results 👍

25th February 2021

Journal entry

Things were going so well then a lack of compassion and empathy left me upset and a little stressed 😥

I think the enormity of the surgery and trying to get everything prepared with little time to rest is taking it’s toll.

I had an incredible virtual relaxation session with a good friend, doctor and hypnotherapist to help relax me and bring me back to what’s important. Preparing mind and body for Saturday’s surgery and being kind to myself.

It’s ok not to be ok all of the time!

26th February 2021

I go into surgery tomorrow morning and am thinking positively about the future and the quality of life that it will bring. Through all the uncertainty that surrounds an operation, the current times and inherent risks... I feel that that uncertainty is worth the risk to improve on my quality of life ten fold.

Positive vibes ahead of tomorrow and an early night for me!

27th February 2021

Surgery Day

4am wake up (although I was awake at 3:40am...)

Bags packed! Let’s do this!

Positivity, end goal, i’ve got this.

28th February 2021

Thoracic surgery complete...

💛 Endometriosis removed

💛 Pleura checked

💛 Liver checked (no endo)

💛 Diaphragm mesh repair

Very long night with observations every hour on the hour! I possibly slept 10mins every hour.

Thank

So tired today...

I was a little sick last night and a lot sick today. I can’t seem to eat or drink anything without being sick!

I managed to get up and walk on the spot!

My physio said I was determined 💪

What I didn’t mention was I threw up straight afterwards (no warning) they say this is normal?! 🤮

1st March 2021

I am still in ICU, during the pandemic so no visitors, just me and my ICU nurse on this floor.

Surgery complete...

💛 Endo removed - Diaphragm

💛 Repaired - Diaphragm mesh

💛 Checked - Liver - Clear

💛 Checked - Pleura - Removed

💛 Diaphragm - Repositioned

2nd March 2021

Yesterday was a tough day of ups and downs. Lots of sickness, problems with my blood pressure, talks about a blood transfusion due to the amount of blood I had lost during surgery.

As soon as the pain relief was changed to one that didn’t make me so sick and I had a chance to rest I was feeling much better and the day went from bad to good!

It makes such a difference when you have amazing nurses who really care about you and know what’s best for you.

I’m struggling a bit with the wires on my neck they have been quite sore.

Rest, less sick and moving more with the physio made my day so much better!

📍Sickness reduced

📍Easier to eat now 🙏

📍Pain relief changed

📍Epidural stopped this - AM

📍X-Ray looked good - Mon

📍One drain removed - yay!

📍Physio - walks & breathing

📍Mobility much better

📍Watching Superstore (NFlix)

3rd March 2021

Morning meditation first thing combined with my deep breathing exercises made me feel great to start the day 🧘‍♀️

However, after too much exercise yesterday and lots of pain last night once I’d got up and got washed and dressed I nearly face planted my breakfast with exhaustion!

It’s that little reminder that recovery is not linear🎢

Good days, bad days and some good mornings, bad afternoons, then good hours and bad ones too!

Surgery update number two...

📍Toilet trips unaided

📍Washed & Brushed teeth

📍Meditated at 6am

📍Deep Breathing exercises

📍Felt overwhelming 😴hit me

📍Felt sick again 🤮

📍Medication changed again

📍Central line wires removed

📍2 x chest X-ray’s - Good

📍2nd drain removed - whoop!

📍Physio - walks & stairs

📍Chest opening exercises

📍Watching Superstore (NFlix)

There’s nothing like a good cuppa when you’re away from home.

Moved from ICU/Critical care this evening to my room so hoping I am on the way up ⬆️

4th March 2021

Pain is just a lesson...

I have had some of my clearest paths and experiences open up during and post recovery from surgery.

It grounds you, it makes you fearless, it makes you grateful, it makes you want to empower and support others.

Each and every surgery for me has taught me lessons, some tough, some really hard but many essential.

What a day already!

After a very painful uncomfortable night...

💛 Had an incredible shower

💛 Washed my hair

💛 Put on some light make up

💛 Contacts in 👀

💛 Saw my scar for the first time

💛 Walked around the ward

💛 Tackled flights of stairs x 2

💛 Breathing Spiroball session

💛 Ate breakfast

💛 Meeting with thoracic nurse

💛 Saw 2 x doctors 🥼

Feeling pretty wiped out now!

I keep waking up at 5:30am and peaking too early then feeling wiped out!

I was told this morning by the staff nurse that everyone has been talking about me and my progress (in a good way) I know it’s been an up and down journey so far but definitely taking steps forward 🙏💛💛💛💛

5th March 2021

It’s Friday!

6 days post thoracotomy and lung/diaphragm surgery (I keep being told it was major surgery should I be worried?! - at least that explains the pain!)

💛 Feeling positive

💛 Had another great shower

💛 Packed my bags

💛 Dressings removed

💛 Waiting for chest X-Ray

💛 Waiting for thoracic nurse

💛 Thank you cards written

💛 Feeling a little woozy 🥴

I'm coming home today yay!

Thank you so much to all of you for your support, care and kindness during this scary but necessary time.

Thank you to the ICU nurses, doctors, my consultant, thoracic nurse, and every single person who has been in and out of my room helping me before, during and after my surgery.

Here’s to the beginning of my future 🫁

Forever grateful 🙏❤️

So nice to be at home in my own bed. I’m shattered beyond anything I could have imagined so am going to rest now!

Real recovery begins tomorrow 💪🙏💛

The pugs were so excited to see me and whilst NBH restrained them they gave me lots of love and kisses and I’ve never seen their tails wag so much.

6th March 2021

Such a good feeling to be back home after 7 days in hospital!

I slept for a good 8 hours last night! I only woke up a couple of times in the night in pain. Since my surgery it’s probably the most I’ve slept in a while 😴

Still feeling extra wiped out and although showered and dressed i’m back in bed taking it easy.

I have been told how important it is to walk 2-3 short walks a day building them up to less frequent but longer walks over time.

Breathing exercises, physio exercises and of course the obligatory opioids and paracetamol. I am trying not to take any of the fast acting one as that is a top up and made me feel very sick, unable to eat and dizzy in hospital so that’s on stand by should I really struggle with the pain.

Healing...

When I was transferred from ICU to the main ward the nurses were pleasantly surprised but speechless (one of the staff nurses said) to see how far I had come from the reports they were getting from ICU. They hadn't thought that i'd make it up to the ward.

It was a good feeling to go from strength to strength on the ward. Having a shower and washing my hair, taking several flights of stairs and increasing my lung capacity on my Spiroball breathing apparatus. It felt like there was something in me just fighting to be well and get through and get home.

My last day on the ward was one of my toughest, the enormity of everything I’d been through, the pain and the exhaustion and how emotionally draining it can be.

I had a bit of a wobble and a cry! However waking up this morning and being with my husband and our two dogs makes me feel so grateful and positive for our future 🥰🙏❤️

LBH x