When lightening strikes three times – Thoracic endometriosis

Dear Mummy, these past three months have been a bit traumatic for us all. You see not long after your last post on your second lung collapse ‘bruises and bluebells’ did you have your THIRD lung collapse after a failed surgery to correct the prospect of having another.

What a collapsed lung looks like
My mummy’s first mechanical pleurodesis surgery in April 2017

Back in April my mummy underwent a VATS mechanical pleurodesis which is a fairly invasive keyhole surgery to abrase and inflame tissue to get her lung to stick to the chest cavity wall. Then four weeks later she woke up one morning and spun round in her bed to get up and a sharp shoulder/chest pain put her into panic mode. Believing that a lung collapse could never happen again, she couldn’t believe that she was part of the 4 percent abnormal cases that could still have another collapse.

What a collapsed lung looks like
Four weeks later she was back in hospital…

That morning Daddy tried to pacify me while she was screaming in pain. He took me to nursery while she collapsed in a heap on the stairs in the hallway and called out an ambulance to take her to the hospital. I think my mummy instinctively knew that it was another lung collapse however she was slightly scared that she couldn’t move and almost seemed paralysed with pain unable to breath. Surely this was her body still adjusting to the surgery that had only happened weeks before?!

What a collapsed lung looks like
Getting ready for another surgey in May 2017

My mummy couldn’t fault the response time. Two ambulance crews turned up almost 4 minutes later. They administered morphine and took her medical history, they too were in shock that she had experienced 3 lung collapses in 12 weeks!! As she was still recovering from surgery my mummy was classed as an urgent case and rushed up to A&E. It surfaced later after X-ray scans and an MRI scan that she had in fact suffered another 20% collapse and the rest of her lung had stuck fast to the cavity wall from the previous surgery.

Catamenial pneumothorax Experience
Waiting with a collapsed lung

The collapse didn’t warrant another chest drain much to my mummy’s thankfulness as it was at the bottom of the lung near the diaphragm and too risky to insert a chest drain incase it punctured the lung. Even an ultrasound scan guided insertion couldn’t justify the extra pain. However the collapse did justify another look by specialists into my mummy’s condition by the respiratory team at CTW at John Radcliffe in Oxford. So while my mummy waited for a transfer she was in the care of the AAU department at North Hants Hospital.

Unfortunately a rather bad experience with rude and unsympathetic staff tarnished my mummy’s stay at AAU in Basingstoke. It also contributed to nearly tipping my mummy over the edge with her anxiety over the incident which had led to her hospital admission. She felt undermined by staff not really understanding what she had been through in the last couple of weeks and pain medication was withdrawn even though she needed it after her last surgery and to deal with the fact that she had another collapse.

It all came to ahead when she was bundled into the back of a patient transfer minibus up to Oxford with no trolley or ambulance staff to help her. Forced to sit in an uncomfortable chair for the hour transfer down bumpy country lanes with the driver not even been told that she was in fact transferring a patient with a collapsed lung who was four weeks out of invasive surgery. In fact the driver was completely unaware of the seriousness of my mummy’s condition due to the poor handover at Basingstoke AAU ward.

What a Talc Pleurodesis looks like
After second surgery to ‘super glue’ the lung in place!

Meanwhile doctors and nurses who took her into Oxford John Radcliffe hospital were completely shocked at the poor duty of care and negligence that my mummy had experienced at the hands of their Basingstoke counterparts. Only commenting to say “well, who did you annoy at AAU in order to get transferred by a minibus and not an ambulance?”

Talc Pleurodesis
My mummy’s second surgery was a talc pleurodesis

It’s been a bumpy ride these last couple of weeks. And after further surgery to ‘superglue’ my mummy’s lung to her chest cavity wall via a talc pleurodesis and the reassurance from doctors that a lung collapse will not happen again, my mummy is now on the long road to recovery.

This time we have an idea of why it keeps happening. My mummy suffers from Endometriosis which was diagnosed 7 years ago. Specialists believe that as her lung collapses kept happening around her period it was due to her hormones and endometriosis tissue causing problems in her lung area. And right enough the surgeons found lesions (which could have been caused by endo) and a 1cm hole in her diaphragm. The condition is called catamenial pneumothorax.

Catamenial pneumothorax
Day of discharge a week later… June 2017

So, week 13 after 3 lung collapses, 3 chest drains and 2 surgeries my mummy is scarred mental and physically, in pain from the surgeries and can’t move as freely as she would like. She still suffers from painful nerve spasms and anxiety that it might happen again. She knows that she’s not strong enough to go through another hospital stay. However the lovely staff she met at the CTW ward at John Radcliffe have partly erased the bad experience from Basingstoke AAU.

John Radcliffe CTW Ward
Her home away from home – John Radcliffe CTW

She’s managing the drugs she’s on with a clearer head after speaking to pain management teams. However the pain in her incision side is still quite painful. What this bad period has taught her is that never take anything for granted. Try and pull yourself out of a hole and accept help from others. These past couple of months we’ve had help off family and friends and for that we are truly grateful.

Catamenial pneumothorax experience
Two weeks later and she’s out and about

Her recovery time is between 6 weeks to 3 months and as a family we are going to try to help her recovery mentally by getting her out more over the summer. This includes going to festivals by having something to look forward too.

Wish us luck!

Love Bella x

3 Little Buttons

31 thoughts on “When lightening strikes three times – Thoracic endometriosis

  1. Oh my god, I can’t believe this has happened to you, you poor poor thing. I really hope you recover soon, sending you lots of hugs xx

  2. Oh my goodness, I am so pleased that the JR managed to do more to help than your previous hospital – I hope that it really is a third and final time for you.

  3. What an awful thing to have to go through! Not just the surgeries, but the treatment you received in Basingstoke as well. Wishing you a full recovery.

  4. It sounds like you’re having a rough time but are hopefully now on the mend! And that your family is taking good care of you!

  5. Third time lucky. I hope that you have a speedy recovery and help to overcome the additional burdens caused by bad hospital management. Good luck

  6. Sending hugs and good thoughts for a speedy recovery to mummy and the rest of the family. Keep giving her lots of hugs and kisses. They help with the healing process.

  7. Oh what an ordeal! This must’ve been awful to deal with and the fear of it happening again must be intense. I’m so sorry that you had such awful treatment at your first hospital, but I’m glad the second were able to make up for it a bit. I really hope that it is smooth sailing for you now and that you have lots of fun at those festivals! #dreamteam

  8. Oh my goodness Dawn! I had no idea how bad things have been for you. And what a brave little girl you are Bella. How did you manage to keep going? I cannot believe how poorly you were treated at Basingstoke. The last thing anyone needs is that happening when you have been so ill. It was lovely seeing you at Bluestone, and fingers crossed it will be onwards and upwards from here. #DreamTeam xx

  9. Oh my goodness! What an awful time your mummy has had. As if being so ill and in so much wasn’t bad enough, she had that awful transfer to Oxford too. I really hope she is on the mend now.

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