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shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/1/2009 11:36 PM (GMT -7)   
Rick, I was looking at some older posts and came across the one about your wife not discussing your health. Been there, I really felt as long as I didnt acknowledge certain things they wouldnt happen. Well I acknowledged them to myself and a few other people but never Doug I squared my shoulders and refused to even let him know I was scared to death I could wake up and him not be there. He would talk about it sometimes and voice his concerns about how we would be. I did have to get more involved as time went on and talk about it more as he depended on me more and more. She may come around in her own time, yet you are probably putting on the strong face for her too. Just enjoy every flippin moment you two have. I pushed Doug in his wheelchair to see the Red Sox, his fav Jimmy Buffet and many others, whatever it took to get there we did it. I remember one time I picked him up from the hospital and went right to Jethro Tull and let me tell you I bussted those Dr,s butt to get him out in time, they heard me coming down the halls telling them he BEST be ready......**** some of the interns were a little intimidated by me but thats good for them. Love, laughter and positive attitude will get you so far in this race to survive. You know I still hear him shuffle across the floor!
Sue
When I started counting my blessings my whole world turned around.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 12/2/2009 4:20 PM (GMT -7)   

Rick, Dougs stint was in for a couple of years before they had to unplug it, the procedure involved them inserting something into it from the vein in your neck and it was just day surgery. no stitches or anything like that and it was usually done in radiology. You will know when the flow starts to become blocked as you will start to gain fluid again. At that point they do an ultrasound and check the flow. Sometimes they will just do a Tap if there is a good pocket and alter your diuretics some. There is a risk of increasing ammonia levels with a TPS so they try not to open it unless they have too. I dont know how much to pass on as I dont want to scare you..... so you really need to be prepared for more info. Let me know if you want it all. I will pass on more of the things regarding TPS if you want me too.I am a person who doesnt like to sugar coat things but I also think people need to ready for info too.

  As for Doug on the list he was 2nd on the list for New England, he got his transplant March 10th but in surgery there was too many complications, one of them involved the portal vein which is a criteria they are now trying to add to Meld scores to move people up faster. Because of this complication it took 100 litres of blood and the surgery went 3hrs longer than usual. His new liver was functioning when he was brought to ICU but there is a preservative in blood products and the new liver couldnt process them fast enough. At that point he threw a clot which they went in and removed as they never closed him up after the transplant due to having to do repairs on the portal vein, it is easier on the body to not close up if you know you are going back in..... long story short his other organs started to fail and he couldnt be roused when we took him off pain meds. At that point I called the kids and we spent time with him. I did use my medical POA to have the life saving efforts stopped. The little @#$* passed on Friday the 13th.

The true blessing was him not waking up even though I wanted him too. His last memory after 10yrs was going down the hallway thumbs up grinning that he made it to his transplant.....he won and I can still see that face of his with the silly grin. The youngest daughter whispered in his ear You got your liver and your keeping it with you, she so made fun of him cause his e-mail was liverhunter at yahoo. That man laughed his way through so much..... even the night I found him in my garden at 3am naked as all get up, he would tell everyone that story. That was a sight to see! I coaxed him in by telling he did an awesome job in the garden and I needed his help in the house. I had learned a method called "fiblets" when dealing with my mummy and alzhiemers. We would have some funny conversations while waiting for the enulose to start working. I will have to tell you some oneday. He was just as funny when in a fog as he was when normal.

Sue

 

 


When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/2/2009 8:48 PM (GMT -7)   

Rick, I think all your questions are answered in that middle paragraph--about things unfortunately going wrong after transplant.  You need to know about the risks, but because every person is different, you can't assume that the same will happen to you.  There are more successful transplants than not.  My brother-in-law had a transplant about 10 yrs. ago and had various problems afterwards, but he pulled through and is doing well.  It's so important for people with successful transplants to post here, but it doesn't often happen.  We tend to hear about all the bad stuff here. 

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted Yesterday 2:43 AM (GMT -7)   
Rick, I have a good story too, I have a dear friend who had a very successful transplant 9 years ago. He is doing absolutly fantastic. He was actually back to work full time with in 6 months after transplant with only one rejection episode that took a med change. He looks great. I also met a family at center and he has had a liver kidney and pancreas, imagine that they call him the miracle man. Big article in the boston paper about him. I also have a regular customer at work who had a transplant and he is 11 years in so now you have three people with good results in my little community. I stay in touch with all of them. I do think there are more positive than negatives. I also believe we need to hear the positves and there are many out there.
Sue
When I started counting my blessings my whole world turned around.


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted Yesterday 7:45 PM (GMT -7)   
Hi all,
 
I just wanted to say that even though I am not in this boat (AIH without cirrhosis), reading what you all have gone thru and are going thru inspires me.  You are all very strong people and the world is a better place for that.  Shadowsghost, I hadn't kept up with your previous posts but I am sorry to learn of your husband's passing.  I think you are right that it was probably a good thing for him that his last memory was a happy one on the way to the OR.  The fact that even as sick as he was, that his attitude was so positive is a wonderful thing.  I was pretty positive before developing a chronic illness but being on this site and reading what everyone has struggled through keeps me even more positive...sometimes not with my own separate battles as everyone goes through ups and downs...not only with disease but with life's usual trials.
 
I do wish you all well and stay as strong and positive as you are...others are reading and learning from you.  smilewinkgrin
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted Yesterday 9:40 PM (GMT -7)   

Rick, someone would have to pay me to correct all the spelling and grammar errors I see here and elsewhere on the Internet!  It's all I can do to bite my tongue at times--or quiet my fingers.  And believe me, it's not just you!

I love the positive stories.  We need more of them!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted Today 8:22 AM (GMT -7)   

Rick, Guess what I do drive of course not my mini I wanted but a VW beetle LOL and of course Doug got me the flower decals for the sides.... lol. My fasination with mini's is home grown I was born in England and every time we went home the little cars were just what I liked. Then I lived in germany and found the bug, they actually had VW races in germany similar to dirt bike races here now that was fun. I used to work on my own cars but now if I get on the ground I have to do inventory to get up lol, so I have a mechanic that yells at me for owning a bug lol lol. My grandson thinks the bug is a fresh ride! I did have a 1972 Buick Gran Sport, dual exhaust, posi rears the last of the muscle cars now that was a screamer I could leave 2 telephone pole lenghts of rubber, those were the days ****!! Loved the sounds that car made, like when all four barrels opened up on that carb. Still gets me excited thinking about it okay so now I am in lala land.

As for Dougs Roto Rootering on the TPS yes it was done the same way it was inserted and they did give him a local with light sedation.  He said it was no big deal when he had it done, the biggest pain was getting me up to have him in Boston so early. You see I am not a morning person, I think 4am is not a time to get up its a time to go to bed. I am pretty scarey Doug would lay in bed and wait till I had my first cup of tea made before he would show his face. He would smile and sing while I would grumble and mumble. So me in the am was scarier than any procedure they wanted to do to him.

Sue


When I started counting my blessings my whole world turned around.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted Today 7:50 PM (GMT -7)   
Rick, the roto rooting started after it was in place for 2 yrs, after the first time it lasted about a year then was done again once a year. then two years before he passed they did it twice. Problem is every time they clean it out you are also at risk of them getting the flow to fast which increases the ammonia issue. March 2008 we started having real sudden ammonia issue where he would literally go into a comatose state. No matter what they tried and how much enulose he took we couldnt prevent it. So then they inserted a stint inside the stint to narrow it, that only worked for a short time so the final option was to close it off. That helped alot with ammonia levels but then he had a standing Tap every other thursday here at our local hospital. At first they didnt want to do it but I found a Dr that knew our Dr in Boston and kind of exaggerated about how Dr Curry had mentioned him and how taxing it was for us to go to the city so much. By the time I was done he was more than willing to help even though he did refuse the year before. Stroke peoples ego just right can get you so much more and you know he was absolutely awesome with Doug, they would drain 10 to 14 litres everytime. Now with all this info you do have to remember Doug was sick for 10yrs.... 1999 he was in the hospital in a coma for 14 days with no chance of survival yet he did and spent another 5 weeks after his coma just getting to the point he could barely function. So he started his journey way behind the 8 ball. He would retain so much fluid when he walked he really did slosh just like an old fashioned water bed. His TPS was done before he even got to his first appointment at transplant center.  The only reason he lived as long as he did, was determination, positive attitude, lots of laughter, aggressive Dr's and of course me! I made sure he had nothing but the best. every time I walked into a hospital room I actually inspected him, I wouldnt bat an eye at calling in a nurse and telling them what I wanted done whether skin care or how many pillows he needed. I always made sure he had certain things from home that he liked. I even got him a rolling bag so he could have his laptop, movies, games what ever he wanted even his favorite blanket.
One time there was some Dr's there from Joselin Clinic for his blood sugar issues and they were making him feel like it was his fault his sugar was so high. Let me tell you I dont put up with that stuff. By the time I chased them out and fired them Doug said he felt so bad for them he wanted to skulk out with them too. LOL I am like a lioness with cubs when you mess with me or mine. I would call Boston and warn them if things werent right that they had 48 mintues to get it right cause when mad thats how long it takes me to get there in my Bug. I degress again so many memories.
Sue
Did I answer your question again.... I forgot what it was LOL,,,, I really think I should increase my meds LOL
When I started counting my blessings my whole world turned around.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted Today 7:55 PM (GMT -7)   

OH by the way......I have lived in Mass for ahhh 37yrs but I also lived in Fla and Texas. I have family in Fla and SC oh and Arkansas. Also love my willie nelson, george jones, lorretta etc and throw in some Kid Rock Who led zepplin etc. So kinda like a redneck hippie yankee but no NASCAR!!!

Sue


When I started counting my blessings my whole world turned around.

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