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.