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shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/11/2008 9:30 PM (GMT -7)   
I think I am getting to a point of snapping! I have been watching him for eight years slowly go down. Now matter how you prepare and remind yourself it will get worse there really is no preparing for this. We have a growing list of medical issues like ESLD isnt enough. I do think the encephalopathy has become the worst. 2 weeks ago he collapsed into a coma then wakes up 36hrs later like nothing was wrong. Of course he didnt know how he got the rug burn on forehead and legs. We get home for 10 days and his amonia level climbs to 252 which is better than the 300 while in his coma. This has been going on since last year. I just went back to work again as we are only allowed 12 weeks a year LOA and still keep my job. So now I have volunteers coming in to help but we all know that can wear thin on friends and family after awhile. His sudden rise and fall of amonia levels has everyone baffled. We buy enulose by the case!! Oh and by the way we only have a meld score of 20 today last friday it was 17. In my area you cant even be considered till you hit 30-40. Savings is dwindling, the retirement plan is shrinking with the economy. I still keep going to call my mummy then remember she passed in January and I get all emotional cause she left way to early. I guess I am on what mummy called "A PITY POT" and that is so unlike me. I guess we all deserve a moment or two RIGHT? sad

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/11/2008 9:41 PM (GMT -7)   
(((Shadowsghost)))

You are absolutely right!!!! Have they checked your husband for an infection? People who are in and out of hospitals can get a strain of highly resistant staph infection. They put my husband on an antibiotic for about the last 4-6 months of his life. Boy did that help keep the encephalopy down. It was called Xixafen or something like that. Boy I am feeling my age tonight. Please excuse my spelling.
Connie or John can you help me out here? I know one of you know how it is spelled.

Anyways he was having the high ammonia levels a lot before they put him on it. He was as different as night and day once the antibiotic got in his system.

Take care ........Shadowsghost..........And come and vent anytime.

Thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/11/2008 10:03 PM (GMT -7)   
Yes he is on xfaximin and they constantly look for infections they have had Infectious specialist check him too. Nothing to be found...... at first the DR's didnt believe how suddenly his changes were till they saw him in action. One Am he was ready for discharge ammonias were ok then by rounds he was on the floor and had no clue who or where he was? The DR actually apologized for thinking I may have been a little over reactive and they take me real serious now. I did fire and entire hospital that also works with the hospital we use. I am the pit bull now I informed a team of DR's i knew a creative way of giving them some lactulose that involved a hose and a turkey baster hhhhmmm so a wide berth is given me now, I have only one patient and he is the priority
Sue devil

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/11/2008 10:13 PM (GMT -7)   
Hi Sue,

I am so sorry that you must watch this disease cripple your loved one. It is good to vent and release some of the pent-up frustration and the inevitable hopelessness. This is the place to do it.

I hope that things will turn around for you two. I hope that while you prepare for the worst, you still have hope for the best. Miracles happen.

Losing your mother too soon (it's always too soon) must have taken a real toll on you. I'm sorry for your loss.

I'm a ESLD patient so I can only imagine the burden that you carry as the caregiver. Please take care of yourself and find a way to keep yourself rejuvenated, maybe a massage, or some time set aside for reading, or ???

Please keep us in the loop as to what you are going through. There are many here who are, or have been in your position and can offer good support and advice. They are eager to help (we all are) so please take advantage of being able to share your situation with us.

Be well, John

ps - spelling: I don't find a 'Xfaximin'. I think 'Xifaxan' or 'Rifaximin' are the trade names for the expensive antibiotic pills that Pink Grandma noted; and I think that 'Enulose' is a 'trade name' version of the affordable sugar, Lactulose; both are used for reducing the encephalopathy-causing ammonia. I think that the Xifaxan kills some intestinal bacteria, slowing down the digestive process to reduce ammonia while the Lactulose simply draws the ammonia to the bowel for elimination. www.drugs.com is a good reference for drugs.
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/11/2008 10:16 PM (GMT -7)   

The correct spelling is Xifaxan.

{{{{Sue}}}}  You are certainly entitled to vent and sit on that pity pot for a spell.  Frankly, I don't know how caregivers do this day after day for months (and even years) without cracking up.  I don't think I would be able to handle it.

Sue, is there a liver support group in your area, or one for caregivers?  Sometimes hospitals have these.  Just a place to go and share and maybe get some ideas.

Meanwhile, rest when you are able to, and try to get out once in awhile to have some "me" time.  You really need that respite.

Hugs,

Connie


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/11/2008 10:29 PM (GMT -7)   

Well the nearest suport group is over an hour drive away, with him and work I just cant do it! Although I swear i can drive to the city while napping, I dont recommend it to often but there are times i really dont remember the drive. I guess thats why my girls dont want me to trade my Bug for a mini cooper 6speed super ..... red with white stripes and sunroof..... oh but wait hubby wouldnt fit in it after his 3-5lbs a day weight gain. I had to buy a used car that he can get into on the days it is too hard to get in the Bug. He calls himself the ever exspanding man! I have a scale that transmits his weight to the nurse for monitoring along with his vitals I call that the VIRTUAL nurse.... sometimes it scares me when it yells goodmorning..... what will they come up with next?

Sue


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 6/12/2008 11:27 AM (GMT -7)   
Dear Sue,
 
My heart goes out to you as I am going through this with you!  Sometime's I feel like I am going to crack too and then I get up and start a new day, I also relate to you wanting to talk to your mom, I would give anything to have mine back right now.  Please know that there are many of us out here and anytime you need to talk we will be here.
 
 
Judith

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/12/2008 8:47 PM (GMT -7)   
Everyone, Thank you so much for your responses. This has just been the toughest year losing my mum and best friend 3 months from each other and now hubby declining in so many ways. You feel like the circle of support is shrinking while demands are increasing. I have always been a fighter but sometimes the wind is out of the sails. Went to the hospital to pick Doug up and "the team"  of DRs said maybe I should stay and just send him home, I thought about it a second but declined! Oh my he so wouldnt even get my car out of the parking garage( brain fog wont let him shift a standard) and then the apartment (if he should find his way home) oh dear you can imagine what would happen...... mess and more mess. So here I am home with him. I arranged a few more days of what I call "Doug sitters" so I can work. The positive is I might get approved for a program called Options and they will pay my Doug sitters yyeeeessss! I am constantly looking for resources to help out. There is so little out there to help us caregivers, but I have learned to demand , ask and make many many phone calls. I have also learned the barter system well too.... make trades for services. If you have a talent at something you can trade it for housekeeping etc. . I can then do something i like and come home to a clean house, what a wonderful thing. I am so looking forward to some new friends here that really understand the ups and downs.
Sue
PS Johnct... I see you like music, do you like all kinds?
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/12/2008 8:56 PM (GMT -7)   

Sue, I've been paying for someone to clean my place and help me with grocery shopping.  However, today I "bartered" with my neighbor.  She's doing a load of laundry for me in exchange for me composing and typing a business letter for her.  I definitely got the better of that deal, as it will take me 5 min. tops!  LOL!  :0

Hugs,

Connie


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/12/2008 9:09 PM (GMT -7)   

Connie, thats what I like to hear! I think sometimes we forget the old ways were sometimes better. Bartering is awesome, everyone wins and no one feels owed. I sew, crochet, craft, research and sometimes teach these skills. I can even make a full size quilt in 3 days machined of course, hands are to bad for hand sewing. Typing I stink at so I would trade for that LOL

Sue


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


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/12/2008 11:05 PM (GMT -7)   
Hi Sue,

Judging by the tone of your postings, it sounds like you are feeling better. I'm sorry to hear how serious Doug's brain-fog is. How much Enulose is he taking and is it really keeping him regularly in the bathroom? I didn't understand whether he had been on the Xifaxan. While the end result is supposed to be the same as the Lactulose (Enulose), it works in a totally different way. Is he on Xifaxan (Rifaximin) now?

I do hope that you see some improvement or get a break on the timing of a transplant.

Regarding your question, I do love my music. My problem is that I am stuck in the 'rock' of the 60's. Having grown up in the thick of the California recording industry, that is my favorite.

But I am also a 'classical' music fan. I was a trustee of an orchestra and last year I sat in with the Malmo Symphony in Sweden, playing kazoo on a classical CD recording (who would of thought of adding kazoo to a classical piece?). I am partial to 'folk' and 'bluegrass', and I can take a little 'country', especially if Norah Jones (a lovely siren) is singing.

How about you? What are your musical leanings?

I got some Eagles at i-Tunes so it's Eagles tonight, beginning with Witchy Woman and Hotel California.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/13/2008 8:32 AM (GMT -7)   
John, He has been on Xifaxin for a year and the enulose starts at 90ml 3x a day some days more. He can have 6 or more trips to bathroom and as much 12 but sometimes it doesnt matter. Today he has no clue where he is and I dont work till one so hopefully we have some improvement before I leave him with my brother. My brother should be fine with him as he did take care of his wife(MY best friend) up till she passed last october. He is an awesome caregiver I just hope it isnt to soon for him to be doing this all over again.
Is there a big difference between lactulose and enulose. The hospital clears him up quicker and they use lactulose but insurance only pays for the generic enulose! I often wonder about that.
Rock from the 60's is the bomb and early 70's but I have to admit I am a country girl with "Willie" leading the pack as my favorite. I even have my 14yr old grandson listening to Willie he was even thrilled when i had him on the bus with the band. Of course kids prefer the I think its called rap or R&B or whatever name they have for it. OUCH now I just felt like my parents when they heard The Who or Zappa. Later for me will be I think a Ray Charles or BB King. Have you heard of a Michael Joseph, hhmmm I think that was his name. Awesome on the Piano but i cant remember his name i do know it was 2first names..... now I have to look it up Sue
When I started counting my blessings my whole world turned around.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/13/2008 8:36 AM (GMT -7)   
John I have it...... William Joseph check him out if you dont already know him. I think he may have just released a new cd.
When I started counting my blessings my whole world turned around.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 6/13/2008 3:10 PM (GMT -7)   

Sue  I'm in the middle of dinner but wanted to let you know that Jerry takes Enulose instead of lactalose.  I haven't noticed any difference if he is in the hospital taking Lactalose or home using Enulose unless the has something similar to your husband.  His amonia gets high.  I do know he has been on Neomycin 14 days off and 14 days on and I can really tell the difference when he is on it.  Like John said its gets rid of the ammonia in a different way. 

 

John I'm so glad you have some Eagles music.  Its great.  I thought of another one today you would like but have already forgot who it was.  I may need some of Jerry's Enulose! 

JoAnn

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/13/2008 5:44 PM (GMT -7)   
JoAnn thanks for the response, I guess sometimes I try to hard to second guess everything. Part of my OCD LOL :)
When I started counting my blessings my whole world turned around.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 6/13/2008 6:55 PM (GMT -7)   

Sue  I do the same thing by that I mean second guess everything.  I think I'm worse some times then others.  I think it has to do with a combo of being scared and tired at the same time.  I know I'm not OCD but I think I can be a bit anal at times.  Sounds like you have things under control.  Hang in there.

JoAnn


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/13/2008 7:11 PM (GMT -7)   
John, music was always a big part of my life, but then I stopped listening for some years.  In the past 6 or so, I've been listening and attending concerts, as a result of my interest in Josh Groban and Clay Aiken.  Sue, William Joseph toured with Clay Aiken on two of his Christmas concert tours.  Cute guy, too!  ;)
 
John, how about the Mamas and Papas?  I have a Best of CD of theirs.  Have you ever heard of Fred Neil?  He's known to most people as the composer of Everybody's Talkin', but he wrote many more songs that were recorded by others.  Personally, I felt like his voice was so distinct, so haunting...nobody else has ever done justice to his songs, including Nilssen with ET.  He just happens to be the father of my daughter.  Unfortunately, he died about 6 years ago of cancer.
 
It's nice to have a clean apt.!  I really can't afford the expense, but I simply cannot clean well.  This current lady is superior.  She's a perfectionist.
 
Sue, I don't have much I can barter.  I can barely sew on a button.  I can type, transcribe, proofread, and edit some, but that's about it as far as "talents."  Lately, I've been getting more interested in cooking and trying different things.  Of course, fatigue is my big enemy.
 
Hugs,
Connie
 
 
 
 

Post Edited (hep93) : 6/13/2008 8:15:09 PM (GMT-6)


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/13/2008 7:33 PM (GMT -7)   
Connie, yeah William joseph is a looker!!! I love his stuff. Nothing like eye candy. Actually those can be good talents have you thought of doing some postings to type resumes or college students that need some typing done. Just a thought you probably already had. I have tickets to take my honey to see his favorite singer Jimmy Buffet, the concert is not till september so every week he goes on about how its getting closer and he cant wait. My grandson is going too, he only knows "cheeseburgers in paradise" but i am always trying to get him to be open minded and experience different things. For a 14 yr old he has learned to like alot of different stuff from even Etta James to classical, country, old rock etc.. As much as possible with Doug's health we try to have things to look forward to. Last year I took him to Fenway to his first Red Sox game and he loved the park, we had great seats in the handicapt section. He is not from here so getting a chance to go to Fenway was the coolest for him.
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/13/2008 8:30 PM (GMT -7)   

Sue, having something to look forward to can help one get through the angst and hassles of today. 

In the past--about 15 yrs. ago--I did do some college papers.  A pain, because of the footnotes, formats, etc.  I also used to transcribe lectures from tape for a friend that was going for her MSW.  I was working full time back then, and did this for extra money here and there.  As I said, fatigue is my enemy...plus I now always seem to be either having surgery or healing from it...plus the complications.  If I EVER get to feeling better, I may try doing something like that again.  I can certainly use the money.

My music tastes are very eclectic.  I will usually buy a CD based on the artist rather than the genre of music, although I'm partial to blues.  I have everything from a 3-CD set of classic blues artists (Leadbelly, John Lee Hooker, Billie Holiday, Lightenin' Hopkins) to Santana to Kenny G to Clay Aiken.  I would like to get to a concert by Bo Bice (American Idol runner-up) on July 3rd at the Beach, but it will depend on whether I can get someone to go with me/take me.

Hugs,

Connie



JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/13/2008 11:59 PM (GMT -7)   
Hi Sue,

Just a quick note on Enulose vs. Lactulose. They should be the same product -- Lactulose is the generic and Enulose is one of the trade names along with Generlac and Kristalose. If you feel there is a difference and that the Lactulose is better acting, you can get a 30 day supply (237ML) for $4, and a 90 day supply (711ML) for $10 at discount pharmacies (Wal-Mart, Sam's Club & Neighborhood Markets list these prices; Walgreens has Enulose $9 and $12; Costco is another with some generic pricing). These are retail prices so you don't need any insurance to get them.

My prescription coverage ran out in February so I'm all over cheap retail pricing.

I will listen to some William Joseph samples on i-Tunes and see what I think. His new album is "Beyond" and has good reviews.

Connie - If you like Blues, in England I found a collection of remastered original tracks on 8 CD's with Robert Johnson, Bo Diddly, Buddy Guy, Howlin Wolf, Otis Rush, T-bone Walker, B.B. King and Sonny Boy Williamson II. I think that they're all now 'public domain' so if you have any interest, I can put some tracks on a web site from which you can download them. If interested, e-mail me - my address is on my profile.

And Mamas and Papas - 'California Dreamin'', 'Dedicated to the One I Love', and 'Dream a Little Dream of Me'. All are a part of my 'travel mix' along with 'In The Summertime' by Mungo Jerry, 'Daydream' by Lovin' Spoonful, 'Time of the Season' by The Zombies -- you get the picture.

I hope that all is well with you all. I'm tired so I'll try to sleep.
Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/14/2008 1:07 PM (GMT -7)   
JohnCT, My hubby is on 90ml 3x a day so 270ml per day! I pick up enulose by the case. The State doesnt have a program for your prescriptions? Or even madicare? We would be so living in my little bug if not for prescription coverage. I think he is at 2000 per month or more. I was on my first week back to work after 6 weeks off and already out two days as he is took sick for my volunteers. Myself, him and my 18lb cat wont fit well living in a VW bug. He is now saying I should let him be sick so he can go to hospital then I can work before savings is tapped out. It is just so sad when you have to think that way. I wonder how often that really happens although I cant imagine it but out of need I bet it does more than we know. Well got to go
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/14/2008 4:41 PM (GMT -7)   

Sue, people have been known to do all kinds of things when money and insurance are low...separating, so household income will be less; making sure they have NO savings or other assets, so they can receive various benefits.  When a life is at stake, desperate measures are sometimes called for.  I hope you will be able to continue to work, but if you can't...I know of people who get paid to be "caregivers," even though they are relatives.  That's something you might want to look into.

Hugs,

Connie


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/14/2008 5:55 PM (GMT -7)   
Connie, I looked into being a paid caregiver but I am the POA and medical Proxy so I was told no go and the pay isnt enough to keep our apartment. We are not married now because of income. My income keeps us here and we still get some subsidy on rent which includes heat and that is so important with heat cost now. I pay my insurance and his premiums plus all the deductables I just dont know how people can do it. I actually sometimes feel guilty that we have separsted our income it to me is like cheating but if we lose benefits he loses his life. My cancer has stayed out of the picture but I have private disability to pay me if I am out again it is hard to have balance. I no longer have the home but I love the apartment, they let me have my flower garden and made a small patio area as my place of peace. My main assests are him and my girls, they treat him like a dad and help alot. Their dad passed when they were young. Today was just a bad day, he is feeling better this evening. I have to give credit to people with a serious illness it has to be so hard feeling like that all the time never knowing what the next day will bring, he always keeps his humor and stays so polite to everyone he deals with!
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/14/2008 9:37 PM (GMT -7)   

Sue, do NOT feel guilty!  It's a potentially life-threatening situation.  I'm sure you both have paid enough in taxes over the years that you should not feel the least bit bad about whatever help you can get!!  We deal with what life throws at us in the best way we can.

Hugs,

Connie


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/15/2008 10:45 AM (GMT -7)   
:-)  Hi Sue,
Nice to meet you. So sorry about your SO.  You have a lot to handle also.
I hope you all are having a nice Sunday afternoon. My mom and Terry are watching TV and they both keep falling asleep.
Now she wants her hair washed so I guess my time is through. I had someone here Wednesday to give her a bath, but she wouldn't do it.  She told her that "Carol can do it." It's not that I don't want to, but since we have the help through Hospice, I'm going to use them. I tried to explain to Mom that I am going to save my back any time I get a chance.
 
Talk to you soon,
 
Carol
 

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