I am here because NOBODY ELSE understands.
I am on the Liver Transplant List. My MELD fluctuates between 18-24 at any given time. My Bilirubin is way high and my eyes are yellow-my eyes are very pretty(I don't mean to brag) but I know this because not only have I been told all my life by friends/family, but complete strangers. They were one of my best features and now I have to hide them. My numbers are never close to where they should be and I am so frustrated.
I had the TIPS procedure in July and recovered quite well. Prior to that I had about 5 -6 paracentisis and I have had about 5 Banding of vertices done-a total of 12 had to be banded. This has not started out very well. My husband seems to think I "forget" things which I do but when it suits him as well. I am not that much out of it-I know what the hell is going on and I feel insulted a lot but that's another subject for a later date.
I am scared and have many sleepless nights. I have been off work for 6 weeks now so the fatigue no longer interferes with my daily activities as it did prior. but I love to work-I was a single parent for many years and prided myself on giving my 3 children a good life despite their lack of parenting from their Dad. I always worked full time and maintained my own home until I met and married my current husband 16 years ago. He was raising 3 of his 4 kids so we had a lot in common-it is rare a Dad gets custody of his children much less 3 of 4 but he/we made it work. We worked hard and went through a lot of turmoil-we still survived and now have 5 beautiful granddaughters. My oldest daughter(28) has a 6 year old and a 4 month old. My stepdaughters have each an 18 month old-they were born a day apart!. And also we have a 4 day old with my oldest stepdaughter I also have a Son(26) that was serving in Afghanistan-he is home for now. well not home, none of the kids live at home. He is on his 8th year in the Army. And I have a daughter that is 24.
My steps are 2 boys-32 and 25 and 2 girls-30 and 27. so you can see the stressful life I already had prior to getting sick. Almmost 4 years ago my mother had a TIA and I helped my stepdad and sister nurse her back to health-she really came through it pretty good-the only lasting effects are forgetting words on occasion. The following year my sister-only sister had stage 3 cervical cancer which we got her through and cancer free now. Thanks be to God! Then last year I got pretty ill unexcpetedly, all the while(week in hospital) my sister and Dad were on a celebratory trip of his 70th Bday,her 50th and her being cancer free. They went out west and did hiking(dad was a marathon runner at the time) and camping then they were going to visit or only Brother in Colorado. Well as luck would have it dad went for a walk alone and fell off a cliff and was missing for 6 hours-the rangers couldnt find him nor could the search parties but my brother rushed there with his Labradors and the dogs found him! He had a broken Pelvis and collar bone and a few other injuries so they did a CT Scan. It took them 4 days to get home and once he saw his local Dr. discovered he had a mass on his gallbladder which in surgery they discovered the tumor was wrapped like a vine around other organs so they had to remove the gallbladder, appendix-which were ready to burst and part of his liver and spleen-I think that's all what they did-that part is foggy as I was sick too-I didn't want them to know because they didn't need to worry about me on top of all the stress they had and they didn't want me to know about Dad because of the stress but after we all came together as a family we had a good laugh about it all. Just now dad cannot run marathons, he can barely walk 3/4 of a 5K. He is strong it is just going to take a while for him to work up to that point of stamina he had. But the week in half he was in the hospital he walked around the nurses station everyday and worked himself up to 5 miles-I think that is why he survived-he would give in and kept fighting to get stronger-that and the fact he knew I needed him yet too.
So as you can see I have been through hell and back of late and my body cannot handle much more. I am in a state of perpetual crisis. While I was sick my Son was deployed so as we skyped he could tell something was wrong but I didn't want to worry him either as he needed to concentrate on what he had to do but I did tell him little bits at a time.
Since it all began, I have lost 60 lbs-here I thought I was just fat and that is what happens in pre menopause-turns out it was a lot of fluid and of course my diet. Although I wasn't huge eater but I was eating the wrong things. One thing I have on my side is I am not a particular fan of chocolate-unless a few nibbles a dark chocolate on occasion. Was never a huge eater-I gave up desserts for lent one year I guess I was about 15 and I never really went for desserts after that.
totally different story now-sugar free goodies are usually sodium free or low sodium so I survive a lot on sugar free popsicles and juice bars. I gave up coffee and soda-I am a huge water drinker though. My diuretics really work some days because of the amount of water intake. but he drawback is the excruciating leg and hand cramps. Some nights I just cry and cry because of the pain-I can take a lot and fight hard but the cramping is horrible. Does anybody else have that problem? I cannot really get any meds fro it as it is contradictory. The meds will further damage my liver and they need to preserve as much as possible so after I do have surgeries and procedures they can prescribe me the meds. I have tried everything from tonic water to Amish remedies and anything I could to no avail. That seems to be the story with a lot of liver patients. Also, it seems like I am taking fluid in my belly and my legs are getting worse-is it possible that a paracentesis may be need on occasion after TIPS? I really don't want to say anything to the Dr. yet I would rather wait a couple of days to make sure that's what is happening. I have a 300 mile round trip to see them so I really need to be sure. I am pretty well educated and know my body so that should not worry people. I made the mistake of telling my oldest daughter an she got on my case....but she has not had the experiences I have so I know when I need one and when I just need to eliminate-which could very well be the case here-the meds (lactulose and Zaxifran) usually have me go up to 4 times a day and I have not been regular for about a week-a lot is diet related I think. I discovered Sugar Free Caramels and Licorice...you can guess the rest!
Anyway I just wanted to share my most recent past so people get to know me and my situation. I may have a lot in common with some or none of you but any conversation with somebody that understands is welcome at this point-since being off work I feel so isolated and get so bored. Mom comes to help with projects around the house-we are both perfectionists-she is worse so I get tired after a few hours with her wipes me out. I mean lining my pantry shelves with contact paper was a clinic! We wanted it perfect without bubbles etc....who cares? It is a stupid shelf nobody will pay attention to but it took us 5 hours to decide that we would add another shelf and add a few baskets and on and on. next week we are going to re paint the damn inside-that's will be a treat! I shouldn't be sarcastic but I can do that alone however my hubby thinks I cant do anything physical-except Golf-because that benefits him as well but hen I pay for it later that night with cramping-not always I just need to use the cart for every shot-last week I though walking a bit up to my ball was gong to be good exercise-wrong. I have to do it the Novice style but I don't care as I love to golf yet.
So that's where I am at for now-feel free to respond and offer any suggestions as I am an open book and need to have some adult interaction with people that know what it is really like being on a transplant list not knowing when if ever I will get a liver-geez I don't want to think about not getting one and also rejection.
I hope everybody has a good and I will try to look back this evening and again twice daily.
Thanks for stopping by my page:)