Aa
JmJm, HR ...and all
Last Friday at work ...i couldn't keep my mouth shut. Things kept popping out...surprised even me. I did go in to work on a temporary basis and still felt I had little or no control of what I was saying. looking back...I sorta see now that i had impaired cognitive thought and motor skills. It feels somewhat like I lost my mind.I wrote some stuff down and it iwas pure gibberish. I called my so called friend/ex...couldn't get him to leave the warm covers of his new g/f's bed. Luckily I had a neighbors number on cell phone and he called an ambulance..My hemoglobin and neutrophils were critically low...I don't have the numbers.Two transfusions were performed.They started me on Procrtic there in hsop. In the ambulance I had a grand mal seizure (thankfully, I don't recall it) They also put me on Phenobarbitol...what's that? The highly toxic ammonia levels I was informed were the cause of effecting my speech and mental faculties. I see a neurosurgeon tomorrow. I did have a brain catscan that showed vessel abnormalities. Hep Dr. met me @ hosp. and dropped down the riba..til tests come back. I am still having trouble with getting thoughts out and reading and writing. Dr. wants me at this point to stop the double dosing. Anyone hear of this happening to anyone else or anything similiar? Hospital did not want to sign release forms...until I expalined I would have someone stay with me... I just wanted outta there...but it would have been nice if someone besides my dog and cats were looking out for me. My dog Bugsy is now blind and deaf...not much help there. And the kitty cats...only want what they want when they want it. If they don't get there way...there go the Christmas lights.Glad to have them around me anyway It's a bit concerning. I wouldn't have known about a seizure unless the medics hadn't informed the dr.s...so of course, I'm thinkin' it could happen here at home. Better stay nicely dressed with makeup on...house tidy....get the piles of laundry done....before they put out the yellow tape.
I just hope you get this resolved really quick...hugs to you and all you've been though...you know, HR doesn't really read this side...if you want his take, maybe post it on the other side? get better soon....
Thanks for all your kind words and warm wishes. I don't have many answers yet...but am still txing at lower dosage and hgb and neuts are still low, don't remember the #'s.. I have major brain fog ans a difficult time typing presently. Hopefully, tomorrow will be better.
Sincerely,
y
i think I said seeing a neurosurgeon...ha ha...meant neurologist.
Sincerely,
y
i think I said seeing a neurosurgeon...ha ha...meant neurologist.
I am so worried for you.
i agree with Lonestar that it doesn't sound safe for you to live alone right now, until you can get stabilized.
Maybe you could get someone (pay someone if necessary) to check on you regularly; help with errands, pet care, etc.
I know what you mean about having the house tidy and neat just in case. . .
I haven't had anything like what you've gone through, but after my move, 6 months ago, i had a couple of very scary episodes and i was terrified that I was going to end up in the hospital after passing out in a store, or while driving. . . . .
At the very least you NEED someone you can call. The cognitive problems seem to be somnething we all experience to a much lower degree than you. . . .
Please take care. you are in my thoughts.
wyntre.
i agree with Lonestar that it doesn't sound safe for you to live alone right now, until you can get stabilized.
Maybe you could get someone (pay someone if necessary) to check on you regularly; help with errands, pet care, etc.
I know what you mean about having the house tidy and neat just in case. . .
I haven't had anything like what you've gone through, but after my move, 6 months ago, i had a couple of very scary episodes and i was terrified that I was going to end up in the hospital after passing out in a store, or while driving. . . . .
At the very least you NEED someone you can call. The cognitive problems seem to be somnething we all experience to a much lower degree than you. . . .
Please take care. you are in my thoughts.
wyntre.
I think I remember and thanks for bringing that to my attention. It's possible that the added interferon is causing this but that is just speculation. I truly hope her doctors evaluate things carefully and make sure it's safe for her to continue with treatment. Given her slow viral response, and the fact that she does not have significant liver damage, it's possible at this point that treatment is doing her more harm than good. That is what I would be asking the doctors right now if in her position.
--Jim
--Jim
Ladywhy is at or approaching her 40th week of treatment. She sees a Hepatologist in Philly I believe. Lady is the one who still had a vl of 1300 something at week 24. From there her hep doctor has had her double dosing the peg. I'm not sure if she is undetected yet.
i was very sorry to hear of your experience...very scary indeed...they put my daughter on phenobarb after she experienced siezures, now she is taking someting else for her siezures (trileptal)
i live about 15 minutes out of phila, where are you located? i sure hope things get better for you, it does sound like the chemo brain my mom experienced after her chemo tx.....
i wish you the best and will keep you in my prayers...
chelley
i live about 15 minutes out of phila, where are you located? i sure hope things get better for you, it does sound like the chemo brain my mom experienced after her chemo tx.....
i wish you the best and will keep you in my prayers...
chelley
Wow I've never heard of anything like this happening before and it blows my mind - thank God you had a great neighbor and were able to get help pronto. How scary, I can't imagine.
As Jim said I can relate to the grasping for words (or forgetting how to spell the word "how" for example) but this is just beyond anything I've ever heard of before. I never heard it related to amonia levels in anyway.
I am very curious to see what your hemo level was. It must have dropped so hard so fast - mine did drop extremely hard and fast as well but NOTHING like this AT ALL. I just can't imagine this.
I'm so sorry this is all happening to you, my God you are one strong tough cookie to be able to keep on keeping on.
God bless you Lady. Our thoughts and prayers are with you.
As Jim said I can relate to the grasping for words (or forgetting how to spell the word "how" for example) but this is just beyond anything I've ever heard of before. I never heard it related to amonia levels in anyway.
I am very curious to see what your hemo level was. It must have dropped so hard so fast - mine did drop extremely hard and fast as well but NOTHING like this AT ALL. I just can't imagine this.
I'm so sorry this is all happening to you, my God you are one strong tough cookie to be able to keep on keeping on.
God bless you Lady. Our thoughts and prayers are with you.
I'm very sorry what happened, sounds very scary. Obviously, your hemoglobin was very low or they wouldn't have done a transfusion. Maybe you can supply us with some hemoglobin numbers -- both at the hospital before the transfusion and some previous numbers -- after you start feeling better.
Beyond that, it's really beyond the scope of my knowledge what is going on. The closest thing I can relate to are mood swings on treatment and what I used to call "grasping for common words" which is quite common on treatment, but I never heard that related to ammonia levels, just the interferon and my word problems were very minor compared to what you described.
Cognitive problems often come with treatment and hopefully your medical team will come up with exactly what is going on and what is causing what. Don't remember if you're seeing a hepatologist or GI -- but at this point, you probably want to consult with a hepatologist on the treatment end, just to get as much experience as possible on your side and also to make sure the treatment drugs aren't doing you more harm than good at this point.
Speaking of which, forgot where you are in treatment? What week are you on, what was your pre-tx viral load and did you have a week 4 test? Possibly, if you had an RVR at week 4, you still could have a good chance of SVR with shorter tx, if it's determined that the treatment drugs are causing all these things.
Hope you feel better soon and please let all of us know how things are going whenever you feel like posting.
-- Jim
Beyond that, it's really beyond the scope of my knowledge what is going on. The closest thing I can relate to are mood swings on treatment and what I used to call "grasping for common words" which is quite common on treatment, but I never heard that related to ammonia levels, just the interferon and my word problems were very minor compared to what you described.
Cognitive problems often come with treatment and hopefully your medical team will come up with exactly what is going on and what is causing what. Don't remember if you're seeing a hepatologist or GI -- but at this point, you probably want to consult with a hepatologist on the treatment end, just to get as much experience as possible on your side and also to make sure the treatment drugs aren't doing you more harm than good at this point.
Speaking of which, forgot where you are in treatment? What week are you on, what was your pre-tx viral load and did you have a week 4 test? Possibly, if you had an RVR at week 4, you still could have a good chance of SVR with shorter tx, if it's determined that the treatment drugs are causing all these things.
Hope you feel better soon and please let all of us know how things are going whenever you feel like posting.
-- Jim
I'm sorry for all your troubles....and I'm frustrated at waiting for treament...how miniscule. Are there any homecare options available for you? Even someone to look in on you sometimes...friendly visitor kind of thing? Hopefully your care team can help in that regard to find resources for you? I don't know your details or how much longer you have to go....I just hope this is the worst it gets and that it's all uphill from here. Please post how you're making out......will be thinking of you.
Trish
Trish
I know you live underground nowadays but come up here and help out our LadyWhy. I miss you.
R
Dearest Y, I should have known something was wrong. Actually, of course I did know from speaking with you. I know first hand what this ether like existence is. I lived it for months. I had always thought that this state must be what is referred to as chemo brain. The forgetfulness after months on treatment, then the losing of the car in the parking lot, always forgetting what I went to the store for and the where'd I put my car keys syndrome phase was quite bad enough. Later on though I felt like I lived inside some bizarre theatre. Like someone shouted from a darkened balcony, "Will the real chemo brain please stand up?" And sure enough, it revealed itself and stood. I wasn't ever able to communicate this to my doctor or anyone else. I didn't know how and if I had known I wouldn't have had the strength to do it. I'm not sure Y. Maybe the first phase of simple forgetfulness is the brain fog and what we experienced is something more serious. At least you have this forum and all of us here to listen to you. I'm even nervous typing too much for you because I remember forgetting how to read and write and all these small letters strung together in single spaced lines would terrify me.
I'm so sorry I've privately ranted on and on to you about your treatment. Maybe it's partly selfish because what you are experiencing brings back too many buried memories for me to deal with.
That ex isn't ever going to get it Y. Every time I think of him spouting scripture at you the most evil thoughts rear their ugly head in my brain. Your doctor is two hours away from you. It's a rotten time of year to move but I don't see how you can stay there alone.
I'll try not to ask too many questions but does your doctor want to see you sooner now that this has happened to you other than telephone messages?
Is it possible for you to stay with one of your sisters at least through the winter?
Is it possible for you to scrap this current treatment, give yourself some breathing room and start again? If you were in a safe and supportive environment I wouldn't be so worried about you. I'm rambling, I know. Again I'm so sorry I've ranted and raved at you. I'm racing out the door early this chilly morning but I will look for you later.
Much love Y,
your
R
Please let us all know what the doctor said. Please keep us posted as to whats going on.
Charm27
Charm27
i am so sorry you had to go thru all this pain and stress and more. Please take care of yourself and I will pray. Again Im so sorry.
Charm27
Charm27
Without going into all the details bt when I began tx, I have been dealing with an ENORMEOUS amt. of stress. Could this have contributed to this episode?
Prior to this weekend, Hmglobin and Neutrophills were holding...I do have the wb's # 2.1
"It feels somewhat like I lost my mind"..though I never had one, i did witness a mild stroke...and I seemed to be going around like that trying to get someone on the phone. I really did not want an ambulance...embarrassed as well as the expense...they transferred me to a local Hosp. and then to the one in Philadephia. Any ideas aout what other tests i might rbring to their attention.
Thanks for any input. I feel dyslexic..honestly, This has taken so long to write.
Prior to this weekend, Hmglobin and Neutrophills were holding...I do have the wb's # 2.1
"It feels somewhat like I lost my mind"..though I never had one, i did witness a mild stroke...and I seemed to be going around like that trying to get someone on the phone. I really did not want an ambulance...embarrassed as well as the expense...they transferred me to a local Hosp. and then to the one in Philadephia. Any ideas aout what other tests i might rbring to their attention.
Thanks for any input. I feel dyslexic..honestly, This has taken so long to write.
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