I have been reading a few posts and feel sooooo relieved to know there is someone to talk to about ESLD. I collapsed 8/14/03, fell in a coma and awoke to a whole new world. I had a small auto accident the year before leaving me with neck,bcak and spine damage, neuropathy in hands and legs and am legally blind. I didn't have health insurance and no one told me about Workmans Comp, so I drank heavily that whole year. No wonder I collapsed. Duh! I can't even begin to tell you what I had to go thru while IN the hospital (for a month), but it pails to what I endured AFTER I was released. I had a wonderfull kidney doc and an OK liver doc that saw me until I qualified for SSDI nad MediCal. Then I got to go to Stanford Univ where I went through the whole evaluation process. Right after I got out of the hospital, I had to have paracentesis where they would take out about 2 gallons of fluid from my abdomen. That happened about every 3-4 weeks and lasted 10 months. I had to go to one hospital for labs, etc and Stanford to the liver clinic for other labs, so I had to see a doc once a week for over 2 years. I have ESLD, kidney failure, nerve damage, neuropathy, alergic to CIPRO, COPD, RA and god knows what else. Because I did not have any family or friends to help me, Stanford told me that I didn't "JUMPTHRU ENOUGH HOOPS" They said in order to get on UNOS list, I had to a) Secure insurance b) have suitable housing c) be sober for 3 months d)have a support person.
Well, I did all that in 2 months. Not easy, but I didn't have a support person. I was told I was on the list and was a perfect candidate for transplant. Then later told I was deferred. I was deferred 3 times. I began to lose faith. This whole time they told me, as of September 2003, that I only had a few months to live, anad wouldl not live the expected 2 years. So they pushed me to Stanford. Stanford in turn made me 'get my papers' in order. I had to make out my own will, Advanced directive, and pay for my burial/Neptune Society. I did all that, alone and without anyone, no ability to drive, no money (My SSDI was 900 and rent was 845) and no CLUE what was happening. I tried to research everything I could get my hands on. OK, so it took me a long time to read it!! HAH! I can see some with special aids. After the third deferral, I almost gave up. I sought a doctor that someone at the docs office reccomended, just to talk to. It was a medical marijuana doctor. I was 46 at the time and never touched the stuff, but gave it a shot. She prescribed it for several reasons. Once I told Stanford that I did that, I was told that they would NEVER preform any transplant on me. I was devastated, hurt, lost and scared, no turning back. So, I really had no reason to stay down there and moved to Oregon in October 2005. Mostly for the cheaper rent. I was told that my medical condition would follow me even tho I would have to reapply. The day I arrived, Oregon had closed their health care to new patients. DANG!!! (I said worse under my breath)
Finally, over a year later, without a doctor, without my medications, without anything, I got in to OHSU to see their liver doctor. He checked me and told me that there is nothing they can do for me except to give me 'QUALITY OF LIFE". What??? So they keep me on lasix and aldactone. Thats it. Oh, thtey also told me "We don't know how you are still alive, but whatever you're doing, keep it up"!! Again, I say WHAT????
Believe it or not, this IS my short version.
I believe Milk Thistle (the good stuff), MMJ (legal stuff, in moderation, helps with nerve damage, pain and nausea), complete and utter FAITH in GOD, and dam stubborn determination is the key. I admit I would rather NOT smoke it, it stinks and I can't even talk to anyone, I feel stupid, but I feel better and can sleep more than 3 hours at a time.
I don't know what I am supposed to eat. I can't have:animal protien, sodium, alcohol, potassium, dairy, pork, which doesn't leave me with much. And I can't shop all the good stores. No money, no knowledge where the stores are, ie, health foods, etc. I also have LOW blood pressure, LOW blood sugar.
I have been diagnosed several months ago with clinical depression and anxiety/panick attacks. UH, YA THINK!!!! Some doctors, grrrr.
I alaso have to be positive, especially when I am out. People look at me and say you look fine. It used to hurt me, now I just smile. Most diseases go un noticed, like cancer, prostrate cancer, heart disease, depression, broken hearts. So thats why I smile, I can't judge their ignorance, only pray they won't have to go thru this. I think I come out the better person, I hope so.
Also, in Oregon, I don't qualify for anything. Oh, excuse me, I do get $16/month in food stamps. thats 50 cents a day for fodd, oh wait, I have to allow for TP and soap.
I should stop, this is becomming a letter, sorry for taking so long.
I thank you for allowing me to say my peace. I am NOT waiting to die. I just feel like I am stuck without anywhere to go, no one to take me and not able to do anything once I got there!
I AM wanting to "go home" and I am very secure in that God will do so when He is ready for me. And I realize that there is still some 'homework' I have yet to do. Its frustrating in how to go about it, and what is it?? HAH!!
I do everything by memory, so that keeps my spirits up. It just takes me a few days to recoop after I have gone to get my groceries or go to thte bank. But I get up and get out there a few times a month. Dam rain!!I can walk, but can't bend my knees too much, so to fall is a huge fear as I can't get up without something to pull up on, and running, NO WAY. That bus would just have to hit me, I can't get out of my own way.
My humor has been my saving grace, always has been. But I sit here cracking myself up most the time, too bad I'm the heckler too!
Well, people, you are not alone and I have taken every post I have read thus far to heart. And included each and everyone of you in my most sincere prayers. I thought if I pray for all of you, and then slip my name in, maybe we'll all get heard at the same time. Ah, its worth a try. Its free and frogiving. My two favorite words second to LOVE and FAITH.
God Bless us all.