My heart will go on...hopefully

So, I arrived in the A&E department of the Ulster Hospital, within minutes I was in triage. The nurse there told me I looked very weak & unwell even though my vitals were normal. She took me through to the majors unit of A&E, not a nice calm place that's for sure.. I again had blood tests, chest X-ray etc done & again they showed nothing.. But this time my Doctor actually just looked at me, knew there was something going on, that I wouldn't look the way I did if I was perfectly healthy.. It was time for her to clock off for the night so she handed me over to another doctor. I again repeated my symptoms to him, but this time he picked up on one, "I feel worse when i stand up, my head goes really light & the colour drains from my face", so he decided to repeat my ECG, lying down first then standing up.. And FINALLY, they found something unusual. My heart rate when I was lying down was 52bpm. And when I stood up, instantly, jumped to 146bpm. There it was, a black & white symptom. Nothing I could over exaggerate. I was now a very interesting case, 19, post surgery, otherwise healthy, with a racing heart rate, only when standing. I was admitted to the medical assessment unit for the night as there were no beds on the cardiology ward. I continued to be sick through the night even with anti-sickness meds, and became very very restless..The next morning my room was constantly visited by Doctors.. No one had any clue what was going on.. I was given 4 bags of fluids which helped to get rid of the nausea & regulate my temperature even though I still couldn't really eat, especially the horrendous hospital food (minced chicken for example). I was then moved up to the cardiology ward & assigned to Prof. Trinoch & consultant Dr. Donnelly. I was given a telemetry which monitored my heart 24/7, one night I got out of bed & the doctors came running in to see what I was doing because my heart had just raced to 160bpm. I was started on beta blockers to help control my heart rate, within a couple of days I felt much better, I was given the diagnosis of SVT (super ventricular tachycardia), I won't go unto it cause I'll be here forever, but look it up if your interested. I was allowed to go home, & continue to take my beta blocker each morning.
                                                           LJxo

Complications Part 2..

So, this was now the 10th of October.. I had lost a stone in the last 2 weeks, was practically grey in colour, exhausted, my temperature was all over the place, I felt clammy all the time, nauseous, vomiting up everything even water, extremely light headed when standing up; all the colour would drain from my face, I'd feel like I was going to collapse & my chest pain had gotten worse alongside a racing heart. My mum decided I needed to go into hospital, that I  couldn't afford to lose anymore weight, so off we went to the Royal Victoria Hospital A&E. I sat in the waiting room on plastic chairs for 6 hours, despite telling them I was 4 weeks post spinal surgery.. I was eventually seen by a junior doctor. She did a chest x ray, bloods, urine, found nothing so told me that I had pain anxiety & that I was "skin and bones, pale, exhausted, but nothing is wrong, you should just get anti-sickness medication off your GP on Monday" this was on Saturday.. That night I spent all night lying on the tiles on my bathroom floor trying to keep my temperature down, vomiting even with nothing to be sick on, got no sleep & was getting weaker & weaker. The next morning I got up early had my medication & tried to have some breakfast, 3 bites later & I was being sick again.. I felt like I was dying.. I was so dehydrated, weak, sore & exhausted. I called the on call doctor, she came out immediately, took one look at me & told me I should be in hospital for fluids & anti-sickness if nothing else. She gave me an anti sickness injection & gave me a note to take to A&E, this time in the Mid-Ulster Hospital. I got an over night bag together & off I went..
                                                                          LJxo

Complications..Part one

So although my surgery was great, & Mr. Shaw did a fab job it wasn't all plain sailing.. Far from it. So going back to when I was in London, I had this persistent chest pain on my right side, almost like a burning sensation when I moved, particularly when I sat forward or stood up. I mentioned it to my doctor, but nothing was ever investigated so I thought it was part in parcel of the surgery & it would probably heal itself. Well, it didn't.. I went to see my local GP on the 23rd of September for the nurse to check my scars were healing & everything was how it should be. Both the GP & Nurse said how pale I was & that I didn't look well. I mentioned to the GP at this point that I had the recurring chest pain, she then sent me & my mum up to the Royal Victoria Hospital as she didn't know enough about scoliosis or the surgery to advise anything. We then headed to A&E, sat for a few hours before being seen by a Junior Dr. He did bloods, chest x-ray and arterial blood tests.. found nothing wrong, but sent me up to orthopaedics anyway. They were not any help at all!! They simply upped my morphine by 20mg, which was already 140mg per day, and considering i was only 47kilos, that was a lot! They then sent me home. I continued to get worse.. now losing weight too. I couldn't have imagined what was at the bottom of this, all i knew at this point was that I had continuous chest pain that wasn't getting any better..
                                                             LJxo

The transformation..

Surgery Part 2

My next surgery was much bigger & more invasive, but I just wanted it done, I wasn't nervous, I was determined. The same surgery prep as I mentioned in my last post was all done again. I was a pro at blood tests by now & cannulas, even if I did still need my "magic" numbing cream.. I went off the surgery in the afternoon of the 9th of September with my mum this time. I bid my nana goodbye & was perfectly calm. I again got the floaty feeling with the pre med, & don't remember anything until recovery. Again I had tea & toast, (four slices this time) ha, & slept soundly through the night, I was comfortable in the early hours of the morning but by the time my mum arrived at 10am I was crying in agony, the dia-morphine injection had worn off & I could feel everything.. The nurses did their best to manage my pain, but it took 4 hours for me to feel any kind of relief. I was then moved up to my ward again & started getting a temperature.. This continued to increase through the night as well as my heart rate..there were only 2 nurses on my ward & 1 on call doctor for the whole hospital so very little could be done until the morning. My mum arrived at 6am & we were shortly surrounded by all sorts of Doctors. They did arterial blood tests, chest x-rays, & a CTPA scan with contrast dye where they found shadowing in my upper right lung, I was told I had a clot & that they would start me on clexane injections that evening to thin my blood. We were also told that the clexane could gather around the nerves at the base of my spine & make me lose all feeling in my legs & feet. I was on my ward with no monitoring apart from my mum tickling my feet and legs for an hour before I was moved back the HDU for another night. I was incredibly uncomfortable all night, & in the morning more doctors & tests.. It was then picked up that I needed a blood transfusion, 2 units. I continued to have the clexane injections every evening, they were injected into my belly, not the nicest thing ever & then I was started on warfarin. The doctors weren't convinced with the clot diagnosis so got a cardiologist from a neighbouring hospital to do an ultra sound of my heart, he said I had one of the strongest hearts he'd seen & there was no clot, nor had there ever been. I was discharged this day.. The surgery was completely successful & my back was the one thing that didn't give me any trouble. I grew 2 inches & had an incredible result.. What stood out for me was when my doctors were talking about me & said "this is Leigh, & she had scoliosis".. I didn't have it anymore.. Wow.
           LJxo

Surgery Part 1

Sorry for the absence of posts, but only now 3 months post surgery on Monday do I feel ready to talk about the past 12 weeks & everything the surgeries brought.. So I arrived in London on 1st of September veryyy early, 7am actually & wasn't being admitted into the RNOH until 2pm, was the longest wait of my life..(until that night). I arrived at the hospital & was lucky enough to be put in lovely ward 4 beside a girl who was my age, born exactly a week before me, & having a similar surgery on the same day. Us & our families quickly bonded & this helped to keep my mind off the upcoming surgery. My surgery was scheduled for the next morning around 10.30am. The anaesthetist came & met with me in the evening to take blood & talk through what meds would be used to put me to sleep, what I would have during the surgery & what I would have after the surgery. Mr. Shaw (my surgeon) came & introduced me to my Doctor, Adam Benton, he talked me through my anterior fusion, the procedure & got me to sign my consent forms. This surgery fixed my lumbar curve. That night I didn't sleep a wink, I was terrified. It was incredibly hard when my family left, just thinking the next time I saw them it would be my surgery day. The nurses came early that morning, I wasn't allowed any breakfast, had to have a shower, take off any make up & jewellery, tie my hair up & put on my surgery clothes (not the best thing I've ever worn). I said my goodbyes to my mum & nana. I met the scrub nurse in the prep room, the anaesthetists gave me my pre med which made all my nerves disappear & made me feel veryyy floaty..haha that's all I remember until I woke up in recovery, & of course the first thing I do after spinal surgery is sneeze.. *sigh* I was incredibly drugged up & sleepy, but much more comfortable than I expected to be. I was lucky with the morphine too, it didn't make me nauseous, the opposite, I had tea & toast as soon as I arrived in the HDU. My night there was very comfortable, even the next morning, I even put make up on!! That soon wore off once I had to be turned, changed & moved up to the ward, although my back gave me very little trouble, my chest drain was not so great, especially when it got caught on the side of my bed & moved about inside my chest. When that was removed on day 4, things got better & better, I could shower instead of bed baths, get my catheter out, & sit up out of bed, stand and eventually walk! I even got to go out for coffee in a wheel chair with my mum :) the surgery was very successful & I had no post up complications!! One down, one to go..
                                                                                             LJ xo

Panic..

So, up until two nights ago I had been very calm & almost unnaturally unaffected by the prospects of my upcoming surgeries.. (5weeks today I'll be chilling in hospital) but... A few nights ago while lying in bed pondering the meaning of life as many people tend to do at silly o'clock in the morning it suddenly dawned on me exactly what my body is about to go through, and its a lot for anyone! The thought of them opening up my sides, breaking ribs, collapsing lungs, screws and rods & chest drains is just not on the agenda for a normal 19 year old.. But that's the thing I'm not normal, which is the reason they're doing this whole thing in the first place! I just have to try and keep the positives in mind same as every other person who has been through or is going through this process! I'll be taller, stand straighter, no more muscle cramps, nor more rib hump or sticky outty shoulder blade, even sides and hips being levelled off.. Sure I'll have a few scars but they're just there to let everyone else know what you have been through & shouldn't be anything to be embarrassed about! My message in this blog is really just to stay positive, the whole surgery process is just a short time out of your whole life!! & anytime I get scared that's all I need to remember.. If anyone has any questions or concerns, please don't hesitate to email me :) leighgould03@gmail.com, LJxxx

Letters from London

So since my last blog post I have received a couple of letters, one about what will be happening & another about when. The first letter was really just a discussion of what happened at my pre-op clinic. It started with my diagnosis of Double Major Scoliosis with my treatment plan being firstly, an Anterior fixation of T11-L3 followed by a Posterior T4- L3 fixation. The Surgeon Mr. Shaw wrote the letter to my consultant in Belfast Mr. H & also to my GP which was then also sent to me to keep me in the loop really... Mr Shaw described me as a lovely girl with a clear MRI & 2 curves in the mid  70s, although I still have a good range of spinal movement, aka I'm flexible! There was then a note to reiterate the risks; 1 in 300 paralysis rate, infection at 1-2%, bleeding etc. He then concluded with well wishes & looks forward to seeing me for my surgery. The next letter was much shorter, basically arranging a date to head over to London. I fly from Belfast with my Mum & Nana to London on the 29th of August, being admitted that day to Hospital at 2pm with surgery number one being performed the next day! Slightly nerve wrecking but...the quicker it happens the quicker I can get recovering! Thanks for reading again,
                                                                                                     LJxx

You, Me & Scoliosis

So, thought I'd do a post to let you all know how I found out about Scoliosis & how you can look out for it!  So the first time i thought something was a bit funny about the way I looked, was when standing in Zara, I was standing in front of my mum when she noticed my shoulders were uneven & that i was standing slantingly. Her first instinct was that I was possibly growing more on one side than the other & we had never even heard of scoliosis so it didn't even entered our heads! I had a suspicion it had something to do with my back, so Mum made me an appointment with our local GP. As soon as he looked at my back, he knew exactly what it was, Scoliosis. He referred me onto a consultant, Mr. Hamilton. He did a number of things, X-rays, MRIs etc.. He confirmed the scoliosis diagnosis. I had a double major curve standing, at the time, at 54 degrees and 56 degrees. This was quite a shock to us who had never even heard of Scoliosis! I was told by Mr. H that I would be fitted for a Boston Brace, commonly used for trying to slow down the progression of the curves. I was to wear the brace for one year, wearing it 24/7...not ideal at all! Anyway, a year passed & still my curves got worse, the brace was then ditched & I was left to tick along in everyday live until just before my 18th birthday. I had another appointment to see Mr. H at which he told me my curves had progressed by 10 degrees.. I was then at this point put on the waiting list for surgery. Another year went by, I went off to the University of Aberdeen to start my Law degree & meet so many amazing people! Through the winter my back got sore from the cold weather which resulted in heading to physio once a week which helped relieve a lot of the tension my curves were putting on my back. I then carried on with my daily life, when a phone call came from my Mum, the day before my 19th birthday (always around my birthday for goodness sake!) anyway, the call was from Mr. Shaw, a consultant from the Royal National Orthopaedic  Hospital in London saying he would do my surgery & that I would be meeting with him on the 25th of June to arrange my visit to London for my surgery. So on I went on the 25th with my Nana Martha, & best friend of 15 years, Catherine. I had X rays, ECGs, Blood Tests, and after all the poking and prodding was finished I met with my Surgeon, his assistant & Anesthetist. It was agreed that I would have two surgeries, one approach through my ribs on the 2nd of September & the second approach down the middle of my back done on the 9th of September. I would then head home back to Belfast in Ireland 2 weeks after the 1st surgery. And that takes us to now, patiently waiting for my surgery day to come...

                                                                                                                  xxLJ 

How it all started..

So I am 19 now, but was first diagnosed with Scoliosis when I was 14. For those of you who don't know what Scoliosis is, it is an unexplained curvature of the spine, cause is unknown and there are various treatments available for people diagnosed with this condition. I have a double major curve both in the mid 70s, which is pretty substantial! Don't worry scoliosis sufferers you aren't alone!! It's more common in girls, of course it would be, we get all the bad luck with periods, pms and childbirth!! But it's not as bad as you would imagine, at least not for me, I had no back pain whatsoever, of course after hours and hours of shopping I may get a little bit achey but doesn't everyone? I have tried various treatments, bracing, physio and my newest one will be surgery. I am scheduled for 2 surgeries this summer in the National Orthopaedic Hospital in London, I am surprisingly not nervous at all... Sure it's going to hurt and it'll take me a while getting back into the swing of things but its only a couple of months out of my whole life! Having such a supportive family and friends sure does help though..I'll continue to ramble on until after my surgeries to let you all know bits and pieces about me & my scoliosis journey! xxLJ