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Bareback
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 11/1/2007 1:26 AM (GMT -7)   
well hope this works and hope I can find it again. sorry I took so long to get back.....was waiting until today, my next doctor visit so I would have more grounded information.

They put me on the lactoluse but is hard to take. Everything makes me sick now. I can hardly eat at all. and sometimes I can't take my medicines tho I know how important it is to take them. A little hstory....I came down with adult onset Asthma just over a year ago. and it really got bad. Then the two inhalers starting causing real problems. Atleast one is a steroid if not both,,,,those are never good. but I had no choice. Then diabetes set in which runs in our family, but all the coughing from the uncontroled asthma really did me in. Some major arteries from my asaphagus ruptured...this sent me to the hospital I lay at deaths door for 3 or 4 days. the doctors said they didnt rush in because they watched my vital signs thru the day and frankly, they did not think I would live. and the next time if it happens again...I won't.

Well every since I returned home I have continued to spiral downhill. Each time I go to the doctor there has something else failed. Mind you I am only 50 years old....anyway 6 weeks ago she said my sodium level has dropped to low,,,two weeks later Im back because they have found my ammonia levels are way to high. so today I am back again....she still wants me to have aheart scan done....abnormal EKG. and also wants me to think about going to a liver specialist which I would have to pay for since I have no insurance. My fluids are no loner going down which means the liver is failing even more. and she wants to get a better idea what is going on. So that is where I am........my question is what should your amonnia level be????? I have no idea. they told me it should be between 51 and 90 at the doctor's office......mine was 251. no wonder for the concern. but Ihave no idea...does anyone know???

This is all new to me so Im having a difficult time with it. Thank you all so much for your love and prayers and concerns. I am sick so much I now have to watch church on TV each Sunday morning. I am still trying to work, tho were it not for my job and them looking out for me......I would not be able to. But I am still trying to hang in there.

AL

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/1/2007 6:47 PM (GMT -7)   
Hello Al. Hope your doing okay this evening. Ammonia levels should be between 15 and 45. Check out the post from Shelly about the liver. It has a lot of good information in it. The ammonia levels were listed at the bottom of the list. It a balancing act with the meds. Lactalose is very important for you to take. Try mixing it with a little of your favorite juice or soda. The sodium is tricky too. Try just salting one thing that you eat a little if your sodium is too low. It is important to take all your meds. Try eating a little something about 1/2 hour before you take them. And don't take your lactalose right after you take any other meds or right before you eat. It use to make my husband throw up so if it is doing that to you also, try to space it at least 1 hour after you've taken any other meds. Take care Al. Thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/1/2007 8:08 PM (GMT -7)   
Al, I am glad you found your way back here, and I am sorry that you are having such a rough time. Listen to Pink Grandma. She is very knowledgable about these things. I will keep you in my thoughts and prayers
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 11/25/2007 3:16 PM (GMT -7)   

Hello  I am new to this and Ilm not sure you will even get this.  My husband was diagnosed with cirhossis 7 mths ago.  He has not touch alcohol since.  For four months we have been one week in the hospital one week home then back in the hospital.  In the beginning it was sodium levels then all the other electrolytes.  They started draining him every week in May.  Since then we have had epsodes of three drains a week.  A total of 23 liters at one time.  That is when his Dr. sent him to Vanderbilt.  They have changed his medication and now for the first time it looks like maybe he won't have to be drained tomorrow (our usual day to be drained.  He also has two hernia's one keeps popping out and its very painful.  That was one of our emergency trips.   My question now is he's so week he can hardly walk.  Today he fell down then started vomiting and his hernia papped out again.  I have learned how to get it pushed back in but I'm concerned about his weekness.  His apatite has been horrible the last three day.  Any advise would be great. 

Thank you


Bareback
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 11/25/2007 3:41 PM (GMT -7)   
hello,
i still havent learned to get around well on this site either.

i hope and pray your husband is doing better. I have so many other problems as well. mine started when i came down with asthma just over a year ago. the two inhalers (one of which is a steroid) started wrecking everything. I then developed an iregular heartrate, diabetes (which runs in my family) jumped up and finished off everything else. now everything is working against each other. my asthma caused bleeding of the asaphogus and put me in the hospital in June. I was not suppose to live.. for 3 days in intensive care i lay at death's door. But i survived that round. Doctors said I won't the next.

anyway since then i have constantly gone downhill. coming home each week with a new problem. then my sodium level went too low, then my ammonia levels went way too high. I knew nothing about them either. but i do know it is what kills your brain cells....they say even alzheimers is started by your ammonia levels. that's all i know so far. have a doctor visit this week on wednesday. Maybe i can find out more then.

AL

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/25/2007 5:35 PM (GMT -7)   
Hello Exhaused and Al. Exhaused glad you found us and welcome. And welcome back Al. As a former caregiver Exhaused I can relate so well to you. It's a most difficult job. My advice to you is to remember to try to take care of yourself too. I know it is hard but you will be no good to your husband if you get sick. Do you have anyone who can help you out a little? Family or close friends? Ask for help...maybe someone to help you clean house or cook a meal now and then or run to the pharmacy. Just try to get your husband to eat alot of small meals each day. My husband had to adjust his eating patterns to that just so he could try and keep some food down. As the disease progress he also couldn't tolerate fatty foods or heavy foods. Even spicy foods started making him sick. Is your husband taking any vitamins or minerals? The docs should have him on some.

This disease requires a balancing act between meds, foods, salt, liquids and vitamins. All of them keep getting readjusted as needed by the symptoms that pop up.

Al I am so sorry that you are having such a terrible time with it. Let us know what your doctor says Wednesday. Thoughts and prayers to all.
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.


Bareback
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 11/25/2007 6:14 PM (GMT -7)   
DEAR PINK GRANDMA.
LOL! that NAME SOUNDS SO IMPERSONABLE FOR SUCH A CARING PERSON. WISH I HAD ANOTHER ONE. ANYWAY
YOU ARE SO RIGHT about THE ADVICE HERE. IT IS OBVIOUS YOU HAVE ALREADY GONE THRU LOTS..... I DID NOT DISCLOSE ALL....WHEN I LEFT THE HOSPITAL OR JUST BEFORE....MY DOCTOR TOLD ME THEN..I MIGHT HAVE A YEAR OR I MIGHT HAVE LESS. I CONTINUE TO GO DOWNHILL EVERY WEEK. EACH TIME I GO BACK THERE IS YET ANOTHER PROBLEM. NOW I GO AGAIN WEDNESDAY AND ALREADY HAVE MORE PROBLEMS. EITHER MY MEDS ARE NO LONGER WORKING, OR MY KIDNEYS ARE FAILING MORE AND MOREL. OR BOTH. MY FLUID IS BUILDING BACK UP....GAINED 12 LBS. LAST TWO WEEKS I HARDLEY EAT SO I KNOW WHAT THE GAIN IS...FLUID. BUT I STILL TRY TO REMAIN UPBEAT FOR THE HOLLIDAYS.

THANKS FOR LISTENING AND FOR CARING.

AL

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/25/2007 7:42 PM (GMT -7)   
Hello again Al, My granddaughter gave me my name. I have red hair so I was Pinkgrandma and her other one is Yellowgrandma because of her blonde hair. And yes I do have one heck of a temper when provoked. LOL
I was afraid that your disease had progressed far. If the docs have given you a year are less....do you have hospice involved yet? Here in California or at least my county hospice can get involved up to a year. I am under the impression that in some states that it is 6 months or less though. And I am sorry but I have forgotten if you have someone helping you though this.

My hat is off to you. How you continue to work is beyond me. Have you tried getting any type disability? You know you got to qualify for it as sick as you are. What state or country do you live in if you don't mind me asking?

You know AL....you can bookmark this site so that it is easy for you to find, that's what I had to do or I wouldn't have been able to find again after the first time. If you don't know how to bookmark let me know and I'll walk you through it.

Take care and come back anytime..........
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.

Post Edited (Pink Grandma) : 11/25/2007 8:02:22 PM (GMT-7)


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 11/25/2007 7:58 PM (GMT -7)   
Hello Pink Grama  I just love your name and the story behind it.  We have four children and we finally had to tell them what was going on.  My husband is so worried about his mother he didn't want to tell anyone what was wrong for fear she would find out.  So now I do have some help.  The girls are great but they each have three children.  I think my biggest problem is I want answers, all the answers.  Everytine I think I have things figured out something new comes along.  My husband is NOT on any vitamins.  When we saw his Dr last week at Vandy he suggested proteiin.  Afcourse I had just been told the week before NO protein.  I think I have that all figured out that was when his amonia levels were high!!  Last week the Dr at Vandy increased his Spironolactone to 300 mg daily and Bumetonide to 4 mg a day.  He also got a Hep shot and a pnemonia shot.  I'm sure that is why he felt bad last week end but the weekness has me puzzled!!!  If you have any ideas I would appreciate it.  I'm hoping to hear from Vandy tomorrow.  Thanks Again

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/25/2007 8:12 PM (GMT -7)   
Hello exhausted, Glad that you have family to help out a some. As far as the weakness is concerned it can be caused by a number of things. Lack of exercise, loss of muscle tone, lack of vital nutrients, there's just so many things that can contribute to it. Have you read a number of the older posts yet? There are posts that may answer some of your many questions. I'll see if I can find some that may answer some of your questions and bump them to the top.

Hang in there. We are here to help where we can. 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.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/25/2007 9:47 PM (GMT -7)   
Well exhausted, I could not find the posts that I was looking for so I googled " endstage liver disease complications". I came across this website . http://www.mywhatever.com/cifwriter/library/mortals/mort2514.html

It has a lot of information on it. Copy and paste it in your browser. In fact there are a lot of good websites. Google your questions and see what comes up. Take care.
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.


Bareback
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 11/26/2007 5:28 AM (GMT -7)   
DEAR PINK GRANDMA,
YOU AIN'T FOOLING ME I CAN ALREADY TELL FROM YOUR POSTS WHAT A SWEEET, COMPASSIONATE PERSON YOU ARE. MY AUNT WAS READY HEADED, NOT A SWEETER PERSON IN THE WORLD.

THANK YOU FOR YOUR CONECERN....I DON'T MIND YOUR QUESTIONS AT ALL.... IS GOOD SOMETIMES TO JUST GET IT OUT. WHEN I WAS IN ICU IN JUNE ILAY AT DEATHS DOOR FOR 3 DAYS. I WASNT SUPPOSE TO LIVE BUT I DID. BUT THE DOCTORS SAID NEXT TIME I WON'T. I HAVE MORE THAN JUST LIVER PROBLEMS, MY ASTHMA AND THE INHALERS (ONE OF WHICH IS A STEROID) IS WHAT PUT ME IN THE HOSPITAL. BUT MY DIABETES AND IRATIC HEARTRATE ALONG WITH MY MEDS., ARE NOW WHATS WRECKING HAVOC.

I CONTINUE TO WORK AS A COUPLE OF REASONS. MY COMPANY HAS BEEN SO GOOD TO ME, THEY WANT ME TO OVERDO...NOTHING! SO I REALLY DON'T DO ALL I AM SUPPOSE TO ANYMORE. MY BOSS HAD A FIT WHEN I TOLD HER OUR LAWN SERVICE QUIT AND I WAS MOWING PART OF THE GRASS. ANYWAY THE REASON THEY ARE WORKING WITH ME IS BECAUSE MY FACILITY IS UP FOR SALE. (i MANAGE A STORAGE FACILITY) THEY CAN'T REALLY HIRE A NEW MANAGER KNOWING IT MAY SELL ANYTIME. I WISH IT WOULD....PLUS I HAVE A LITTLE SCHIZOPHRENIC BUDDY I HAVE TAKEN CARE OF FOR 8 YEARS NOW. HE HELPS DO THE HARD MANUAL LABOR PARTS NOW. SO BETWEEN US WE GET THE JOB DONE!

HOWEVER, MY DOCTOR HAS PUSHED ME TO START FILINGS FOR DISABILITY. AND I AM. FOR ONE THING SHE KNOWS EACH TIME I RETURN I AM LESS AND LESS. I HAVE A NEW PROBLEM OR AN OLD ONE HAS GOTTEN WORSE. SHE REALIZES I WON'T BE ABLE TO GO ON MUCH LONGER. BUT THE OTHER REASON IS SHE WANTS TO SEND ME TO A SPECIALIST...WHICH I CAN'T AFFORD WITH NO HEALTH INSURANCE. SO WHEN I GET ON DISABILITY i WOULD HAVE MEDICAID TO PAY THEN. BUT SHE MAINLY KNOWS THERE IS NOT MUCH HOPE. SO I HOPE THIS ANSWERS ANY QUESTIONS. OH YES.I FORGOT I DO HAVE A SISTER HERE THAT HEPS AND IS WILLING TO HELP WHATEVER IT COMES DOWN TO. IF I NEED TO I CAN MOVE OUT THERE. SHE IS HAPPY TO COME IN TOWN AND TAKE ME WHERE I NEED TO GO, DOCTORS, PHARMACY, GROCERY, WHATEVER I NEED. SO I AM BLEST. AND MY LITTLE BUDDY MARK HELPS ME SO I DO HAVE SOME HELP BUT I THANK YOU SO MUCH FOR CARING ENUF TO ASK. GOD BLESS YOU

AL

tld
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 11/26/2007 7:11 AM (GMT -7)   
Dear Exhausted,

Not sure if I will be of much help but I do remember in the pre-transplant days it had gotten to where I could only be up 5-7 min before I had to rest. ( I will never forget how helpless & overwhelmed that made me feel!)

I felt that the buildup of fluid had alot to do w/ the weakness. For awhile after I would have the fluid drained I would feel better for several days to week. Gradually that wasn't as effective but it did help for awhile. I have hep c which is what caused my liver problems but not sure if the cause makes much difference in the symptoms.

I'll keep you in my prayers!
tld

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/26/2007 6:37 PM (GMT -7)   
Bareback, I am sorry to here that you are doing so bad. I am glad to hear that you have help when you need it. You will be in my thoughts and prayers.

Exhausted, Welcome to the forum. I am sorry your husband has this terrible disease. I wish I had some answers for you. I am just learning myself. My husband goes throught periods of extreme exhaustion. You and your family will also be in my prayers.
Butterflythree
 
There is always hope!

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