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Posted 7/19/2011 3:46 AM (GMT 0)
My name is Rick , I was diagnosed with Cirrhosis , Renal failure and had a MELD of 28 when I finally got help . I am 43 years old and a alcoholic . Before I got sick it wasn't unusual for me to drink a liter of whiskey a night or more on the weekend , Needless to say those days are long gone and I have been sober since I was diagnosed ( 3 years ) . From the onset I was given a prognosis of 3 months life expectancy , I didn't doubt it either . I spent almost a month in hospitals before I decided I would rather die at home and signed my release papers . I went home and had a will drawn up and began the process of getting life in order .
A friend heard of my illness and did some research and found this site , I began coming on here and asking questions . I learned alot from the people I met here through the years , and without this room I seriously think I would have given up on trying to survive through the first year of sickness .
My sickness took me over very rapidly , I was working one day and the next I couldn't hardly walk from edema in my feet and legs . Blood test was done at a local family doctor and the following day I was in the hospital emergency room being admitted . Alot of things happened over the following 3 weeks , Catheter to remove the urine do to kidneys shutting down , I.V's to feed me and boost my immune system , Horrible diarrhea , Jaundice , Encephalopathy and the edema in my legs seemed to travel up into my abdomen so paracentesis was done eventually . I was admitted weighing 195 lbs. @ 6ft tall and 3 weeks later weighed in at around 160 lbs. , I continued the medications they gave me and began going through the process of qualifying for transplant ( For me : 6 months documented sobriety , Seeing a shrink 2 times a month and random blood and urinalysis test monthly ) . I filed for social security immediately as I was diagnosed terminal and my insurance from work allowed me to pay my policy monthly through the group plan as if I still was working .
Almost a year later the ascites was building up more frequently and the diuretics had no effect on me . I would get drained ( Paracentesis ) on Monday and have up to 13 liters removed by Wed. and once again on Friday to get me through the weekend . My radiologist suggested I have a TIPS done instead of risking infection from paracentesis but my G.I wouldn't consider it . I eventually got back to the University where my transplant team is located and explained my situation and had the TIPS done 2 years ago . TIPS is basically a shunt ( Tube ) that bypasses the liver and allows the fluid to be discharged normally . I haven't had to suffer through a paracentesis in 2 years since the surgery was performed . Prior to TIPS I looked like a pregnant skeleton and within 6 months after surgery I had gained muscle mass back and put on weight . I am currently 210 lbs. and as healthy as a man can be with 10% liver function . There is alot more to my story but I wont bother you with details at this time . If I can be of any assistance let me know , I check in here around 10:00 p.m Atlantic time .

A. Ziffle ( Rick )
Posted 7/19/2011 4:17 AM (GMT 0)
Mr. Ziffle-you're a good man and I am so happy to know you (cyberwise...so to speak). I am sure Katie and her family will appreciate your post.

Emma
Posted 7/19/2011 2:31 PM (GMT 0)
Thank you Rick!

Your story will always be a place for hope for others wink

Posted 7/19/2011 3:45 PM (GMT 0)
Your story is amazing, and gives me great hope. I am going to tell everyone about the TIP procedure, since it doesn't seem like they are doing a whole lot as of now.. is it something they do a lot in these situations?

I can already see that I am going to love reading all of your posts and look forward to learning more about you all and your families.
Posted 7/19/2011 9:51 PM (GMT 0)

Thanks, RicK!    :-)

Hugs,

Connie

Posted 7/19/2011 9:54 PM (GMT 0)
Katie , Some people respond to diuretics and if your dad is one of them it would be better to go that route . TIPS is usually performed as a last resort to gain control of severe ascites , Give the diuretics a chance to work first . Most people have to dabble with medications to get the right dosages and that may take some time . Try not to get too antsy about seeing a immediate result , The body can heal itself but often it takes it's own time . Tell your dad to remember not to let the depression from his diagnosis get the best of him , If he concedes to thoughts of despair then his health will follow . Katie the same goes for you . Do what you can to remain upbeat and take some me time as the ladies here like to say .
Sorry to see your family go through this . I also have a wife , 2 step children and a 23 year old daughter myself and dragging them down this horrible road has been worse than the physical pain I have felt . If you guys can face this thing down the pay off is worth any hell you might have to go through in the mean time . As you can see we are somewhat a cyber family here , Brothers and sisters in a odd sort of way . By the way welcome to the family .


A. Ziffle
Posted 7/20/2011 9:17 AM (GMT 0)
Hello Katie , I wish you all the best ,Rick's a good man to listen to.

Rick, Your comments are as they always have been,honest ,insightful,and showing the true meaning that you care. Honestly Rick ,your writings would bring a tear to a glass eye.
Princess
Posted 7/20/2011 11:55 AM (GMT 0)
Mick , I had a friend with a glass eye back in the day . He used to pull that thing outta his head and drop it in a mixed drink at the bars to mess with the bar maids . I seen him cry once back then , He accidentally stepped on a tater rake that was left out in the field , The handle popped up and busted his nose . So it's safe to say folks with glass eyes can tear up .


A. Ziffle
Posted 7/20/2011 1:12 PM (GMT 0)
Actually looking at all of your posts has kept me more up beat the last few days. I still have my moments, but it hasn't been quite as devastating. and if I was a bar maid, I am pretty sure I would have a heart attack.
Posted 7/20/2011 2:12 PM (GMT 0)
Watched one chick pour his eye down the sink once . He became a little more careful about messing with the ladies after that experience .

A. Ziffle
Posted 7/20/2011 2:15 PM (GMT 0)
hahahah! How did he get it back...
Posted 7/21/2011 1:54 AM (GMT 0)
Katie , Luckily the sink had a strainer . I **** while he begged the manager to let him retrieve it , The bar maid wouldn't let him behind the counter . It's been around 20 years since I seen him but I still get tickled when I think about some of the stunts he pulled .


A. Ziffle
Posted 7/21/2011 4:06 AM (GMT 0)
Wow Rick that guy was lucky the sink had a strainer ,how did he lose the original eye ? Wasn't used to the hook on his right hand ? Or what once was his right hand . Just goes to show you Rick you folk in NC are easily entertained.Hahaha
Princess
Posted 7/21/2011 4:08 AM (GMT 0)
Princess-nice to see you back. I miss the banter between you 3 wise guys! It always makes me smile!

Emma
Posted 7/21/2011 12:22 PM (GMT 0)
My dear Princess , Janell or Nelly as we called him lost his real eye back before we met . I can't remember how his eye got injured . Last time I went back to GA. I stopped by his old place and they said he moved to the Savannah area , He joined up with a notorious biker gang there . Makes me wonder what he does when he's riding , One bug hits him in the left eye at 80 mph and things could get nasty quick . Guess he rides in the back of the pack to avoid wiping out others .
Emma , Our little princess is back to his old self again . I must admit the bit about Nelly having a hook gave me a chuckle . I think I will mail Karen and see if she can't slip a little more lactulose in his beet root drink . If nothing else it will clear out his blood to B.S ratio , Ahh the thought of Mick strapped to a toilet mumbling about dingo's blowing a digerydoo seems amusing enough for me .


A. Ziffle
Posted 7/21/2011 3:10 PM (GMT 0)
Mr. Zif-glad to hear you and the Princess at it again! My family knew a teenager that had a glass eye. We were at a multi family party years ago...our 20 year old was about 5 at the time. Caught him begging the 13 year old to take out the glass eye so he could examine it. Ugh.

Katie-this post started out on a serious topic about TIPS for your dad. I hope the comic turn it has taken will demonstrate that all doesn't need to be doom and gloom. There is the hope you were setting out to find. You can see how the posters on this forum care about each other, live to the fullest each day, and try to find humor!

This group likes to joke and have fun, but when there is something serious to discuss, we will all be serious.

Love you guys!

Emma
Posted 7/21/2011 4:18 PM (GMT 0)
My family survives on jokes.. my dad even laughs about the fact that he "used" to mess around about one day needing a new liver. Which I know is odd, we all have a super weird sense of humor. Since I found you guys I feel as though the tears are slowing down and the laughter is coming back so that we can start this good fight. :)

Dad was very grumpy yesterday, but I'll take anything over the confusion. He does much better in the morning then the afternoon.

Hope you guys are doing great today!
Posted 7/21/2011 8:40 PM (GMT 0)
Hey Arnaldo,
May I sugest you break your medication in half. It's you that's in a state of confussion. Atlantic Time ? Shouldn't that be East Coast Time ? As for my BS meter,it only goes in the red area when I talk to you . You NC folk will believe anything. A couple of little truths ; Dingoes don't fly only pigs do!
Still hot there Arnie ? Please for the love of God always walk in shaded areas ,porkas cook easily. Yum crackling!
Princess
Posted 7/22/2011 3:00 AM (GMT 0)
One word Mick can clear up all this confusion : Lactulose tongue

Karen , If you read this for God sakes please see to it Mick drinks a liter or so of the sugary elixir . Then have him call me in the morning . I can't understand a flippin thing he's saying again .

A. Ziffle
Posted 7/22/2011 4:18 AM (GMT 0)
Tricky Ricky,
It's the blue ones I wanted you to stop taking ( Viagra).You're getting a head of yourself ,pun intended.I'll be ringing you in the morning our time ,mid afternoon your time . Simple enough. This tom cat of mine keeps putting my glasses in his kitty litter.They smell like he's taken it a step further.Hear you tomorrow big fella.
Princess
Posted 7/25/2011 2:25 AM (GMT 0)
Rick, I asked the TP Co-ordinator about the TIPS procedure, and they said my husband is not bad enough yet to warrant it. The diuretics do not seem to work anymore. they increase the spironalactone from 50mg ot 100 mg a day, and furosemide from 20mg to 40mg a day. I hope it works! He looked like a pregnant stick, and about 5 days before his TP eval, he got the squirts, and spent 3 days in the bathroom, and lost 10 lbs. No edema at all, and tummy was loose instead of popping tight. By the time we got up there he had gain 6lbs back.

so, we're giving it a try and hope for the best . . . did you ever get the TP?

Debbie
Posted 7/25/2011 4:45 AM (GMT 0)
Hey Debbie , The doctors usually know best . They played with my diuretic medicines trying to get them right for quite awhile , It's better to avoid the TIPS until they have tried to contain the build up by medications . TIPS saved my life and gave me much needed relief but again it isn't intended to be a permanent fix . I went back to U.N.C Chapel Hill for my last checkup and my MELD dropped down to 8 , It's always hovered around 12-14 aside from the 28 area when I was diagnosed . At 8 I am of the list basically , I will have to deteriorate to the 23 level before I am considered for transplant . I still go back every 6 months for check ups but I'm not a priority at this point .
I still get moments of confusion rarely , I will nod off if I don't keep myself occupied through out the day . I still take all my medications Xifaxan , Lexapro , Vitamins like D3 , B-complex , C and a multivitamin daily and Lactulose as needed ( My wife seems to be abusing her responsibility of discernment over my behavior lately , I think she just likes to see me grimace as I pour that stuff down my throat ) .
I had many of those squirting experiences but one in particular still kinda makes me giggle . One afternoon while in the hospital and nobody but myself was around my stomach began to gurgle , I looked at the bedpan , I looked at the I.V lines and the oxygen machine . I hated that bedpan , I hastily hopped outta bed and made my way to the bathroom with all these lines and machines in tow . I grabbed at the door handle but my hand kept slipping off ( I had put some creme on my hands earlier ) , about the 3rd attempt at getting the door open to no avail . Too late ..... the internal flood gates opened wide . I just reached for the call button and stood there . I had very little shame prior to that nurse walking in but what ever was there quickly left .


A. Ziffle
Posted 7/25/2011 3:51 PM (GMT 0)
LOL!! I understand! My husband gets a wierd look on his face and when I ask whats wrong, he'll tell me his stomach is gurgling. I know whats next . .run to the bathroom!!

I think the biggest issue with the diuretics is the cramping . . he's already dehydrated, no muscle mass at all. and to take that much diuretic just makes it worse. With the increase from his eval., we're hoping for some retention loss. I figure in a week we'll know how its agreeing with him.

2 days til we find out if he's listed or not!!

Debbie
Posted 7/25/2011 4:43 PM (GMT 0)
Do I know that one. My favorite was when a nurse asked me if I'd had a bowel movement recently. I said very recently. Then she asked about its consistency and I told her it was very loose. She said, "When was your last solid bowel movement." I was pleased to tell her it had been just over 4 years.
Posted 7/25/2011 7:05 PM (GMT 0)

Debbie, they started me out on 40 mg of Lasix and 150 of Aldactone.  It took a couple of months to really get the swelling down and then the dosage was reduced to 20 and 100.  I currently take 20 of Lasix and 50 of Aldactone, but only twice a week.  After the recent chemoembolization, I had to take a couple of extra doses, as there was some fluid rention from that.  Can't they prescribe or suggest something for the cramping?  I get it sometimes in my feet, and I have only to take one 20 mEq of potassium to take care of it.

Hugs,

Connie

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