meeting with docs today
So I will be returning to MT after the meeting to take kids home and get anything in order, scrub down the house and figure out a ramp of sorts for him to get in and out of the rv (our home as we were prepping to fulltime RV when he initially was dx and ended up being a Godsend to help me keep finances down) so he won't have to try and go up steps. I guess also see if these doctors will help get the ball rolling for social security while he is here. We tried in the past but the dr kept saying he wouldn't be out of work for more than a year and a day and that was 1 1/2 yrs ago and still kept insisting he should be better to be able to cope and work. Now I think there should be no problem and I have 3 kids to think about and he may not live to see it start rolling in but at least we get it going while he is with us. I know the days/weeks ahead are going to be very difficult and where I don't want to have any doubt he is going to pull thru this I also have to be realistic for the kids and my own self that the remaining liver just isn't showing signs of being viable. I know he is going to say they are wrong and maybe it is his spirit that will help keep him going. I would love to see it kick his liver into gear wonder if that is possible. But Weds morning we are 2 weeks out and no signs only steady signs of it not.
We are going to need a ton of prayers for ease of pain and guidance for the kids thanks.
Renee
Comments
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Dear Renee
I am so very sorry to hear that things have not turned around for your husband.
I know you are facing lots of challenges now and hope that we here can be of some help to you, even from a distance.
Here is the web site for applying on-line for social security disability:
http://www.socialsecurity.gov/applyfordisability/
Once you get it for Carl, don't forget to apply for benifits for your children.
Prayers for you and your family as you work through the details and hope that Carl will be well enough to still have time to bask in the love you all have for him.
Hugs,
Marie who loves kitties0 -
Renee,
You, nor his doctors should be throwing in the towel just yet! My wife was in a very similar situation last January after her Isolated Liver Perfusion. Her liver essentially shut down for a few weeks, and her bili was about as high as Carl's. I'm not going to lie to you, but this is a very critical time for him. This is when the experience of his surgical team is going to make or break the situation. I'm assuming they've been giving him FFP, blood, etc. You have to look at more than the bili number because it is the last number to stabilize and start its way back to normal. The most important numbers to show how his liver is functioning are his liver numbers: ALT, AST, INR, PT/PTT, H&H, etc. if those numbers have started to stabilize, or are still elevating but at a decreased rate then hope is not lost. Even if they haven't, his liver may just need a bit more time to recover, and it's important for them to continue supporting his liver with fluids.
My hope is you are at a major teaching facility, rather than a smaller hospital.
Stay strong and keep after his doctors to support his liver properly.
Best of luck,
-Joe0 -
Renee, NJC's post sounds like there is some hope. I just want you to know I have been praying for you and your family everyday. Keeping you in the light.NJC said:Renee,
You, nor his doctors should be throwing in the towel just yet! My wife was in a very similar situation last January after her Isolated Liver Perfusion. Her liver essentially shut down for a few weeks, and her bili was about as high as Carl's. I'm not going to lie to you, but this is a very critical time for him. This is when the experience of his surgical team is going to make or break the situation. I'm assuming they've been giving him FFP, blood, etc. You have to look at more than the bili number because it is the last number to stabilize and start its way back to normal. The most important numbers to show how his liver is functioning are his liver numbers: ALT, AST, INR, PT/PTT, H&H, etc. if those numbers have started to stabilize, or are still elevating but at a decreased rate then hope is not lost. Even if they haven't, his liver may just need a bit more time to recover, and it's important for them to continue supporting his liver with fluids.
My hope is you are at a major teaching facility, rather than a smaller hospital.
Stay strong and keep after his doctors to support his liver properly.
Best of luck,
-Joe
Laura0 -
THANK YOUNJC said:Renee,
You, nor his doctors should be throwing in the towel just yet! My wife was in a very similar situation last January after her Isolated Liver Perfusion. Her liver essentially shut down for a few weeks, and her bili was about as high as Carl's. I'm not going to lie to you, but this is a very critical time for him. This is when the experience of his surgical team is going to make or break the situation. I'm assuming they've been giving him FFP, blood, etc. You have to look at more than the bili number because it is the last number to stabilize and start its way back to normal. The most important numbers to show how his liver is functioning are his liver numbers: ALT, AST, INR, PT/PTT, H&H, etc. if those numbers have started to stabilize, or are still elevating but at a decreased rate then hope is not lost. Even if they haven't, his liver may just need a bit more time to recover, and it's important for them to continue supporting his liver with fluids.
My hope is you are at a major teaching facility, rather than a smaller hospital.
Stay strong and keep after his doctors to support his liver properly.
Best of luck,
-Joe
for giving information and a bit of hope. I am not throwing in the towel yet and I realize his liver just went thru hell. I have been watching all numbers.
PTT before surgery 28.2 today 50.3 (this number has varied based on if they take from picc or direct from vein and that depends on if they can get it from vein)
PT before surgery 13.5 today 18
INR before 1 today 1.5 seems to bounce back and forth between 1.5-1.6
AST before 45 Today 105
Albumin before 3.8 today 2.1
Bili today is 29.1
red blood cell counts keep going down I am not real sure what ALT and AST and H&H stand for once I learn those I can better watch.
Renee0 -
Hang there Renee.Carl_Renee said:THANK YOU
for giving information and a bit of hope. I am not throwing in the towel yet and I realize his liver just went thru hell. I have been watching all numbers.
PTT before surgery 28.2 today 50.3 (this number has varied based on if they take from picc or direct from vein and that depends on if they can get it from vein)
PT before surgery 13.5 today 18
INR before 1 today 1.5 seems to bounce back and forth between 1.5-1.6
AST before 45 Today 105
Albumin before 3.8 today 2.1
Bili today is 29.1
red blood cell counts keep going down I am not real sure what ALT and AST and H&H stand for once I learn those I can better watch.
Renee
Praying for you both.0 -
He's doing ok. The only realCarl_Renee said:THANK YOU
for giving information and a bit of hope. I am not throwing in the towel yet and I realize his liver just went thru hell. I have been watching all numbers.
PTT before surgery 28.2 today 50.3 (this number has varied based on if they take from picc or direct from vein and that depends on if they can get it from vein)
PT before surgery 13.5 today 18
INR before 1 today 1.5 seems to bounce back and forth between 1.5-1.6
AST before 45 Today 105
Albumin before 3.8 today 2.1
Bili today is 29.1
red blood cell counts keep going down I am not real sure what ALT and AST and H&H stand for once I learn those I can better watch.
Renee
He's doing ok. The only real number severly out of whack is his bili which can be caused by a bunch of things, such as inflammation, slower than normal bili excretion from the liver into the intestines, etc. However, with the AST only being slightly elevated I can't see inflammation being a major contributor of his bili still climbing. However, the AlkPhos number would give a good indication of the liver's ability to excrete bilirubin. His Albumin is decreasing because I'm sure he's been soley on fluids, and his INR is only slightly elevated. You can't just look at one number and say, "OMG!" You have to take a look at all of his numbers and have a pretty good understaning as to what they mean and how they relate. I am not a MD, however, I was in the process of trying to go to MED School prior to my wife getting sick. So, I delved into my Med School Systemic Pathology book and read, and read, and read, and was able to apply my background to help keep track of my wife's care.
My wife's AST and ALT were near 2,000. Her INR - ability to clot - was in the high 3's. Her bilirubin peaked around 29 and her blood counts (hemoglobin and hematocrit (HH))I don't recall exactly, but they were concerning. As long as he is managed properly he should come out of it ok. The problem now is trying to manage him while walking that fine line. They have to let his liver try to recover, but they can't keep pumping him full of fluids because of potential kidney and respiratory issues that may arise for doing so. I'd ask the Critical Care doctor to hang some Albumin. They may not want to but you can certainly ask. It may help with his blood pressure, as I'm sure it's been low, thus the fainting spells. However, it's another fluid but I'd certainly ask. All they can say is, "No."
It's going to be a bit longer but I think he's going to be ok! Also, another number to look at are his platelet counts. I'm sure they're low but again, if he's being managed properly and his body can continue to fight he'll be ok.
Best,
-Joe0 -
SSD
Just wanted to let you know that the application process is pretty simple, and if you have metastatic disease, you go the head of the line, so to speak. I applied for it last August and was approved by early November. They did both a monthly payment and a year's worth of back pay, so it helped quite a bit. Sending strength and hope your way-Ann0 -
more tests possible another surgeryNJC said:He's doing ok. The only real
He's doing ok. The only real number severly out of whack is his bili which can be caused by a bunch of things, such as inflammation, slower than normal bili excretion from the liver into the intestines, etc. However, with the AST only being slightly elevated I can't see inflammation being a major contributor of his bili still climbing. However, the AlkPhos number would give a good indication of the liver's ability to excrete bilirubin. His Albumin is decreasing because I'm sure he's been soley on fluids, and his INR is only slightly elevated. You can't just look at one number and say, "OMG!" You have to take a look at all of his numbers and have a pretty good understaning as to what they mean and how they relate. I am not a MD, however, I was in the process of trying to go to MED School prior to my wife getting sick. So, I delved into my Med School Systemic Pathology book and read, and read, and read, and was able to apply my background to help keep track of my wife's care.
My wife's AST and ALT were near 2,000. Her INR - ability to clot - was in the high 3's. Her bilirubin peaked around 29 and her blood counts (hemoglobin and hematocrit (HH))I don't recall exactly, but they were concerning. As long as he is managed properly he should come out of it ok. The problem now is trying to manage him while walking that fine line. They have to let his liver try to recover, but they can't keep pumping him full of fluids because of potential kidney and respiratory issues that may arise for doing so. I'd ask the Critical Care doctor to hang some Albumin. They may not want to but you can certainly ask. It may help with his blood pressure, as I'm sure it's been low, thus the fainting spells. However, it's another fluid but I'd certainly ask. All they can say is, "No."
It's going to be a bit longer but I think he's going to be ok! Also, another number to look at are his platelet counts. I'm sure they're low but again, if he's being managed properly and his body can continue to fight he'll be ok.
Best,
-Joe
Today is worse bili is up to 31.4, but more importantly the dr. said right now is last night he started a rapid heartbeat so doing an EKG today, Albumin is down again as is his hemoglobin, Hematocrit is up, RBC down, WBC up. His stools have become dark indicating possible internal bleeding so scoping and possible another surgery on the horizon for him. So I may be on my way back to Denver. I finally came home Monday night. Also sounds like instead of just plasma they will be doing blood transfusion today.
Renee
PS thanks everyone for the prayers. Need them for his healing, my strength and the dr.s eyes/hands in his care. BTW yes I think someone mentioned hoping he is in a bigger hospital he is at a University rather than our smaller hospital. Which is bigger than what he started out at but not big enough for this case.0 -
Hang in there...!Carl_Renee said:more tests possible another surgery
Today is worse bili is up to 31.4, but more importantly the dr. said right now is last night he started a rapid heartbeat so doing an EKG today, Albumin is down again as is his hemoglobin, Hematocrit is up, RBC down, WBC up. His stools have become dark indicating possible internal bleeding so scoping and possible another surgery on the horizon for him. So I may be on my way back to Denver. I finally came home Monday night. Also sounds like instead of just plasma they will be doing blood transfusion today.
Renee
PS thanks everyone for the prayers. Need them for his healing, my strength and the dr.s eyes/hands in his care. BTW yes I think someone mentioned hoping he is in a bigger hospital he is at a University rather than our smaller hospital. Which is bigger than what he started out at but not big enough for this case.
Hang in there...!0 -
good to knowannalexandria said:SSD
Just wanted to let you know that the application process is pretty simple, and if you have metastatic disease, you go the head of the line, so to speak. I applied for it last August and was approved by early November. They did both a monthly payment and a year's worth of back pay, so it helped quite a bit. Sending strength and hope your way-Ann
thanks for this information In process of filling out now.
Renee0 -
How stressful this must beCarl_Renee said:good to know
thanks for this information In process of filling out now.
Renee
How stressful this must be for you. (((HUGS)))0 -
Sure have been thinking about you both daily and saying a prayer or two, and good vibes and all that. Hope things settle down soon and he's on the mend.Carl_Renee said:more tests possible another surgery
Today is worse bili is up to 31.4, but more importantly the dr. said right now is last night he started a rapid heartbeat so doing an EKG today, Albumin is down again as is his hemoglobin, Hematocrit is up, RBC down, WBC up. His stools have become dark indicating possible internal bleeding so scoping and possible another surgery on the horizon for him. So I may be on my way back to Denver. I finally came home Monday night. Also sounds like instead of just plasma they will be doing blood transfusion today.
Renee
PS thanks everyone for the prayers. Need them for his healing, my strength and the dr.s eyes/hands in his care. BTW yes I think someone mentioned hoping he is in a bigger hospital he is at a University rather than our smaller hospital. Which is bigger than what he started out at but not big enough for this case.
My heart goes out to you both, hang in there girl.
Winter Marie0
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