Panic attack
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Thank you Kris for these kind words. Please, keep us updated with your resection.
PS I took sometimes alprazolam as well if I feel hopeless
Hughs
JoseJose:
Your sister is so lucky to have family members there for her. It’s really good that you are asking so many questions on her behalf.
All I can say is she needs you so stay strong for her, but don’t forget to worry about yourselves. You can’t help her if you get sick.
Good luck.Hi Kris and Lisa,
Thank you for your posts. Yes I think you are taking Lorazepam which is within the same family of benzodiazepines than Xanax (alprazolam). She is taking now this medicine and she is doing fine at night with panick attacks. We are taking shifts to take care of her during night. It’s really hard.
Kris, good luck with your resection. Everything will be fine.
Hughs
JoseJose, I take Ativan at night and it really helps. At one point I thought I was having an anxiety attack and was having trouble breathing and it turned out to be fluid and a collapsed lung. I would make sure the doctor is familiar with CC and if not find a new one. No one should have to suffer like this.
LisaJose:
I got a prescription for Ativan when I was first diagnosed but it didn’t really help. It made me cry more. I just live with the attacks. I don’t have full fledged panic attacks… usually I just get an anxiety attack: I get depressed all of a sudden and start crying. I’m almost always alone when it happens so it isn’t bad or embarrassing. And if my boyfriend is here he holds me until I’m done. I try ureally hard to not let it get me down for more than 10-15 minutes.
It’s getting harder now, though, since my resection is scheduled for 2 weeks away and I’m getting scared.
Compared to most of the other people on this site, I am pretty healthy except for this darned tumor. I’ve been in and out of the hospital quite a few times this past year; mostly for blood infections or “unknown” reasons. But except for a few bouts of pneumonia and some other side effects, I’ve been able to keep a little active and visit with friends. I’m currently fighting pneumonia again so I’m housebound and getting depressed about it.Oh, and all my drugs are tylenol based, which means harder on the liver. But I have a hepatic infusion pump so I can’t take blood thinners. So I take tylenol based products. And I do take Ambien CR when I’m not on other drugs to help me sleep.
I hope this helped.
Good point Marion. Certainly, the main obstacle for paracentesis was that it was incredible painful for her, with local anestesya. There must be something wrong here…I am going to find out talking to her physician. Thanks for the information.
Hughs
JoseJose…..I don’t understand why the paracentesis was so painful for your sister? People have mentioned discomfort, but I don’t recall anyone speaking of absolute pain. This leads me to believe that whoever did the draining was not experienced to do so.
In regards to frequency of paracentesis: Our Sophie underwent the procedure for more than 1 year, weekly. She may have been the exception rather than the rule however; this is something you will want to discuss with the physician. Keep your aggressive stance, Jose. You are doing a wonderful job.
Hugs,
MarionI see Julia, thanks for the information. Sometimes I wonder if there were a way to replace somehow the liver function, using drains and duiretics…this would be ideal. I see that we have here a double battle: against tumor and avoiding an hepatic failure.
Jose, my sister has only been drained for ascites once, but they drained 9 litres over 3 or 4 days. I don’t remember her saying it was any more painful than any of the other drains she’s had, but the toxin build-up was affecting her quite badly and she was “out-of-it” much of the time.
I think she may need draining again soon, though. She legs are very swollen again and that’s how it started last time.
Julia x
Thank you to all of you for your support. I just want to know if she can be drained often and painless. This will help a LOT to her quality of life. Also I have some doubts about nutrition but I think there is an specific link for this.
Jose
kris00j wrote:Jose:
My personal experience: I used to sleep in total darkness with no light or noise. Since my diagnosis I need the TV on. I leave the sound on really low but when I wake up during the night I find it comforting to have the tv as a companion.
I don’t know if your sister can sleep all night, but I only get 2 or 3 hours at a time between waking up.
As for the medical problems, I wish I could help you. I hope you and your sister find a doctor that can help her.Yes Kris, this is very similar to her pattern of behaviour. One thing: Do you take anything to control your anxiety?
Hughs
JoseLalupes wrote:Jose, when my sister had ascites, her breathing sounded terrifying to me; she wheezed and rattled and I couldn’t believe anyone could breathe so badly and yet still take in enough oxygen to stay alive. The doctors said the build-up of fluid in her abdomen was pressing on her diaphragm and compressing her lungs but that she was still managing to absorb enough oxygen to keep all her organs functioning.Once the fluid was drained, her breathing went back to normal.
I do hope you can talk to someone who can give you some answers. My sister likes a light on all night, too, and to have the doors open between our bedrooms, so she knows I’m near. I’ve taken to sleeping with an eye-mask, as I can’t sleep with too much light. That way, we’re both as comfortable as possible.
What an amazing brother you are. Hugs to you both.
Julia x
Thank you very much Julia. Please, tell me: how often is your sister drained? With paracentesis? How do they deal with the pain?
Hughs
Josemarions wrote:Jose….Please, help me understand: have you spoken with her treating physician? Has he/she treated patients with liver disease? Has the ascities been addressed? Diuretics, has it been mentioned? Draining of abdominal fluids (Paracentesis) has it been discussed?
I would not worry too much about taking drugs and the possible side effects. It is of most importance that your sister is made comfortable.
Jose, if her abdominal fluid is increasing at this rate then your sister needs to be seen by a physician, who understands liver disease.
If not available then I would consider taking her to a hospital. I am not a doctor however; I believe that the increased pressure caused by the fluid may make it difficult for her to breath. I also believe that it is important to have a “frank” discussion with the doctor. You are a wonderful brother; may you have continuous strength to draw from.
Hugs and love,
MarionThank you for your kind words Marion, now, let me reply your questions:
1- Yes. During the night a GP from the emergency room (A&E) of the NHS come along, provide her with alprazolam, checked that she was alright and left. In the noon next day still without any sleep and absolutely weak and full of anguish she talked to her oncologist. He said: “OK, you have a panic attach, you can breathe…” and he prescribed her alprazolam. 2- I don’t know if this oncologist has treated patients with liver disease but I guess he does not ignore the effect of these medicines on liver diseases… he might think it’s a trade off and its worthy to use it…3- My sister is taking diuretics. At the beginning it worked and the swallowed abdomen shrinks BUT recently it exploded again. However, in the morning it was 4 centimeters less. I believe that a paracentesis will suit her well but its extremely painful for her (She had it once, two liters). So here is another question: Is it possible to live with periodical paracentesis, lets say one every other week? and more: Is it possible to use total anesthesia for this procedure? The main problem is that local anesthesia did not work too much and she suffered with the extraction
Thank you very much Marion
HughsJose:
My personal experience: I used to sleep in total darkness with no light or noise. Since my diagnosis I need the TV on. I leave the sound on really low but when I wake up during the night I find it comforting to have the tv as a companion.
I don’t know if your sister can sleep all night, but I only get 2 or 3 hours at a time between waking up.
As for the medical problems, I wish I could help you. I hope you and your sister find a doctor that can help her.Jose, when my sister had ascites, her breathing sounded terrifying to me; she wheezed and rattled and I couldn’t believe anyone could breathe so badly and yet still take in enough oxygen to stay alive. The doctors said the build-up of fluid in her abdomen was pressing on her diaphragm and compressing her lungs but that she was still managing to absorb enough oxygen to keep all her organs functioning.
Once the fluid was drained, her breathing went back to normal.
I do hope you can talk to someone who can give you some answers. My sister likes a light on all night, too, and to have the doors open between our bedrooms, so she knows I’m near. I’ve taken to sleeping with an eye-mask, as I can’t sleep with too much light. That way, we’re both as comfortable as possible.
What an amazing brother you are. Hugs to you both.
Julia x
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