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Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 1/20/2007 1:40 AM (GMT -7)   
Hi Friends,
 
We are a few short weeks away from the third anniversary of my husbands diagnosis of esophageal cancer and it's almost four years since being diagnosed with end stage liver disease. Because of the liver failure, Gene was not a candidate for surgery, chemo or radiation. He was given a few months to live and sent home to die. But it was not his time.
 
We opted for hospice care because the medical profession had nothing to offer. We live under the guillitine knowing Gene can bottom out at any time from a long list of liver/cancer related complications.
 
Here we are back to exactly where we started six months ago with hospice. We are hearing extended prognosis and discharge for Gene for the second time. What a laugh.
 
My Gene has two timebombs in his body; two terminal conditions for which his doctor's have prepared us to expect him to bottom out at any time. But this isn't enough to remain with hospice care it seems. Why, because Gene's bloodpressure is still stable and he hasn't lost 30% of his body weight.
 
Excuse me, his face is drawn and thin as are parts of the body that aren't affected by the ascites and edema. It doesn't take a rocket scientist to know it's fluid retention not muscle and fat.
Since I last posted about Gene he has had multiple worriesome situations including a probable heart attack/blood clot, aspiration/choking because the cancerous tumor in his esophagus is growing and making swallowing difficult, a month of sleeping around the clock and a near coma after having a flu shot.
 
During the past several months I have watched my beloved Gene near the edge of the clilff and pull back just in time again and again. We seem to set new standards for normalcy weekly because of his declining energy and level of functioning. The one part of him that has not deteriorated has been his cognitive abilities which is miraculous with end stage liver disease. But then my dear one was not nicknamed Miracle Boy for nothing.
 
Gene wants to fight hospice on this latest development. I'm attending a team meeting next Tuesday where they had hoped to rubber stamp his discharge. They are in for a big surprise. We may go down with the Titanic but not before putting up a good fight.
 
We could sure use your positive thoughts and prayers. I know I am losing the love of my life. I know the cancer is growing inside him and once it spreads it will go like wildfire through him. And as soon as mets gets to his liver he will experience liver failure and sudden death. His death will also be hastened when he requires strong pain medication which his fragile liver cannot process. Esophageal cancer and cirrhosis are two terrible diseases by themselves. Combine them together and the outcome is not pretty.
 
Thanks for caring; it's the support of everyone out there that has kept me going.
 
Barb
                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/20/2007 9:32 AM (GMT -7)   
hi barb, i didnt know your husband had double trouble, it amazes me what the human body can take and of course there is medical science that keeps us alive. gene really has the will to live, or he just isnt ready to leave you yet there something he has do do yet like deal with hospice. im having a hard time with why they would want to discharge him, a person couldnt be any sicker than he is, you and gene need all the help you both can get from hospice.
its not bad enough that you have a loved one that you are ready to lose but then you have to fight on top of everything else, just makes it more stressfull for everybody, and he is fighting just to stay alive everyday.
what makes me so angry is medical science can keep us alive for just so long, its like were not even living were just there. somewhere there has to be a cure.
just call me crazy. i wish i would have found this forum when i was going crazy with my father being sick, it would have help a lot. my poor father didnt stand a chance because of this age, oh you have cirrhosis but your to old and you have lived your life so no transplant for you, but we would like to experiment on you and thats all some drs want to do. about 4 days before my father passed they had to but a screen in this stomach to keep the blood clots from getting to his heart, my father told me that he didnt want anything else done i said ok. the rest is history. now im dealing with the fact i have no mother or father, i have my son and husband but its just not the same you just feel so alone, i cant imagine it being my husband.
you and gene go to that meeting tuesday and give them heck or what ever you have to give, im sure hospice will see it your way.
you have my positive thoughts and a whole lot of prayers going on.
i wish you the very best of luck, tell gene hang in.
barb if you need to talk email me i have a cell phone with a lot of minutes
left, take care of your self to.

myfathers child
annette
my thoughts are with you.

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 1/20/2007 3:36 PM (GMT -7)   
Oh Barb,,what a disappointment Hospice is being! I know that they have certain standards before they step in to help,but they should also recognize that there are situations that do NOT fall into their "categories",,,Gene is only stable because of the grace of God,not because medically he doesnt need Hospice,as do you. I will be there fighting with you in spirit Barb, as will all of us.. many prayers will be said for you to win this battle.



'
trish 
Moderator for Hepatitis Forum 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 1/24/2007 7:07 PM (GMT -7)   
 
Dear Friends,
 
The last week has been Hell but we won this round with Hospice. After all their threats to discharge Gene, the team came over this afternoon and said Gene was medically appropriate to remain in hospice and was not at risk for discharge. It's such a shame anyone has to convince the system they are terminal and medical science has nothing more to offer.
 
Thank you all for your kind words, positive thoughts and prayers. Someone listened.
 
Barb

                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/25/2007 10:23 AM (GMT -7)   
hi barb, im so glad you won this one. it is a shame that you would have to convince anyone that gene is terminal. i still think medical science has more to offer, but there just not letting the cat out of the bag, we can put a man on the moon back in 1969 but we cant cure cancer yet, we can just try to kill some of the cancer cells. like i said call me crazy.

you and gene are in my thoughts

annette

Dlv
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/31/2007 2:57 AM (GMT -7)   
It's nearly 4 am for me, my Mom was up most of the night with my Dad and I finally got her to go to bed. He goes from bed to chair and back again all night long. He is so thin and weak, but not sure he would qualify for hospice with the 30% rule. I can't even get his dr to agree to put him hospital, but not really sure that's the best place anyway. He has eaten a little bit tonight, so mabe he'll rebound a little bit. I feel for you fighting a medical system that we all hold in such high esteem but seems to not care at all. I'm glad I found this site, it's a good place to go to give support and to get support. My thoughts and prayers are with you.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2007 4:36 PM (GMT -7)   
Barb, thank God you have a reprieve with Hospice!

I will find out on Fri. what my options are now with the cancer remaining in my liver

Hugs and God Bless,
Connie.

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 2/1/2007 1:04 AM (GMT -7)   
Barb, Your prayers have been answered. What a pain these beauocrats are!!

My prayers are with you.
Marg
 

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