MY MAN
My gorgeous amazing man. Why you?!
28th of March 2018 out of nowhere his Left Lung collapsed – He spent 8 days and 8 nights in Hospital and he was only 28!
15th of July 2018 his Right Lung collapsed and he nearly Died waiting an hour for an Ambulance – He spent 6 days and 5 nights in Hospital and he is only 29!
The love of my life for 10 years and 2 months! I cannot handle another thing happening to him! He does not deserve it! Why him?!
Surgery in London is necessary. It breaks my heart that I will not be there with him. I cannot drive and I cannot afford to stay in London for the 3-4 nights he may be there. At this time I am not even sure how we are going to get him to and from surgery in London but we will figure it out.
One lung collapsing = Spontaneous Pnuemothorax. This can happen to a healthy slim tall male in their 20s. There is then a small risk of it happening again to the same lung within 3 years and again in their 60’s.
It is rare for someone to experience a Pnuemothorax in their other Lung only a few months after the opposite one collapsed. It’s not unheard of for it to happen to the same lung.
So why is this happening? What is the cause? Well we don’t know yet.
A CT Scan has been booked for a couple of weeks time when the Right Lung has healed more. Then we are waiting for his consultation with the London Surgeon to discuss what surgery he is having.
In the meantime he is at high risk of both lungs collapsing!
I am terrified. Heartbroken is an understatement. I still feel in shock. It’s not about me I know but I am struggling to hold it together. I want to break down, hold him tight and never let him go. I do not want to leave him for a moment. I want him close to the hospital. I’m a helicopter girlfriend right now.
I did some research on the British Lung Foundation website and it indicates that a Second Pneumothorax tends to mean there is an Underlying problem like Lung Disease or COPD or something!!
Really?!?!?! Is that the type of news he has coming to him after experiencing 2 failed organs in 3 months? God help him please!
Each time he was admitted to A+E he was rushed into the Resuscitation room.
They do a procedure called Aspiration where they make an opening in his chest and remove 2.5 litres of air with a Syringe. The air is surrounding his deflated lung keeping it crushed and deflated. After this they wait for 4 hours whilst he is on Oxygen. Once the 4 hours is up they X-ray him in the hope his Lung has inflated. If it is inflated he can be monitored for a few hours and go home.
Neither times has it worked for him. Therefore the second procedure is necessary. A Chest Drain!
The hole that was used for Aspiration is made bigger to insert the Tube. The tube leads down into a Tub which is less than quarter full with water. As long as there are Bubbles coming out of the tube into the water there is a Hole in his Lung. Once the bubbling Stops the hole/holes have Closed and the lung will Inflate.
One of the most frustrating moments was when we learnt that an x-ray cannot show holes. So we did not know how big the hole was, how many holes there were or where the hole was.
As I said previously the first time it took his left lung 8+ days in hospital. Then when he was discharged his lung was only partially inflated and a third full of fluid – said to be Blood. For 4 weeks he went back for x-rays with his results remaining the same.
Finally they saw his lung was inflated and had less fluid in it. He was waiting for a referral for a CT Scan to see if they can see whether there are any underlying causes. At this time we were quite confident it was just a one off spontaneous pnuemothorax.
Little did we know he would be back in hospital 3/4 months later with his Right Lung. This time it was worse however it did not take as long to stop bubbling. He has a CT Scan due in a couple of weeks and we are expecting something to show. There must be an underlying cause. As much as I want to know I am terrified. He has been so strong and trying his best not to worry at the moment. He is home concentrating on recovering whilst he waits for his CT Scan, appointment with the Surgeon and Surgery.
I was with him every day he was in hospital from the start to the end of visiting hours and when I was not with him I was messaging him until he managed to fall asleep. It is so sad he will very likely have to face this Surgery alone, out of town, in London.
He has been so strong and amazing I know he will get through it. I’ve watched him go through all of the procedures awake and I do not know how he’s allowed them to do any one of them. I’d be running out of there screaming.
His family were not present apart from his Nan. My parents were on Holiday this time. It was just me and him and we got through it. We will continue to get through anything together. He is my world, my heart, my soul, my everything.
The Respiratory ward they moved him to both times seemed to only be filled with patients no younger than 70. He got on with them wonderfully, lifted their spirits, listened to them, encouraged them, laughed with them, he is a joy to have a round (but i already know that). The patients families would look at him all concerned because he was the youngest. One lady assumed he was a victim of a stabbing, no one we spoke to could believe he had a collapsed lung let alone 2. The nurses have been wonderful.
The first time he experienced a Pneumothorax he felt awful for a week or more but shrugged it off because he hates doctors appointments and didn’t want to take time off of work. After a few days of feeling like he had a chest infection, bad ribs and shoulder his GP referred him to the hospital for an x-ray.
He was allowed to leave the hospital after the x-ray and wait for his results via his GP. They saw the x-ray after he left the hospital and contacted his GP Surgery to get hold of him to tell him to return to the hospital immediately. He had forgotten to update any of his contact details with his GP Surgery because he rarely ever used them. This meant that they couldn’t get hold of him on his old phone number.
The following day, still unbeknown to us, they had sent the police and an ambulance to our old address and were ready to knock the door down! They then got through to his Mum on the phone who gave them his up to date contact details.
They were frantically looking for him because they assumed from the results of his x-ray that he would not be able to breathe and they had a duty of care to check he had not collapsed unconscious somewhere.
His x-ray showed only 1 inflated lung.
He woke up that morning to the Police on the phone telling him to go straight to the hospital but wouldn’t tell him why.
He phoned me just as he was leaving for the hospital. I was at work so I jumped into a friends car and we arrived at the hospital at the same time. We stood at the Hospital reception for an hour whilst the receptionist kindly tried to contact his GP to find out the results of his x-ray and why the police were after him. His GP surgery did not answer the phone for close to an hour then we got the shocking news. He was admitted there and then.
How on earth did he Work and go about normal activities in that state.
We thought it was a freak rare occurrence. Then 3/4 months later his opposite lung goes. Unlike last time within 10 minutes he is in excruciating unbearable pain and he loses his breath and struggles to breath. I call an ambulance and it took an hour to get to us. Incredible considering where we live is the main road for the emergency services and they go down it with their sirens on dozens of times a day. But I was told that the ambulance service cover several counties not just ours.
The ambulance services hung up the phone on me at one point because they had to take other calls. They told me to call them back if he gets any worse. I cried that he is getting worse. At this point an ambulance was not on route. He was taking ridiculously short breaths and was not responsive, he could not move himself or feel like he could be moved by my brother in law into the car because he had already fought to catch a breath for 40mins by this point and thought he was dying.
I let the girl hang up on me because she honestly did not understand the seriousness of his situation and was so busy she had stopped listening. I phoned straight back and got through to a guy and again explained that he had a collapsed lung a few months back and now he feels like they have both gone. The operator put him straight to the highest priority but there was still no ambulance available. Once one became available they got from one side of the town to us within minutes.
As we know our Emergency services and NHS staff are stretched thin with Cuts left right and centre – well that Sunday it could not have been more evident. I am now terrified of relying upon the emergency services in the case of another emergency.
HIS WORK
We will need to wait to find out what the future looks like for him. As it stands he has been working full time for the past few years at a company who gave him compassionate leave for the days he was in hospital but now it is SSP whilst he is home recovering, going through tests and waiting for surgery. I may need to see if we can get help from the government but I know how difficult they are if one of us has an income.
I then wonder when he is fit and well whether a career change is necessary due to stability but most of all health. I do not believe he should be doing a manual job. He will need to look into getting work in an office perhaps or outside in the fresh air.
Leaving a job for a new one is always risky. Especially with health problems. You need a bit of time under your belt within a company before they provide you any support. However it is a risk I think he needs to take sooner rather than later. Returning to a manual job isn’t a good idea. At first he will be on lighter duties but that will only be temporary. I know he wont want to leave his current occupation either so it is all very unfair.
HOME
We need to move home. This old Victorian flat is terrible. I am fighting damp and mould all year round and it is a full time job. You can imagine how anal and OCD I am being now I know he has problems with his lungs and it’s too much to stay on top of or to be satisfied with.
I literally want everything to be sterilised and new. There is too much work to do if we stay here and 1. we cannot afford the work 2. he cannot do the work to the house 3. the landlord refuses to do anything to help us with anything – literally!
If we were to stay I need the back of the House to have a professional add a Damp proof course – I need the carpets pulled up and Damp proof stuff put down under new flooring and to repaint the walls where the damp and cleaning products have destroyed all of our hard work. I need a new bed and mattress. New kitchen cupboards. I have thrown away so much furniture and clothes because the damp touches it and destroys it like wild-fire. Are we living on a damn swamp?
Makes me feel so dirty. Makes me feel like I cannot protect him. When in the truth of it I am one of the cleanest people I know. Nicknamed Monica from Friends. I clean everything top to bottom and inside out, literally.
So moving home is on the top of our To Do list once we return to work and can afford to.
HOME UPDATE
Whilst typing this I received a Text from my ‘Estate Agent’ the Landlords brother. They want us to sign a new tenancy agreement this week!
They are changing the name of the Letting Agency and would like to increase our Rent by £85 a month making it £685 a month starting this month!
We cannot afford it. For the reasons I have already mentioned above. The estate agent is really pushing for a date and time to meet over the next week to sign this agreement. If we decline I am positive he will give us our months notice.
So yes, I may have wanted to move home but not within the next month. We have nowhere to go, no savings and no back up plan.
If I sign the tenancy we will struggle to pay for everything and we will get ourselves in a mess. We will not be able to save to move out as quickly as we need to. I have no idea how long he needs to recover but I will make sure he takes the time required without this added pressure – somehow.
I may need to speak to my parents and see if there is any possibility of us moving in there for a couple of months to give us the chance to save and move to a suitable home.
If, and that is a very big if, we can move to my parents I then have the concern of who is going to help with the heavy lifting at the time of the move. Normally my man can do everything. My Dad can’t help due to poor health. I’m hoping friends/colleagues will make time for us.
DAD
Then whilst all of this has been going on my Dad has suffered with Strokes. This is new. This is on top of all of his Unstable Angina attacks over the last few years and recently being diagnosed with Parkinson’s Disease. He isn’t even 60 yet.
MY WORK
I am taking some time off of work. This stemmed from me asking my manager if the work can be allocated fairly and equally across the team considering we get paid the same. I have always had the largest workload by far. This request resulted in a meeting with 3 managers and them discrediting everything I do, stripping me of my duties and telling me to take time off. They also said some disgraceful things that I cannot repeat here in fear of it jeopardising my job but HR are aware and supporting me.
My management wanted me to go through Occupational health before I return to work because they want to put it on my Mental Health/Chronic Illness rather than believe what both my Doctor and I have already expressed – I am stressed at work because of work.
My management do not want to make changes within the Team. That is fine but what is not fine is them turning against me and putting me through all of this after a simple request to be treated fairly. Just what I need – to be scrutinised by a third party doctor on behalf of my company.
An important thing to note is I accepted this Job because I was told I would be paid more. Therefore I accepted this workload in the belief I would be on more money. The money did not happen. Too make up for that I was told they would train me enough to give me the skills I need to leave for a better paid role but instead they have left me drowning in work whilst giving team members, who all have smaller workload, all of the opportunities. So I simply asked that the work is allocated fairly so we have the same time to get equal opportunities and BOOM!
I saw the Occupational Health Dr today. He is going to report back to my company what I and my Doctor expressed. I am stressed because of work. I am fit to work but they need to listen to my concerns. If they do not listen to my concerns future absences are likely. I do not need prescription medication. Thank God!!
My supervisor has been pushing for months that I go to the Dr and get anti-depressants instead of accepting that changes need to be made within the team. This was reiterated by my managers manager when he knows nothing about me, he only knows what my supervisor and manager have told him.. Well Hip Hip Hooray not only my Doctor but also their Doctor have both confirmed that I do not need medication and work need to do something about the workload.
Next step is Mediation with HR, my management and myself next week. Then I return to work the same day.
It’s going to be hard to put the way they have behaved and what they have put me through behind me. I’m not fake in the slightest and unfortunately I cannot wear a smile on demand although at times I wish I could. I need to return to work with the right attitude. I wish I had a chance in my time of to heal and return feeling relaxed but I am still pissed off, hurt, upset and do not want to be there.
The plan was to look for another job but with all that has been going on I had to put that on hold. It is also a risk to go into a new job when I need stability. So I know I need to just suck it up, go back and let the haters hate.
SUMMARY
2018 sucks!
