I’ve never been this ill before even with having Muscular Dystrophy

It’s now been over a month since I came out of Milton Keynes university hospital after spending 3 weeks In their care, it’s been a struggle adapting back into home life, finding the energy to be stood up and being put into my chair has been hard work let alone getting washed and dressed I was ready for siesta!! But I’m jumping to the end of my recovery.

So sit back get comfy and I’ll paint you a little picture as this maybe a long one…Sorry!!

How did I end up so ill

It’s that time of year cold, wet and depressing – yep January!! but then most of the year is like that, everyone was coming down with that cold that was floating around everywhere including hubby, for some reason when ever my husband gets a cold I never catch from him it’s always someone else that generously passes it on and that’s just what happened on this occasion, feeling my nose running away from me and knowing we had a family wedding to go to the following weekend I was determined not to be full of cold snotting on everyone, so I doubled up on my Aloe Vera in the bid to get rid as quickly as I could but I started feeling it on my chest, knowing that it could quickly turn into a chest infection so on the 22nd January I gave my GP surgery a call asking to talk to a doctor that same day.

‘Now I don’t know how everyone else’s GP practices work, but I don’t have just one doctor that I see plus it’s near impossible to get an appointment without knowing you’re going to be sick 3 weeks before your sick’

Having Muscular Dystrophy it can affect different parts of your body, respiratory just being one so coughing for me is very hard I always sound like im faking it, hubby’s always joking with me saying is that it you can do a better than that – surely!!

Waiting for a call back from the doctor always feels like forever when you’re not feeling great, thinking after an hour ok there not calling anytime soon so I have time to nip to the toilet ‘nope’ never learn as soon as your bum hits that toilet seat you hear ‘ring ring’ total eye rolling moment, missing the first call I called back, time to get comfy and wait for the doctor to call again this time I’m not moving no matter what!!

Call back

Speaking with the doctor I told him how I was feeling and that I could feel it hitting my chest explaining that my body doesn’t work the same way as everyone else’s plus past years experience of chest infections I’d need 10 days worth of strong antibiotics, the prescription I got 7 days of amoxicillin, nothing new doctors not listening and their lack of understanding a disability because you’re not their permanent patient. So Just getting on with it like I normally do in the hope that I got it quickly enough that 7 days of antibiotics would be fine.

A week later

Family Wedding over Antibiotics finished the lack of sleep from coughing so much over the weekend was now taking it toll, my lungs where hurting from the coughing so I gave my GP surgery another call Monday morning (5th Feb) to be told sorry the call list is full we don’t have any appointments left either, I tried everyday unable to get anything even explaining that I had Muscular Dystrophy, then finally on the 9th Feb explaining once again to the receptionist why I couldn’t make it into the surgery I was added to the duty doctors call list, the call came around 7pm the doctor wanted to come out to me as I had Muscular Dystrophy, 10 minutes later the doctor knocked on my door, explaining that my lungs hurt so much from coughing because I’m struggling to cough up what’s on my chest plus I’m physically tired from not sleeping, he listened to my chest and said ok you have pleurisy that’s why your feeling the pain in your lungs I’ll give you something to help the pain as well as something for the pleurisy, I remember feeling as if the doctor hadn’t listened to a word I was saying not wanting to undermined what he was saying but also needing to double-check for my own piece of mind, so the chest infection has gone!? ‘yes’ ok just in case can I have more antibiotics just to make sure please ‘no, no more antibiotics’ I’ll give you a prescription to help the pain and the pleurisy. Trusting what the doctor was telling me he wrote out the prescription and went on his merry way.

Hubby being at work and just wanting to get what ever the doctor was giving me down my throat, it’s a good job hubby has some amazing friends that went and found an open pharmacy after 8pm. The prescription the doctor had given me was cough medicine and strong ibuprofen.

persevering though the weekend also getting advice from my mum plus trusting the doctor also, still coughing and having my husband whack my back over the bathroom sink just to get the gunk off my chest, it just wasn’t moving I wasn’t getting any better if anything I was worse I’d now been ill nearly 3 weeks, I called the GP surgery again on Monday the 12th February begging for stronger antibiotics which I finally got with the doctor telling me I can hear you still have a chest infection (so how did the other doctor miss this a few days before!).

24 hours later

After yet another sleepless night, crying sat on the loo so physically, emotionally tired not able to breathe properly I said to my husband I think it’s time to call the paramedics, my husband said your tired baby you need to let the new antibiotics start working and really what can the paramedics do!? saying I don’t know I just know something isn’t right, plus he knows I have a thing about anyone wasting the emergency services time for nothing when there are people that need it more than me (crazy I know, when you read this it turns out I was the one in need)

So I said ok I’ll call 111 and get some advice from them, not being much use than to tell me to call my GP again so that’s just what I did crying down the phone telling the receptionist how I was feeling how long I’d been feeling this way and what 111 had just said she said I’ll get the doctor to call you as an emergency.

Waiting for the call back my mother in law called asking how I was I told her I’m physically and mentally exhausted, plus what 111 and the receptionist at the doctors had said she then said I’m on my way to you now, she doesn’t live that far away but also doesn’t own a sports car she definitely made it in quick time I can tell you! she wasted no time calling the doctors to find out how long they were going be as she could see something wasn’t right, the receptionist said a few hours yet (different to what I was told) and followed with you need to call 999 if Kerry is struggling.

I can hear you all saying so where’s hubby as this is all going on he was with his second wife ‘the man shed’ outside having his coffee, now my husband has never been great when it comes to a crisis with me he shuts down and can’t really get his head around what I’m saying, in his head he wants to believe everything is ok and I’m just being over dramatic but then I’ve never been this ill and really what loved one ever wants to admit how serious it is.

My mother in law had now taken control and called 999 (in all fairness she probably saved my life without knowing she had at that time) Fast response was obviously quick to show up, unfortunately having to explain my background can sometimes take time not everyone understands muscular dystrophy, I have got a message in a bottle that’s in my fridge and a sheet with blood work and oxygen levels from Churchill hospital in Oxford they came in handy, but when you’re not feeling great trying to explain everything to the paramedics and guide your husband to where everything is can sometimes be tiring in itself, my sats were taken my breathing was monitored, the paramedic gave me a choice whether to go in or not but advised it was probably best she was going to try get me straight in and linked to intravenous antibiotics but needed my doctor to arrange it directly but the GP doctor said no he wants me to go straight to A&E so an ambulance was called I was going in.

What happened the next few days is very hazy in parts3609A5C2-EB57-4679-B861-327A43E9EED6

When I arrive at A&E there was no bays available so I was in the corridor for around 10 minutes then when one became available I was swiftly moved and put on oxygen, now like I said bits are still very hazy I know I was seen by a doctor and a nurse as she took my bloods plus fitted a cannula, I also had blood gases taken from someone else now I remember that as I hurt I’d never had it done before so I didn’t know it was taken from your artery in your wrist, in what order all of that happen I couldn’t tell you, I was eventually moved from A&E’s main ward to a small side ward with only a few bays just off A&E as I needed monitoring more closely because my temperature was high and my sats weren’t great.

Late that night the same day Tuesday 13th February I was moved to ward 1 I was hooked up to a monitor, drip plus I had a paracetamol drip as my temperature was still quite high, I was kept on oxygen and given a nebulizer, more blood gases were taken and I was put on hourly obs, at this point I was still being treated for a chest infection, I still again don’t really remember much of what happened that night or the following day for that matter as I was still not sleeping from the coughing so by this time I was so physically drained I could barely function, I know my temperature at one point went dangerously high at 49 and I remember my cousin coming to visit and being seen by the physio several times with the cough assist machine (this was my first experience of this machine) to try clear some of the gunk on my chest unfortunately the cough assist machine wasn’t working for me at that point so the physio was having to use both hands and push just under my rib cage every time I coughed it’s wasn’t Pleasant and yes it hurt but it was working to clear small amounts, then later that night Wednesday 14th i was taken to a ward but as quickly as I had arrived i remember a doctor saying to my husband I wasn’t staying on that ward so I was on the move again to a different ward one that deals with respiratory.

The following morning 15th February the ward doctor and his team came around to tell me ‘your in a serious condition you have pneumonia it’s taken hold of both your lungs’ were going to keep you on oxygen give you two different intravenous antibiotics, we’ll keep you on the drip and paracetamol drip when you need it as your temperature is still high and get the physios to come and see you 4 times a day, you’ll be on hourly obs until further notice.

They where having issues taking blood plus my cannula in my arm was also hurting the tube into my arm was bent from it having extra tape put on so every time it was being used it was hurting, two of the ward doctors tried getting a new one in my right arm after 3 attempt of what I can only describe as digging around inside my arm to find a vain I had to ask them to stop and told them find another way, a few hours later an anaesthetist turned up with scanning equipment to find a suitable vain to, him not wanting to be defeated by my body and my vains not wanting to play ball I was used as a human pin cushion again digging around trying to get the needle into the vain until I told him his 5th go was the last if it didn’t go in this time you’ll again need to find another way, it’s a good job it went in!

We had reached Friday 16th February I’d now been ill 19 days and in hospital for 4, my body was struggling to fight back I was struggling to fight back, so the doctor sent me for chest x-ray, CT scan he also asked for an ECG as my heart looked like it was struggling also.

Monday 19th February the doctor told me my left lung had collapsed, it’s more than likely it collapsed at home scary thought when the doctor tells you one of lung has collapsed but to also tell you if I’d of left it any longer  than I did to call 999 there’s a strong possibility my other lung would have collapsed and my situation would have been more critical than it was im very lucky to have gone in when I  did my heart sank, I had no one with me when I was told I’ve never felt so alone until that moment, I’ve never thought of dying before now my health has never really been a problem before now I’ve never been this ill before I’ve always classed myself one of the lucky ones having Muscular Dystrophy and never really having any serious health issue as others that have muscular dystrophy do

He followed with we’re going to send you for a procedure called a Bronchoscopy to try Reinflate your lung again we’ve sneaked you in this Wednesday (21st Feb) were also going to fit you with a picc line to make taking bloods and giving antibiotics easier plus another CT scan.

I held my tears until the doctor and his team left me, pulling myself together as I had to break the news to everyone including hubby who wasn’t coping as it was (trying to convince people he was fine) me being in hospital and as serious as it was plus this was the longest time we’ve ever been apart in 12 years.

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powerwand

A few hours later I was taken for a CT scan and to have a picc line fitted into my arm, I was wheeled in my bed into a sterilised room where I was greeted by a nurse and her team where she told me there was a change of plan she’d spoken to one of my doctors I was no longer having a picc line fitted I was now having a powerwand instead very similar but slightly different, I was slid onto bed my right arm was stretched out so it was straight the nurse then scanned and marked where she was going to fit the new line also explaining to me I won’t feel anything as I’ll be having local anaesthetic, inside the top right arm marked and covered in iodine I was then covered with a sterilise blue sheet that had a hole where she needed to fit the powerwand, the nurse was then gowned up after scrubbing in put her mask and safety glasses on and 10 minutes later I had a new line fitted that I could keep in for 28 days, then wheeled back out to the corridor for a short wait for my CT scan.

Wednesday 21st February procedure day CANCELLED – I had to wait until Monday 26th Feb I was to keep seeing the physios everyday 3 times a day the cough assist machine and I was now working together – I was now one with the machine!! (as my mum told me to be) 3/4 deep of breath then as i coughed the machine was suck the air out of my lungs, not that’s pleasant as your hacking up gunk that doesn’t look great in colour or taste very nice.

Monday 26th February official procedure day it was an early 6.30am wake up as I was on nil by mouth from 7am I waited all day watching people be taken as I wasn’t the only one having the procedure on my ward, my time finally came just gone 4pm to say I was scared was an understatement but holding it in as hubby was with me, I was moved onto an operating bed where I was wheeled to apart of the hospital I didn’t know existed it was rather posh, we went down a long corridor that was warmer than the rest of the hospital into elevator to enter a ward that only bedrooms nothing else, hubby had to leave me at this point and waited in the waiting room for me to finish, I was taken to a small waiting bay area where a nurse checked me in, the wait seemed ages but I’m sure it wasn’t that long and my head was just making it seem forever, I was taken into a theatre room where I was greeted by my doctor from the ward and several nurses, the doctor said your rather smiley for what’s about to happen I answered I’m smiling though my nerves have to put my drama GCSE to use at some point in my life he laughed,

The procedure was then explained I would be sedated plus 3 squirts of a numbing spray for the back of my throat, my mouth was held open by this blue thing, the camera would then be put down my throat into both my lungs, both lungs would be washed out but mostly concentrating on my left lung that little bit more as this was the collapsed one with the hope it would re inflate itself after being cleaned out

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After my procedure

I NEVER want to go anything so horrendous again apparently I cried through the whole procedure I had to be given extra sedation as I wasn’t coping, it truly felt like I was being tortured I can now say I know how it feels to think your drowning feeling your lungs being filled with water not able to do anything because you can’t move your own body is scary – procedure over struggling to breath, sats low I was put on oxygen and a nurse sat with me as I was coughing up what was left on my lungs, throat in so much pain unable to talk or swallow properly, still very dazed at what was going on around me, my ward nurse was told to take me back to the ward and put back on hourly obs.

Tuesday 27th February doctors rounds I was slightly anxious to what he was going to tell me fingers crossed, the procedure had worked my lung had reinflated itself (thank God I wasn’t going though that again) he said as long as my sats kept improving over the next few day I would be able to go home as long as I followed strict guidelines some good news finally

Wednesday 28th February I can go home the doctor and physios where happy as long as everything was put into place

  • Medication
  • Appointment to get my own cough assist machine with Churchill hospital Oxford
  • Extra help arranged with social services
  • Home physio team arranged
  • At least 8 weeks home rest

Ambulance transport was arranged for 6.30pm time was ticking over and over we’d now gone past the pick up time then the bad news came, it’s been cancelled no reason just sorry looks like your not going home tonight did I cry yes I was so excited to go home I was crushed.

Thursday 1st march the Beast from the East was upon us the snow wasn’t stopping, my fingers crossed hoping the ambulance transport wasn’t going to cancel on me again 12pm dressed and ready to go they had arrived woo hoo I was going home the ambulance lady joked and said the Whitney Houston I have nothing was now my going home song!!

You’d think this would be the end of my story but no I was very nearly taken back to the hospital because we couldn’t get hold or find my husband I called before I left the hospital then in the ambulance thinking he’s probably in his ‘man shed’ so by the time we arrived he’d be in back in the house, 30 minutes the ambulance people where knocking and ringing our door, one of the ambulance people said no one is in sorry we have to take you back Kerry, I begged for them to try one last time so they banged on our bedroom window finally we had life a sleepy faced hubby opened the door he was so excited that I was coming home he couldn’t sleep the night before so got up at silly o’clock then fell asleep in the living room!!

I’m now near the end of my recovery there is slight permanent damage to my lungs but as long as I do the cough assist machine everyday twice daily and take the carbocisteine tablets 3 times daily plus back up antibiotics at home this should all help keep me out of hospital, I now also have a permanent GP doctor so no more different GP doctors every time I call

I would like to thank the Paramedics, Doctor’s, Nurses and HCA (health care Assistant’s) for all your hard work you saved my life there is no doubt about that your all truly amazing.

I can’t wait to feel the sunshine on my face and take a big deep breath in and smell the fresh air!! 

Kerry x

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