HealingWell
Search Close Search
☰

he's my world, and he is fading fast...

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/12/2008 3:36 AM (GMT 0)
Greetings.  i have been visiting this website for awhile.  I have gathered so much information from here, but I know I still have alot to learn.  Knowledge is power.  This website has helped to empower me.  Allow me to introduce myself and my esld husband.  I am a mid 40's wife with a just turned 60 husband.  he has not been specifically diagnosed with esld, but the the symptoms are tell-tale.  Today he wake up and thought it was September. We are currently under the care of a Neurologist and a Gastro Dr.

He is currently drinking.  We have stopped twice, and were successful for a few weeks, then a business function, or someother reason, and here we go again.  He won;t go into treatment.  Our therapist calls him "thick". I have to agree.  My sister calls him the smartest man she ever met.  He built an empire, and we now live very comfortably.  Currently we are on a beach and last month we were in arizona.  but, after an ultrasound, many bloodtests, and egd scope, an mri, and a gluclose test, we are being told he has some elevated liver enzyme's.  Obviously, they all say quite drinking.  But he is the kinda guy that will go until he drops.  I'm just hoping i will be strong enough to catch him...

so, i have been watching his sodium intake, but after days of below 2000mg of sodium, he looks at me and says, " I need a hot dog, make it 2 hot dogs with mustard and relish and onions."  okeydokey...we can do that.  we just need to watch. 

then i just figured out that grapefruit is not a good thing...so we have been gorging on grapfruit since we got to florida a week ago...there goes that...fortunately he loves the watermelon and strawberries that florida has right now. 

so we are taking neurotonin, spriolactone, prevacid, and benicar...our supplements are sam e, milk thistle, prenatal and osteo biflex.

he can bearly walk 10 ft.  I am challenged with his neurotonin, as we were suppose to gradually increase the dosage, but we are currently at 1200 mg 3 times a day, and he still walks like the hunch back of notre dame.

His doctors all said the florida sun and warmth would do him good, and just keep him rested and fed.  His apetite is strong.

so, here i am, looking for help...specifically with what is going on with his back...I am aware of the alcohol damage the happens to nerves, but is there more???

Can i test his ammonia levels at home?? 

any other thoughts, and help would be sincerley appreciate. TIA

rainbeau

 

Posted 2/12/2008 6:17 AM (GMT 0)
Hello Rainbeau, and welcome to HealingWell. Sounds like your hands are full. Ammonia levels can not be taken at home. It should be part of his blood work. Haven't heard about back problems being part of it though.
If in fact if your husband is at esld he should be seen by a hepatoglist. They are a lot more knowledgeable about liver disease. Maybe they can get it through to him what he needs to stop doing and also what he needs to start doing to save his life. Liver disease is a very nasty disease. You may just have to be brutally frank with your husband. If he is at esld and has most of the symptoms below than he has all the other stuff to look forward to if he doesn't start taking the right steps now.

Some of the symptoms are:
Extreme fatigue
Itching
Edema
Confusion (encephalopathy)
Anxiety
Anger
Easily bruised
Bleeds a lot (hard to stop)
always cold
jaundice

Other stuff that can happen:
gallstones
bleeding varices
Seizures
Strokes
Liver Cancer
Kidney failure
Death

Good luck and take care.
Posted 2/12/2008 8:54 AM (GMT 0)
 

     Hello:  Rainbeau  So sorry to hear all your problems. Hope your husband wakes up soon. Your husband should already be on a diet. That's one of the first things they tell you. I have esld . I was addmitted to the hospital in Dec.06 because I just lost my brain for a few days due to the encepalopathy caused by high ammonia levels. I had never had high liver blood counts. Have been under Dr.s care for about 20 years because of my blood pressure . Blood tests all that time every 6 months. Never showed anything wrong with me. Anyway I was put on lactulose to lower ammonia and of course diet. Not because I am over weight but for the purpose of lowering my ammonia. Of course if he is overweight that will have to come down as well.  I have already been eveluated in Arizona and am on the waiting list. Since my liver tests are good. I have a long waite. Esld has to be diagnosed by a biopsy. Has he had one yet. Even on diet and lactulose my memmory goes blank about twice a week. That is the worst of my symptoms. Also have some swelling which I am taking spirolactone for and neurontin (gabapentin) for all the body aches. Although I am not allowed to take anything else for pain. (got disease from taking to much tylenol I suppose since I hardly ever drank they called it cryptogenic liver disease) I am in constant pain because I have three different types of arthritis which the neurontin does not help. So  now I just deal with pain every day. Have lowered my ammonia level within a year from 198 to less than 14. I am only hoping to slow down the disease because as PinkGrandma said it is a terrible disease. Your Gastrointerologis should have already tested him .Believe me that is a really a frightning - rude awakening. I was never told anything about grapfruit juice, I believe that is deleted from diet when you began to take some of the other medications.  So far just lactulose and Low fat Low Protine and basically no meat. I am also very slow to get anything done. Have short term memory loss , can't sleep at night and sometimes my body smells like amonia. So I shower alot. Oh and sometimes I do itch. I have learned a great deal from reading forums and the internet. My husband has been there for me 100% He drives me around if I feel a little light headed. does laundry and most house hold chores. I am still able to cook. Not like I used to though. He's had to be there for all of my appointments because I sometimes forget what the Dr.s tell me .

So you need to get strong because you will be dealing with his disease at a different level. Thank god for all of those who can put up with someone like those in our shoes. BEST WISHES AND GOOD LUCK TO BOTH OF YOU.  june

Posted 2/13/2008 3:26 AM (GMT 0)

Hi Rainbeau-  Your husband sounds a lot like mine.  As they told me on one of our emergency room trips.  "You are in for it"!  And boy were they right.  My husband was a workaholic.  We are not rich but very comfortable.  Have traveled all over the world!  Right before he got sick we started building a second home on the coast to spend some quit time.  I ended up making most of the decisions for the house from a lap top in a hospital room.  Jerry has gone down hill very quickly.  Much faster then the Dr.'s have ever seen.  He's lost 75 lbs and walks around like an old man.  He's 58 and looks 78.  You never know when he is going to vomit.  When it happens there is not much warning.  He can't drive, can barely talk and has to have help dressing.  We've been trying to get on a list at Vanderbilt.  We're getting closer but its been a long really hard journey.  Most hospitals won't even consider listing you unless you stop drinking for at least 6 months.  My husband totally stopped the minute there was a mention of cerhossis.  Your husband needs to stop drinking.  If he doesn't he will die much faster and it won't be pretty.  You are really in for it.  I'm not sure how you will convince your husband to quit.  he much decided for himself.  Just read everything you can because from now on this disease will comsume your life.  Trust me.  If I can help in any way please let me know.  I have only been at this for 10 months so I still have a lot to learn.  One thing I know is I'm much tougher!!  I will prey for you.   

JoAnn

Posted 2/13/2008 4:56 AM (GMT 0)
Hi Rainbeau, I just wanted to welcome you to the forum. I am so sorry to hear that you husband is not doing well. My husband suffers from esld. He suffers from extreme fatigue, encephalopathy, swelling in his legs, ankles and stomach. His legs hurt him constantly now. He is 43 but seems very much older mentally and physically. I keep waiting for him to come back to me. It is really hard at times. He also has been my world since I was 15 years old. Right now I feel lost and alone. I hope that things work out for your husband, and he takes the necessary steps to improve his health. My thoughts and prayers are with you.
Posted 2/13/2008 4:10 PM (GMT 0)
Thanks to everyone for your responses and your support. he has done all the testing but not the liver biopsy. it has been recommended many times, but he declines. I will be working towards that so we can get him in to wise up...I will also be checking into a hepatologist. thanks for the advice, and for not sugar-coating it. he has all the symptoms that have been mentioned. i help him do everything. he keeps saying that when we get back and get the results back on the MRI, we will know what to do...i, as well as all the kids and close friends have been urging him to quit drinking or he will die, but like some one said, no one can tell him, he must want to do it himself.

so thanks, in advance, for all your help, ideas, and support. I know i have a long row to hoe, and i am gonna need all the help i can get!!

sincerely, rainbeau
Posted 2/14/2008 3:07 AM (GMT 0)
Rainbeau, please come back for support. As you said you have a very rough row to hoe. This site literaly saved me when I was going through it with my husband. So I have been in your shoes. I just wish I had found this site earlier in his disease.

Take care and thoughts and prayers will be with you.
Posted 2/18/2008 1:26 AM (GMT 0)
so it's truly been a rollercoaster weekend. for valentine's day, we went to the corner salon, and he was to get a haircut and i was gonna get a manicure.... best laid plans.... We have never been so grateful to be back to our home away from home. I got him settled...but he was up within the hour with awful diarrhea...at this point his bottom is so sore, he can barely sit...thank goodness i brought some vaseline to cushion his bum. He felt better on saturday, and the sun was shining so he wanted to go to the pool. the going to the pool is hard ..but once we get there, he basks in the glory of the sun and sounds. It's the getting back to the condo which is truly the challenge. not only do we have his major health challenges, but he has bad knees...really bad knees. again, thankful to be back to our condo.

today was the worst day we've had. it's as if the good appetite i have been so pleased with has came back to smack us in the butt...literally.

he ate very little today, but what he did eat was good stuff. fresh grouper and salad. his favorite homemade cookies.

I have asked repeatedly if we could head home early, and he says no, he wants to be here...so we've got another 9 days...it's so much easier to take care for him at home.

I know being in florida is what he wanted and what the doctors and others recommended, but at what point do I get to say what I want. quite frankly, this place is just a reminder of what we can;t do anymore. i miss my mom and my cats. i miss our bed and our sheets and towels and our kitchen and our shower and my mkx...but most of all, i miss my husband.

thanks for letting me vent.
Posted 2/18/2008 2:57 AM (GMT 0)
Hello Rainbeau, Sorry your trip is so hard on you. He probably realizes that his time on earth maybe limited so he wants to do things while he can. Even though it makes it harder on you he probably haven't even thought of that.
Sometimes the patients don't realize what it is doing to the caregiver.
I worked full time plus and still got my husband to his zillion appointments too. My sup was very flexible with me. I worked split shifts.weekends or super early shifts when he had appointments to get to. But everyday when I got off of work he wanted me to take him to the grocery store as soon as I walked in the door. Sometimes I just had to put my foot down and refuse. I was just too tired some days. He would get upset with me but I knew that he would get over it. But then the guilt would set in. But looking back now. No one is super human. And know one can do it all alone. That's why I tell everyone ask for help.
Rainbeau, he is still your husband. Just not the same old husband. It's so hard to deal with the changes in them. I wish that my husband was still here any way that I could have him. What I am trying to say is cherish this time with your husband. Ask or hire someone to help you so that you are not so tired and can enjoy being with him more. If I knew long before my husband's death that he was not going to get a liver transplant I would have just did the things that we enjoyed instead of spending all of our time,money and energy trying to get him on the list. Looking back now.... I feel like his last 2 years were misspent. But you don't know the future and have to fight like hell to try and get them on the list.

Take care Rainbeau....my thoughts and prayers are with both of you.
Posted 2/18/2008 3:33 AM (GMT 0)

Rainbeau  Man do I know what you mean.  I was driving my husband to a Dr appt the other day and just out of the blue started to cry.  I told him I miss him so much and I miss our life.  We have just finished a second home and can't even enjoy it.  He's much to sick.  I know what Pink Grama means about spending so much time trying to get her husband listed.  Thats about all we have done.  Please don't give up.  Get him to the Dr's and they might be able to make him feel better.  Thats the only thing that keeps me going is HOPE.  You just have to have some hope.  My husband doesn't have diaheria problems he just vomits alot.  Its a balancing act with amonia and electrolytes!  You can do it.  Trust me.  It will give you more time.  Is your husband still drinking?  Get tough if you have to.  Hang in there.  You are much stronger then you think.

JoAnn

Posted 2/19/2008 12:19 AM (GMT 0)
Thanks joann and pink grandma for your words of support...i was definitley having my own little pity party.

Today was a new day. our morning was pretty usual. same old same old...medicine with apple juice...oranges and watermelon, then an egg in frame...read the newspaper and talk about current events. the weather was perfect here...warm with gentle ocean breezes...he really wanted to go to the pool since we did not get there yesterday...he took a tramadol before we headed down, and he was walkng like a champ. we sat by the pool today for 2 hours and he said it was the best he's felt in weeks. he said i feel the vitamin e from the sun giving me so much energy. (I was inclined to think the tramadol had a little to do with it too!) while we were down there, 2 couples struck up a conversation with us, one being directly across the hall from us...they told us if we ever needed anythng, or i needed help getting steve around, just knock on the door(after being here for 3 weeks, i think people are taking note of us)...they would be glad to help...such nice people in this world. anywho, as usual, the trip back to the condo was exhausting. by the time we made it back, mr. wonderful was stooped over writhng in pain. he took a nap. when he wokeup, he was ready for PIZZA!!! (not the perfect low sodium meal, but no pep, or sausage, or ham...just a veggie with cheese. after dinner, he told me he feels so safe and loved. when i hold his hand on the walk back from the pool, he feels weak but knows he won;t fall as long as i am holding his hand. and when he wakes in the morning or from a nap, he feels secure because he sees me sitting in the chair next to the bed when he awakes. a conversation ensued which i will cherish always.

so how's things with you gals today??? pink, are you any closer to helping in the support field. Joann, how are things for you today/??

love and light to all who are giving and caring to ones they love!
Posted 2/19/2008 2:48 AM (GMT 0)
Hi Rainbeau, I too miss my husband more than anything. It was a little over a month ago that I got to see the man that I knew. I am beginning to think that he will never be that person again. I am glad that you got to enjoy a little time with your husband. I agree with everyone. Cherish the good days. They seem to come so few and far between. Your husband is so lucky to have you.
Posted 2/19/2008 3:42 AM (GMT 0)
Butterfly and JoAnn, your husbands are very lucky to have you to along with Rainbeau's. What have each of you done for your self lately? If my guess is right... probably nothing huh? Do me a favor please. Do something nice for yourself. Doesn't have to be something big or expensive. Maybe a bubble bath, or read a magazine or a walk. Just something to recharge or batteries. You are not the energizer bunnies you know. This goes for any caregiver that reads this. You'd be surprised how taking a few minutes for your self every now and then refreshes you.
As for me.... everyone here gives me great joy. This site is still helping me every time someone reaches out to help someone else who going through the same thing. Thank all of you.
yeah tongue :-) Hope everyone has a good evening .

Thoughts and prayers to all.
Posted 2/19/2008 4:05 AM (GMT 0)

Hi Rainbeau   Our good days are far and few between.  I now cherish a few good hours.  Jerry is eating less and less.  He can no longer sit on a hard chair because he's so boney it hurts.  It seems we have different appts almost every day.  Two counseling appts twice a week.  I get to go in with him and it helps me more then him.  The counselor is just great and I get to vent.  It makes me feel much better.  That way I don't get on Jerry.  I do take my bath every night and have my alone time in my den.  Sometimes I watch TV or shop the internet for cute things for our beach house.  None of it mean anything without Jerry.  I'm getting used to our life the way it is but I long for the old one.  I do have incredible memories to hold on to.  I feel so selfish at times I just want to have him a little longer.  We go back to Vanderbilt the 27th and hopefully find out if he can get listed.  It was the Physiciatrist at Vanderbilts idea Jerry see a counselor here.  The counselor here is helping a lot.  He thinks that Jerry doesn't need any counseling but this woman on the team is insisting.  Rainbeau are you considering trying to get him on a transplant.  Have you talked to him about it.  It sounds like he is giving up.  Please don't let him do that.  It is amazing what they can do now.  Jerry had a Dr. tell him the other day they are actually taking cells from your body and growing new orgins.  The liver is one of them.  Isn't that incredible!!!  Take care and enjoy every second.  I know Pink Grandma would say that. 

JoAnn

Posted 2/19/2008 8:50 AM (GMT 0)

 

     Reading this forum has really helped me a great deal. I realize what my husband is going through every day. Seeing me slip away . When we went for my eveluation. At one point I had to see a psychologyst. He asked to speak to my husband and asked him how he felt about my condition . He responded "sometimes she makes me laugh with the question she asks , or the things she does, but "sometimes I really feel sad, because she is not the person I once knew." Did that ever sink into my foggy brain. Please be patient with us some of us do realize what we are doing but just can't help ourselves. Enough of me. 

     Joann: What does your husband think about having to go to counsing ?  Fortunately for me, The Dr.'s were aware that I had'nt been able to take my lactulose regularly because of the many appointments etc...and found it difficult to respond quickly.  Was the he not listed because of the counceling?  If so when will they let you know?

      Rainbou:  Has your husband given any thought about getting on the list?  I got on it as soon as they told me my liver was damaged. Should say my husband and I worked on that.  It takes a while it takes a lot longer if you have to get counsling or therapy. For me it was just a matter of a few papers and thing done here at home. Like the hepitis B vaccine, phenmonia, flu , and  additional Mamo since they so something suspicious etc.  I was listed about a month later. I won't be taken of the list as long as I continue sending them lab reports every three months. Will go higher on list every year even if my tests stay the same. So far so good. Hope you have luck talking him into getting started. It's probably going to be in your hands.  Good luck  :: june

Posted 2/19/2008 3:03 PM (GMT 0)
June

We started the process at Vanderbilt last Sept.  When his Drs here thought he needed a TIPS  They send Jerry there by Ambulance because of fluid and Electrolytes.  They did not want to do a TIP at that time but did start the process for listing.  At that time the liver Dr. said he needed counseling to be listed.  We came home found a counselor that was approved and he started going.  He didn't think he would like it but turned out he did.  The counselor didnt want to see him any longer after Nov because he didn't think he really needed it.  When we went back to Vandy the head Phyciatrist deciced he was a good counselor.  To make a long story short she trying sending us to another and they also said it was necessary because Jerry had not drank in almost a year.  Now she is saying our original counselor is OK.  She game him a list of what she wants him to discuss and also says he needs AA.  Its the AA he's not to crazy about but he's doing it.  As far as the couseling I go in with him now.  I love it.  It really helps me.  We go back to Vandy on the 27th to see the liver Dr. because I have been complaining that he is degressing rapidly.  He can hardly walk.  I'm afraid they won't list him because I don't have an appt with the he Phyciatrist and couldn't get one.  I think she is goining to have to make the call.  I'm off to take him to get drained.  Something every day.  He is shaking so bad today I'm not sure what thats all about.  Usually its his amonia level but don't think its hight.  June was your last MELD score.  Jerry's was 18.  Some days I don't think I would make it without this Forum.  Bless you all.

JoAnn

Posted 2/20/2008 11:50 PM (GMT 0)
well the last 24 hours have been awful. at about 1:00 a.m. i woke up to find mr. wonderful sprawled on the bathrom floor. quite a mess. he was trying to get to the bathroom and fell. he would not let me call the squad, he wanted to try to get up on his own. so for an hour we tried to get him up, but he said he felt like he dislocated his shoulder. no blood, just a very sore right shoulder. since his knees and back are already weak, there was no way i could get him up...and since he just wanted to rest, i gathered all the pillows i could find, covered him in blankets and made him as comfortabel as possible. so finally at 8:00 a.m. he said call the squad. it took 2 big burly guys to get my 220lb , 6ft 2 husband on a gurney and off we went to ER. did i tell you we are in a strange house and in a strange town 1000 miles away from home???

anywho, after 6 hours at the ER, he has a broken clavicle. his right arm is in a sling and they sent us home with motrin(ibuprofen) and oxycodone. i quizzed the doctors about mr. wonderfuls liver diseasenot good with these scrips, and he said he will need something for the pain, and try to keep him comfortable with the motrin. currently he is sleeping, and they gave him 2 percocets in the hospital. he has thrownup twice, directly after trying to get something to eat. grilled cheese, and oranges.

so do i give him the ibuprofen? and try to stay ahead of the pain??? knowing he has issues with his liver???

I pray that Jerry and Joann had a better day than us...

love and light to all and thanks in advance for the help.
rainbeau

s
Posted 2/21/2008 12:51 AM (GMT 0)

rainbeau, I am so sorry that you are going thru all this with your husband. i am relieved that he let you call the paramedics tho. A broken clavicle is horrendously painful. We are here for you and will keep you both in our prayers.

 Shelly

Posted 2/21/2008 1:21 AM (GMT 0)
thank you shelly...i have so admired each and every one of your posts. you are knowledgable and caring.

so he took a motrin, and he is up and wanting to watch the eclipse. funny thing is we were in santa monica for the lunar eclipse in late august, watching it on the pacific ocean, and now we are on the east coast, with the ocean as a back drop getting ready to watch this eclipse. on the treasure coast, creating more memories. have not alerted anyone at home about today's events. just not up to the q & a. i just wanna focus on mr. wondrful. i've had too much too handle today.

thanks shelly!!! hope you can enjoy the eclipse wherever you are!
love and light,
rainbeau

ps. prayers to joann and jerry
Posted 2/21/2008 3:43 AM (GMT 0)

Rainbeau  I know exactly what you mean about not wanting to answer qustions.  Some times I'm on the phone for hourse answering questions.  We have four children and then the friends.  I know everyone means well and are all concerned but sometimes its so hard to tell the same story over and over.  What I did for a while was tell one person and they had one person they had to call and so on.  That happened alot when we were in the emergency room and hospital.  I wanted to address the pain meds.  The last time we were in the emergency room Jerry was complaining of severe pain in his back.  That happens alot but I usually just rub his back for him.  This time the Dr. gave him morphine.  I was upset but the Dr. said it  woudl hurt him.  As it turned out they couldn't figure out what the pain was and he was getting worse.  Three days they just kept injecting him with stronger and stronger pain meds.  He started acting so strange.  Finally after three nights with no sleep because he was thrashing about a nurse and I made the decision to take him off all pain meds.  It was making him crazy.  They never did determine what the pain was.  So my point is I hope the few pain pills don't hurt your husband.  I'm so sorry you had such a long night.  I have had so many of them and it makes things so much hard to deal with when you are sleep deprived.  WE have had a long two days.  Today we saw the Dr. re his high amonia levels.  He's so lathargic can hardly talk, falls a sleep in mid sentence.  He's shaking so bad he can hardly eat.  The Dr. today decided not to put him in the hospital because his head seems to be clear.  He's put him on antibotics.  I'm praying it works.  Every time one of these episodes happens I think things can't get much worse but they do!!!  Its hard to find 10 minutes of good in a day like this.  I totally forgot about the eclipse.  Jerry would have loved it.  Sorry this has been so long.  Keep us posted how you are.  I am thinking of you.

JoAnn

Posted 2/23/2008 12:47 AM (GMT 0)
So we stayed in yesterday. Thankfully it rained all day, so mr. wonderful didn;t feel the need to be by the pool. so we had some low sodium chicken noodle soup for dinner and salad. And he ate enough. then we retired to the bedroom to watch alittle t.v. we were sound asleep by 8:30. I try to fall asleep after him. At 1:00 a.m. i woke up as he began to wrestle out of bed. I asked if he needed some help. and he barked at me...No, would you stop hen picking me!!! so i laid back down. it wasn;t 2 mintues later, i hear a big thump, and he has landed on the floor on all fours. on his bad knees. needless to say, he was disoriented. but we made it back to bed, and he slept until noon today. he hasn;t had much to eat today. but he has not been afraid to ask for motrin every 6 hours. he has had alot less wine, and has shown some withdrawal symptoms. i have not been more than 3 feet away from him, but once, in the last 48 hours. and even then, i have been within eye shot.

I know he can't do the withdrawal on his own again. he needs to be in a health care facility to do this. We have done the withdrawal twice before at home and i just don;t think he can physicaly do it again without being under medical supervision. funny thing is, one of the best rehab facilities in the county is 10 miuntes away from our house in arizona. we have discussed this at length. he wants to go to arizona in may for his birthday. i'm not going back to arizona until he agrees to go to treatment.

there's no place like home. theres no place like home. there's no place like home. >as she grabs her ruby red slippers>


Joann, how are you? I have been thinking about you today. keep the faith!!

love and light,
rainbeau
Posted 2/23/2008 4:45 AM (GMT 0)

Hi Rainbeau.  I can't immagine how you can handle him being sick and still drinking.  To have to deal with both would be so hard.  Jerry started vomiting about 5:00 pm yesterday.  Normally he vomits then he's fine for a day or so.  This time it lasted an hour so I called Vanderbilt.  I knew it was coming because they took his blood on Tuesday when they drained him and his ammonia was 98 which is high for him.  Then on Wed the Dr. put him on a new antibotic.  Anyway we came to the emergency room last night at 7:00.  Blood work showed  ammonia 119 signs of dehydration and possibly an infection.  We got to a room at 12:00 AM.  We are still here.  Every time this happens he is a little sicker.  He's still not been able to eat anything.  They have him on IV.  He's still vomiting some.  I'm going on my third night with no sleep.  He's lost about 75 lbs.  We have an appt at Vanderbilt on th 27th.  Hope they can get him better by then.  He's just so weak!!!  I just don't know how we can get any weight on him.  The Dr. said his body is fighting so hard to do what the liver can't he's just burning up everything up.  He has no muscle mass left.  OH yes, and his blood count is low.  They don't know what the problem is.   The Dr. is talking about maybe doing another scope but he's had two.  And to top it all off I'm sick.  I had to call my Dr. this morning for an antibotic.  Not sure if its viral or not.  I just didn't want to take any chances.  I have my lap top so let me know how you are doing.  Hang in there.  I wish there was something I could say to make you feel better.  As Pink Grandma would say just charge those batteries and keep going. 

JoAnn

Posted 2/23/2008 9:47 AM (GMT 0)
 

     Joann: Don't realy know what a TIP is. I went for a biopsy after 6 mo. of high ammonia levels. Thats when they told me I had end stage liver disease. Was told to see a hosp. or clinic that did transplants as soon as possible. Had to decide and research which one because the closest ones are out of state. Made a choice and gastro. gave me a refferral for insur. purposes. After being accepted by insurance they appointed a case worker and approved of the clinic. I was sent a schedule within two weeks for a week of eveluations which included seeing Hep. Dr. , Phyco. gyn, every dr. ex-ray and scan you can think of. The week started on a monday a 6:00am. -5:00pm. every day till friday. Then I waited for a couple of weeks for them to decide if I was a candidate for a transplant.

     Before I went I had checked my own MELD score according to the labs. done prior to my biopsy and it was 10. When the clinic did their labs. a month later it was 9. So I am listed starting at 9 which seems to me pretty low. My ammonia has gone from 168 to less than 14. Was told I could survive for 9-5 years or take a turn for worst in 3 months or as little as 48 hours. Has your husband gotton his meld score yet. I don't understand why you have to make the appointments. Everything was done for me in advance. Now I just go to a local lab. for my blood work when they fax in a request. Then the clinic call me with results. Of course I already have them since the lab always sends me a copy.

 

     Rainbo: How is you husband healing from his fall. Hope the fall did'nt make matters any worse.

 

     Pink Grandma : Thanks again for being here for all of us. I certainly appreciate your words of wisdom.

    

     Everyone Else : Hope you are all doing well. Since my brain seems to melfunction at times . I forget names etc....and quite often repeat myself.

 

        Please forgive any errors, I never preview.   LOL  to all.    june

Posted 2/23/2008 1:51 PM (GMT 0)

June  The way I understand TIPS is a procedure to get the fluid out.  It sounds to me like a type of drain.  The only problem with a TIPS is it really hard to control ammonia levels.  The reason I ask for labs is when Jerry is in getting drained if I think his ammonia is high or he seems dehydrated (which he has a lot problem with) I call Vanderbilt and they suggest getting it done.  They are 3 hrs from us.  I don't know why Vanderbilt is so slow.  Jerry had all those tests like you were talking about.  Then the committee met and decided he was a good canidate for a transplant.  BUT one member of the team the Physiciatrist decided Jerry needed counseling just in case he decided to start drinking some day!!!  He quit drinking on his own before he got sick.  I also think some of his liver problems are from years of tylenol and ibeprofun due to back problems.  Also high cholesterol and taking Lepitor since he was in his 30's.  The drinking did play a huge role.  This physciatrist at Vandy seems to think because he quit on his own no one can really do that forever.  I really beleive she has an agenda.  She told us that her husband is an alchoholic!  Also she only talked to us for about 20 minutes.  I just don't believe you can know someone in 20 minutes. But in order to get listed we have to do what she says.  The counselor Jerry has been seeing is totally convinced he is OK.  He has a very strong mind and once he makes up his mind he usually means it.  I totally understand they need to protect the organs.  But you can't treat people all the same.  Jerry's MELD score was an 18 in November.  He is much worse now.  I have no ideal what it is now.  If someone could tell me the formula.  Vandy did tell us the four things involved.  I just don't have my notes with me.  If I were to guess if Jerry was on the list now he would be at the top.  He is type O blood which they said is good and bad.  More people are type O but A and B can receive type O and people that are O can only receive O.  There is a lot to learn.  Excuse the typo's I've not had much sleep in the last three days!

Rainbeau I hope you are doing OK.  Hang in there.  I wish there was something I could do to help. 

JoAnn 

Posted 2/23/2008 2:55 PM (GMT 0)
good morning all!! Thanks for all your thoughts and concerns.

june, it is nice to hear your side of things. fear and frustration manifest themselves differently for each individual. your posts help me keep in mind that none of this negative stuff is intentional. it's just how he shows me he is human.

oh golly joann...you must be one helluva woman...i get exhausted just reading what you are going thru..Jerry is one lucky guy. i have had some success in calculating meld scores from the mayo website. google calculating meld score, and it should be one of the first choices. lots of other information there too, which is probably stuff you already know. please please please take care of yourself. get some rest. keep the faith. you will need all the rest you can get now, because in 4 days jerry will be placed on the list! I pray for it daily!!! and this psychiatrist from vandy needs a psyhiatrist of her own. she needs to see the light, or i will have to go down there and kick her in her shins! ha ha, just kidding. now, get some rest.

love and light, rainbeau
✚ New Topic ✚ Reply
123