Hi All,
I really need avice on this one, My husband is in the hospital and has been for 5 days now. No one can find out whats wrong and I am wondering if any of you guys have had something similar or experianced the same thing.

About a week ago hubby started to have a bit of confusion, wrong days etc, forgetful, I had a word with the doc and he said it was probably side effect of his pain medication which at that time was Fentynal? (sp) 100mg it had been upped to that dose due to alot of breakthrough pain, b4 he was on 50mg.
Fast forward 2 days...... Hubby was seen in the parking lot arriving home @ 5.30 am, when asked where he had been he didnt know, I had gone to sleep @ 4.30 am due to him being restless and he was alseep beside me. When I asked him later on where he had been, he said he thinks he went to rescue someone at the local boat ramp! More confusion sets in that day, that evening I came home from the store (slipped out to get his meds) and found him sweating and disorientated, I took his temp and it had rocketed to 103.3. I immediatly paged his radiation doc, who called me within minutes and told me take him to ER he will call in orders.
HE was seen within 2 mins of arriving, and after a battery of tests was given IV fluid, blood transfusion (2 units) urine tests,x-rays and antibiotics.... 6 hours later he was in a room, still wearing his pain patch, next day patch was removed at my request (doc agreed) as he was even more confused. not replaced with ANY pain meds but has some ordered if he needs it. More tests, head CT in case of bleeding in the brain, another unit of blood.
Fast forward again to today, his confusion is worse than ever, he tried to escape from the hospital many times dragging his IV behind him using the stairs,(8TH FLOOR) talks conspiracy against him, tried to get to the hospital kitchen to make soup,pulled IV out at least 6 times, tried getting his peg tube out, I could go on and on.
They thought it could be the meds still in his system, but he has been without for 3 full days now and confusion if anything is getting worse. Doc has ordered a whole load of new tests to be done today, in fact the nurse said she does not think there are many he left out!
He is 2 treatments away from completeing radiation, chemo is finshed (2weeks ago) and he is without all meds apart from magic mouthwash. Todays blood work shows another drop,(it had risen slightly yesterday) which would normally indicate another transfusion, doc is holding off till tests are complete. Could the confusion be from low blood count? Has anyone had this? Please advise and pretty worried now.

Sammie, I'm so sorry to read this--what an ordeal for you when he is almost through treatment. I know Amy from Arkansas said her husband could not take the fentanyl patch--it totally zoned him out-- and I know of people who get kind of crazy and paranoid like that on morphine (but you said he isn't on any pain meds right now?). Maybe someone else here can post something more helpful to you. It sounds like at least he is getting good medical care and they are trying to figure out causes.

I did have a high fever that put me in the hospital, lasted for 10 days, and began a day after my last radiation treatment and they never did figure out what specifically caused it (my take is it just was my body saying "this is too much"), though they tested for every possible infection/virus that could cause it. But I didn't have any of the confusion you mention (thank God).

I will keep you and your husband in my thoughts and hope things get better soon.

Nelie

From 50 mcg to 100 mcg is quite a leap. Typically Fentanyl is increased in 25mcg increments. My bloodwork was very low in both WBC and RBC (so what was in there anyway?!?!) but I can't remember being delusional (although my wife may differ with my opinion on that). Fentanyl does have a long half-life and also takes a full 24 hours to come up to speed.

I hate to bring this up but has he had an MRI of his brain to rule out it being tumor related?

This close to the end of radiation is when all sorts of "interesting" things can happen. Malnutrition, disfunctional immune system, thrush, dehydration, severe constipation, etc. It may well be a multidimensional problem. Certainly a 103 degree temperature, in it's own right, can make one delusional.

"My bloodwork was very low in both WBC and RBC (so what was in there anyway?!?!)"

I wondered the same thing when that was true of me while I was fighting that fever in the hospital. I told my spouse I apparently was close to haivng no blood cells....

Hi, Sammie, can't addres the blood count issues, but the Fentanyl patch is something I can address-as Nelie said- it put my husband into outer space-as did scopalimine [an experiment to dry up his excess mucous] and amitriptyline [to try to stop the headaches]. He went bonkers on each of them. You need to review each med he is taking for side effects and then review what mixture of meds. he is on. Our pharmacist was a great help to me in explaining each one and the effects [I also read the drug info carefully] We tried the fentanyl twice and both times got the same reaction- very scary and very upsetting. Good luck. Amy in the Ozarks

Thanks all for your replies.....I just got back from the hospital, I called his Doc, and went to his office for a family conference. Today he has had, Antibiotics, IV Fluids, magnisium and potassium, and they were just setting up 1 more unit of blood when I left.
Doc said MRI 2morrow, he will get the results same day as he has put a rush on it. He has no explanation for him being so confused, but if it continues, he will get a neurologist in to see him Monday. His drop in blood count he is putting down to chemo as everything else has been ruled out, however he did say he was going to consult with his other Docs later on in the day.
Will post updates when I get them
Thanks again for the input!
Sammie

Hi Sammie,

I'm sorry to be chiming in late but I think I might be able to add something to what's already been said. My Aunt Rosemary had trouble with all of her doses of Fentanyl except for her starter doses of 25mg that quickly became 50mg. At the time that she began to need Fentanyl in earnest, a couple of months before she left us, her blood levels as well as her electrolyte levels had already started going off normal. Any more than 50 mg of Fentanyl made her do things like going from being very tired and sleepy to talking non-stop. Then there was the week when she was feeling well enough to watch TV with Uncle Bob in the living room, and Nickelodeon being her favorite channel, she thought she was inside the TV and in the sitcom. She began acting out the shows all over the living room. She would also get up from her naps and get herself washed and dressed and leave the house. Lucky for her, most of the time her neighbor caught her roaming the street. Geez, I haven't thought about this in a while....... Uncle Bob said she used to empty the refrigerator and have food all over the kitchen counters, floor, every cabinet open. It sometimes took him two hours to clean the kitchen. It was all wild and wacky behavior. At one point the hospice people thought that the cancer had spread to her brain since it had already spread up the left side of her face causing palsy. Her whole face was twisted from the strain on the nerves and muscles from the tumor. Eventually they found that she had a collection of patches on the headboard and when she felt she needed another, she'd just slap another one on. They took her off of everything (she was on other things too) and started over. They left her on Lorazepam, Roxicet and Dilaudid until the Fentanyl cleared her system. When she really needed it most, she went back on it for the last two months.

It can cause much the same weird symtoms as morphine in some people. Aunt Ro couldn't tolerate straight morphine at all, although she did tolerate Dilaudid. I hope this helped. It's possible that this drug is not for your husband and it certainly can take longer to clear his system than the textbooks say it should. Everyone is an individual.

Hugs,
Lisa

I have just got in from the hospital,I am stunned and heartbroken at the same time. They wanted to take my DH for a MRI, and they gave him a mild sedative..........he had a very bad reaction, started choking,and possible had a fit / siezure of some type, rapid response was called, they tubed him and took him to CCU, where he now lies sedated again. They took a lumber puncture, blood, will do a EEG tomorrow. They don't whats wrong, they dont know why he is having such severe reactions to medications, they cant even tell me if he going to survive, they just said we cannot rule it out at this time.
They sent me home from CCU, and told me not to come back till tommorow so they can "settle" him.
I am driving myself crazy looking for answers.
Please pray for him.
Sammie

Wow. he obviously is having a terrible reaction to any kind of pain meds or sedatives. Is this sedative one he was taking already though? It might be the thing causing all the other problems.

This sounds like it is really hard on you Sammie. I hope you are able to get some rest tonight. I hope you won't take this the wrong way, but have you gotten any medication for *yourself* to help with sleep or anxiety? You can't be a good advocate for Richard if you are suffering from severe sleep deprivation or stress.

You are both in my prayers. I hope they figure out how to treat him and bring him back from the confusion really soon.....

Nelie

Dear Sammie

I am going through some similar stuff at the moment and i have to say it is terrifying.the macmillan cancer services have taken over robs palliative care,and started him on an infusion pump,the doctor thinks he is suffering from morphin toxiciy which is causing mental irritation so they will need to get him into a hospice for a few days when we go back to yorkshire to get him off the morphine but they cant do it at home because of the withdrawal sympoms so at present he has to have very small frequent doses.they started him on a new drug in the pump and after a few hours he started to show symptoms of confusion and strange behaviour.The doctor thought he may have thrown a secondary in his brain so prescribed steroids,but by last night he was all over the place and eventually ripped his pump to bits.the nurses came out at 2am and decided not to replace the pump,and by 4am he was back to normal and has slept for a few hours.
nobody seems to know what caused his problems as there are so many things in the mix so at the moment he is lucid but in pain again!!!!the macmillan doctor is coming tomorrow to try and sort it all out.

I feel for you Sammie as this is so frightening.I just hope you are getting as much support as we are.

love liz