Update on us...

peaceandlovejojo · 05-08-2010, 12:19 AM

Well, for those of you who remember several weeks back I posted some
stuff about my husband, and his health. I wish I had happy news for you all, but I don't.
Yesterday we returned home from our eighth hospitalization (since 1/25). His condition(s) have gone from being non-exsistant, to near fatal.
Since starting hemodialysis in march, he has had several complications
from that. Symptoms of congestive heart failure, and was recently told that due to the weakend malfunctioning area of his heart, he has blood clots that collect in the part the heart that is supposed to pump the blood out. If that clot were to move, for instance to the
brain, well he would stroke out.
Really I guess my point here is, life really fucking keeps screwing us.. I'm am at the most absolutely hardest time in my life. Why so many tests
huh?

My husband is refusing to go back to the hospital again. But he says he wants to live. Problem is he is so goddamned sick being poked with needles, his veins
completly blown, and he is just tired of being tested and fucked with.

Doctor's have thrown the word hospice
at us, "just an option"'they say.

I am hanging on.... By a thread. I keep
hearing the family say how strong I am. I don't feel strong...

Captain Cannabis · 05-08-2010, 12:39 AM

My thoughts are with you both. I know that it is hard when you interact with doctors more than friends, but you have to focus all your energy on this. Life is a strange amazing gift and positive energy can and does affect treatment. You have no choice but to be strong and the reason you feel weak is because there is no time to rest.

peaceandlovejojo · 05-08-2010, 12:57 AM

Rest...

You are so right about that. I average 2-3 hours of sleep. When I do get a
little time to sleep, I am an insomniac.
Our family is filled with love and support, we are blessed in that way.

Prophet Saddam · 05-08-2010, 08:00 AM

Thanks for the update. I'll be keeping you both in my thoughts and prayers.

~1~ · 05-08-2010, 10:02 AM

Quote:

Originally Posted by peaceandlovejojo

Our family is filled with love and support, we are blessed in that way.

Your entire family.

All of us are sending the good vibes to you and BF.

Stay strong my dear, you are loved...

verklingen · 05-08-2010, 12:23 PM

our hopes and prayers are with you all, jojo

Waves · 05-08-2010, 01:12 PM

Quote:

Originally Posted by peaceandlovejojo

I am hanging on.... By a thread. I keep
hearing the family say how strong I am. I don't feel strong...

Sometimes a thread is all you need to stay hoisted above the ground

Keep strong, positive vibes for your husband wherever he ends up!

peaceandlovejojo · 05-08-2010, 01:41 PM

Thanks guys... We go day by day around here, never know what's gonna happen. Is always just a matter of time before
next ER visit. 8 times, 3
different hospitals, number 9 will be me
driving him over to UCSF, or if a 911, his mom has a
private ambulance lined up.. NO MORE KAISER HOSPITALS!

05-08-2010, 05:56 PM

Keeping you in my thoughts and prayers too.

PhishDude · 05-08-2010, 11:26 PM

I'm keeping both of you in my thoughts and prayers.

myxomatosis · 05-08-2010, 11:35 PM

Goddamn. A rough time indeed. All the best to the both of you and all involved.

peaceandlovejojo · 05-08-2010, 11:58 PM

Heading over to UCSF hospital now. He has been puking for 6 hours non stop. Finally talked him into going....

Please wish us luck. Everytime we go, I'm afraid I'll be coming home alone..
I'm so close to losing it..

hijabihippie · 05-09-2010, 09:45 AM

All right folks, let's put the prayer machine into low for a long, hard pull.

dawnsayz · 05-09-2010, 09:51 AM

my thoughts and prayers will be with all that are involved with all of this. Bless both of you and your family.

José · 05-09-2010, 10:59 AM

Quote:

Originally Posted by Captain Cannabis

My thoughts are with you both. I know that it is hard when you interact with doctors more than friends, but you have to focus all your energy on this. Life is a strange amazing gift and positive energy can and does affect treatment. You have no choice but to be strong and the reason you feel weak is because there is no time to rest.

It's true, the will to live is a greater power than any modern health care.

I know people who have battled cancer with 0 white blood cells. I wish only the best to you guys.

peaceandlovejojo · 05-09-2010, 01:27 PM

Hey just wanted to give another quick update. We are here at the university of San Francisco hospital, one of the top teaching hospital in the
country. If anyone can help my love, they can. He already has a team of five doctors tending to him. He will be having a CT scan of his belly this afternoon, to try to
figure out why the hell he won't hold food/water down. Bringing him here is our last hope at trying to keep him from starving to death.

He is being such a trooper, doing all of this, just so him and I
can have some more years together.
If they can't figure out a way for him to eat, he will end up on comfort care..
I'm not ready to be
a widow..
Keep all the good vibes coming our way, WE NEED THEM ALL!
As far as my sanity goes, I haven't slept in 3 days, my emotions are fried. LOVE keeps me
going.. And hope..

hijabihippie · 05-10-2010, 05:50 AM

May God's peace surround you both,
May God's love sustain you both,
May God's strength uphold you both.

Amen.

Peace seeker · 05-10-2010, 10:54 PM

my thoughts will be with you both, for as long as it takes

peaceandlovejojo · 05-15-2010, 03:45 PM

Well here goes...

Not much progress has been made, except we have yet another diagnosis, and are in a different hospital. A week ago we made the trek to UCSF medical center, and spend about 3 days there. Due to the battle of insurance company (refused to pay for UCSF) we are now back at a kaiser hospital in San Fransisco.
My husband continues to decline, and has began to have what I am calling not panic attacks, but attacks of pure terror. They are getting to the point where he is unable to give blood for tests he so desperatly needs. His veins are so completly fucked. The type of dialysis he did for six years, caused his stomach to be riddled with scar tissue, which has in turn bound up his stomach and part of intestines. Basically, he cant keep food/water down. They attempted to insert a feeding tube thru his nose and down to small intestine, but he paniced at the last moment and refused it..
This was pretty much his last hope at returning his body to a healthy nutritional status. He is starving to death. I told the doctors if they knock him out first, he will have the tube, so we will try again on monday morning.
But in all honesty, I dont know if he wants to go on, I think he is afraid to tell me so. He is in constant suffering, so I have been pushing for them to prescribe anything they can to keep him comfy. So far they have only given him oxycodone and xanax, not nearly what he needs, is not helping.

I am so frustrated, sad, hopeless, angry and most of all fucking frightened out of my mind...

The doctors have suggested pallative care, aka comfort care at home.
I honestly dont know what Im going to do without him. Pretty much I feel like my whole world is and has fallen apart... I quit my job, lost my health insurance, and was denied unemployment...

I hate life right now. It's so vicious and cruel. When will something good happen? Anyway, thanks for keeping up..

The Rev · 05-15-2010, 10:14 PM

The Rev

05-08-2010, 12:19 AM	#1 (permalink)
peaceandlovejojo Mrs. BUDFORCE :) Join Date: Mar 2003 Location: In my own little world Posts: 641 Thanks: 5 Thanked 99 Times in 37 Posts	Update on us... Well, for those of you who remember several weeks back I posted some stuff about my husband, and his health. I wish I had happy news for you all, but I don't. Yesterday we returned home from our eighth hospitalization (since 1/25). His condition(s) have gone from being non-exsistant, to near fatal. Since starting hemodialysis in march, he has had several complications from that. Symptoms of congestive heart failure, and was recently told that due to the weakend malfunctioning area of his heart, he has blood clots that collect in the part the heart that is supposed to pump the blood out. If that clot were to move, for instance to the brain, well he would stroke out. Really I guess my point here is, life really fucking keeps screwing us.. I'm am at the most absolutely hardest time in my life. Why so many tests huh? My husband is refusing to go back to the hospital again. But he says he wants to live. Problem is he is so goddamned sick being poked with needles, his veins completly blown, and he is just tired of being tested and fucked with. Doctor's have thrown the word hospice at us, "just an option"'they say. I am hanging on.... By a thread. I keep hearing the family say how strong I am. I don't feel strong... __________________

05-08-2010, 12:39 AM	#2 (permalink)
Captain Cannabis safety word: more Join Date: Jul 2001 Location: m.i.a. Posts: 13,922 Thanks: 2,705 Thanked 3,174 Times in 1,812 Posts	My thoughts are with you both. I know that it is hard when you interact with doctors more than friends, but you have to focus all your energy on this. Life is a strange amazing gift and positive energy can and does affect treatment. You have no choice but to be strong and the reason you feel weak is because there is no time to rest. __________________ fuck the monkeys

05-08-2010, 12:57 AM	#3 (permalink)
peaceandlovejojo Mrs. BUDFORCE :) Join Date: Mar 2003 Location: In my own little world Posts: 641 Thanks: 5 Thanked 99 Times in 37 Posts	Rest... You are so right about that. I average 2-3 hours of sleep. When I do get a little time to sleep, I am an insomniac. Our family is filled with love and support, we are blessed in that way. __________________

05-08-2010, 12:23 PM	#6 (permalink)
verklingen Radical Dreamer Join Date: Feb 2006 Location: texas Posts: 8,005 Thanks: 811 Thanked 1,491 Times in 946 Posts	our hopes and prayers are with you all, jojo __________________ “Be kind, for everyone you meet is fighting a hard battle.” rip matt

05-08-2010, 01:41 PM	#8 (permalink)
peaceandlovejojo Mrs. BUDFORCE :) Join Date: Mar 2003 Location: In my own little world Posts: 641 Thanks: 5 Thanked 99 Times in 37 Posts	Thanks guys... We go day by day around here, never know what's gonna happen. Is always just a matter of time before next ER visit. 8 times, 3 different hospitals, number 9 will be me driving him over to UCSF, or if a 911, his mom has a private ambulance lined up.. NO MORE KAISER HOSPITALS! __________________

05-08-2010, 08:00 AM	#4 (permalink)
Prophet Saddam YaHookan 2011 Winner Join Date: Jul 2002 Location: CA, fuck yeah Posts: 16,345 Blog Entries: 11 Thanks: 3,702 Thanked 719 Times in 482 Posts	Thanks for the update. I'll be keeping you both in my thoughts and prayers.

05-08-2010, 05:56 PM	#9 (permalink)
turmaline Guest Posts: n/a	Keeping you in my thoughts and prayers too.

05-08-2010, 11:26 PM	#10 (permalink)
PhishDude Telepathic Jackal Join Date: Sep 1999 Location: Mars Posts: 3,985 Thanks: 0 Thanked 23 Times in 20 Posts	I'm keeping both of you in my thoughts and prayers. __________________ Do not believe in anything simply because it is found written in your religious books. Do not believe anything merely on the authority of your teachers and elders. Do not believe in traditions because they have been handed down for generations. But after observation and analysis, when you find that anything agrees with reason and is conducive to the good and benefit of one and all, then accept it and live up to it. -- Buddha

05-08-2010, 11:35 PM	#11 (permalink)
myxomatosis life is music Join Date: Jun 2004 Location: between a pair of headphones Posts: 3,917 Thanks: 1,026 Thanked 933 Times in 597 Posts	Goddamn. A rough time indeed. All the best to the both of you and all involved. __________________ oh sometimes the blues is just a passing bird and why can't that always be tossing aside from your birches crown just enough dark to see how you're the light over me last.fm blog deal (updated 12/22/11)

05-08-2010, 11:58 PM	#12 (permalink)
peaceandlovejojo Mrs. BUDFORCE :) Join Date: Mar 2003 Location: In my own little world Posts: 641 Thanks: 5 Thanked 99 Times in 37 Posts	Heading over to UCSF hospital now. He has been puking for 6 hours non stop. Finally talked him into going.... Please wish us luck. Everytime we go, I'm afraid I'll be coming home alone.. I'm so close to losing it.. __________________

05-09-2010, 09:45 AM	#13 (permalink)
hijabihippie YaHookan Join Date: Jun 2009 Posts: 1,481 Thanks: 1,152 Thanked 655 Times in 515 Posts	All right folks, let's put the prayer machine into low for a long, hard pull.

05-09-2010, 09:51 AM	#14 (permalink)
dawnsayz YaHookan Join Date: May 2010 Location: SLC, UT Posts: 3 Thanks: 0 Thanked 0 Times in 0 Posts	my thoughts and prayers will be with all that are involved with all of this. Bless both of you and your family.

05-09-2010, 01:27 PM	#16 (permalink)
peaceandlovejojo Mrs. BUDFORCE :) Join Date: Mar 2003 Location: In my own little world Posts: 641 Thanks: 5 Thanked 99 Times in 37 Posts	Hey just wanted to give another quick update. We are here at the university of San Francisco hospital, one of the top teaching hospital in the country. If anyone can help my love, they can. He already has a team of five doctors tending to him. He will be having a CT scan of his belly this afternoon, to try to figure out why the hell he won't hold food/water down. Bringing him here is our last hope at trying to keep him from starving to death. He is being such a trooper, doing all of this, just so him and I can have some more years together. If they can't figure out a way for him to eat, he will end up on comfort care.. I'm not ready to be a widow.. Keep all the good vibes coming our way, WE NEED THEM ALL! As far as my sanity goes, I haven't slept in 3 days, my emotions are fried. LOVE keeps me going.. And hope.. __________________

05-10-2010, 05:50 AM	#17 (permalink)
hijabihippie YaHookan Join Date: Jun 2009 Posts: 1,481 Thanks: 1,152 Thanked 655 Times in 515 Posts	May God's peace surround you both, May God's love sustain you both, May God's strength uphold you both. Amen. Last edited by hijabihippie; 05-16-2010 at 07:55 AM.

05-10-2010, 10:54 PM	#18 (permalink)
Peace seeker free the herb Join Date: Nov 2003 Posts: 6,844 Thanks: 773 Thanked 551 Times in 385 Posts	my thoughts will be with you both, for as long as it takes

05-15-2010, 10:14 PM	#20 (permalink)
The Rev Clear Light Join Date: Oct 2002 Location: In my head, somewhere. Posts: 17,864 Thanks: 5,015 Thanked 5,419 Times in 2,864 Posts	The Rev __________________ Budforce - My Friend August 29, 1973- May 25, 2012

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05-15-2010, 03:45 PM	#19 (permalink)
peaceandlovejojo Mrs. BUDFORCE :) Join Date: Mar 2003 Location: In my own little world Posts: 641 Thanks: 5 Thanked 99 Times in 37 Posts	new update... Well here goes... Not much progress has been made, except we have yet another diagnosis, and are in a different hospital. A week ago we made the trek to UCSF medical center, and spend about 3 days there. Due to the battle of insurance company (refused to pay for UCSF) we are now back at a kaiser hospital in San Fransisco. My husband continues to decline, and has began to have what I am calling not panic attacks, but attacks of pure terror. They are getting to the point where he is unable to give blood for tests he so desperatly needs. His veins are so completly fucked. The type of dialysis he did for six years, caused his stomach to be riddled with scar tissue, which has in turn bound up his stomach and part of intestines. Basically, he cant keep food/water down. They attempted to insert a feeding tube thru his nose and down to small intestine, but he paniced at the last moment and refused it.. This was pretty much his last hope at returning his body to a healthy nutritional status. He is starving to death. I told the doctors if they knock him out first, he will have the tube, so we will try again on monday morning. But in all honesty, I dont know if he wants to go on, I think he is afraid to tell me so. He is in constant suffering, so I have been pushing for them to prescribe anything they can to keep him comfy. So far they have only given him oxycodone and xanax, not nearly what he needs, is not helping. I am so frustrated, sad, hopeless, angry and most of all fucking frightened out of my mind... The doctors have suggested pallative care, aka comfort care at home. I honestly dont know what Im going to do without him. Pretty much I feel like my whole world is and has fallen apart... I quit my job, lost my health insurance, and was denied unemployment... I hate life right now. It's so vicious and cruel. When will something good happen? Anyway, thanks for keeping up.. __________________