Hello everyone, I haven't introduced myself yet in this community and it seems that not all doesn't know me yet or haven't had the clue who I was. My name is Arnold martin from the Philippines. I am a dialysis patient for almost 19 years now in December 1st because I started dialysis last December 2001.
During my time as a dialysis patient my bones deteriorated because of lack of financial capacity in affording my laboratory exams which lead to having my phosphorus levels getting high in an extended period of time leading to a condition called "Leontiasis Ossea" which explains why my appearance is so.
I don't usually go public, but when I do, it's graphic
This Was Me From 2017
My appearance is caused by a rare bone complication called Leontiasis, "Lionface"or "Big head" syndrome brought about being in a dialysis for 15 years because of a failed bone mineralisation because of a failed kidney. Somebody asked for an evidence of me so there you go.
Anyway, there isn't much to say about myself, not a good story to tell other than me surviving this rather very peculiar way of fate that I received from life and vice versa.
My name is Arnold Martin, I was 23 years old when I started my dialysis Dec of the year 2001. Dialysis is about cleaning my blood, it is drawn out from my veins, graft that is called an arterio-venous fistulae, where a specialized surgeon splices artery to the best vein so that the machine can get a strong stream of blood so that it can clean a lot of blood in around 4-5 hours, the standard dialysis session time 2-3 times per week.
The dialysis also takes off water from my body, it can do that by applying a variably adjustable negative pressure while filtering the blood. It is because I cannot pee anymore, my kidneys or if they can be called kidneys today doesn't produce urine anymore. If the machine doesn't take out water from me, I will become water-logged and drown my lungs as a complication. So I have to control my fluid intake as well in the process along with practicing a strict dietary discipline so I will feel better between treatments.
Then my life went into another chapter. Little do I have known that I was getting a mediocre dialysis treatment. So in turn the backlog of toxins accumulated on my body after 2 months, my blood pressure shoot up and I went into seizures for two days. I was also "out" of myself during those times because my creatinine level is over the charts. Basically I got crazy while at the same time having seizures.
I continued to get a less than satisfactory dialysis service because on the third year I went into a charity dialysis service from the church I belonged. They gave us a discounted session until the minister abolished the fees and it went absolutely free but we have to bring or own alcohol, cut our gauze swabs, even prepare our bed sheets. Until finally all operations stopped because maybe because no money can be made from it. All money of course go out.
But I went out with the church paying for my dialysis for about two years until I get managed to get an insurance to cover much of my medical needs, thanks to the government. But still, this medical malady is expensive, time consuming, and very, very hard to manage financially. I cannot even save some money for myself, my money always goes to the doctor's professional fees. It is just my body is very resilient, tough you might say or maybe I am just disciplined about managing things.
Me from 2010
Myself Currently
I remember the line from the movie "Forrest Gump", he said, the life is like a box of chocolates, you'll never know what you'll gonna get. And so what I got from the box is not even something to be chosen by me, I believe that it was my fate that had chosen what life should I live or should I say, survive from. Some people told me to fight and continue to fight, I mean what? I am not a soldier nor a gladiator and this is not Sparta. If I would fight, then it is just a losing battle, with no victory in the end, only defeat. Are you not depressed yet? I told you my story isn't that interesting, just one of those things when you are walking down the street and you see an ugly scene or place and you suddenly look the other way.
I was sick even before I knew that I really was. During my childhood I am what you can say a frail kind of kid, I never participated in sports, I am just there on the sidelines watching my friends play. I did wonder why do they have that energy which I cannot even achieve physically but I didn't bother to mind or think about, so I just waited and waited until it dawned unto me what I will be dealing with, a kidney failure.
Before my kidney finally conked-out, I had the worst possible experience a person can feel, the chronic fatigue syndrome, weakness, recurring fever, and the severe cramps I experienced especially a few years before my kidney failed are just one of the few things I can tell. As you can see, the body can tolerate these things but a person that have it is suffering.
I started getting dialysis around December of 2001, I was 23 years old then, still hopeful that I could get a transplant but monetary constraints did not let me get a new kidney. It was only the financial help of my other brother made me survive which I know greatly affected his life as well, even maybe marrying late because he takes care of me of his support. He is not obligated to help me, he is just being a "Real Good Brother and a Friend" for me. I know I am such a drag, but he is doing great now, with a wonderful family and a home not far from where I live.
OK back to me, to sum it up medically, I suffered predialysis with terrible symptoms for years and suffering now post dialysis, I am on dialysis for 19 years already. And what happens to a patient's bone after 15 years you may ask? Well he would get a rare condition called "Leontiasis" where the face structure is deformed resembling a face like a lion. But I a lion's face is natural, mine is a freak show. Now I get rubbernecks, stares, and whispering. I do not even bother looking into a mirror, I myself do not recognize what I see there.
I do not mind my appearance but what is bother me is my speech disability brought about by thee bone inside my mouth getting bigger by the day. A few months before I can speak without a lisp, but now people are having a hard time figuring what I am trying to say. Are you not crying yet? The worst thing I am suffering from is that when I eat, I have to lie down, because when I begin to chew, the food goes out from my mouth so I have to compensate by chewing them lying down so that they can fall back right in which doesn't really sound that easy because I have to work it out too.
I could care less about my appearance because I could wear a mask like Darth Vader and be like a a feared villain, but my speech disability will betray me as well as my terrible posture. And why you would ask? Kyphosis, another spinal bone complication that really listed me to be a bonified member of the terribly disabled club, because it was really terrible to get this condition, I am quite worried really, I could break my back one day and be a vegetable because it could of course paralyze me. I was contemplating some other day when taking a shower about my face's appearance when suddenly my hip joint move because I was scrubbing the other leg as if it got dislocated from it's socket, luckily it didn't and I immediately rebalanced myself standing with both leg, and I thought, the hell with my appearance, I need a working hip joint.
Miraculously I do not require a frequent blood transfusions or those expensive Erythropoeitin injections to let my body create blood or it really be like adding more injury to injury. It now allows me to not suffer anymore from insomnia and loss of appetite which by the way plagued me for years. It is just funny, I can now have a normal appetite but mechanically eating my food is another thing that I have to contend with :sigh:
I am just envious about my neighbor, he also had a kidney failure but a few months later he had a transplant because of his relatives and supportive father. If I only had three brothers, the one that I have that supported me right from the start then maybe one of these I am going through had happened, but I only got one, and one is not enough. Pointless to have that negative feeling of envy though, I am just happy for that neighbor of mine.
Yes, my condition had made me to be semi bed-bound, I am really bound, the only place I get to walk to is the bathroom when I use it. I can't just hang around very much because I cannot sit or stand for long or my back would hurt terribly although now it was my feet and knees that is hurting.
I supplemented my financial needs from the income that I get right now from crypto trading which actually isn't that much and blogging. I have many things to say, this article just got super long for me already, I will just write something again what will come to my mind.
Right now I am under medication of "Cinacalcet" 30 mg tablet to treat my hyperparathyroid which caused my Leontiasis condition. I am also taking a phosphate binder called "Renvela" 800 mg. I am also taking my antituberculosis "Rifampicin-Isoniazid" which I will complete the treatment less than two months from now. I am also taking Calcium carbonate tablets and Vitamin D to allow my bones to heal in the process.
This was my edited long excerpt from my article from here