This was yesterday 40 seconds standing...
My body settled again for maybe a minute and I made it into the shower. I wanted to get the blood off me, my hair was full of it. I had to get cleaner, I did not want to be found so bloody. I managed one minute standing in the shower then realized I had to get out before I fell again suddenly, I felt a horendous wave of something building inside of me. I barely made it out of the shower and fell forward projectile vomiting blood all over the walls and a huge gush became a pool on the floor. I had long shut down my digust, I knew it was my body trying to die, trying to live and to let go and accept the outcome. But the smell...
Finally it ended, I wrapped a towel around my bloody wet hair, I had not been able to do more than let shower water pour through it, it was a mass still of sticky blood. I made it to my bed, no I wasnt calling 911, I called my son on Maui and told him now fly over here immediately, I called my husband back east and told him the same. My son was here for me early in the day, he began to immediately go shop return and feed me. He could do it, I believed that. He was a chef, he is a kind man.
My husband came the next day and they began to feed me back to health, they let me decide how I wanted to handle this life and death emergency, they allowed me to run my risks.
Its been more than two weeks since my black out bleed out. I have yet another week to go. My doctor refused to see me at all after the bleed out. That was was emotionally cripling. She was angry I did not call 911 or check into emergency. So she had me wait three weeks to see her when she knew I was in a dangerous position. I truly dislike Queens Liver Center but its the only hospital on the island that sees patients with Liver disease and Hepatits C.
I've been in emergency rooms, its a den of neglect and guess work, one small mistake and they might have been my ending. These liver doctors are like mechanics. I am not a few thousand pounds of metal, I can't follow their reasoning. All they do is read blood work, run ulra sounds and endoscopies then give you the readings they got from technology. Its maddening to be treated like that, like I am a piece of something on a conveyor belt to be processed. Where is the human touch? Afterall, I am dying.
So I struggle on from one day to the next waiting to see her, hoping I am not in some near death sceranio internally. I feel neglected and used because I have excellent insurance but no where else to go on this island.
My days are racked with pain, I still have some kind of mouth infection. My doctor never wanted to see it, my family doctor out here in the country has never even taken a culture or looked in my mouth with a light, I don't understand this lack of interest, this unwillingness on their part of showing no concern or interest. Its unsettling, I know we Hep C people can get horrible infections circulating throughout our bodies and that its impossible to put us on drip anti-biotics because it would shut our liver dowm. I can't even take a wee bit of tylenol for pain and inflamation, it flatens my liver and it can cause it to bleed.
Before my bleed out, my doctors put me on Nystatin for my infection without getting a culture or even looking in my mouth. I was told it was okay to take some Tylenol and use Abesol for mouth score pains, all of this I did and day by day the pain took different forms, my hands gnarled horribly, it took a long time for the pain to subside, I'd finally collapse crying. Then my arms began to gnarl, that was shocking, my hands have been a bit of s problem but I do spin hoops, my legs cramp but never gnarl and by my forth day on Nystatin my legs were buckling, I'd fall into the floor in pain feeling them tighten and beginning to gnarl. I'd lose it. That pain caused me to fall on the floor in agony, my arms would begin to gnarl and and I'd have to grab the frame of the doors of my tiny hallway in an effort to stop them from drawing up. I'd press my legs against the frames of doors in front of me and push hard. I felt as if I was on some torture machine resisting its force of drawing my body into one solid hard knot, I feared that gnarling could move into my organs and cause my liver to begin to contract too.
So I lie here somewhere between peace and fury wondering what I will next be stradled with to endure.
It wasn't long until I found out. Today is Friday May 2. A week ago Friday I went into Honolulu with my husband. I had labs done, three weeks had passed since my bleed out out. I had wanted labs done right away but my doctor wouldn't allow it, she wanted me at the emergency room, finally she had her wish.
Gay and I had a wonderful day even though I was very fatigued and weak. When we returned home to the north shore in the late afternoon, my doctor rang and told me my Hemocrit was 6! I had to go to Wahiawa ER immediately. There they determined my sodium level was so low my life was in danger, my electrical system was about to shut down which meant my organs were heading into shut down, heart, kidneys just for starters. It was beyond just a transfusion. So the work began. I was told if I got a rash from the blood it meant my body was rejecting it and they would need to give me Benzoid drugs to stop the rash but Benzoid drugs can shut the liver down, no way to know but try and see. I had the good luck of not rejecting the blood. But I needed a second transfusion. My doctor at Queen's Liver Center wanted me taken to Queens Hospital in Honolulu so I waited to be assigned a room at Queens. Once that was accomplished five hours later, I was taken by ambulance to Honolulu and Queen's Hospital for another transfusion and an Endoscope.
Until the Endoscope, I was eating well, I did not have so much pain I had to lie down all the time. After the scope, I had so much pain I moaned and cried like a wild animal stuck in a bear trap. Finally they put Morphine in my IV. It has ben a week since I was released from Queen's Hospital in Honolulu. Yesterday, I was able to begin eating solid food again, very slowly and carefully. I have to eat reclining. I still moan in pain when swallowing once the food hits my upper gut but I don't moan as deeply now. I still cannot walk, stand or sit but a few minutes and always afterwards, I am in deep pain which can last hours but I can't just lie here every minute day and night.
I am deep into dreaming myself back into my hoops to dance, I am dreaming myself back onto my race road bike. The Ascites is diminishing slowly, once it has passed, I will be able to move freely and begin the work of building myself back into a woman that at age 62 with a failing liver and monster of a virus cycles 35 mile stretches along the ocean highwayof the East and North shores of the island. I remember exactly the exzillerating feeling of being that woman, I have forgotten nothing about her, I will catch up with her again and when I do, I will abandond this self and mesh with her spirit and energy.
Maybe I sound arrogant, maybe I don't but I admire myself, you see, I was a powerful woman all my life doing everything my way but drinking fast and furiously not cycling! I replaced her with this part of me I never knew existed and it was not handed to me, the ability to do it, I pushed and I learned to push beyond my wildest expectations. When I did that, I learned to love myself and as Whitney Huston always sang so beautifully, " This really is the greatest love of all." I will be her again. I am not ready to sing "The Blues." 5 3 14
May 12, 2014 Monday night
Yesterday I had a great swim at Kewalo Bay aka Turtle Bay to me. I even hoop danced on the shore then hoop danced in the bay. That was a first and to my surprised I did it well. I was so happy, its been weeks and weeks since I had a swim. The last swim I had was when I swam with the green sea turtles at Lanikea beach. I cycled over there, swam then cycled back. It was a wonderful day and I felt confident I would reach my new goal of cycling the east shore alone and increase my trek there by at least 10 miles round trip giving me the ability and joy of cycling 35 to 40 mile stretches.
Instead a week later I was very ill with some kind of mouth infection that just refused to heal. I became more ill with everyday. It was frustrating because my general practioner on the north shore would not do a culture nor did my liver transplant doctor want to see it. I was stuck with it, they offered me medication that did not work, my mouth looked freakish, it was filled with white stuff like looked like churned buttermilk, I thought it was Thrush so for a few days I used the Nystatin my country doctor prescribed even though she adamantly insisted it was not Thrush. I used the Abesol my Liver doctor prescribed for pain.
Nothing helped, the physical spasams my body had been seized with became more intense, I was locked into a lot of horror with no help. The third night after beginning Nystatin, I used the Abesol. The blog above is the consequences of the trap I was caught in. The gnarling began, the bleed out followed. Two weeks later I was getting a double transfusion, I had experienced nearly dying that night. Now I know first hand what it feels like to not know if I will live or die.
I am still healing from my Endoscopy. The doctors have nothing to say about this. In two weeks, I will have another Endoscopy in Queen's Hospital. The last one was only two weeks ago but now I am a bleeder, I have Esogphaus varacies and the doctor who did the Endoscopy banded two,he counted five. I have been told I can bleed out again suddenly just as I did a few weeks ago.
I saw my Liver doctor today and in the morning I begin taking Solvaldi, later in the early evening, I take Olysio. Its a twelve week regime. I am ready to do this. I want to kill this virus but even if I do, I am still dying of End Stage Liver Disease. I need a transplant but to even qualify for the possibility, I must wait two full years.
Wrapping my head around this is the hardest thing I have ever faced. My early death feels far too close. I need a lot of luck. I want to live another ten years but I wonder if I even have two years left and a transplant is no piece of cake. Lots of us with Hepatitis C need a new liver. There are not enough livers for all of us.
I look at other people now and envy their functioning livers. A strong liver seems far more important of a possession than any thing else I can imagine. These peopke can eat. I have to think about everything I consume, I can not digest fat very well at all. My liver has quit making bile, I no longer produce much Albumin. It carries protein out of our bodies otherwise the body seeps fluids into the body cavity and the walls of all my organs are thin. The ammonia that is not thrown off from the protein posions my body. Right now, I have Ascites, it could be a far worse case of Ascites than it is but its not good, its very painful, its disturbing, my body is swollen hard and I look 3 or 4 months pregnant. I am tiny though and I can hide it for now and no one really can tell.
This is the person I long to be, this is the person I fear losing. I am heart broken. No one could possibly know what its like, no one I know, everyone I know is healthy, working, eating in restaurants and still dreaming, many of their dreams are bound to come true, I wish my dreams could come true. I have given up dreaming for anything more than to be able to cycle again. It feels like I have reached the end of my trek. Treatment is my only hope, killing the virus could mean I will live another two years.
I want to scream " how did I get here? " but I already know how I got here, I was a girl, I wanted to be loved. I wanted something of my own because I grew up feeling not very loved. My family was a war zone of sorts, there was always fighting, boozing, mean spirits filled my life, I learned to escape using fantasy. When I grew up, I really did not know how to find a reality in which I could be safe and loved so I settled for what came my way. Many hard things came my way. Relationships and self esteem were something I knew nothing about, I thought getting drunk, staying drunk, fighting for love, getting emotionally abused were normal. I wanted a quiet and peaceful life but I could not find one.
Its inevitable that children raised like I was end up in up in deep trouble. It was easy for the alcoholics and drug addicts and the basically dysfunctional to get me into their trust. When they were hi, yep they could get me to believe I was loved. Those were the men that I ended up with. I innocently fell in love with one. I thought eventually he would love me, that is how children from dysfunctional families reason. I thought I was safe with a man I fell in love with. I was wrong. I went along with whatever he asked of me, I wanted his love. I became a junkie with him, that became my normal. It did not matter that I never was a hard core drug addict, he was, his male friends were and I hung with him and he hung with them. We all ended up with Hepatitis C, I am sure if it. In that nine months of my life, I had no idea what had happened. In 2002 when living in New York City and working as a photographer with a hell of a drinking problem, I found out I had Hepatitis C.
Fast forward to today. I am sober. I am a cyclist, a hoop dancer, a jock when it comes to physical discipline and I am dying, yes living but living with death at my elbow. I do not like it. Its infuriating. Its a catch 22. My options are limited. I can do this treatment, I can hope for a miracle. I must buck up to reality and forget fantasy because without luck and practically a miracle, my days are almost up. I will have had my life as hard and as beautiful as it has been.
I have never been so clear, so strong, so sober, so determined and as happy and beautiful as I am today. This is my achievement. I did this, no one handed it to me, in fact many doubted what I was creating for myself. I ignored them and clung to those who saw me capable of being where I am today, I love myself. It has taken a life time, it has taken heartbreak but I made it. I beame my own life raft. I know who has loved me in life for just being me, for just living my own story out in the open. Even today, these peopke remain my life raft. I am admired. I am loved. I have outgrown my first family, those people who believed I would amount to nothing, who still see me exactly the same. What they see is their reflection in the mirror not mine. If they were right, there is no way I could have created the family, the friends, the daring adventures that define my existence on this planet.
I am not perfect, I am simply one hell of a great gal just ask anyone who knows me.
5/18/14
Last Tuesday, I began treatment. I am on Solvaldi and Olysio. The Olysio makes us photosensitive. This is the only limitation I have. So I now cycle at night. Its a real challenge, its an amazing thrill. I have a white light on the front of my race bike and two red flashers on the back, its impressive how traffic responds to me. I am getting a lot of cooperation but I do work for it. I never forget I am dependent on their respect so I cycle with focus. I never dash out into lanes without moving into them carefully, if I need to move out of a right lane into a center one, I dismount, check traffic then move left. I keep out of traffic lanes and ride to the left of them but I allow myself enough safe space if someone is a jerk then, I can even move a bit further, safely, to the left. There must be a focus at all times on this space out here in the country. Our roads are the last ones the city keeps up and we have no bike lanes on the north shore. Slipping off the shoulder is dangerous an tires as thin as race bike tires. There is no grip, you must be able to feel flow. Its easy to come down if I slip off the shoulder, there is not really a way to predict which way the cycle cound lean and fall and falling left into traffic just will not work out. At night I can see the white lights of the cars behind me. I hit stretches of highway where there are no street lights so I slow carefully so the cars behind me can see I am aware of them and the space they need to. I trained to peddle as slowly as possible and its in these situations that pays off. There is no mistaking that I want all of us to safely continue forward but I do not dismount, that would cause them to have to draw conclusions about what I am doing. Its not safe to send a message to them that they might need to stop. If there is a flow of traffic behind them then there are too many people and cars making decsions and every driver just might draw a different conclusion then there would be confusion for everyone involved, its best to carefully and thoughtfullt peddle forward. I love locking my mopind around the challenges of cycling. It frees me from any mindless thinking. Oddly enough, I cycle in head phones. Most people won't do this but some cyclist including me agree we are more focused without the rush of traffic in our ears. I do it also because I am so ill and my energy level is comprised. It was proven years ago that music does increase performance time by as much as 50%. This certainly happens for me but yes at times I cycle withou head phones but its usually because its raining or my i pod shuffle ran out of charge. Because I love cycling in rain, I bought a waterproof i pod to cycle in and rain geer. It too is an amazing challene especially at night but I am hooked by the thrill of it. Its now 10:30 pm and I am longing to ride the dark empty streets in the night stillness, the island winds are so gorgeous on the senses at night. I am not afraid to do it. I just have not cycled this late yet. First I am pushing for before daybreak. The problem with this is that because I am ill, I need to eat and drink liquids before I mount. Its just easier on me riding after the sunsets. I had feared the treatment drugs exhausting me and keeping me from cycling the three months I need to be on them but honestly, I don't really feel like I am on any drugs at all! When I amcycling, I cease being a caged bird locked in the confines of my liver disease and billions of Hep C virus. I feel more free than I ever have in my life, only music and dancing compare but this won't circulate blood and oxygen as well as cycling. Cycling takes mega loads of pushing one's self beyond physical and mental limitations. Fear is the enemy, it must be shut down. This is a serious discipline, Icould lose my life cycling. At times I am on a down hill fly that must be at least 25 miles an hour but its most likey 35 miles an hour. I weigh 107 and my cycle weighs 25 ponds, yes I have to focus and feel the road beneath me, my life depends on it and I have no doubt no one wants to see me lose control and go down or flying through the air in an inevitable crash. For me, it could be fatal. I am a bleeder, I have a remarkably low Platelet count. I can't afford bleeding out, with a crash there is impact and its never going to be a simple crash, those are the ones that don't count, I just shake those off and keep riding.
I am on treatment again, this time I am on Solvaldi and Olysio. There is a lot of improvement! My platelet count was 18 before my bleed out, after a few weeks of Solvaldi and Olysio it popped up to 84. 100 would put me in an even safe place but at 84, I now have some clotting factors. A normal range that most people have is 350 to 500 but at least now if I bleed out again, my blood will clot more quickly.
