It has been overcast here and I've been reclusive as sickness has hit another family member. Just hanging on, day to day as I wait to see what next surprise is thrown my way.
Even though my MELD is down I still can't work, will probably never work again says the hepatologist. I've cut to the bone on every bill I can touch, but it's that time of the month when it's should I buy my prescriptions or pay the bills. I appreciate everyone's support and hope you pass this fundraiser on. I am not only depressed, fatigued, sick and in pain most of the time I can't work to raise my station in life any longer. Please donate to my fundraiser, it only goes for the essentials and I truly appreciate it. Thanks in advance.
So, my visit to KU Med was great! My MELD is down, it's good to starve, ha ha. No, I don't eat much, just Ensure and fruits mainly, told I need to get protein, but the thought of that gags me. They suggested protein powders without the creatine of course. I like crushed ice drinks so I'd like to try some of the protein drinks. I have lost a lot of muscle mass and that's not so good, so I need 80-90 mg of protein a day. Only been getting around 10/day, so I need to figure out how to afford the protein drinks. Anyway, I am controlling my disease right now, as long as I don't get liver cancer (big possibility with cirrhosis) they are waiting for the new interferon free drug to come out early next year and use that on my Hep C. The current drug regimen would set me back and may cause an emergency condition regarding my need for a transplant. Right now, I am happy that I am exerting some control over my disease, lo/no salt has been my mantra and that has been my saving grace:) It's just the continuous fatigue and pain that sets me back, but I rest (a lot!) and try to walk a few days each week to keep up my muscle strength otherwise. Thanks to all who are supporting me, I am going to whip this disease and get back to work at some point. I just know it. I don't want to be on disability, but there is nothing I can right now other than follow the diet, exercise and medication regimen.
Going to hepa doc tomorrow. Had a garage sale last weekend to raise money for gas to get there and food to eat for the next couple weeks. No one would choose to be on disability. This life sucks. I was always able to work, work two jobs if needed. So frustrating to be in this condition. Want to get the transplant so I can get back to work. Even tho I'll have to go thru Hep C treatment after the transplant at least I'll have a functioning liver again. Get my energy back, get rid of this constant pain. Anyway, anyone who is following this wanted to let you know I'm getting my updated evaluation on MELD score. We'll see where we're at I think.
So, no new donations and I'm starving to death. Had a garage sale with my daughter, she gathered up everything and posted on Craigslist. Surprisingly, made some money, enough to go to the store, get some food for us and the dogs. Left over cash I called in my medication and was able to purchase that also, even have some left over to make it through this week before I get my disability check. I have to have enough gas money to drive to Kansas City to KU Med this Friday for my appointment, very important as I get tested to see how much further I've degraded, or haven't degraded. It's a matter of how much time you have on transplant list as well as how sick you are so I can't miss these appointments. Sure wish people would pass this around, get some donations. I just use it to survive, medicine, doctors, food. I live a spartan life. I know there are many worse off than I, I have cut and sold everything I can think of, even the surprising junk I had in the garage-ha ha-so would appreciate donations. I definitely appreciate you that read this blog. Truthfully the garage sale set me back a little physically, just the heat I think, but stumbling and almost falling again. Pain levels pretty high also, but I think resting on couch and doing nothing for the next week will get me back on track and able to get around again. Also, thanks for support!
Too broke to get my Xifaxan until my LTD check arrives on 24 or 25 of this month. Taking one a day until I get reupped on my benefit check. Any donations welcome at this time.
So frustrating and I find people are taking advantage of my diminished capacity to understand financial dealings. I used to be sharp, now feel so dumb, don't understand the simplest things, thank goodness for my daughter, she explains everything and sticks up for me. Latest scam was Rusty Eck Ford, they said I had a free rental while they tried to figure out why my air conditioner quits working intermittently, gave me a "free" rental car, but they didn't figure out anything and left me with 5 miles to empty on my gas tank. Then tried to charge me $97 for the car they "rented" me. I told them it was free, they pointed out on the contract, see, you have "scratch" protection at $19/day. I freaked out, I don't have any money, what am I supposed to do? They decided to keep my $30 "deposit" and let me go with no charge, only to find my car had no gas in it. Am I getting dumber by the day? I didn't used to get fooled. Cirrhosis and HE are a bitch. I am still waiting for food stamps, but I probably didn't fill something out correctly and won't get those either. It sucks being poor after getting a paycheck for being smart. I shouldn't have taken it in by myself. I'm not supposed to drive, let alone sign anything. If someone would decided to donate to my fundraiser my daughter is now in charge of paying my doctor and all my medical bills. I'm too confused to do anything. But, I did sleep about 17 hours yesterday, missed the 4th July. I haven't missed one since I was a little kid, it doesn't matter. I believe I am slowly dying and won't make it to a stem cell grown liver, let alone a dead donor liver. Frustrating.
Back to doctor today, another $45 for prescriptions and I'm wiped out financially. Was hoping for food stamps this week, but found out it will take them another 3-5 days to review my documents. Long day, first at doctor then walking into SRS building to submit my documentation only to find I'd either have to wait for 4 hours minimum, which I can not do, can't sit that long, or leave my documents and hope they get to them in the next 3-5 days. Wish someone would donate to my fundraiser, would be a big help at this time. Had to get prescription, food is optional, but welcome.
My abdomen is killing me today as usual, the local doctor is truly trying his best to get me regulated, but I feel like such a failure. I'd be OK if I didn't get up and move around, but they want you to exercise a little so you don't waste away. The surgery is very traumatic on your body, it's like a 6 hour surgery, they have to remove the gall bladder for good, but then all the bile ducts and blood portals are difficult to find and connect back up when they remove your diseased liver and put in the new one. Then you wait to see if you reject it. Hopefully not since there isn't a machine they can put you on to save you, you just hope there is another donor soon enough before you die. That's what is scary about it, they do their best to match you up, but still there is the chance it won't work or you won't wake up from the long surgery. My lungs are good, they test you for that since you're under so long, then they have to have that thing in your lungs to help you breathe, that's another scary thing, I know you panic when you realize there is something in your lungs breathing for you, you try to pull it out and they have to keep you sedated until they decide you're ok enough to remove it, but you ARE aware of it being there. Plus the giant incision to get your liver out, it's quite large. I just hope I make it ok if I get that far. Please help me prepay some of these bills, I'm already behind on several since I've been analyzed, poked, assessed, etc. not to mention the constant medication that I'm buying. Much of it is speciality so my co pay is not the usual $10 it's $35, not bad since I have insurance, but my income has dropped to 20% of what it used to be and that's hard figuring out what to pay. My kids help with the house payment, insurance, but they don't make that much either. In case anyone has noticed, this generation of 20-somethings are stuck in low paying minimum wage jobs and are forced to live with their parent. I'm not much help these days, they help me. I applied for food stamps, so hopefully I will have that ability to buy some decent food by tomorrow, that's the reset date in our state and I'm looking forward to what I can buy. I'm thinking watermelon of course, haven't even been able to afford one of those for the past 3 weeks now, I drink one can of Ensure and eat a bowl of cereal, low maintenance me. The kids like grilled cheese, egss, potato concotions and stir fry rice. I can't eat that fried stuff, I pay for it with swelling and horrible pain, so I do like fruits and cereal. Somedays not enough available in house, so like I said, if you contribute to my fundraiser it just goes for basics, doctors, medicine, food. Maybe tomorrow the food burdern will ease up, I'm hoping. That's all I have for todays information.
Scheduled for the dreaded ultrasound to see what my liver looks like on July 19, then in to see hepatologist. Actually, it's better to have them squish my abdomen around with the ultrasound thing than to have them extract liver out of your body with that biopsy. That was the worst. Many people claim they had no problem with the liver biopsy, but I'm here to tell you it hurt like hell and I'm not looking forward to that procedure again although I know they have to do it at times to assess the true damage. Mine was a shocker last year, nothing like finding out the reason you don't feel so hot is because your liver is dead or "decompensated" in doc speak. I am compliant with what I eat, drink tons of water 'cause the Lactulose extracts water out of you while removing the ammonia buildup that occurs to make you act like a goofball, shake, fall down and pass out. Sometimes I get very angry thinking about the fact that I never liked alcohol, years would go by without drinking anything, most years just a toast at New Years or something and then I end up with cirrhosis. Hep C-truly the silent killer of my generation. It's frustrating. It makes me angry to think someone like David Crosby ends up with TWO replacement livers because he didn't stop drinking after someone gave him the ultimate sacrifice for his first one, he just trashed that one like a box of Kleenex from Wal-Mart. Well, I'm healthy otherwise, I'm not a drinker and I just hope to have the privelage to obtain a healthy liver and then get through the Hep C treatment program. I want to live.
I posted pictures of my son and daughter, tips for fundraising say you can't have too many pictures so I'll try that. I wish I knew more people to send this to, trying to tweet it, asking to pass this on. I'm not a young cute kid with decades of life ahead, yet life is precious to me also. I would truly appreciate it if you choose to donate and support my quest for a new liver and another few decades of life. I too want to live. Thanks for reading this.
Thanks to my latest donator, I really appreciate the donation. I can get my medicine now, so it definitely goes to good use. So many charities asking for money I know it's hard to figure out which ones are real, but I'll be glad to talk to anyone who is hesitant about donating, I am legit, definitely need a liver and just found out I probably could get food stamps so that would be a big help also 'cause I'm literally starving. So thanks for the donation, please, anyone who reads this look within your heart and give even $10 or $5, whateve is comfortable for you. Of course I'd like a huge donation to make my house payment, electric bill and all that, but it adds up and is truly appreciated. Love you all.
So, I'm looking at ideas how to get the word out for my fundraiser. Don't know what else to do, I try to update and let my supporters know what is happening. As of today, I have $11 in my bank account, my daughter and son help with what they can, they work minimum wage jobs so it's not like we're rolling in the dough. If you could forward this fundraiser to people, maybe it will catch fire. I don't know, but am trying anything. I do know I was supposed to go to the doctor today and get another prescription, but it's on hold right now until one of my children gets paid on Friday, rescheduled appointment, just hope I don't slip into the HE coma state again. I don't eat much, so that keeps ammonia down. HE is described here http://www.xifaxan550.com/about-hepatic-encephalopathy/symptoms-stages
I am at stage 2, holding steady as long as I can keep taking medicine, but I'm out of Lactulose right now, not good. So, I am just drinking water, eating some watermelon as that is the easiest way to keep the ammonia down, less food. On the other hand, I'm supposed to keep muscle weight on, that's why I take Ensure, but again, drank my last can today. I don't want to sound dramatic, but it is rather dramatic. I'm hoping I get approved for SS benefits soon, they called me last week said they were scheduling an evaluation test for me, but I still haven't received that information so I called them, thinking I might be mixed up. Hope they call back. My insurance from work skips over to LTD (long term disability) and I had applied last month knowing this would be an issue, but they keep coming up with more forms to send in. It pays around $75/week, not much, but would keep me in medicine/food on weeks like this. Just kind of desperate at this stage of the game and hope anyone who reads this will pass it on to a potentiaal donor. If I can just get the transplant, MELD over 20, I could probably go back to work after another 6 months with luck, no organ rejection.
Thanks to all who read this and have supported me. I will follow you back on Twitter if you retweet my fundraiser URL. Even $10-$20 is great at this stage, it all goes for medicine, doctors, and whatever I can pay regarding utilities and the house payment. https://www.youcaring.com/medical-fundraiser/liver-transplant-fundraiser/60717
Seriously need assistance with medical bills before the end of June, any donations are appreciated. Please pass on to anyone who might assist. I apologize for not having LTD, like many I thought I would work and live healthy for a long time. Every one of my other vital signs are excellent. No high blood pressure, no weight issues, barely any gray hair, yet waylaid by something that attacked me 38 years ago, laying there silently until striking me low last year. If I could work I would, as I always have, yet can not do this any longer until I receive and recover from a liver transplant. If they could grow a new liver in the laboratory from stem cells that would be awesome, but they don't. I have to wait for someone else to die, and that person must have a blood type that is incredibly common, O+, much competition for that particular liver. So, by the time I rise to the top of the list I will be nearly dead and may not survive the transplant. Until then, I can't work, going through SS disability application at this time and hoping I am approved. Until then medical bills and insurance payments must be current, or I certainly drop to the bottom of list. Thanks for reading, please donate.
So I swelled up like a toad by Saturday, legs ached, hot, red; my stomach was distended& I thought oh no I'm getting ascites, I'll have to be drained of fluids at the hospital, they'll tie off my spleen and it will be awful. So I drank water, put my feet up, ate watermelon and a can a day of my Ensure. By yesterday by stomach was tolerable pain and swelling was way down. My skin split out on my lower leg tho; it was that tight. I don't want to go to hospital so if I only drink water and ensure that's what I'll do. No surgery for me until I get that transplant. Thanks to Robin Carmichael andChance Carmichael for their support when this happens. Love you guys! !
Chance took me to the opening of This is the End, went to top row so I could put my feet up on the railing, resisted the great Warren smell of popcorn since I don't need any relapse on swelling and I laughed thru most of the movie. They say laughter is the best medicine so it might be why I feel much better today, plus my legs are back to normal and my stomach is deflated.
Yesterday I started swelling in the legs and abdomen, my legs and feet were aching so badly last night I couldn't sleep, tried to elevate them, took several warm showers, drank water like a fiend. Today the skin split and bubbled up, looked like blisters on my ankles, but finally the swelling is going down, my abdomen remains extended and tight with the usual sharp pains and spasms. My legs are so hot and red though, if they don't continue to shrink i'm calling the doctor. I know diuretics are not that effective with the liver not working, so I'm trying the natural way, water and legs elevated. I was so hungry today I finally ate some watermelon and fruit since they are supposed to be ok for water pass thru, but it made my stomach ache even worse. Got to tough it out, it should get better. I certainly don't want to end up in the hospital with that ascites thing, but I'm not sure what to look for. My gut doesn't look as bad as the pictures I find on the internet so I guess I'm ok. I'm not running a fever, just the normal low temperature 95.7-96.9 range. That's why I'm always so cold, normal for liver failure. Very frustrating. If I walk too much I swell, if I ride my bike I swell, I am supposed to exercise to keep muscle tone, but these are the results and they seem to come on faster each time. Hepatologist visit in another month with ultrasound, full blood screen for MELD score so I'll know how much closer I am to a transplant. Today has been bad though, laying down with feet up waiting for the ache to stop, but have peed so much that is a good sign. At least my kidneys still work ok. Just worried about the stomach. Wait and see. Though I'd update while I felt like sitting for a few minutes. Again, thanks to all who support me in this difficult fight.
Saturday, looking at my bills and that will send me in a downward spiral. Hoping for major contributors to the fundraiser, running out of ideas of how to get the word out. I am annoying people on twitter I think with my constant requests, but oh well, what else am I supposed to do? I wish it would go viral or something. Received something in mail on how I could save 30% if I sign up for mail delivery of a 90 day supply of my meds, so gonna try that. Just so frustrating for someone who used to be able to pay for anything I needed or wanted. Go rid of one car, saved on cash outlay there, just hard to share the car with all of us needing it to go somwhere. Wish we lived in an area where mass transportation was normal, but I live in the wide open plains where every trip is several miles. Sorry I'm being do depressing today, but it's frustrating to live like this. Thanks all who have supported me, I can't tell you how much it means to me and how much it helps. I wishi I'd have a dream where all the lottery numbers came to me and I'd win the million dollar jackpot, but that isn't going to happen, it's called fanciful thinking or something. But it could happen, need to eat some spicy food or something and focus on numbers, ha ha!
Thanks again to all my supporters.
Went to doctor again this week, blood platelets still low, maybe I posted this? I can't remember. Pain levels are getting under control a little better so that's good, or my tolerance to it is getting higher. Always wonder what it would feel like if the pain was suddenly dropped on someone who hadn't felt it before? Would it stagger them? Or is it just me? My right side back ribcage definitely bulges outward noticeably, have had that verified so it's kind of like a rib spreader being in place all the time. At any rate, keep waiting, keep hoping, although my hope for life means someone else has to die and that is disturbing. Too bad science can't grow livers in the lab yet, they can do it with bladders now I think. Maybe one day.
This is my last week of short term disability and to all who have contributed I thank you. To all who may be reading this the first time, I hope you find it in your hearts to contribute to this fundraiser. As I said, I'm just trying to keep my medical bills paid so I will only owe 20% of the transplant cost, if I lose my insurance I lose the opportunity to get a liver. Please help and donate today.
Just came back from doctor, thanks to donors I had enough $$ to pay for prescriptions, only $45 today, waiting for blood analysis to come back, last time red blood platelets were 65, not sure what that means other than I shouldn't be lower than 150, and below 50 is critical. This is why I can't receive treatment right now for Hep C. My body doesn't make red blood cells efficiently and if I start treatment they will drop to, well, not sure, but doctor said it would be critical, so well below 50. I try to eat spinach, not too much meat as it's hard to process when your liver doesn't work, it's a balancing act.
To all who read this, again I appreciate the support and your money goes for my continued treatment. It's the transplant I'm worried about. I have to have at least $15,000 available to put towards the transplant, medicine, anti-rejection drugs, place to stay for 30 days after transplant so I'm close to KU Med. Anyone you forward this to is much appreciated, hoping for it to catch on and raise the $$ I desperately need.
Well, it's back to bed for me, this wiped me out, having to get going and be somewhere so early, but it's all worth it. I do value my life, I do want to live and I do appreciate your support. Thanks to all.
Thanks to my latest supporter. I am going to the doctor again tomorrow so this is a huge help, always another prescription or co-pay to make. I don't know what I'd do without the support of everyone who has donated, it is extremely helpful.
Thank you to my latest supporter! I truly appreciate the help. This week has been rough, been laying down most of the time with difficult stomach issues and pain. Thank goodness for Ensure, at least I get my vitamins, keep nutrition levels up. This disease is a daily suprise of different issues, pain, difficulty sleeping and no appetite. I am supposed to try and exercise at least 15 minutes a day to keep my muscle tone up, but again, this is a challenge. The fatigue levels are the worst. I used to have so much energy, always going places, working two jobs, getting by on 5-6 hours of sleep, now I'm wiped out just moving around the house. Not to mention I can't drive without getting lost, or worse, getting in a wreck, so I depend on my daughter to take me places and thsi is hard for someone who was so independent, but I have come to grips with these things. I want to survive. I want to get the transplant and start my life again, go back to work and be able to think clearly. The thing with this disease is, it sits and multiplies and destroys your liver without you knowing it, until you have reached the point where I am at. Too far gone, with cirrhosis. My doctor is hopeful for the new drugs coming into the pipeline and after the transplant I will be able to treat the Hep C and become virus free and hopefully live a long, productive life.
I just want you all to know I appreciate this support, it's difficult asking for help, but it's the only way I know to try and keep my insurance paid up so I do, indeed get the transplant.
Thank you, thank you, thank you. It means a lot to me.
Thank you to my latest donor, I truly appreciate the support. I repeat myself, but it means a lot to me that you cared enough to donate. More money to KU Med this week, they too will appreciate my "support", ha ha. Medical bills are unbelievably high and continuous. Thanks again.
I have been ill the past two days, stomach bloated, unable to eat and have slept/been in bed most of the time. Days like these are only good for Ensure, just fatigued. Thanks again for your help, those of you who are reading this.
Thank you so much John, this means a lot to me. It is becoming more and more difficult to get through the days and the financial issues are a huge worry to me. The doctors and the medicine and neverending. Some days are so bad, some are ok, but I just can't do much besides rest anymore. Not like I used to, used to be a bundle of energy and it's very frustrating not being able to understand things, confusion and endless fatigue and pain. Thanks for being my supporter:)
I want to thank all who read this and support me as it is all appreciated.
With this disease you are increasing fatigued and confused. I certainly did not used to be like this and it is frustrating not to be able to do the things I used to. I like to work and be useful, but it has been proven to me several times I can't do much any longer except rest. It takes most of the day for a simple task like doing a load of laundry, that is if I don't accidently confuse the bleach with soap and ruin it. Things just aren't what they appear any longer. The week I could no longer drive the car I stopped for gas, paid, then drove off without getting it, went to the post office, stood in line and then didn't know what I needed, then capped the week off by falling into a coma or asleep? and driving my car head on into someone else. As I fell down continuously I managed to break several objects in the house, wander out of the house falling in the yard, have innapropriate conversations with strangers, etc. My kids have told me what I've done, but thankfully I don't remember. With the xifaxin and lactulose it at least keeps me coherant as I wait to rise on the transplant list. Once I get a new liver I can undergo treatment for the Hep C and hopefully back to work.
Thanks for all your help.
Thanks to my supporter for donating, I desperately needed some help with medicine this week and I truly appreciate the effort made to support me. No one ever thinks they will get ill, I always thought I was invincible, but unfortunately reality has slapped me in the face. Thank you so much. Off to the doctor (again) this morning.