Day’s… Week’s… Months

It literally has been days, weeks and months since I last blogged. This is mostly because I’ve simply been too exhausted, to tired and too ill to sit and write what I hopefully am doing right now.

Without reading back, I wonder if I had mentioned I was suffering breathing problems? Pretty much from October 2009 through till late August 2010, I suffered from what I now know is called strider. It’s the sound that comes in relation from a narrowing in the throat (stenosis). To ignore the medical terms, and to listen to me, I sounded like Darth Vader. Add this breathing noise to the sounds of using the crutches and it really like I’d walked off the set of a Star Wars movie. Anyhow to catch you up quickly, I had ended up down at the local hospital one night with difficulty breathing. Not just noisy breathing, but the actual process of moving air into my lungs, much like an asthmatic. This prompted an outpatient appointment with ENT (ear, nose and throat) at the Alfred hospital 3 months later. Once I was seen, and the young registrar had numbed the back of my nose, and inserted a camera up it and down the airway, many names were screamed. Not swearing from my mouth but the registrar yelling to other doctors to quickly come see what this young doctor was seeing for the first time in his career. I think I better explain this in the most basic way I know how:




A normal airway is roughly 10cm wide (the purple area on the picture above), and when I was scoped the young registrar saw a narrowing in my throat (just below the vocal cords) of 4mm in the trachea. This was life threatening. I was very quickly looked at by every single ENT doctor, as many up to 6 at a time lined up to have a look. I should have been dead. What I was experiencing is so incredibly rare in an adult, especially one that is a) still alive and b) moving around on crutches and talking! A “sub-glotic stenosis” is more commonly found in premature babies, when their throats don’t develop properly. This is why I caused a crowd.

I was immediately passed on to the head of the team, the head doctor and listened in shock as they explained I needed emergency surgery, they would need to perform a tracheotomy (where they slit the throat open to gain access to the airways). I was moved down to a re-suss bay in Emergency as they tried to secure a bed in ICU until they were able to operate. They needed an operating room available, and while I needed emergency surgery, they could manage my airway until then. However while down in emergency, the situation turned even direr and my airway decreased to 3mm. Within 5 mins, the whole team of ENT doctors came down, had a look down my throat again and I was told I would be in theatre within half an hour. Most of this information passed straight through me, as I was in shock. My mother was signing forms for them to do what they needed to keep me alive, and as I heard more, the more distressed I became and my breathing became even more difficult. I was rolled into theatre where there were at least 25 doctors, a dozen nurses and 2 anaesthetists. They spared me a tracheotomy (thank goodness!) and used a balloon like device to burst through the tissue that had formed, which was causing the narrowing/stenosis. Once I came round in recovery, I felt as if I had tonsillitis, pharyngitis AND laryngitis! And by that I was in an incredible amount of pain, and I couldnt even swallow. It felt like razor blades had cut me up inside. My throat was so raw and I spent the night in the HDU (similar to ICU – High Dependence Unit). Anyhow I was released the next day and had to go vote! That was the last thing I wanted and I couldn’t even enjoy a sausage afterwards. :(
To cut the story short, I have been having check ups every 4 weeks since, and since that fateful day in august, I have needed an operation every 8 weeks (20th of August, 28th of October & 16th of December 2010 so far) to open my airway. In the 2nd and 3rd surgery, they have used the same ballooning technique, but also used a laser to break up the tissue, and have applied a chemotherepy drug called mitomyocin C. First they painted it on the affected area of the throat (just below the vocal cords), and in December they injected it. However my throat continues to close, and now its a choice of being able to move (on crutches) and not breath or to not move at all and manage my breathing?
This was completely not what I needed when dealing with my hip as it was. Besides the fact I cant move, this throat problem (which Why i have it is still unknown as is why it wont stay open...)affects almost every aspect, especially with relation to pain. Im not allowed to start feldenkris (a pain management therepy)until my breathing is under control, and I cant seem to do my deep breathing exercises for pain, as I run out of air!
When my airway closes, I have noticed that when I sleep, not only am I sleeping longer, but getting a very poor quality of sleep (sleeping for 8 hours, feeling like I’ve slept for 1 hour), consistently tired, I become lethargic and my voice changes into a more husky sound.
So I apologize about my lack of blogging over the last few months, sometimes there’s been nothing I’ve wanted to do but blog, but haven’t had the energy to type.
Stay tuned and I’ll try and fill in the end of last year.

Stay safe and keep breathing ;) - that's what ill be trying to do!!!
Xx

PS: As of mid Febuary my throat is open to just below 50%. I will have another check in 2 weeks times, however it will most likely need to be dilated again.

Take a chance on me

Will you take a chance on me?

If you had the ability, the skill and the tools to help someone in need, would you?

How far would you let someone deteriorate before intervening?

If there was the smallest possibility of changing someone’s life for the better, would you do it?

These are all questions I want answered. You see, I recently got my results back from a recent MRI and CT scan of my left hip, and the findings were not great. Multiple cysts, bone growth on the head of the femur, irregularities within the acetabulum and fraying of the labrum. To simplify, most are de-generative changes which is accelerating the arthritis in my left hip joint. I was only diagnosed with very early arthritic changes back in February ’10, where previously there was none.

I have been in severe pain for many months now, and most doctors attribute it to chronic pain. If you have read my previous blog posts and know my previous history, you know I have been through quite a lot and have had many surgeries for problems within the left hip cavity. At this point in time, and for quite a few months now, I have been unable to get out of this acute pain and its levels of 7 and above out of 10 on a basic pain scale. Before each surgery I have had, multiple scans have shown a proper cause for the pain I'm experiencing within my left hip. Once again scans have given a decent cause for the acute pain I am in. I feel like I am suffering from ‘Chronic Acute Pain’ because over the course of 4 years now, pain has subsided after surgery, and yet when something goes wrong once more, scans prove there is a cause of some sort and surgery has fixed it. Now the problem is; and this is where the chronic pain part comes in, is because of all the doctors and nurses I have seen, they have taken quite a long time to reach the point of operating, and the pain continues up to this point and becomes quite severe however always subsides afterwards. Now this is where my questions start to come in.

I have recently seen a new orthopaedic surgeon, who after consultation, and reading the results of my latest scans seems hesitant to help, in case he makes the pain worse. This is a similar situation I had with my previous surgeon.

This is a risk I am willing to take. Is he?

If you had the ability, the skill and the tools to help someone in need, would you?

How far will you let me deteriorate before intervening?

If there was the smallest possibility of changing someone’s life for the better, would you do it?

Even though I am no more qualified then the person next to me in the field of medicine and how you operate, if you see a patient in severe pain, and there is obvious arthritic changes within the structure of the joint and you know it will only continue to get worse, wouldn’t it be easier and more helpful to the patient (me) to intervene those changes now and take that risk that you may actually help that patient, even if it’s the smallest percentage, to give them a better quality of life than they had before?

I have continued to hear that my age is a problem in regard to a hip replacement, well so is my quality of life. I have none. If you can help, you may actually be able to give me back some quality, so the rest of my body doesn’t deteriorate either. I see a number of specialists for problems that have occurred from a lack of a quality of life. My body is deteriorating because I can’t do the normal things that a 24 year old might do. I am living like an elderly person, relying on almost full time care from my 60 year old mother. I am filling my body with pain controlling medicines just to get through each day, which I barely do. I am slowly losing the confidence I once had to be a teacher. I know I would make a great teacher, my prac skills have shown so. I'm intelligent, smart, funny, kind, practical and fully aware that I will never return to being the person I once was, and be able to do the things I used to do. But please…

I beg of you, please take a chance on me.

Life, Goals and Expectancies.

Hi you,

A friend of mine recently made a comment in her latest blog post about her previous goals and achievements and how her life has changed, now that those goals are now not achievable. I was thinking about this the night before she had posted. What were my goals prior to my accident and where is my life going now?

To begin with; I’ve always had a passion for sport and exercise and probably from around the time I was 15 or 16, I began to have an interest in health too. In year 10 we had a seemingly silly PE elective that was mandatory and didn’t have a good reputation from previous years. However this PE subject which was mostly about fitness with two physical classes each week, and this is when I decided I’d change my life around. During the course of this subject I went from an overweight teenager, who although enjoyed netball and many other team sports, was not technically“fit”, to a student who was enthusiastic about fitness and health, with a teacher who not only encouraged me personally but helped me gain control over my body again. From this I went onto achieve many things including a couple of Great Victorian Bike Rides!

This teacher among with my VCE PE and health teachers are the ones who inspired me to become a teacher myself, and help other students not only change their view of Phys Ed, but also enjoy themselves and begin to have an understanding of their body even if Phys Ed is not their preferred choice of subjects. These teacher's all had special qualities which i'd love to be able to emulate in some way and I definantly want to achieve a level of teaching where I can help students enjoy their studies they way my VCE PE teacher taught to me.

So I guess you could say I knew exactly what I wanted to be since year 10, and that goal hasn’t changed since.

Throughout VCE I undertook in a subject called Outdoor education and environmental studies. I thoughourly enjoyed not only the physical aspects of this subject such as camping, hiking, rock climbing, surfing etc, but also learning about the environment such as the different ecosystems around us, and what we can do to help them. After VCE, I enrolled in a university course of this nature, Outdoor education at La Trobe University. I deferred this course for a year for many reasons, one of which was my dad had been diagnosed with cancer again (for the 4^th or 5^th time), and I wasn’t ready to leave home. Throughout the year I had off my goals did not change. I even volunteered back at my old high school to help out with the outdoor ed program throughout the year. When it came time to ensure my place back in University, I found that they had begun a new course that was a double major of both Phys ed and Outdoor ed under an education degree. Absolutely perfect! I thought I’d struck gold and become the luckiest person alive when I was accepted. Particularly when I had to apply as a mature age student and only had one of nine places to fill for the non-year 12’s!

I had a pretty successful first semester and in second semester of my first year I had my accident. I continued for another year and a half taking withheld grades for the subjects I couldn’t complete because of the physical demands, and I continued to believe I was going to get better. By the time I had reached my 3^rd year of a 4 year course, my health in regard to my hip was going downhill fast. I took a year off, and after some deep thought decided to enrol in a double major of phys ed and HEALTH. It was very similar to my previous course, it was at the same campus, and best yet I could carry my completed PE subjects into the new course, making me have an almost complete PE major before I had even started a new 4 year course.

(2006 Alps trip, La Trobe Uni, Bendigo)

Once again, I had an even more successful first semester of uni, gaining high distinctions in 3 out of 4 subjects and missing out on the 4^th HD by only a few marks. By second semester, things had begun to unravel once again. The same story of which you have been previously reading about in earlier blog posts once again consumed my life and pushed out my studies. Now the New Year has begun, and once again I’m awaiting my now 4^th hip surgery. My expectancy of my goal of becoming a PE/health teacher is declining.

I’m a good student. My grades have shown that. I’m passionate about my subjects and what they are about. However….

I wonder how much more my body can take. I wonder how much more I can emotionally take and most recently what will my future hold? Will I be able to complete my university studies? Will I be able to spend the 8am to 5pm maybe even until 7pm days surrounded by students? Can I handle that? Emotionally and physically? I promised myself I’d never be a teacher who stood on the sidelines. I always planned to be actively involved because I think the ones that do make the best teachers.

I’ve spent the better part of just over three years on heavy prescription pain meds, and I’m unsure for how much longer I will be on them. I have a decent amount of nerve damage in my left leg which means that I can only achieve 2/3^rd’s of the strength the other leg can have, in other words, I’ve lost of 30% of my strength output. I’m now on anti-depressants (much to my despair) because I had reached a point where I can no longer emotionally deal with my physical pain.

I may have only been talking about one goal here, but it is a major part of my life right now and I’ve been thinking a lot about it. A lot of effort and time has gone into this goal, and many achievements have been made. It’s not only my time and effort, but those of my high school teachers, my lecturers, and my family and friends for getting me to this point.

I feel I have achieved so much, but yet I’m so far away from where I want to be. I had planned to study oversea's during first semester of my 3rd year. Will I ever get there? I am about to take more time off from my uni studies to recover from surgery and to come off the medication. Whats next for me? Am I destined to do what i've wanted to do for the last 7 years of my life?

It's hard enough worrying about having enough money to pay rent and the bills, in a home i hardly live in, let alone what does the future hold?

Take care and much love,

Jen xx

PS: post allows annoyomous comments

December: point form.

Hi you guys,
I apologise for putting off blogging for so long. I’m not quite sure why, because I don’t fill my days like a normal 23 year old would during uni holidays due to my hell of a life. I use this place not only to vent but to almost document what happens in my life.
I have a massive tendency to blah on a bit and I’m hoping to compress December into a not too massive read for you.

- Pain got worse. Saw my surgeon; he’s decided to operate after three months of declaring there was nothing more he could do. He examined my hip for much longer than he normally would and I believe he must of felt something unusual, to have such a change of mind. However I am happy for this outcome because WE ALL knew I have a mechanical problem in the joint so now he can fix it! I’m not over-optimistic that this will take my pain away, however I know for certain it will reduce the high levels of the unliveable pain I have been going through. Surgery date: 3rd Feb.

- I have been in and out of my GP’s office for reasons other than needing medication. My thyroid tests have comeback abnormal. This is a first for me, and it also explains why I have put on almost 5kg since the end of October when I’ve been sleeping most of the time, and have a good-decent diet. I had the levels retested within a month of finding out that I had a new problem, and I found that not only were my THS levels up, so were my T3 and T4. Unfortunately due to the medical marvel that I am, when one (T3 or T4) is up, the other goes down. Mine are both up? Regardless, I cannot afford to put on weight. However I cannot move to exercise particularly cardio! Although the problem is my hip, it’s not only affecting the left leg, but also the buttock and my back. It hurts to even sit on the loo!
Also thanks to my current lifestyle of the last 4-5 months of either being on the couch or in bed, my lungs have gathered a fair amount of gunk on them and in the past month its been quite hard to breath and I’m out of breath quite quickly and have been very wheezy. In the last week I’ve had a chest X-ray to rule out pneumonia and also a spirometry test. The spirometry test, I did today and boy is breathing hard! I felt like I had maxed out at the gym, my body was so tired!

- Christmas was lovely as usual. Every Christmas day, the whole of my father’s side of the family has Christmas dinner at my Aunty and Uncles place in Geelong. They live in a lovely big old property, and it always brings back fond memories. This year, my cousin Suzy had gotten a kitten, so I spent most of the day playing with this adorable black and white ball called Jenkins.

I received lovely gifts, mostly gift cards, Sex and the city DVD (season 5… they had sold out when I bought the rest in 2007) and a small amount of cash. Mum is yet to choose her Christmas gift as yet, as she wants a steam mop. Making sure I keep money saved for that.
Christmas day was the first day I had gone without a nap in months. I slept for 22 hours the following day.

- I visited and met my brand new cousin (my cousin’s baby) in the few days between Christmas and New Year’s Eve. Chloe is gorgeous and growing stronger and bigger each time I see pictures of her.


We (mum and I) stayed with family friends in Myrtleford for 3 days, and as well of receiving the love of Billy, their 9 month old border collie… whos still all arms and legs! He's such a loving dog.

And we travelled out to Milawa, to see the cheese factory (oh how I heart cheese) and Brown Brothers winery. Unfortunately we only got to the winery, but it was lovely especially since I’m not a fan of red or white wine, I got to try a few sparkling wines, and with the help of a twitter friend, settled on a lovely fruity bottle of Zibbibio. I finally came back home and spent new years nanna style as I was simply too tired from the car trip.

I hope that this wasn’t too much of a bullet point document of my December for you. My next post which I will also write tonight may be much better.
Peace and love you guys,
Jen xx

Sick of it...

A short blog tonight...
I'm sick of being in pain.
A quick visit to the surgeon on Thursday showed that he was not happy with my sudden increase of pain and decrease in mobility. To be honest. This scares me. i know when the pain moves into the groin, that this means trouble. I don't have time for another surgery. I took last year off uni, and i don't want to miss anymore. In the past 4 days my pain has gotten much worse. i have gone from limping to dragging my leg to relying on crutches to get around. My pain killer medication has more than doubled and after 3 surgeries and successfully withdrawing from medications, ill be looking at going through the process again. I know i cant prejudge whats wrong until i have the MRI scan on Saturday and get the results the following week, but I'm scared that if they find something, i will have to have ANOTHER operation, and if they don't find anything - why am I in so much pain and why do i have so many physical symptoms?
I'm sick of the pain, the routines, the vague memory, the forgetfulness and not being able to do anything productive. I'm sick of going through this whole process for a 4th time. what did I do to deserve this?

signing out,
Jen