another day in the life

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On_hold
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/13/2009 11:20 PM (GMT -7)   
I picked up my wife from the hospital today. She was admitted a week ago for encephalopathy and leaking fluid from a paracentesis that had been performed a few days prior to her admission. When she gets confused, like others she just wants to be left alone. If you persist in the pointless effort of trying to get her to go to the ER, she gets belligerent, mean - a different, almost primitive person. What to do? She leaves no choice but to call 911. This is the third time I've had to call. The firemen show up, the ambulance arrives, and off we go to the ER. Thankfully she always eventually allows the firemen/med-techs to get her on a gurney. It would be so much easier if she would cooperate with me and get in the car and go, but for her this is part of ESLD.

The ER staff is good, but today there are eight ambulances in the ER parking lot. I've never seen more than two or three. They are well familiar with ESLD and eventually around to her and get the blood tests, x-rays, and lactulose going. I know some of them now, since this is our third visit. Lab testing showed her ammonia was at 250. Not good. The paracentesis site is leaking so bad one nurse suggests putting an ostomy bag over the site. On the day of the paracentesis the doctors were reticent to perform the procedure because her labs show her clotting times were poor (INR 1.6 I think). Anyway, they did the procedure and removed over 4L. My wife is only 5' 2", and about 120 lbs, so that's fairly significant. The evening after the procedure she felt good, ate well, stayed up late. I was surprised at her energy level. Before the paracentesis they did a blood test to check her clotting, in retrospect I should have asked that they also run an ammonia level. I recall now she had muscle tremors, although she didn't seem particularly confused. The second morning after the paracentesis, I noticed her PJs were saturated because of the fluid leaking out. You would have thought that would have been enough for her to see that she needed to get to the hospital, but the confusion makes even the most obvious thing impossible to see.

After four or five hours in the ER a nurse puts in an IV. My wife who had been resting calmly in an almost comatose state starts reacting oddly, breathing quickly, hands clenching, body stiff. We get a doctor who calmly states, "Looks like she is seizing". Nobody said anything about ESLD and seizures! She gets wheeled to a more intensive care part of the ER and soon is intubated, given anti-seizure medication, sedatives, and after settling is sent off for a head CT scan. Luckily this doesn't show anything. A volunteer stops by. We discuss living with family with similar medical conditions, and how one eventually just gets used to dealing with it - at some point to maintain your own sanity, detachment becomes a survival mechanism.

Four or five more hours pass. There is nothing I can do to help in any way. A trip to the cafeteria. Walk around the block. The crossword in the paper is impossible, as is the sudoku. I manage the scramble. My wife post seizure is a breathing, living person, but she is not there. Finally a room is made available and she is transferred. The inefficiency of the hospital process can be amazing. She has been admitted to this hospital three times in three months, and each time I have to give her medical history over again. The same information I've given already in the ER. One day soon, hopefully the medical system will fix simple problems like this.

Two days pass and she is still unresponsive. I start to think she is not going to recover. On the third day she is conscious and able to eat a little, but is very weak. Fourth day I bring a fruit smoothie to supplement breakfast. At dinner time she is ravenous and eats well. Things are looking up. Fifth day it looks like we are going sideways. I speak with the case manager about home health care support. I meet with hospice. A few days back it looked like it was time for hospice, but now I think it is not. The hospice nurse is very good, but conducts herself in such a calming way, that I find it almost annoying. Sixth day we are going home. Driving home I start to realize how weak she is. She is obviously still confused to some degree. Walking from the car to the bedroom is done in stages. The physical therapist should have told me how weak she is. We should have a wheel chair, or at least a walker, and of course it is nearly 6PM on a Friday. I bring a chair outside. Three steps, sit down. My wife is on oxygen because of Hepatic Pulmonary Syndrome. Severe. She was on 6 liters per minute, but is now on 9LPM (but that is another story). A few steps is like climbing Everest. I realize I need another chair. We play slow motion leap frog moving from one chair to another. Into the house, down the hall, finally into the bedroom, where she collapses. I get her to take her meds and a little food.

It's now about five hours later and she is sleeping, and not too responsive. Is this just exhaustion or is this encephalopathy starting up again? It's hard to tell. Hopefully not. We'll see.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/14/2009 7:15 AM (GMT -7)   

Hello On_hold and welcome to HealingWell.  Sorry you had to come looking for us but am glad you found us.  The liver disease ride is no joke....... as you see. 

We have quite a few educational threads... please read over them. They can be very useful to people trying to found out some of the why's and what fors that go with this disease. 

Do they have your wife on antibiotics?  Probaby so with her having  had a paracentesis. 

My husband experienced siezures and even a minor stroke.  I believe it's because the blood gets too thin.  They gave him Keppra to stop the siezures .   And he starting have blood transfusions every so often when his blood count got too low. 

Encephalopathy does change a person's behavior. Even knowing that it wasn't really my husband.... that it was the disease it was hard to deal with so frequently.  I took a lot of walks to calm down.    I only had to call the ambulance once though but that was enough.  Along with the ambulance, I had about 3-4 sheriff cars in front of my house.   The 911 dispatcher asked me if he was violent and I had to tell her yes....but he didn't know what he was doing......he was sick.  But as soon as the paramedics started to talk with him .....he became very docile and went calmly with them.   (I had been dodging swings trying to get his shoes on and get him to the car.) 

Anyways hang in there......this forum was a God send to me when I was going down the road.......

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.


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 3/14/2009 10:00 AM (GMT -7)   
I wish I could express myself as well as you do, I have been going through this horrible disease with my husband for over a year and sometimes I feel so guilty for feeling "detached" but I just don't know him anymore.  This forum has saved my sanity, hang in there and know that there are many others out here going through this too.  Thoughts and prayers,
 
 
Judith

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/14/2009 10:22 AM (GMT -7)   

Welcome to the forum On-hold. 

 

I’m sorry you and your wife are going through this.  But I relate to so much of your story that I must say, this is no time to be passive.  I’m simply reading between the lines.  I’m going out on a limb here and I would like to apologize in advance if you think I’m completely off-base.  My heart goes out to you.  You sound hopeless.  You haven’t told us . . .

 

o        What liver disease your wife is suffering from

o        What age group she is in

o        Whether or not she is a transplant candidate

o        What her MELD score is

 

But based on what you’ve relayed and what you haven’t relayed, here is a little “tough love” . . .

 

Hospitals are notoriously understaffed.  You need to expect this when you arrive.  It is up to you and those who love your wife, to bring focus to her needs.  The only way to do this is to be there, or have someone with her, 24/7.  Have patience, but not to a point where your wife is uncomfortable.  Don’t dwell on how it should be, just work with what you have.

 

The Hospice representative is annoying to you because you don’t believe it is time to throw in the towel.  She is obviously assuming the worst and wants to help you through this difficult time.  Don’t hold it against her.  It’s a difficult job for her and she may feel you are in denial.

 

You need to trust your gut!  No one knows your wife better than you do.  If you think she will pull through this, then you must get in there and fight for her.  It’s time to pick yourself up and realize who’s the boss.  You pay the bills.  If your wife is in need of a wheelchair, call the case manager and insist on getting one!  Don’t be embarrassed.  Be the squeaky wheel.  She needs you to speak for her!  If you have issues with money, dial 211 for United Way.  They should be able to assist or direct you with medical equipment needs.

 

Vocalize what you have written to us.  The nurses understand because they are living it.  They don’t want to give your wife poor service; they were placed in a position where they cannot be in 10 places at a time.  Make friends with them when your wife is in the hospital.  Good nurses will prove to be your greatest allies.  Make it personal.  Let them feel how much you love you wife.  They will come to bat for you if you do this.

 

Did you know that your wife may be eligible to have her MELD score increased by a 10% mortality equivalent every 3 months for having Hepatic Pulmonary Syndrome (HPS)?  The hepatologist would know this and should be fighting for it.  If she is listed on a waiting list, ask if the transplant team requested this exception before the UNOS (United Network of Organ Sharing) board.  In the meantime, it is important to maintain her oxygen level at >90.  Also know that HPS can be reversible (if not too severe) with favorable survival following liver transplantation,

 

I hope I haven’t offended you.  I just want to reinforce your rights.  Get the facts, learn all you can about your wife’s disease, then use this information to fuel a fire under the doctor’s butts!

 

I will be thinking of you and hope you accept this information in the spirit it was given.  Good luck to you my friend. 

 

Sincerely,

 

Penny

 

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/14/2009 12:53 PM (GMT -7)   

On-Hold, welcome to the forum.  You are very articulate in stating what you and your wife are going through.  You will find people here who are going through the same thing, or have.  I agree with Penny:  You need to be an advocate for your wife.

After a seizure, the person goes into a post-ictal state.  That is what you describe as "living, breathing" but "not there."  The patient has no memory of the seizure or what went on during it.  They normally sleep for awhile after the seizure is over.

Weakness is part of the disease.  I am also interested in what type of liver disease your wife has and when she was diagnosed, as well as her age and whether she is a candidate for transplant.  This information helps us better understand what is going on.

You will find the educational threads very informative, and you will also find the people here to be very supportive and understanding.


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


On_hold
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/15/2009 1:41 AM (GMT -7)   
Today was both better and worse than expected. I'd say that is about par for the course. It was better in that my wife really just needed some rest. The hospital poking and prodding any time of day is truly draining. My wife related on a number of occasions where the night nursing staff is out at their station in the middle of the night talking loudly and laughing. I know how hard their job is, but you'd think they'd respect the needs of the patient for some quiet time.

She is so incredibly weak and is still slightly encephalopathic. Every move is a challenge and happens in slow motion. A 30 second trip to the bathroom is now a 10 minute exercise. I helped her with a shower today. She took the indignity of requiring help for bathroom and shower well. She has always been very private regarding the bathroom and bathing - I sometimes believe no one in her family has ever farted, and know from long experience she belongs to that special class of people that can only poop at home. :-) What this disease has done to her body is appalling. She is so thin. Her arms, where she was handled or where IVs were placed, are splotchy shades of red and purple. Healing just doesn't happen. She is gaunt. She was never large, but now her skin seems paper thin and hangs at the joints or looks wrinkled like crepe paper - that is where her belly, ankles and feet aren't swollen due to water retention. I told her today that any god that allows this to happen to one of "his children", is not a god I want any part of, but she shushed me. I can conceive of no reason why any person should have to go through this. I've never been religious and probably shouldn't even mention the subject, but there it is.

She is 54. We have been married 22 years and have one active and healthy 18-year old daughter (there is a long story involving pediatric liver transplantation there which I may share at some point). Prior to my daughter's birth my wife's doctor had noticed on annual blood tests that her liver enzyme test results (SGOT, SGPT, GGT) were slightly elevated. The ability to detect HCV was very new at the time, and even if detected early there were no treatments. We knew something was not right, but her health was good and stayed quite good for another 15 years or so. Eventually our primary care physician got a clue, made the HCV diagnosis, and referred us to a GI doctor associated with one of the three nearby transplant centers (UCSF, CPMC, Stanford). He followed her for some time before starting treatment with Ribavarin and PEG-Interferon. I guess this was back in 1998 or 1999 when it first became available. Unfortunately, my wife could not tolerate the combined treatment and the Ribavarin was dropped. We continued with the Interferon injections, in multiple courses over about three years. She suffered through that time like a trooper. The treatment is not pleasant. We would have to periodically stop the injections because her white blood cell count would drop too low. It became clear that she was a 'non-responder', and the Interferon was discontinued.

The source of her infection is unknown. She believes there are two likely sources. As a youth, she was hospitalized and received multiple transfusions (for what reason I do not recall). Prior to our marriage, she had also used cocaine (shared a straw or whatever they used to inhale it), like so many did in the early 1980's. So maybe it is one of those. She dreads needles, so I know that isn't a possibility. She is also, or was also, a smoker. Perhaps a pack a day 20 years ago, and for the last few years a very light smoker. She tried many ways to quit, but could not. Is that a contributing factor to the HPS? Earlier in her life she had been a bit of a drinker, getting a DUI once, spending a night at the county jail, and forced attendance at AA. Thankfully, she turned that around, and has been sober for years. She suffers from chronic back pain and has been on pain treatment of various sources, with increasingly potent medications, for many years. Currently she has a transdermal fentanyl patch which works well. Of course, this slows her bowels, and you know what that leads to.

The GI doc has clinic visits once a month in our area and he became concerned about her 02 saturation and prodded her to get a pulmonary function test and to come to their center for transplant evaluation. My wife was in complete denial and kept putting it off, "I'll go after our daughter's 18th birthday", etc. As it turned out she didn't get to make the choice. My daughter came home from school one day to find her Mom extremely confused. Something pushed her over the edge, a cold or dehydration, or constipation and her ammonia level spiked. Seeing your Mom (or wife) like this for the first time is scary (although as I think back I recall a precedent years ago). After talking to one of the GI doc's nurses they instructed me to call 911, and our first experience with HCV/ESLD in the ER started. That was December 10th, 2008. I'll try to relate the results of that hospitalization and the resulting transplant evaluation tomorrow, and answer some of the other questions that were asked.

Thank you for your comments, I appreciate them all. I read many of the posts in this forum about a month ago when looking for detailed, first person, experiences with ESLD. After this most recent hospitalization, I wanted to get more info, and had to dig through my browser's history to find the website again. It was worth the effort. Thank you all for being part of this forum.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/15/2009 11:37 AM (GMT -7)   

Hi, On-Hold.  Thanks for the personal info.  You seem to have an awesome memory.  That's a bonus.

It's most likely that your wife contracted HCV during the transfusions.  It's possible that it was transmitted during snorting coke, but the transfusions are more likely as they did not start screening for hep C until the early 90s.  Smoking cigarettes has not been implicated as a possible means of transmission.  It is a blood-borne disease.

I've had that happen, too, in the hospital where the nurses are loud and laughing at the nurses' station late at night.  They just forget that there are patients nearby who are trying to sleep.  Then the phlebotomists come around at 4 AM to draw blood!  smhair

Hang in there and continue to read and post.  You will find a lot of caregivers here who can relate to all you are experiencing.


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

Post Edited (hep93) : 3/16/2009 1:38:34 PM (GMT-6)


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 3/15/2009 8:09 PM (GMT -7)   

Dear On-Hold,

Thank you for sharing your experiences so articulately.   I believe it helps to explain what we're going through.  It also helps others to realize that feeling "on hold" or just tired of the sadness of this disease is very human.   I have been coming back to this forum for about a year now.   Many times it has helped to put the "wind back in my sails."  

Joan 


Best friend is in ESLD, has HepC and cirrhosis. 


On_hold
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/16/2009 12:06 AM (GMT -7)   
(I had a post almost ready to submit regarding my wife's transplant evaluation and HPS, and then my browser died... mad I'll try again tomorrow.)

Today was mostly good, my wife's strength and appetite seems to be improving. Tomorrow we meet with medical home health care. We'll see how that goes.

I thought it was more than enough to have to takeover the house cleaning, shopping, cooking, laundry, etc on top of the usual work responsibilities, but adding caregiver to that list is clearly impossible, so we need to find some 'private hire caregivers'. My work is flexible, and I can do some work-at-home, but I do need to be at work at least half of the time (need to keep that insurance), also my daughter needs to be in school, and we have no local relatives that are healthy enough, or young enough to help out. The hospice nurse gave me some info - time to make some phone calls.

hep93 - I didn't mean to imply that smoking was a cause, I should have worded that better. Just mentioned it as part of the total picture - it may not have anything to do with HPS itself, but it doesn't help overall lung function.

More tomorrow, need to get to sleep as my daughter has a "zero hour class" tomorrow.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/16/2009 12:41 PM (GMT -7)   
Smoking also weakens the immune system.  I quit over 6 years ago, thank goodness, and notice that I have colds much less often.  Also, I used to get bronchitis every winter, but haven't had it once since stopping smoking.  smilewinkgrin
 
Good luck with getting some help with caregiving.  When I was in the hospital and after numerous surgeries, I had to hire someone to clean, do laundry and shopping for me for many months.  I still have someone come and clean once a month and another to take me on errands and a big shopping trip about once a month.


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

Post Edited (hep93) : 3/16/2009 1:44:36 PM (GMT-6)


BigToe
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 3/17/2009 5:57 AM (GMT -7)   
Welcome to the forum :-)
I had to re-read your posts a couple of times because you are describing what I have been seeing over the last few weeks.
I know that your detailed descriptions will be extremely helpful to all those people that 'fall upon' this forum in the future.
Thanks for your contribution, and best wishes to you and your wife.
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