Steemit community exposure for HLH, a rare auto immune disease worse than cancer. My story

A story about a super rare autoimmune disease that affected my life and took its toll on everyone around me both financially and emotionally. It is a charged story of one that reveals the true devastating effects about how vulnerable we are as humans to the natural order of the world. Having an auto immune disease like HLH fundamentally changed my life and its one I will never stop reading over and over again in my head when i am briefly caught in the PTSD incurred moments from living and experiencing such an illness.

Take a read as this is my first story I have decided to share to the Steemit community and let me know in the comments if you or anyone around you has had it and or experienced a cancerous like illness for that matter.
I will add some photos towards the bottom of my story for development purposes.

TIA


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Hey guys, last night I was asked to share my experience leading up to my transplant and suffering from a rare condition known as HLH and me being me I felt l obliged to help people suffering now and in the future. It's a devastating disease that has taken its toll on my life and my family's. A story I was told of last night of an 18 yr old daughter being taken within 6 weeks of being diagnosed blew my mind and hit really close to home. I would encourage you all to take 10-15 minutes reading my story as its over 4000 words. Please take the take the time after to share and spread the word about Hemophagocytic lymphohistiocytosis (HLH). At this day and age every little bit of exposure helps and after hiding away from reality I thought it was the best time now to share my story. Cheers!

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To the population of Earth,

My names Christopher Murdock and this is my story.

I have been asked to share my story of having Hemophagocytic lymphohistiocytosis (HLH) and my life before and after to share awareness of a condition most doctors look at in disbelief. Before I begin I thought it would only be appropriate to tell everyone taking the time to read that I’ve never publically wanted to go into detail with the experience I had. This was based on the idea of never wanting to speak of it again, sweeping it under the rug so they say. The thought of writing something so close to home brings me to tears even as I write this little intro but it’s something that people need to start paying attention to along with other illnesses. So I would like you all to take the time to read and learn about people living with HLH and the experiences patients go through before and after the inevitable Bone Marrow Transplant (BMT).

Pre Diagnosis…..

All throughout my life I have dealt with an array of illnesses that would boggle the minds of the unaffiliated and a list too large to go into detail about. Whether or not it all contributed to the dormant HLH I’ll never know because the research, rarity and complexity of the condition was unknown and still is (to an extent). Throughout high school, living down on the coastal town of Batemans Bay I was battling cystic acne that pulled me down to an unhealthy mental state but I learnt to deal with the bullying and eyeballing myself. This paved the way for me to face reality and deal with my problems myself, essentially disabling communication as a preference. Until now have I remained nearly silent and only going into minor details about my experience to only close friends.

In the latter of Year 12, in 2010, I was struck with glandular fever, and anyone who has had it will understand the drain on your health you experience. This was the first signal to the specialists that something was wrong. I was jaundice and looked like Bart Simpson for a few weeks, until I was admitted into Batemans Bay hospital for suspected liver failure. At this point my doctor, Dr James Langley, immediately transferred me to Canberra Hospital where I was put under the jurisdiction of the Canberra Hospital Haematology specialists and awaiting a potential liver transplant.

OHHHHHHHHHHHHHHHHHHH SHIT…..

Anyone with a basic understanding of the health care system would automatically assume you have cancer. Luckily for me it wasn’t the case. I remember it like it was yesterday, a team of about eight specialists were walking towards my "little cell" as I would call it and wanted to speak with my family without me. That’s when I knew I was a burnt out battery. Finally I was going to just fall to pieces and this was my time. Being sick throughout my life I just realised this was going to be it. The team had diagnosed me with Macrophage Activation Syndrome (MAS). MAS, as quoted by Medscape, is “a life-threatening complication of rheumatic disease that, for unknown reasons, occurs much more frequently in individuals with systemic juvenile idiopathic arthritis (SJIA) and in those with adult-onset Still disease. Macrophage activation syndrome is characterized by pancytopenia, liver insufficiency, coagulopathy, and neurologic symptoms and is thought to be caused by the activation and uncontrolled proliferation of T lymphocytes and well-differentiated macrophages, leading to widespread hemophagocytosis and cytokine overproduction.”

Complicated as it seemed, it was treatable with heavy steroid use for an extended period of time until it calmed down and you would live life as per normal. Now I am no health expert but knowing that treating a rare medical condition with steroids wasn’t a viable enough option but it was all the specialists knew what to do at the time.

Just over a year after I left the care of Canberra Hospital and continued my life as usual going back to study a Bachelor of Information Technology at the University of Canberra. Life was good; I was motivated in achieving my aspirations and catching up with the years I missed out on from being sick. Hailing from an entrepreneurial background I thrived in the experience to make my own business and be the boss because I always liked that idea.

It wasn’t until the night of my grandfather’s funeral in April 2012 and staying at my Aunts’ house in Wollongong where I became very ill and started vomiting up blood. I came down with a raging fever and was taken to the Wollongong hospital to be treated. I was kept in the hospital for over a week and left with the diagnosis of Hemophagocytic lymphohistiocytosis. I was given medication the size of a horse tablet to take four times a day and if you knew me, you knew I despised taking tablets. For the most part I was taking 155 tablets a week to sustain my health prior to my transplant. It was a mission to say the least, but one that had to be done. It all came crashing down in the end when I was still In Wollongong and I awoke with a chronic migraine. I had asked my mother Lucy to bring me some panadol, I took that and fell back to sleep…..

I awoke at about 5:30pm in a hospital bed in an elevator no idea where. Looking around I saw my parents, a specialist and I was thinking; "what the hell is going on now?" As we exited the elevator I glanced out the window and realised it was early morning only to be told it was 5:30 pm. I had been out for nearly 13 hrs having seizures back at home, in the ambulance and in ICU where I was for the most part of the day. I had a black arm where they tried to administer medication through a cannula but hit a vein so that was interesting. Me being me though, I had a positive spirit and tried to make my distraught family smile. It was hard knowing I was putting my family through that much pain and knowing they watched such terrible events all day killed me inside.

“What the bloody hell is going on man?” was circulating in my head from then on in. You also need a transplant and chemotherapy. WOW OKAY LIFE…

At that time I had been placed under the care of Dr Pauline Warburton at the Wollongong Hospital where I was subjected to an abusive round of chemotherapy for the upcoming 12 months until my transplant had been scheduled, be that we find a suitable donor. So there we had it, an accurate and complete diagnosis. An unfathomable F$*% you from the universe for me and my family, another setback in the ever growing list that was holding me back from living my life and my family theirs. From here on out I was subjected to confinement, emotional shit-storms and a world of anxiety no one can begin to understand.

What’s it like to have experienced (HLH) Hemophagocytic lymphohistiocytosis.

Having Hemophagocytic lymphohistiocytosis really makes you appreciate how important your immune system is. How the disease works is as described best in my case. (Try to take in all the ways your body is instantly affected through the snowball effect it creates.)

Step 1 – You become ill from a virus e.g.; glandular fever in my case. You’re white blood cells begin to stimulate to fight off the virus.

Step 2 – My white blood cells would over produce and become ecstatic in nature and due to the abnormal ratio of white to red blood cells, they would then start attacking every organ and production system in my body.

Step 3 – My body would then go into complete shutdown mode, unless instantly put on steroids and heavy medication.

Step 4 – If you came out the other side you were lucky. I was and was fortunate enough to make it to my transplant date.

The purpose of the chemotherapy was to radically reduce every cell’s (good and bad) reproduction rate to slow the aggressive nature of the illness. As mentioned above it was over a 12 month period of being battered by chemo that left the BMT to take place.

A Bone Marrow Transplant (BMT) was the process needed to replenish my body with the donor’s healthy stem cells that would in turn hopefully rejuvenate my body back to a healthy state. If you read into the associated possible outcomes of a BMT you will begin to understand its success rate and possible side effects that have high chances to impact you for the rest of your life. 

Immediate implications that were highly possible were;

- My body’s complete rejection of the newly transferred cells. Resulting in an incredibly high chance of death. 

- GVHD (Graft-versus-host disease) is where your body rejects the cells in a less acute way by attacking the transferred cells. Possible treatments are steroids until another transplant. GVHD is a major setback for patients. By disabling them from getting healthier quicker, it prevents a positive outcome if you have been affected in a severe way. These two common and immediate reactions I could be facing was a distressing idea to take in. 

My sister in the end become the most appropriate and compatible donor and right off the bat it reduced the likelihood of both outcomes but the unknown was staring me and the specialists in the face.

Welcome to the era of what my mother referred to as the “bubble wrap” period.

As I was given the okay to go home and commence my chemotherapy at Ulladulla, NSW Cancer clinic, I was immediately under strict guidelines to isolate myself from the world I was so used to being affiliated with. Luckily for me I am a total nerd and love the online world a little bit more than reality. So in a sense I had an excuse to stay inside all day now that I was living back at my parents’ house.

Chemotherapy started a few weeks after being home and I can’t hide the truth, It was the worst experience of my life. One I would personally never do again even if HLH does come back. That’s a personal choice I’ve made with myself and I am accepting of that. I had chemo every week for 3 months, once a week. Through this early period of the 12 month cycle I had been subjected to the feeling of maybe never awakening from the 5 solid sleeps every day that I needed to get by. It was a constant struggle to try and stay positive when walking up a flight of stairs equated to a month’s workout. 

Being a competitive and sporty person it was frustrating to handle and I tried to do stuff to make the process more comfortable. But in the end, chemo won. It zapped every ounce of energy I had left. Someone who always somewhat wanted to look nice, I hated the idea of when my hair would start falling out. It annoyed me more than having HLH because I didn’t want to be bald. No way, I thought. I was determined It wouldn’t fall out. Luckily for me though, it didn’t start falling out until about my 7th month of chemo when the doses were intensified.

I thought to myself, okay whatever, its hair and at the end of the day I was more determined to live. Being a person who would love to live forever despite the endless loss you would face I didn’t want to be taken from a cancer like illness, absolutely not, what a s*** deal I thought. No one wants to know they are going to be leaving their family grieving if this doesn’t work out. Knowing how much I had already been through I was determined to make it to my transplant date which was scheduled for the 7th March 2013. Many people need to be aware that surviving to the transplant date is the hardest thing for HLH transplant recipients. At the time I was told I was the only young person in Australia who was going to make it to the transplant date. Previously in 1989 an elderly man didn’t recover and he passed away. I had just realised the ever-dawning realisation of the severity of the condition and had finally come to terms with and understood the outcomes associated with the transplant. If I survived the ordeal I would be one of the first and a potential key figure in Australia with helping discover the root evil associated with HLH and finding a possible preventative or early detection system before it’s too late. To this day, my blood tests are all used for medical and clinical trials and are all recorded for future applications in the field of health care research.

The life of a chemotherapy patient is a confronting reality many people face; in fact 126,000 people in Australia each year are diagnosed and live with chemotherapy until a suitable measure is able to be undertaken. By going through chemo you are essentially sacrificing your body’s immune system by killing all your cells. The associated risks are endless. I gave up a basic right to be able to naturally have kids to live and that’s a scary thing for a young adult to have to face. Chemo absolutely destroyed my testosterone levels and sperm count. So at that point I become flat lined emotionally and physically.

When you go through chemotherapy you need to bubble wrap yourself from humanity until it’s okay to move about pre-determined locations for health reasons only. 

Unable to see my friends, extended family members, neighbours, go out into town and get a feed I was confined to a healthy bubble wrap environment that I treated as a joke because I always wanted to socialise and partake in activities. This became impossible half way through my treatment due to being too weak to walk and unable to do familiar activities alone. I felt hopeless, what you expect to feel when your old and frail, not 20. The fear of catching a stray cold off someone walking by me was a fear that was all too real. To put it in perspective, If I had caught a cold which is now fixable by a good tablespoon of cement and some milk and tablets, I would have had a high risk of losing the battle then and there. This is the case everyone undergoing chemo have to face. It’s a harsh but preventable complex that can become common knowledge through education.

My transplant was approaching and the big move to Sydney was inevitable for my family. We were told to pack for a 6 month experience no one should have to ever bring their family along for. Thankfully, being from a coastal town the Leukaemia foundation in Westmead was able to house my family for as long as they needed. At the cost of donations we were able to live away from home without any major expenses, so people need to be aware of the support these services provide for their families as well. Bless it be I live in Australia where going through the public health system, everything is predominantly free. Unimaginable amounts of money that goes into keeping a patient alive is at the expense of taxpayers and it's something we cannot lose. If it was reversed, my family would have had to of sold everything conceivable to keep me alive and still be bankrupt for the rest of their lives.

Admission day

The confronting reality I dreaded was starring me straight in the face and I had to face it alone to begin with. When being admitted into the ward, I had to sit in a waiting room outside the front door. I was alone, bags packed, medical folder under my arm as thick as the oxford dictionary and a diminishing attitude that was so resplendent all the way throughout my treatment. I was beginning to crack thinking those double doors and the camera that verified if visitors/patients had washed their hands could be the last doors I walk through. Unbelievable but necessary scrutiny goes into providing a safe ward for patients that are so immunocompromised it’s truly amazing to witness. I was then escorted in by a lovely nurse but I remember vividly walking through the ward and glancing into rooms one by one as I walked down to my room at the end of the ward. It was a confronting experience to say the least and one I’ll always remember. I couldn’t believe this is what I was facing.

Unfortunately, my mother was ill at the time of my admission and wasn’t able to visit me for I think about a week or two. This made her experience even more miserable, unable to see her sick son in the hospital when I needed her the most. Luckily I had my dad, with his epic moustache and bubbly persona visiting me every day and relaying information to mum and my sister who had to sell her café and be on standby for the operation. This was really a journey we had to embark on as a family to make it through and the setbacks being at a point, terminally ill I suppose, escalades to for everyone going through pre transplant modules.

D-Day

The day had arrived which was actually set back to the 8th of March, I was nervous but confident I was going to beat this. The transplant being a blood infusion essentially was a fairly non-invasive procedure, for me at least. My sister was set to undertake I think if I remember correctly 13 drill extractions of bone marrow cells from her pelvic bone. This turned out to be a torturous experience for her. After her waking up and going through the pain she felt, I will never forget the sacrifice my sister had to make to keep her little ‘bro’ here. She will always be the sister I see who is the only reason I am here today. She used to nearly kill me with coat hangers and golf clubs but it’s something I’ll always have to turn the other cheek to now. She is an indispensable human and we now have a binding contract where we effectively now share each other’s DNA. It’s a funny thought that, producing throughout my body is DNA designed for another human and its keeping me alive. The question I used to get asked all the time which I would laugh at was “When are you going to start growing boobs” to those people, you all saw me when I was on the steroids and gaining 10kg a week for 2.5 weeks. That’s when!

The transplant was a success and I started to generate positive blood tests. The testing and endless “obs” were driving me mental. Every 2-3hrs every day, all day, whether you’re asleep or not, you would be getting bloods taken and tests ran to see if I was showing signs of GVHD mentioned before and or complete rejection which seemed to be less likely an issue considering I was functional after 48hrs after the transplant.

Usually following a logical thought process combined with the playful attitude towards life and the cornered nature of where I was medically I just went with the fact that I was alive and a free spirit once again. Was that getting me out of hospital? definitely not. I hadn’t eaten anything more than a handful of food over 28 days and the doctors were concerned. People find when they go through chemo it changes how you taste foods and smell the things around you. For me it worked in the worst way possible. The pink liquid hand sanitizer in every square corner of the ward, once applied to a doctors, visitors, nurses and cleaners hands and once I caught a whiff of, It would make me instantly vomit and be put off eating until it was removed from my room. So for me, I was forever protesting these pink bottles that could potentially save my life to be removed because I was sick of being sick and wanting to get out of the ward to breathe the fresh air I had been longing for well over 4 weeks.

According to the specialists, I was recovering at a rate well before they expected I would. It wasn’t until I was threatened to have a Nasal Gastric Tube inserted through my nose and into my stomach to be subjected to and fed through a tube because I wasn’t eating. I was arrogant as all hell that the only reason I wasn’t eating was because of the pink sanitizer and once they finally removed it despite the cleaner having a meltdown over the idea, I started eating again and three days after I was discharged.

I was out, I never wanted to go back and I wanted to eat a cheeseburger. Life was looking great from there on in. I remember walking out the front leaning on dad because I hadn’t used my muscles enough to walk unassisted. I was so weak and unfamiliar with walking that it took well over 20minutes to get out of that ward and down to the cafeteria. It was such a liberating feeling leaving a place I thought would consume me and whoever I aspired to become. Something I accredit to having a positing attitude throughout the whole experience. Even if it wasn’t what I was really feeling inside, seeing the positivity I showed radiate to my family was to me, more important than actually being positive. There were moments in the ward where I was completely helpless and never knew if I would wake up like others in there didn’t get to do. It was such a traumatic thing to have to think about again and write about and being over 3500 words to this point I can’t begin to include all the small but somewhat important experiences I had and felt because I would be going on for days.

The process was slow, and painful to go through but the next 3 months staying across the road from the hospital I was subjected to rigorous testing and invasive day surgeries to track progression. These ranged from; liver, lung, lymph nodes, bone marrow and skin biopsies to keep on top of GVDH and its aggressive nature for post-transplant recipients.

Eventually I was allowed “weekend trips” back to my hometown of Batemans Bay where everyone was eager to see me and track my progression in person. Still this was an unachievable option as I was still at high risk of infection and was for a period of 6-12 months respectively. It was such a relief to be able to go back to my dungeon where I had my own space and wasn’t poked and prodded 24/7.

I was luckily enough to find myself a great partner coming out the end of it all and she has stuck by my side and helped me in every way imaginable. My family and friends who have all contributed in some way or another will never be lost in my thoughts. Having a cancer like illness really throws it in your face, who your true friends and supporters are. A support group everyone needs to have by their side when undertaking such a life changing event and one I’ll be forever grateful for.

I was approached by a lady named Jo-Anne who had lost her 18yr old daughter to the same condition; Bianca had only been diagnosed 5 weeks prior to being taken to early. Jo-Ann wanted me to share my story as I am one of only a few people that can share and provide my story for people going through HLH and to the general public. It really hit close to home and actually generated waves of emotions because she passed away at the roughly the same time I was going through it and being at the same age roughly really shows me how lucky I really am. I felt the need to write this throughout the night to get past the constant tear jerking emotions I was getting from reliving a terrible process. And to get it out of the way so I wouldn’t be pondering what to write throughout the week. 

It has been an experience in itself reliving a traumatic moment that I was lucky enough to see through and hopefully never have to experience again.

I hope to be able service the community of HLH Australia in any way shape or form. I live with it every day of my life because the mention of “cure” doesn’t exist with HLH. I hope to be able to contribute towards HLH Australia for the foreseeable future and have a positive effect on raising awareness through social media.

I encourage you to share the hell out of this story amongst family and friends and anyone else you want. The more people who hear the acronym (HLH) the merrier because it evokes a reaction and that’s what sufferers of HLH need.

Thank you to the people who actually took the time to read this and take into consideration the effects that HLH causes in my life and the other suffers of such a rare disorder.

Cheers,

Chris Murdock

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Extra information not included in the original story.

A great explanation for what HLH is, and how it affects your body and immune system through an animated medium. Great little watch 

Second day in Westmead Hospital and I had a central line inserted into my heart through operation to deliver the medication directly to where it is needed most.

(photo)
http://imgur.com/O89wwiB

http://imgur.com/xtWcXeD

http://imgur.com/UqUs1UE

All my close friends came together one day to all shave their heads in preparation for me shaving mine as well. It was such an amazing thing to experience and know that beyond a doubt there are some great people in this world.

http://imgur.com/QsYFKCv

Playing Arma3 in Westmead hospital on my laptop cos WTF not? If im gonna die, im gonna die playing a game I love haha :)

http://imgur.com/IYvWFME

Transplant day 8th March 2013

http://imgur.com/0RsrhiD

2 years after transplant watching my sister (donor of Bone marrow) graduate from becoming a teacher.

http://imgur.com/sSFLgH4

2.5 years after when I was asked to share this story of mine to help the unaffiliated and educate anyone I can on what HLH is.

Link for the images is above and once again here to make sure you get to see the whole side of the story and not just the text version. 

http://murdockie1992.imgur.com/all/?third_party=1

http://imgur.com/KgSxNK8

2 weeks ago when I asked my partner to marry me and the contrasting difference between being sick and unable, to meeting the best women there is who helped me through a lot of my illness and was just an all round lovely human being..





So guys, thats it, thats my first Steemit post/article detailing what it is like to have such a rare disease. I dont want anything from it, just exposure to the community as im always loving the continuous progression in technology and the bi products of everything we use to enable better understandings of the world around us.

Thanks and take care :)