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meeting with docs today

Carl_Renee's picture
Carl_Renee
Posts: 84
Joined: Jun 2010

I personally had a mini meeting with one of Carls team docs yesterday morning and we are having a bigger meeting with the head surgeon, GI and radiology docs today so loooong meeting day. As of yesterday his bili was up to 28.4, I was worried about the BUN because it suddenly spiked, but he said that was in part due to them giving him so much diuretic for the edema so they were backing off that and we should see the numbers come down today on the BUN test. The added tests they did to check the red blood cells correspond with the bili that his liver just might not be viable. So todays meeting is basically where we go from here. I know as soon as they can get him to stand w/o passing out or bp going bonkers he will pretty much be sent home to live out what ever days he may have.

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

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

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 kitties

NJC
Posts: 72
Joined: Nov 2010

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

lauragb
Posts: 370
Joined: Aug 2011

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.

Laura

smokeyjoe
Posts: 1428
Joined: Feb 2011

Thinking of you, stay strong.

Carl_Renee's picture
Carl_Renee
Posts: 84
Joined: Jun 2010

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

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Praying for you both.

NJC
Posts: 72
Joined: Nov 2010

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

Carl_Renee's picture
Carl_Renee
Posts: 84
Joined: Jun 2010

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.

NJC
Posts: 72
Joined: Nov 2010

Hang in there...!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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.
My heart goes out to you both, hang in there girl.
Winter Marie

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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

Carl_Renee's picture
Carl_Renee
Posts: 84
Joined: Jun 2010

thanks for this information :) In process of filling out now.

Renee

smokeyjoe
Posts: 1428
Joined: Feb 2011

How stressful this must be for you. (((HUGS)))

janie1
Posts: 753
Joined: Apr 2011

Thinking and praying for you and Carl many times throughout the day.

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