feeling sorry for "me" today
AnonymousJanuary 10, 2007 at 5:57 pm
hi all. i’m dealing with all the residuals of gbs pretty well, as those of you who know me have seen my very positive posts, but i got a call from the liver specialist last night on his way home from the hospital on his cellphone. i have autoimmune hepatitis, brought on by my gbs. my liver enzymes have not been under control for about four years now. they go up and down with no rhyme or reason whatsoever. this specialist i see is head of the liver transplant center at albert einstein hospital in philadelphia, so i know i’m in good hands. anyway, i have an appt. with him on the 22nd and blood work next week. he said he’s now going to treat me as if i was one of his transplant patients, since he’s been treating me as an autoimmune patient and have responded slightly, but not enough. he wants to get more aggressive and these drugs he’s talking about are scaring the crap out of me. don’t remember the names of the drugs. just the side effects. so i guess i’m sorta feeling “sorry for myself” which doesn’t happen often, but haven’t i been through enough with the gbs? why this too? aghhh (screaming). sorry all. just needed to vent i guess.
AnonymousJanuary 10, 2007 at 7:04 pm
Would you do me a favour – and stop apologising because you needed to vent?
Yes, you have been through enough but now you are being asked to handle a little bit more. You know that you can – it is not easy but you can.
Whatever the drugs being suggested are, it sounds like you need a one-on-one real discussion with him.
What are the side-effects you mentioned? If you don’t take the drugs, what is the alternative – the possible outcome?
Are you a candidate for a liver transplant?
Your doc wants to get aggresive – do you think that that is a bad thing?
Whatever you decide, whatever you choose, I hope it works out well for you.
AnonymousJanuary 10, 2007 at 7:05 pm
Deb, don’t feel bad about venting. That’s one of the healthiest parts of this forum. People being able to get things temporarily out of your mind and on paper. What’s good for the mind is good for the body.
Sorry to hear you’ve had bad news. Sounds like you have a good hospital with people on your side.
I’ll send prayers you way…
AnonymousJanuary 10, 2007 at 7:18 pm
Deb, vent away friend!!! i can’t blame you for being apprehensive when it comes to meds. take a deep breathe or 5 and relax, you will be told more details when you see your dr. you trust him already, that is a big step out of the way already. i agree with ta-stop apologizing for venting-we all need to do it! don’t stress over the future, it will come soon enough. if you have questions, make sure you write them down and take the list with you to your appt. keep us updated deb. take care.
AnonymousJanuary 10, 2007 at 7:21 pm
Hey Deb, vent away if it makes you feel any better. I am following the same path as you with the Autoimmune Hepatitis. It wouldn’t hurt to get a second opinion on the treatment plan, some of those drugs are very scary and that way you know you are doing what is best. Message or email me anytime.
AnonymousJanuary 10, 2007 at 7:34 pm
hi! me again. i know the side affects for the two drugs he’s thinking about. they are: high blood pressure, high cholesteral, heart problems and kidney failure. of course the drug i’m on now has the side affects of: lymphoma and skin cancer. i’m glad he wants to really start treating me on the agressive side. we haven’t discussed a transplant because i’m really not symptomatic. i only have extreme fatigue, (which along with the gbs fatigue is pretty freakin’ tired). my ast and alt liver enzymes are pretty high. i’ve been logging them in on an excel spreadsheet called “debz liver log”. they’ve been yo yo-ing for the past four years. so i guess i’m just getting a bit “sick of being sick”. i really don’t get like this often. i’m usually the one who cheers up everyone else, but i guess today, it’s my turn. so come on gang, i need to hear from my gbs buddies.
love to you all,
AnonymousJanuary 10, 2007 at 7:36 pm
Venting is a beautiful thing. We all need to sometimes. I wish I had something comforting to say to you. I don’t have any medical problems so I can’t empathize with you in the same way some others on this forum can. All I can say is keep being brave and remember that things always get better.
AnonymousJanuary 10, 2007 at 9:37 pm
Hi Deb: You have been there for me in the past so if there is anything I can do let me know. It is hard having to face multiple diseases as many of us know. I am the bionic man at night with a mask for sleep apnea and the wrist supports on my wrists for carpal tunnel and my trusty thermometer to keep track of my fevers, etc. So you can vent away for yourself and for all of us at once. But I would rather have a doctor taking my symptoms seriously than one who ignores them, so it might be good to have an aggressive doctor. Anyway, hang in there and like I said if you need anything I can do ask-you can email me. Jeff
AnonymousJanuary 10, 2007 at 10:39 pm
No apologies for venting required here.
Sorry to hear you have a new problem to deal with, but it does sound like your doctor is on top of it.
As Jerimy said, get informed, then decide what you should do.
Meanwhile, vent away to us, and know that we are here to help.
AnonymousJanuary 11, 2007 at 1:44 pm
I can only imagine how freaked out I would be if I were in your shoes. On one hand it is great that the doctor is on top of things and taking time to call you from his personal cell phone – you should feel privileged. On the other hand, the doc gave you too much time to worry about it all. I know you wish all this would just go away and go back to dealing with the GBS stuff you are used to. Denial and I are very good friends. Take a break for 5 minutes and join us in a nice nap.
Sending you hugs and prayers!
AnonymousJanuary 11, 2007 at 11:31 pm
Deb, as you can see, we are all here for you. Venting is a way to get out that hard-to-take news from your doctor. Get a second opinion. My neuro wants me to see a rheumatologist, which I have been putting off because I’m tired of doctors. I’lm going to call tomorrow for an appointment. It;s better to face it than to put it off. The factthat your doctor called you from his cell phone is alarming and you have every right tp vent. This group has helped me get over some depressing news and if my memory doesn’t fail me, you were among them. Keep us informed. You are in my prayers.
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