Bleeding Varices Again?? or what??

tc_sis

We woke up yesterday morning to brother, (stage 4 liver w/spinal mets,varices, acites and edema)coughing up blood and passing it in his stool. It has been around 4 wks. since he was over coagulated for pulmonary embolism and bled profusely from varices. At that time they took him off of all blood thinners and banded several varicies, replaced part of the blood volume he had lost by transfusion, which led to extreme ascites and edema. To every treatment the seem to be a new set of issues/risks.

The GI team promptly came to see him,soon after our arrival at the ER yeaterday morning. they were concerned that the blood may be coming from his lungs or somewhere else but postponed any procedure until today. Over night he seemed to be bleeding out at a faster rate and was given 2 pints of blood. They are coming to do an en exploratory endoscopy at noon today.Hoping that it is more varices that they can simply band. Is it common for someone to have bleeding varices repeat so soon?

What if it's not? What if the blood is in fact coming from his lungs or somewhere else?? So many questions, so few answers. He is already miserable with all of this, and the spinal mets are a major source of pain, along with the discomfort of the ascites. We realize that the ascites will increase with transfusion this time. It is just so hard to wait and worry, and watch him be so afraid.

We have access to all of his labs and radiology reports online, a service that our Dr. and hospital provide. I wait and watch as his numbers drop, as we know when the PCV reaches 25 it is time for blood, the won't replace all of the volume of lost blood as it would create more pressure and cause him to bleed faster. It is just so very troubling. We are helpless and just wait til noon for answers.

Thanks for letting me vent and try to make some sense. We know his time left with us is short lived but want to make everylast minute count and for him to feel that he is getting the very best care.
Tc_sis

grandmafay

Hang in There
These unknowns are so hard to deal with. Hope all the tests etc go well today. Thinking of all of you. Fay

tc_sis

grandmafay said:

Hang in There
These unknowns are so hard to deal with. Hope all the tests etc go well today. Thinking of all of you. Fay

Thanks
Thankyou Fay for your kind words and thoughts. After a long day they finally took him to do the procedure. The frustration would not end there... the Doc never spoke to us afterwards. The nurse finally told us that she knew that they banded 4 new varices, but that was all she knew. We were told that because Brother is an inpatient that the Doc would speak to us when he made his morning rounds.

I am so grateful for the access to online medical records, I was at least able to watch his blood counts over night.At first they were still dropping but it seems that they have leveled off as of 4 am. Hopefully the bleeding has stopped or at least has slowed down alot.

Thanks Again
tc_sis

grandmafay

tc_sis said:

Thanks
Thankyou Fay for your kind words and thoughts. After a long day they finally took him to do the procedure. The frustration would not end there... the Doc never spoke to us afterwards. The nurse finally told us that she knew that they banded 4 new varices, but that was all she knew. We were told that because Brother is an inpatient that the Doc would speak to us when he made his morning rounds.

I am so grateful for the access to online medical records, I was at least able to watch his blood counts over night.At first they were still dropping but it seems that they have leveled off as of 4 am. Hopefully the bleeding has stopped or at least has slowed down alot.

Thanks Again
tc_sis

Unknowns
I hope you were able to corner the dr today. What was he thinking not to talk to you after the procedure?! The waiting without answers is one of the hardest things. We once got a phone message that the dr needed to talk to us on a Friday afternoon. Of course, the dr had left for the weekend by the time we got the message. I let him know what a difficult weekend that was for us. He hadn't even thought about it when he left the message. You do need to be the squeaky wheel. I learned to ask the hard questions and insist on answers. It sounds like you are doing that, too. Take care, Fay

tc_sis

Home again
The bleeding has stopped for now, and we are home again. The thing with Vanderbilt Hospital is that although you get wonderful care, there are so many doctors that work in teams with students.Sometimes it is almost like having a second or third opinion, which has both advantages and draw backs.Last time we were there one of the Docs gave my brother false hope about resuming chemo...before he knew all of the facts.

Because TC's situation was an emergency we saw the available doc, not our regular GI team. This morning the TEAM decends on his room like an army, explained everything in great detail, telling us that it is not uncommon to have reoccurance of variceal bleeding so soon. Of course they also reminded us that this is just one of the many complications that makes his prognosis so dire.

So for now we are back in the comfort of his home, knowing that each passing day is one day closer to the next thing, whatever it may be. It is just really hard to look at him and see the questions and distress in eyes. He has become so restless and anxious,he takes an extremely high dose of pain medication in addition to the fentanyl patches and is still unable to sleep more than a few minutes at a time. Sometimes he will remark that he is afraid he will not wake up.

I am sorry to ramble so, but it does seem that our family and friends don't want to know any specifics, just a general how's he doing. I know that they know his time is short and that's all they care to know.

Connie (tc_sis)

grandmafay

tc_sis said:

Home again
The bleeding has stopped for now, and we are home again. The thing with Vanderbilt Hospital is that although you get wonderful care, there are so many doctors that work in teams with students.Sometimes it is almost like having a second or third opinion, which has both advantages and draw backs.Last time we were there one of the Docs gave my brother false hope about resuming chemo...before he knew all of the facts.

Because TC's situation was an emergency we saw the available doc, not our regular GI team. This morning the TEAM decends on his room like an army, explained everything in great detail, telling us that it is not uncommon to have reoccurance of variceal bleeding so soon. Of course they also reminded us that this is just one of the many complications that makes his prognosis so dire.

So for now we are back in the comfort of his home, knowing that each passing day is one day closer to the next thing, whatever it may be. It is just really hard to look at him and see the questions and distress in eyes. He has become so restless and anxious,he takes an extremely high dose of pain medication in addition to the fentanyl patches and is still unable to sleep more than a few minutes at a time. Sometimes he will remark that he is afraid he will not wake up.

I am sorry to ramble so, but it does seem that our family and friends don't want to know any specifics, just a general how's he doing. I know that they know his time is short and that's all they care to know.

Connie (tc_sis)

Some Peace
Connie,
I am glad you have found some peace now at home. We went to the University of California, San Francisco and had similar experience with teams. My husband got really good care there and was able to buy a little more time. That is how he looked at his care. He knew from the beginning that he was just buying time and tried to buy as much as possible. Doug had a very strong faith which helped him accept that. At least you have a better idea of what is happening now. I'm glad the team took time to explain everything. Some people really can't deal with the details. I'm glad you are there for your brother. I'm sure he is, too. Fay